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Research – Journal of Humanities in Rehabilitation https://jhrehabredesign.ecdsdev.org A creative exploration of the human experience of disability and healing Tue, 02 Sep 2025 20:16:54 +0000 en-US hourly 1 https://wordpress.org/?v=7.0 Can Swearing Be Professional and Patient-Centered? https://jhrehabredesign.ecdsdev.org/2024/04/12/can-swearing-be-professional-and-patient-centered/ Fri, 12 Apr 2024 20:32:27 +0000 https://jhrehabredesign.ecdsdev.org/?p=10357

Can Swearing Be Professional and Patient-Centered?

Nicholas B. Washmuth, DPT & Adam Meakins, PT & Richard Stephens, PhD & Garrett Trummer, DPT
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Table of Contents

As a faculty member in a physical therapist education program, I was introduced to the positive effects of swearing in 2019 when a student sent me a manuscript by Stephens et al,1 “Effect of Swearing on Strength and Power Performance,” discovering that swearing can enhance physical performance. I received this article somewhat humorously, as the student was jokingly suggesting that swearing deserves attention in the physical therapy setting. Although my attention was drawn to this manuscript amusingly, it had a profound impact on my research direction, raising more questions than it answered. A quick literature search to explore this newfound curiosity revealed that swearing is associated with not only improvements in physical performance, but a decrease in pain perception,2–6 heightened humor,7 conveying credibility,8 enhancing solidarity and rapport building,7,9–11 and improvements in memory and recall.12,13

It became evident that swearing is associated with positive physiological, psychological, and social effects that other forms of language could not replicate. For example, swearing has been found to increase pain threshold,3–5 increase pain tolerance,2–6 and even decrease social pain6 or the feeling of suffering brought on when social connections are lost or threatened. It was originally proposed that the mechanism by which swearing produces these hypoalgesic effects is an increase in sympathetic activation.2,3 However, other studies have found a lack of sympathetic activation even when swearing produced a decrease in pain perception.4,5 Although swearing possesses a unique power, it is currently unknown from where swearing gets its power. It has been hypothesized that positive associations between swearing and physiological, psychological, and social effects are mediated by emotion, humor, distraction, aggression, state disinhibition, psychological flow, risky behavior, self-confidence, and sympathetic activation.2–5,14,15 It is plausible that there is a combination of mechanisms behind swearing’s power, or that the mechanisms differ depending on the contexts of the situation. My research subsequently shifted toward understanding when, how, and if swearing could be strategically employed to enhance patient outcomes.

There is little discussion or research on the possibility that swearing may actually be considered professional and patient-centered when used in the appropriate context: with the right patient, at the right time, and for the right reason. In workplace settings, the use of the word “fuck” has been correlated with improved solidarity among co-workers.9 In the classroom, professor swearing is rated as appropriate when it is directed at course content to emphasize a concept.16 The context of every patient-physical therapist interaction is unique, and the appropriateness and effectiveness of certain behaviors will vary from clinic to clinic and from physical therapist to physical therapist.

The prevailing belief is that swearing by a physical therapist is inherently negative; however, swearing may be useful and perceived as appropriate given particular contextual factors. Anecdotally, physical therapists use swearing in certain situations. One example is presented below as a case vignette, describing how swearing was used by a physical therapist with the intention of portraying professionalism and patient-centeredness.

Case Vignette

‘Phoebe’ is an independent, confident, and athletic Caucasian woman. At the age of 25, she had never experienced a significant injury or illness and was renowned for her dedication to fitness; it was an integral part of her identity. However, her life took a dramatic turn over the course of 6 months. Phoebe began to battle an issue that was not only growing increasingly severe but also remarkably difficult to talk about. It was an issue that made her feel vulnerable, exposed, and overwhelmed with fear and embarrassment. For months, she had been silently contending with stress incontinence.

Initially, Phoebe’s stress incontinence had been relatively mild, and she was able to manage it by making modifications to her exercise routine and relying on pads. Unfortunately, it worsened to a point where it became unpredictable and far more severe, limiting her ability to work out. This strain on her identity was particularly profound. After years of daily visits to the gym, Phoebe found herself missing entire weeks of exercise, and her stress incontinence showed no signs of improvement.

Summoning the courage to seek help, Phoebe consulted a 33-year-old Caucasian male physical therapist whose clinic is next to her gym and has a reputation for treating athletes and fitness enthusiasts. During this consultation, she confidently shared her unfiltered history of stress incontinence, her goal of returning to her fitness pursuits, and her overarching desire to reclaim her sense of self. After listening and processing Phoebe’s narrative, the physical therapist said “This must be fucking tough for you.” The physical therapist observed an initial silent pause and expressionless body language from Phoebe, which he interpreted as being shocked by his use of an expletive. The physical therapist then described a quick transformation from Phoebe observed by her warm smile, open posture, and relaxed demeanor, which was interpreted as being acknowledged, heard, and understood.  Encouraged by this positive response, the physical therapist occasionally utilized swearing as a tool to sustain this rapport and social connectedness throughout the episode of physical therapy care.

While her name and specific details have been altered here, Phoebe’s case is based on real events. Phoebe experienced a successful episode of physical therapy, achieving clinical outcomes that aligned with the expected prognosis of her health condition. Notably, Phoebe had a 100% arrival rate and routinely arrived early to her physical therapy appointments. Although it was challenging for the physical therapist to convey these changes qualitatively, there was a discernible positive shift observed in how Phoebe interacted with her physical therapist immediately after he swore. This prompts the question: If swearing is inherently negative, why were there no apparent adverse consequences? Furthermore, why did the physical therapist perceive an enhanced social connection with the patient after swearing, potentially influencing Phoebe’s arrival rate and the positive shift in interactions? In the absence of empirical evidence, this case serves as a catalyst for reflection on the strategic use of swearing by a physical therapist.

Reflections on Strategic Swearing

A candid reflection of the case described above reveals that Phoebe’s clinical outcomes aligned with the prognosis of her health condition, suggesting that swearing did not significantly impact the outcomes. However, it’s worth noting that the physical therapist involved in this case considered the use of swearing to be both indicated and professional. This reflective narrative has its limitations. Primarily, this reflection is subjective and is influenced by the authors’ perspectives, leading to potential biases in interpretation and reporting. Consequently, this case cannot be generalized to broader clinical scenarios. Despite these limitations, this reflection aims to present a clinical approach that does not yet have a body of evidence to guide decision making, and to offer a ‘proof of concept’ for an approach with potential efficacy.[/vc_column_text][vc_custom_heading text=”Why did the physical therapist feel it was indicated and professional to swear with the patient? ” font_container=”tag:h4|text_align:left”][vc_column_text]Phoebe presented to physical therapy with strong emotions, including a disconnection from her identity. The physical therapist faced the challenge of demonstrating genuine empathy toward the emotional state of the patient. Swearing, by definition, involves using emotionally-charged language that may be taboo in a particular culture.7 In this context, the swearing used by the physical therapist served as a tool to convey their understanding of the patient’s emotional experience and to build a therapeutic alliance based on the shared comprehension of the patient’s feelings and goals.

Swearing is generally viewed by many as unprofessional. The American Physical Therapy Association’s Code of Ethics emphasizes the importance of respecting the inherent dignity and rights of all individuals and maintaining integrity in relationships with patients.17 This Code highlights physical therapists’ fundamental duty to empower, educate, and support their patients.17 However, no ethical code can comprehensively address every situation. For instance, the appropriateness of specific language used by a physical therapist may be perceived differently by different patients, potentially having either a positive or negative impact. It’s crucial to recognize that the words used by physical therapists have the potential to affect social, psychological, and biological factors,18 either strengthening or weakening the therapeutic alliance,19 and causing either healing or harm.18,20

In Phoebe’s case, swearing served as a strategy to adopt a patient-centered approach. Patient-centered care involves tailoring care to a specific patient’s values and preferences, with the ultimate goal of empowering the patient.21 For strategic swearing to be effective, physical therapists must carefully consider the context in which it occurs. Although Phoebe’s specific attitude toward swearing was not explicitly explored by the physical therapist, it was the contextual understanding of her emotional state that prompted the physical therapist to swear, thereby demonstrating a shared empathy for her strong desire to reclaim her identity. It is worth noting that disciplinary actions have been taken against medical providers for their use of swearing, but most of these instances involve swearing out of frustration or anger, rather than a means to foster positive social connections.22,23 Recent evidence has suggested that ‘clout’ words, or words used to evoke a sense of importance or impact, are perceived by patients as patient-centered.24 The swearing utilized by the physical therapist may be considered a form of clout language and, therefore, a strategy for patient-centeredness.

The authority to swear may be related to the power dynamics within the patient-provider hierarchical structure.25 Although the physical therapist in this case did not feel entitled to swear, citing its lesser appropriateness in formal environments,26 it is important to acknowledge the existing hierarchy between patients and providers. This hierarchy, often associated with power imbalances, makes it more likely for a doctor to swear at a nurse than a nurse to swear at a doctor.25 Additionally, certain cues from Phoebe, such as smiling after the physical therapist swore, may suggest that the she was ‘dancing to the physical therapist’s tune’—feeling forced to accept the swearing due to the power dynamics of the physical therapist-patient relationship. The physical therapist found that the emotional nature of the case, coupled with the intention of strengthening the social connection, justified and exemplified the professionalism of strategic swearing.

And what about patient swearing?

This article delineates a case in which a physical therapist employs swearing as a strategy for patient-centered communication. However, what about the swearing behaviors exhibited by patients? Patients who demonstrate behavior considered inappropriate by providers, such as using foul language, are often unfairly labeled as “difficult.”27 A proposed solution to managing such “difficult” patients involves allowing them to vent, or swear, uninterrupted in a private setting, as swearing is believed to have cathartic effects.27,28 Patient swearing may have utility in a physical therapy setting, beyond its cathartic potential. A recent case report details the formal integration of patient swearing into a physical therapy plan of care. In this case, the patient opted for the swearing strategy of vocally repeating “fuck” during the most painful and challenging interventions, aiming to improve physical performance and decrease pain.29 However, the outcomes of swearing, whether by a patient or a physical therapist, are highly dependent on the context in which they occur. The next section will explore some contextual factors that may influence the effects of swearing.

What evidence can help us make sense of the swearing and outcomes of this case?

Swearing has been a part of human language since its inception30 and is prevalent in society, with evidence suggesting 58% of the population swears “sometimes” or “often;”7 more than 70% of adults report frequently or occasionally hearing individuals swear in public;31 and 57% of workers swear in the workplace.32 This suggests that swearing is prevalent in public discourse and a common part of everyday speech, even in more formal settings. However, the utility of swearing in physical therapy remains under-explored.

The challenge of interpreting and applying the evidence around swearing is that the majority of research on swearing tends to be categorical and conducted in non-naturalistic settings, while overlooking context. However, it’s crucial to recognize that the context in which swearing takes place ultimately determines whether it has a positive or negative impact. The limitations of non-naturalistic research and the significance of contextual factors in determining the outcomes of swearing have been described by Stapleton,33 and are underscored by research from Rassin and van der Heijden.8 When simply asked whether using a swear word is a sign of credibility, deceit, or neither, people tend to view swearing as an indicator of deceit. However, in the context of testimonies provided by crime suspects and victims, testimonies containing swear words were perceived as more credible than those without.8 This demonstrates the crucial role that context plays in the perception of swearing. The physical therapist in this case swore as a means to convey empathy and acknowledge the patient’s hardships. Emphasizing feelings is a common motive for swearing; therefore, swearing may be a strategy to express the understanding of strong emotions.34,35

The outcomes of a physical therapist swearing may be influenced by other contextual factors such as age, gender, and race of both the patient and physical therapist. Notably, the patient in this case (Phoebe) belonged to Generation Z, while the physical therapist was a Millennial. These different generational backgrounds shape their expectations, and given the potential for swearing to cause offense, it could be seen as risky behavior. Younger generations tend to be more inclined to participate in risk-taking compared to older ones.36 Consequently, swearing by young adult physical therapists in the presence of young adult patients may be perceived differently than when used by or in the presence of older generations. Moreover, gender differences in the use of swear words indicate that males tend to use stronger language than females. Research has shown that males use the word “fuck” and its derivatives nearly twice as frequently as females.37 This discrepancy may affect how swearing is perceived.26,37 It has also been found that females may need to exhibit a higher degree of professionalism compared to males to be considered credible in certain situations.38 Race is a less studied social variable within the swearing research.7 Caucasians, in particular, tend to swear in a wider range of social situations than other racial groups, and they typically face less severe judgement for their language.7 This suggests that the racial identity of a physical therapist who swears may have implications on the outcome.

The utility of strategic swearing in healthcare settings is underrepresented in the literature.39 In mental health settings, Giffin11 surveyed 50 patients who had experienced swearing from their therapist, which included social workers, counsellors, and psychologists. Surprisingly, 80% of patients reported that their therapist’s use of swear words had a positive effect on their therapeutic relationship, and over 88% of patients described an explicitly positive experience with their therapist swearing. These findings may be attributed to the informal, natural, and humanistic environment created by swearing, which allows the patient and provider to be more authentic.30 Swearing has also been shown to help build rapport40 and manifest solidarity.41 Interestingly, none of the surveyed patients by Giffin11 felt that their therapist’s swearing had a detrimental impact on their therapeutic relationship. These results are consistent with a recent case series in physical therapy that showed swearing by a physical therapist was not perceived as unprofessional and did not offend the patients.42

Where Do We Go From Here?

While this reflection revolved around exploring the potential positive effects of swearing, it is essential to clarify that we are not advocating the idea that swearing is universally beneficial, nor are we suggesting that every physical therapist should incorporate swearing in their practice. Instead, we recommend a prudent, mindful, and context-sensitive approach to swearing, or to refrain from swearing completely. Until we gain a comprehensive understanding of the mechanisms through which swearing serves positive functions, can effectively mitigate the risks of potentially offending someone with swearing, and gain a deep appreciation for which contextual factors are significant, it remains premature to justify the strategic use of swearing within a clinical setting. Further research is required to enhance our understanding of how swearing may be used to promote professionalism, patient-centered care, and the therapeutic alliance. Empirical evidence is a requisite to guide physical therapists on when, how, and if swearing can be used to enhance patient outcomes. Once such evidence becomes available, swearing may indeed emerge as a strategy to help meet our professional vision of “improving the human experience.”43[/vc_column_text][vc_custom_heading text=”Authors’ contributions” font_container=”tag:h4|text_align:left” use_theme_fonts=”yes”][vc_column_text]NBW was responsible for concept development, design, and supervision. NBW, AM, GT, and RS were responsible for data collection and reflection, drafting and editing, and approving manuscript prior to submitting.[/vc_column_text][vc_custom_heading text=”Acknowledgements” font_container=”tag:h4|text_align:left” use_theme_fonts=”yes”][vc_column_text]We extend our deepest gratitude to Ashley Kappel, whose invaluable contribution transcends conventional acknowledgments. Ashley provided an initial example of patient-centered strategic swearing that not only served as the guiding genesis behind this manuscript but also sparked our interest in exploring the depths of what professionalism truly means.

References

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  17. Code of Ethics for the Physical Therapist. Am Phys Ther Assoc. Available at: https://www.apta.org/siteassets/pdfs/policies/codeofethicshods06-20-28-25.pdf. Accessed August 12, 2023.
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  32. Williams IL, Uebel M. On the use of profane language in psychotherapy and counseling: a brief summary of studies over the last six decades. Eur J Psychother Couns. 2021;23(4):404-421.
  33. Stapleton K. Swearing and perceptions of the speaker: a discursive approach. J Pragmat. 2020;170:381-395. doi:10.1016/j.pragma.2020.09.001
  34. Fine MG, Johnson FL. Female and male motives for using obscenity. J Lang Soc Psychol. 1984;3:59-74.
  35. Burns MC. Why we swear: the functions of offensive language. Monash Univ Linguist Pap. 2008;6(1):61-69.
  36. Reisenwitz TH, Iyer R. Differences in generation X and generation Y: implications for the organization and marketers. Mark Manag J. 2009;19(2):91-103.
  37. Guvendir E. Why are males inclined to use strong swear words more than females? An evolutionary explanation based on male intergroup aggressiveness. Lang Sci. 2015;50:133-139.
  38. El-Alayli A, Hansen-Brown AA, Ceynar M. Dancing backwards in high heels: female professors experience more work demands and special favor requests, particularly from academically entitled students. Sex Roles. 2018;79:136-150.
  39. Washmuth NB, Stephens R. Frankly, we do give a damn: improving patient outcomes with swearing. Arch Physiother. 2022;12.
  40. McLeod L. Swearing in the “tradie” environment as a tool for solidarity. Griffith Work Pap Pragmat Intercult Commun. 2011;4:1-10.
  41. Baruch Y, Jenkins S. Swearing at work and permissive leadership culture: when anti-social becomes social and incivility is acceptable. Leadersh Organ Dev J. 2007;28(6):492-507.
  42. Trummer G, Stephens R, Washmuth NB. A physical therapist who swears: a case series. J Rehabil Med – Clin Commun. 2023;6(10277).
  43. Guiding principles to achieve the vision. Am Phys Ther Assoc. Available at: https://www.apta.org/siteassets/pdfs/policies/guiding-principles-to-achieve-the-vision.pdf. Accessed July 12, 2023.

About the Author(s)

Nicholas B. Washmuth, DPT

Nicholas B. Washmuth, DPT is an Associate Professor in the Department of Physical Therapy at Samford University, and a Visiting Research Fellow in the School of Psychology at Keele University. During the first part of his career, he gained experience as a clinician and manager in outpatient orthopedic physical therapy clinics. He then transitioned into academia, and his current interests have expanded to examine the effects of swearing in physical therapy clinical settings, in higher education classrooms, and in consumer products. His current projects explore the potential for strategic swearing to achieve reliable positive results. He enjoys the humility gained by studying the difficult-to-define constructs that surround the humanities. Correspondence address: Nicholas B. Washmuth, Department of Physical Therapy, Samford University, 800 Lakeshore Drive, Birmingham, Alabama, 35299. E-mail: nwashmut@samford.edu

Adam Meakins, PT

Adam Meakins, PT is a Trauma and Orthopedic Extended Scope Practitioner working at the West Hertfordshire Teaching Hospital Trust. He is also a Clinical Director and Chief Educational Officer at the Better Clinician Project. Adam is involved in a number of research projects, including one about the role of patient/clinician communication and the impact this can have on outcomes.

Garrett Trummer, DPT

Garrett Trummer, DPT is the CEO of Outlaw Physio, located in Vestavia Hills, Alabama. Garrett is a dedicated physical therapist with a passion for optimizing the health and performance of athletes and fitness enthusiasts. Holding dual Board Certifications as a Sports Clinical Specialist and Orthopedics Clinical Specialist, Garrett brings a wealth of expertise to his practice. An advocate for comprehensive care, Garrett emphasizes the importance of a strong therapeutic alliance and incorporates psychology-informed techniques into his physical therapy approach. He is frequently invited to lecture at Alabama physical therapy schools, covering topics such as health and wellness, therapeutic alliance, and the intersection of psychology in physical therapy. In addition to his clinical work, Garrett is actively involved in clinical research. One of his notable studies explores the impact of swearing on therapeutic alliance, patient confidence, and the overall patient experience, shedding light on innovative approaches to patient care. At the core of Garrett’s practice philosophy lies his emphasis on the clinician’s understanding of the impact that psychology and humanities have on patient outcomes.

Richard Stephens, PhD

Richard Stephens, PhD is a Senior Lecturer in Psychology at Keele University and has been involved with psychology for more than three decades. For the last one and a half decades, Richard has been researching the psychology of swearing. including the beneficial effects of swearing for relieving pain and boosting one’s output in terms of physical strength. Richard believes language is a sophisticated toolkit, and swearing is an important part of it, comprising a cheap, readily available, calorie-neutral, drug-free means of self-help.


This work is licensed under a Creative Commons Attribution 4.0 International License.

]]> 10357 Eye Spy 2022: Improving Nonverbal Communication and Interprofessional Perceptions in Health Science Students https://jhrehabredesign.ecdsdev.org/2022/04/25/eye-spy-2022-improving-nonverbal-communication-and-interprofessional-perceptions-in-health-science-students/ Mon, 25 Apr 2022 04:01:36 +0000 https://jhrehabredesign.ecdsdev.org/?p=8496

Eye Spy 2022: Improving Nonverbal Communication and Interprofessional Perceptions in Health Science Students

Cynthia Dodds, PT, PhD & Brooke Mulrenin, OTR/L, MS & Lisa Kerr, PhD & Carrie Cormack, DNP, APRN & Kimberly Kascak, MS & Rebecca “Becca” Hiester
Download the article (pdf)

Table of Contents

Purpose: With the theoretical and conceptual underpinnings of Bloom’s Taxonomy and TeamSTEPPS®, the purpose of this study was to examine changes in communication skills and interprofessional perceptions of health science students following visual thinking strategy (VTS) instruction in a museum setting.

Methods: Using a pre- and post-test design, 25 interprofessional health science students at the Medical University of South Carolina (MUSC) enrolled in the 8-week Eye Spy program, developed and implemented in 2018-19 by MUSC faculty and the Gibbes Museum of Art museum educators. The Nonverbal Checklist (NVC) and Readiness of Interprofessional Learning Scale (RIPLS) assessed communication and attitudes related to interprofessional education.

Results: Significant improvements were demonstrated in NVC scores as assessed by students and museum educators. The Professional Identity subscale scores of the RIPLS also significantly improved.

Discussion: Among interprofessional health science students, affective domain development and interprofessional perspective were positively impacted by participation in a VTS-grounded course. Although there is limited evidence, an expectation exists that students displaying higher levels of affective development will be more compassionate and patient- and family-integrated care providers. Future studies should not only explore educational outcomes and strategies within higher levels of the affective domain, but also examine the long-term impact of these affective instructional approaches on actual clinical practice.

In 2018, Eye Spy began as a pilot educational opportunity for physical therapy students to enhance communication and observation skills. With funding from the South Carolina Clinical and Translational Research Institution Team Science Program NIH/NCATS Grant Number UL1TR001450 and Interdisciplinary Research Training in Otolanyngology and Communication Sciences T32 DC014435, this work has now expanded into the interprofessional education arena. Our initial Eye Spy findings and publication provide descriptive and qualitative findings that well informed our current and more objective quantitative work. This current publication offers objective evidence that museum-based instruction can improve the interprofessional readiness and communication of students studying within a variety of health science disciplines.[/vc_column_text][vc_column_text]

Introduction

To become competent practitioners, health science students must attain expert clinical knowledge and skills; however, it is equally important for them to develop into reflective and compassionate practitioners.1 Although faculty recognize the importance of affective skill development in health science students, many feel affective objectives are subjective and personal in nature, making instruction and measurement problematic. As such, identifying educational and complementary assessment methods to support and enrich affective development is needed.2 Bloom’s Taxonomy provides a well-recognized framework used by educators for fostering instruction and outlining assessment of educational objectives.3 Commonly overlooked in education are Bloom’s affective categories,4,5 which include receiving (eg, listening, observing); responding (eg, participating, discussing); valuing (eg, inclusion, diversity, implicit behavior); organization (eg, balanced decision making, responsible for one’s behavior); and characterization (eg, value-guide behavior, self-reliance, cooperation, empathy). See Figure.5

The health humanities provide health science faculty opportunities to teach skills linked to Bloom’s affective domains, from the lower levels of receiving and responding to the higher levels of valuing, organization, and characterization. While assessment of health humanities educational initiatives remains problematic to some degree,6 humanities educators argue that engagement with the health humanities can foster observation and communication skills (receiving and responding) while also promoting reflection, perspective-taking, integration, awareness of nuance, and tolerance for ambiguity7—qualities associated with the higher levels of Bloom’s affective domain (valuing, organization, characterization). Narrative medicine practitioners, for example, promote the 3 domains of attention, representation, and affiliation,8,9 with the latter two corresponding to Bloom’s higher levels because they promote not only the understanding of perspectives and values (self and others), but the integration of those value systems and co-construction of meaning. Like narrative medicine, visual thinking strategies (VTS) have come to the forefront of the health humanities as a pedagogical approach that provides students opportunities to observe, listen, think, and construct understanding as outlined across Bloom’s affective domain.10-13

Museums provide a rich environment for embedding humanities into health science education. Compared to traditional healthcare settings and learning environments, museums and their associated art-based experiences are often perceived as less authoritative and threatening.14 As such, observations and communications occurring in museums and/or during art-based experiences allow for a variety of in-depth and diverse interpretations and perspectives. Commonly used within museum settings by qualified museum educators to encourage sharing and discussion, VTS are based on three questions: 1) What is going on in this piece? 2) What do you see that makes you say that? and 3) What more can we find?10

Practicing VTS in museum settings with faculty and museum educators provides health science students the opportunity to safely explore and collaboratively contemplate more poignant inquiries, such as racial discrimination and mental illness. VTS have been successfully implemented in health science education by several investigators. Gowda and colleagues15 created the Observation and Uncertainty in Art and Medicine course to strengthen communication and explore ambiguity in 44 first-year medical students. Surveying students at the end of the course using 3 measurement scales, they noted improvements in students’ awareness of personal bias (Best Intentions Questionnaire), ambiguity (Tolerance for Ambiguity Scale), and reflective ability (Groningen Reflection Ability Scale). They found that only reflective ability increased significantly.15 Katz and Khoshbin16 reported gains in diagnostic skills following participation in VTS for medical students. In other studies, the practice of VTS has been shown to improve clinical observation skills in nursing students17 as well as communication skills and attitudes in nursing and medical students.7

The majority of VTS instructional findings have focused on discipline-specific student populations; however, authors Katz and Khoshbin16 documented VTS work within the Brigham’s Integrated Teaching Unit entitled “Multidisciplinary Teambuilding Museum Workshops.” Following workshop participation, clinical teaching teams suggested VTS could have a positive impact on team building; thus, this provided some of the preliminary evidence supporting VTS’ use within interprofessional practice and education. Beyond measuring the affective impact of VTS on students, our study was also interested in how students’ affective development intersected with or enhanced interprofessional learning. From a theoretical perspective, substantial crossover may exist between the affective domain of Bloom’s Taxonomy and the Team Strategies and Tools to Enhance Performance and Patient Safety (TeamSTEPPS®) framework.18

An Intersection of Components and Principles for Assessment

Developed by the Institute of Medicine and described in the To Err is Human report,19 the TeamSTEPPS® framework was designed to optimize team performance across the health care delivery system. Five key principles are highlighted in TeamSTEPPS®: team structure, leadership, communication, situation monitoring, and mutual support.18 The intersection of these key principles with the components of Bloom’s affective domain is evident.

For instance, Bloom’s affective receiving overlaps with the key principle of situation monitoring, which promotes observational environmental scanning in order to assess and gain understanding of a situation. For Bloom’s affective components of responding and valuing, the key principle of communication is essential, which in TeamSTEPPS® allows clear and decisive exchanges among team members. Bloom’s affective principle of valuing, with its acceptance, commitment, and opposition to action, is central to team structure, because without respect for team structure, effective, efficient, and cohesive teams could not exist. The personal value systems developed within Bloom’s affective organization and characterization provide the foundation for TeamSTEPPS®’ leadership and mutual support. Both Bloom’s affective domain frameworks and TeamSTEPPS® provide structured, teachable opportunities to foster affective and interprofessional learning. To this point, this study used VTS in a museum setting to affect observations, communication skills, and interprofessional attitudes and perceptions of 25 interprofessional students.

While communication is a component found within both Bloom’s affective domain and TeamSTEPPS®, communication itself is made up of three channels: verbal, vocal, and kinetic. The verbal channel conveys the cognitive message, which is delivered by the vocal channel through pitch and inflection of the voice. One support system on which the verbal, vocal message is conveyed is the kinetic channel that includes gestures, postures, and movements. Kinetic, or nonverbal, communication that supports the receiving and responding of communication includes being present (eg, rather than hidden behind computers and smartphones), establishing eye contact, displaying neutral to pleasant facial expressions, angling body position openly toward the individual, and using affirming gestures such as head nodding. Without an appropriate kinetic channel support system, messages conveyed may be misconstrued.

For instance, how might a healthcare provider gathering a patient history with little eye contact, arms and legs crossed, and inattentiveness, most likely be perceived by the patient and family? He/she would probably be seen as uninterested and unconcerned about the patient’s health and welfare, whereas the same healthcare provider with arms open, a forward-leaning posture, maintenance of eye contact, and affirmative nodding would be identified as concerned and caring. Kinetic or nonverbal communication, the silent messenger, can have a great impact on overall communication. These nonverbal communication skills are believed to be important to the development of rapport between health care professionals and patients20 as well as interprofessional colleagues. Training health science students in communication—including nonverbal awareness—is therefore truly important.

The Mixed-Model Eye Spy Study

With the theoretical and conceptual underpinnings of Bloom’s Taxonomy and TeamSTEPPS in mind, we conducted a mixed-model study to examine changes in observation and communication skills and interprofessional perceptions following VTS instruction in a museum setting. The purpose of this article is to present our quantitative findings related to nonverbal behaviors and interprofessional learning. We hypothesized that interprofessional students participating in eight VTS sessions in a museum setting would display improved nonverbal communication skills and enhanced perceptions of interprofessional practice.

Course Development.  The interprofessional Eye Spy course was developed and implemented by a physical therapy faculty member within the Medical University of South Carolina’s (MUSC) College of Health Professions and four museum educators at the Gibbes Museum of Art in Charleston, South Carolina. Additional faculty members from MUSC’s College of Medicine, Nursing, and Center for Academic Excellence participated in interprofessional course consultation, development, and implementation. Faculty members reviewed course objectives and outcomes, outlined specific course activities over 8 sessions, and identified collections and locations to be used during VTS instructional activities. The decision to conduct the Eye Spy course over 8 sessions in a 15-week semester was based on evidence from Naghshineh and colleagues,21 who documented greater improvement in the observational skills of medical students following 8 or more art observation sessions. That study’s observational data was qualitative in nature. Our qualitative findings from the Eye Spy course, related to vocal language richness as well as humanistic qualities in observations and written communication, will be reported in a separate manuscript.

Timeline.  Seven Eye Spy sessions occurred using art collections at the Gibbes Museum of Art; one session involved collections within the MUSC’s Ashley River Towers Hospital. Up to 10 graduate health science students could enroll each semester over a total of 3 semesters and were allowed to only participate in one semester. Students were recruited into this elective through the MUSC’s Office of Interprofessional Initiatives.

 

Methods

Design

The study was considered a program evaluation project related to graduate education; therefore, it did not require formal Institutional Review Board approval. However, we obtained students’ consent to participate in the study and be photographed and videotaped. These permissions allowed images to be used for the purpose of describing and disseminating the Eye Spy program to stakeholders at a local and national level.

Participants

Twenty-five interprofessional graduate health science students participated in the Eye Spy Program. Twenty-four of these students self-selected to take part in the Eye Spy elective. The 25th student enrolled as part of a faculty-developed remediation plan related to continual unprofessional behavior incidents related to inappropriate communication with peers. Table 1 provides demographic participant information.

Outcome Measures

Nonverbal Checklist.  Previously developed and used by Hall22 and Ishikawa,23 the Non-verbal Checklist20 (NVC) was utilized to examine non-verbal or kinetic communication in medical students during an Objective Structured Clinical Examination. Components of NVC include body lean, body position, postural change, facial expression, eye contact, affirmative gestures, unpurposive movements, and hand gestures. Table 2 defines the NVC components and scoring. With the exception of body lean, which can be scored 0, 1, or 2, components of the NVC are scored 0 or 1. Higher scores are reflective of more welcoming and approachable body language.

Readiness for Interprofessional Learning Scale.  The Readiness for Interprofessional Learning Scale (RIPLS)24 is a 19-item measure designed to capture attitudes and perceptions related to interprofessional education across a 5-point Likert scale from “strongly disagree” to “strongly agree” with a maximum total score of 95. Higher scores suggest greater readiness. The general information portion of the RIPLS includes age, specialty area, and year of training. The RIPLS is made up of 4 subscales: 1) Teamwork and Collaboration; 2) Negative Professional Identity; 3) Positive Professional Identity; and 4) Roles and Responsibilities. Specifically, Teamwork and Collaboration explores the values that interprofessional members embrace and how these values impact relationships. It involves capturing findings related to communication, coordination, and discipline-specific knowledge for the purpose of learning to provide effective care as a team. The subscales of Professional Identity recognize that discipline-specific learning occurs around professional ideology and assesses the likelihood that this ideology will promote or hinder teamwork and care. Addressing learning of professional task delineation and its relevance within effective teamwork is captured in the Roles and Responsibilities subscale.24,25 Three of the 4 subscales have demonstrated good test-retest reliability.26 Negative and Positive Professional Identity can be collapsed into one subscale entitled Professional Identity.25

Intervention

Following registration into the course, students were provided the syllabus outlining course objectives and activities. During session 1, students completed consents and RIPLS, and an MUSC faculty member explained that one small group activity during each Eye Spy session would be video recorded during sessions 2 through 7. A Canon Vixia HRR500 video camera was used to video record. Following each week’s session and using the video recordings, students and museum educators scored the NVC. Students and museum educators were intentionally not educated in scoring the Nonverbal Checklist to encourage reflection rather than instruction of nonverbal behavior. Each student only reviewed and scored his or her own nonverbal behaviors. Students also commented on strengths and areas of improvement after reviewing each week’s video recording. Museum educators were assigned several specific students to review and score from the video recordings. Students and museum educators had 2 weeks to review and score the NVC before the next session. The video recordings and NVC scoring were available and managed through an online learning platform and a secure file-sharing service. Video recording did not take place during session 1 and session 8 because additional time was required for quantitative and qualitative data collection. On occasion, students had opportunities to participate in special events within the museum environment, in which video recordings were not permitted (eg, Behind the Scenes Museum tour, guest lectures by international artists). Re-administration of the RIPLS took place during the 8th and final session.

Examples of general descriptions of weekly Eye Spy lessons are available in Table 3. As can be seen from the table, lessons varied from session to session; however, in each session excluding special events, students were involved in 1 large and 2 small group lessons over 2 hours, facilitated by museum educators and faculty members. Small and large group lessons were grounded in the VTS pedagogy, yet scaffolded across sessions to build affective domain development.

Sessions 1 and 2 were designed to establish rapport and create general familiarity with VTS inquiry. In one early session, for example, using a painting entitled 502 Lucerne Street by Edward Rice, students participated in an open discussion offering many different perspectives that led to multiple interpretations. Subsequent sessions consistently targeted communication and observation skills, but also sought to impact and advance affective development toward valuing, organization, and characterization. In this case, students advanced affective skills involving valuing by unraveling the hidden messages and emotions held within the multimedia work entitled The Evolved Form of a Butterfly that was created by a diverse sample of children living with autism spectrum disorder.

Results 

Nonverbal Checklist

All analyses were conducted using SAS version 9.4 (SAS Institute, Cary, NC), with two‐sided statistical significance set a priori at P < 0.05. Paired t-tests were used to compare NVC group mean scores from the first (session 2) to last (session 7) session video-recordings, rather than the planned repeated-measures analysis of variance. This is because the majority of students missed one session secondary to clinical educational duties, and absences varied across session weeks, which annulled the repeated-measures statistical testing. Eleven student absences occurred across eight sessions. All students were present for sessions 2 and 7; therefore, statistical testing with a paired t-test was carried out for these sessions. Significant improvements were displayed in the Total and 4 item scores on the NVC as measured by student self-ratings. The museum educators’ ratings for 2 NVC item scores improved significantly. Only the Facial Expression item significantly improved for both students and museum educators. Tables 4 and 5 display Nonverbal Checklist values from student and museum educator ratings. Comparative ratings between the students and museum educators at session 2 and 7 timepoints were significantly different (Table 6).

Readiness for Interprofessional Learning Scale

Paired t-tests were used to compare group mean scores from the first session (1) to last session (8). Table 7 displays the total and three subscale scores for the Readiness for Interprofessional Learning Scale. The Professional Identity subscale was significant (p=0.029) as was the Professional Identity subscale item labeled “Shared learning and practice will help me clarify the nature of patients’ or clients’ problems” (p=0.0005). Improved trends were noted for the Teamwork and Collaboration subscale and Total scores, but were not significant.

Discussion

Nonverbal Communication Skills

Following use of VTS within a museum environment and at the affective domain foundational levels, interprofessional students demonstrated improvements in nonverbal behaviors. The characteristics of receiving and responding are well represented within the NVC (eg, nodding affirmative action, leaning in or away, eye contact) and their associated improvements positioned students for advancement into valuing, organization, and characterizations. These higher-level affective characteristics were not directly measured quantitatively; however, student comments on their NVC behaviors suggest that preliminary improvements in the more advanced areas of the affective domain were occurring. Below, we provide student comments demonstrating potential gains into higher levels of the Bloom’s affective domain.

  • Valuing: Inclusion and diversity theme: “This exercise was interesting for me because I interpreted a different scene in the piece than the direction the rest of the class was taking it. I originally wasn’t going to speak up, but the facilitator made sure to get every opinion from the group. Next time I should still voice my opinion even if it is opposite from the majority of the group.”
  • Organization: Responsible for one’s behavior theme: “I could learn to voice my disapproval of connotations & not be afraid of what others may think because my opinions are mine & theirs are allowed to differ (if they do). I should practice with uncomfortable conversation topics.”
  • Characterization: Value-guided behavior theme: “I would like to have a smile on my face more often, however the topic [Requiem for Mother Emanuel] we were discussing did not warrant a smile, so maybe I will look different next time. Since we were discussing art, I think that my emotions were removed from the situation. I understand this is a very sensitive topic and I do have sympathy for the ones lost and their families. I think that in a situation when I am interacting with another person and it requires compassion, that I do a better job of expressing my sympathy and compassion.”

These comments reflect trends in the construction of students’ awareness and understanding of others’ perspectives, thereby providing a self-reflective lens through which students recognize their implicit knowledge and behaviors and take the opportunity to build one’s value system and act in a value-guided manner.

Differences in NVC scoring between students and museum educators existed. Students clearly critiqued their nonverbal behaviors more stringently than museum educators. For the museum educators, a ceiling effect in the initial NVC scores was noted, so little subsequence change occurred at the final scoring. Several possibilities exist for this lack of change. The museum educators involved with this course often spent much of their time educating primary school children. The opportunity to work with adult graduate students may have been more intellectually stimulating and inflated their perception of students. In addition, since no formal instruction concerning the NVC was provided to encourage reflection of nonverbal behaviors, the museum educators may have misinterpreted the scale, and consequently, scores were elevated.

Perception of Interprofessional Practice

With pre- and post-total RIPLS scores equaling 84.88 and 86.28 out of 95 respectively, once again a ceiling effect is noted for students participating in this course. The MUSC is committed to interprofessional (IP) education and practice. At MUSC, all first-year students across 6 colleges and multiple programs are required to participate in a 4-week course devoted exclusively to interprofessional learning. Additionally, each year for one full day in January, the University cancels classes across all colleges and requires all students to participate in interprofessional exercises for what is titled IP Day. This extensive introduction to IP learning and practice may explain the total RIPLS score ceiling effect and lack of change. Comparisons between this study’s high RIPLS pre- and post-test total scores of 84.88 and 86.28 out of 95 to other IP studies support this conclusion. For instance, Janotha and colleagues22 reported RIPLS mean post-test scores of 78.3 following an IP clinical experience between dental and nurse practitioner students. A similarly lower RIPLS mean post-test score of 75.02 was reported by Walker and colleagues23 following placement of undergraduate healthcare students in rural clinics.

Although the total RIPLS score did not demonstrate significant improvement, the significant improvement in the RIPLS Professional Identity subscale and “Shared learning and practice will help me clarify the nature of patients’ or clients’ problems” item is interesting and may indicate advancement of affective domain development. This RIPLS subscale is reflective of defining one’s professional identity and professional contributions to an IP team. For a team to promote inclusive, diverse, and balanced awareness and decisions, each team member must recognize communication and perspective-taking skills are necessary. This recognition supports ascension toward valuing and organization within the affective domain. Future museum-based VTS studies involving IP education and practice with the goal of specifically targeting higher levels of the affective domain, such as inclusion, diversity, and implicit biases, would most likely prove constructive.

Framing Future Studies

As previously highlighted, the majority of studies examining the effects of museum and art-based instruction have occurred involving medical students; a gamut of various outcomes has been explored, from communication, ambiguity, and reflection to empathy. Similar to how traditional health science outcomes and interventions are mapped and evaluated across the International Classification of Functioning, Disability and Health, the authors of this paper would suggest that conceptualizing and organizing outcomes and instructional strategies for future studies across the framework of the affective domain would promote clearer understanding of the possible hierarchical nature of affective student learning, strengthen museum and art-based instruction evidence, identify gaps in the evidence, and guide future research directions. Consider the work of Gowda and colleagues,15 which noted significant improvement in medical students’ reflective ability, but not for personal bias and tolerance for ambiguity. Is this lack of improvement secondary to the need for lower affective domain development before higher-level attainment can be achieved?

Ultimately, our study authors suggest that in order to ensure that all future healthcare providers are compassionate and patient- and family-integrated, essential instruction in the development of lower affective skills followed by the intentional targeting of higher affective levels is necessary. Although results from our study provide preliminary evidence that museum-based instruction can lead to improvement in interprofessional learning and nonverbal communication, much more educational research about affective instruction and development is needed. Prospective randomized controlled trials and longitudinal study designs—to establish whether affective domain development following museum- and art-based instruction in health science education leads to the actualization of compassionate patient- and family-integrated care providers within clinical settings—would be of great value to the field of health science education.

Limitations 

This study suggests improvements in affective domain development of health science students, but there are factors that may have generated biases and limited interpretation of results. The Eye Spy course is an elective interprofessional opportunity within MUSC. Twenty-four of the 25 students self-selected to participate, undoubtedly leading to self-selection bias. Because the principal investigator appointment was within the College of Health Professions, Division of Physical Therapy, participant recruitment was more easily solicited and therefore enrollment was greater for this college.

Additionally, our sample lacked racial diversity, with 92 percent of participants being white. In future investigations, greater participant heterogeneity would provide broader perspective insight and most likely lead to improved affective development across the student cohort. Although only 11 absences were missing from data collection and analyses, museum-based events interfered with the initial study design and resulted in data collection reductions. The design of future studies should remain constant or special event opportunities should be built into the design. Student participants in years of study with greater clinical demands recorded most absences; therefore, enrollment consideration as to the year of health science study may need to be considered. At the intervention level, the authors would suggest that video recording is carried out without student awareness. Because students could see that the video recording was occurring, there is a question as to the genuine quality of their nonverbal behaviors. Taking steps to minimize students’ awareness during video recording may enhance confidence in the authenticity of nonverbal behaviors. Also, future studies may consider professional videography that provides a quality video recording as this may enhance visualization of nonverbal behaviors from which participants and museum educators score. This study intentionally did not educate participants and museum educators in the NVC, in order to encourage self-reflection rather than nonverbal instruction. Future researchers may wish to provide this education, as this may lead to different findings and interpretations.

Conclusion

This study is one of the first to involve an IP group of health science students exploring affective domain development using a VTS intervention in a museum-based setting. Quantitative findings indicated improvements in nonverbal communication skills and enhanced perceptions of interprofessional practice in health science students. Future health science educational studies involving humanities and targeting outcomes and interventions across the various levels of the affective domain are needed to support the development of compassionate and patient- and family-integrated care providers.

References

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About the Author(s)

Cynthia Dodds, PT, PhD

Cynthia Dodds, PT, PhD is an Associate Professor at the Medical University of South Carolina. She regularly implements humanities instructional strategies into physical therapy education to enhance affective development of students. Her current project entitled Eye Spy for Development of Affective Qualities in Interprofessional Healthcare Students has South Carolina Clinical and Translational Research Team Science funding to examine students’ communication and observation skills within a museum setting.

Brooke Mulrenin, OTR/L, MS

Brooke Mulrenin, OTR/L, MS is a pediatric occupational therapist and Ph.D. candidate studying Health and Rehabilitation Science at the Medical University of South Carolina. Her current research involves improving measurement of infant feeding and swallowing disorders. Through research and teaching, she hopes to promote compassionate, family-centered approaches to feeding, allowing mealtimes to be a source of enjoyment and connection. As a graduate assistant for the Eye Spy course, Brooke gained immense appreciation for the value of art- and humanities-based instruction, observing that together, educators and students created an environment of trust that fostered uncommonly generous listening and sharing. She believes this type of learning experience provides space to honor the complexity of being human and to develop patience to work through difficult realities — important practices for health science students and health professionals.

Carrie Cormack, DNP, APRN

Carrie Cormack, DNP, APRN is an Assistant Professor at The Medical University of South Carolina. She is the lead Palliative Care faculty in the Doctor of Nursing Practice program. Carrie moved to South Carolina as a new graduate Registered Nurse to follow her dreams of working in Pediatric Nursing. Now, with over 20 years’ experience in Pediatric Nursing, she has worked in acute care, Developmental Pediatrics, Pediatric Orthopaedics, as the Director of Nursing at a school for children with severe and multiple disabilities, and with a community based palliative care organization. She continues to specialize in palliative care and, in addition to her faculty work, she practices as a pediatric nurse practitioner with the Pediatric Palliative Care team at the Shawn Jenkins Children’s Hospital in perinatal palliative care at MUSC. Certified by the Pediatric Nursing Certification Board and the Hospice and Palliative Nurses Association, Carrie is dedicated to increasing palliative care education as well as the humanities education in nursing programs. She is committed to empowering students to better understand, relate to, and care for their patients and families, especially those with serious illness.

Kimberly Kascak, MS

Kimberly Kascak, MS is an Assistant Professor at the Medical University of South Carolina (MUSC). She has a background in special education, medical education, academic innovation, and online instructional design in the field of education. She has worked collaboratively with interprofessional teams including but not limited to physical therapists, occupational therapists, speech therapists, nurse practitioners, families, and educators throughout my career. She has developed and coordinated innovative online academic programs with continual ongoing educational support to programs. Her current focus involves collaborative, interprofessional, and online instruction. As a certified TeamSTEPPS Master Trainer, she provides instruction to MUSC students through required interprofessional courses.

Rebecca “Becca” Hiester

Rebecca “Becca” Hiester is the Director of Education and Programs at the Gibbes Museum, where she oversees all educational programs for K-12 and adult audiences, including all collaborative programs between the Gibbes and the Medical University of South Carolina. A Charleston native, she has an MA in art history from the University of Massachusetts, Amherst and a BA in anthropology and art history from Wake Forest University. She volunteered as a Museum Educator and with the curatorial department at the Gibbes for five years before becoming a Curatorial Assistant in 2014. She is currently pursuing a Masters of Library and Information Science with the University of South Carolina in addition to working full time with the Gibbes.


This work is licensed under a Creative Commons Attribution 4.0 International License.

]]> 8496 Community Mobility Method Selection in Individuals With iSCI: A Qualitative Analysis https://jhrehabredesign.ecdsdev.org/2021/11/05/community-mobility-method-selection-in-individuals-with-isci-a-qualitative-analysis/ Fri, 05 Nov 2021 04:05:54 +0000 https://jhrehabredesign.ecdsdev.org/?p=7945

Community Mobility Method Selection in Individuals With iSCI: A Qualitative Analysis

Carey L. Holleran, PT, MPT, DHS, NCS
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Table of Contents

Background: A primary rehabilitation goal for individuals with motor incomplete spinal cord injury (iSCI) is to regain walking abilities and return to community-level ambulation. Outside of quantitative indicators, little evidence exists to inform therapists in assisting patients in navigating community mobility method decisions.

Objectives: Describe the factors included in the choice between walking or using wheeled mobility methods in the community for individuals with motor iSCI who have the capacity to walk.

Design: A qualitative, grounded theory design was used to address the study aim.

Methods: Seven individuals of varying chronicity and physical capacity with iSCI participated in one-on-one semi-structured interviews. Interviews were recorded, transcribed, coded, and organized into themes and subcategories to develop the theory of how individuals make mobility method decisions.

Results: Individuals with iSCI described the factors they consider when choosing to walk, use wheeled mobility, or avoid community mobility altogether. Informants described a process of planning before any community outing that considered assessment of their body structures and functions, the task demands, and the environmental barriers and facilitators. Their perspectives on disability also influenced their mobility method choices.[/vc_column_text][vc_column_text]

Introduction

There are 12,000 reported cases of spinal cord injuries (SCI) in the United States each year.1 Incomplete injuries, indicative of sensory or motor sparing below the level of the injury, are becoming more prevalent.2 A primary rehabilitation goal for individuals with motor incomplete spinal cord injury (iSCI) is to regain walking abilities.3 While many individuals with iSCI have the goal of independent walking, clinicians early in the rehabilitation process (ie, inpatient rehabilitation) must balance therapy time between restorative walking interventions and training for functional independence in activities of daily living upon discharge. Further, discharge preparation includes the prescription of durable medical equipment for safe functioning in the home and the community. Apart from quantitative indicators, there is a paucity of qualitative information from individuals with spinal cord injury describing the factors that influence the selection of community mobility modes and devices. A deeper understanding of these factors could allow therapists to deploy more patient-centered care.

Characteristics: a Multitude of Factors

The characteristics of individuals who describe themselves as community ambulators have not been fully explored. The quantitative characteristics of these individuals have been described in separate cohorts with the use of body structures and function assessments (individual’s impairments), capacity measures (what the individual’s walking ability is), and performance assesments (how much the person walks in the real world).4 Perry et al5 described individuals that self-report community ambultation demonstrated walking speeds exceeding 0.4 m/s.5 Saraf et al6 provided discriminative capacity and performance values in a cohort of individuals with motor iSCI that described themselves as completing some walking in the community as those who walked at > 0.35m/s (meters per second) on the 10-meter walk test (capacity measure), >140m (meters) during the 6-minute walk test (capacity measure), or participated in >2200 total steps per day (performance mesaure) as measured by an accelerometer.6 Body structure and function characteristics such as quadriceps strength,7,8 hip flexor strength,6 gait efficiency,9 age,10 balance,6 upper-extremity strength,11 and gait speed12 have been correlated to walking capacity, with conflicting reports of the role of spasticity on walking capacity.6,7,10,12,13

However, utilizing solely quantitative factors to determine who will walk in the community likely excludes a multitude of other factors that individuals consider when navigating mobility-related choices. Spinal cord injury results in impairments in the motor and/or sensory systems in the upper and lower extremities, trunk, and pelvic region, to varied degrees.14 These impairments can alter the physical appearance of the human body and an individual’s function and independence,15-17 leading to disability.

The definition of disability varies depending on the model used to describe the concept. The World Health Organization’s International Classification of Function, Disability and Health (WHO-ICF), an enablement model used in rehabilitation, defines disability as “a complex phenomenon that is both a problem at the level of a person’s body, and a complex and primarily social phenomenon.”18 The social model of disability, championed through both the disability rights and independent living movements, frames disability as a normal part of the human experience.19 This model emphasizes the attitudinal, structural and social barriers that limit individuals in achieving their life goals, with the discriminatory view society has toward individuals who experience disability as the primary barrier.19

Data from separate cohorts of individuals who have experienced disability details how the experience of disability can either positively20 or negatively affect an individual’s sexual identity,21 self-esteem,22 gender roles,23 body image,24 and views on self-presentation.25 Self-presentation is behavior that attempts to convey information about oneself or an image of oneself to other people.26 A qualitative analysis by Bailey et al25 explored the body image experiences of people with spinal cord injury and found that individuals reported the use of differing self-presentation strategies to manage stigma associated with having a disability, including the use of a wheelchair. Another analysis by Jannings et al27 reported that individuals with spinal cord injury experienced negative reactions from individuals in the community based on their physical disability. It is unclear how individuals with spinal cord injury make decisions regarding future stigma when making mobility-related decisions.

Factors Affecting Choice

Therefore, the purpose of this study was to explore the factors individuals with motor incomplete spinal cord injury, who have the capacity to walk, consider when choosing community mobility methods.

Methods

Informants were purposefully selected from a larger quantitative study examining correlates of community mobility in individuals with chronic motor iSCI. Inclusion criteria for the quantitative arm of the study included individuals aged 18 to 75 years with a history of traumatic or non-traumatic, non-progressive motor incomplete American Spinal Injury Association (ASIA) impairment classification of C or D; injury incidence >1-year duration; neurological levels C1-T10; and the ability to ambulate >10 meters. Individuals with concurrent severe medical illness, pre-existing osteoporosis, history of other peripheral or central neurologic injury, and history of significant obstructive and/or restrictive lung diseases were excluded. Additional exclusion criteria included receiving physical therapy, experiencing a change in medical status, or changing medications over the 30 days prior to enrollment.

Study Design

Informants’ gait speed was evaluated with the 10-meter walk test as a part of the larger quantitative study from which they were recruited. Predictive walking categories described previously by Perry et al5 were utilized for purposeful sampling. Perry categorizes individuals who perform full community ambulation as those who walk >0.8 m/s; those who perform limited community ambulation, as those who walk 0.4-0.8 m/s; and those who perform household or no ambulation, as those who walk <0.4 m/s.5 The primary researchers (CLH & JLF) purposefully selected individuals from each of the three gait categories to gain a comprehensive understanding of the factors that impact mobility-method selection from persons with differing ambulatory abilities. Constant comparative analysis provided the researchers the ability to collaborate after open coding of each interview to determine the criteria for the next informant. In addition to selecting individuals who had differing ambulatory capacities, the researchers also sampled individuals with diverse chronicity post-SCI, levels of injury, socioeconomic backgrounds, and type of home community (rural or urban). The researchers selected subsequent informants after each interview in an attempt to continually challenge theme-building, and to allow for generation of a theory that was more likely to be transferred to the greater population of individuals with iSCI.

Data Collection

Grounded theory methodology was selected for this analysis to provide an in-depth investigation of the factors considered by individuals with chronic motor iSCI to utilize either walking or wheeled mobility methods in the community. Informants engaged in semi-structured interviews that occurred in a private setting. All data was transcribed and coded after each interview to incorporate a central feature of grounded theory—the constant comparative method.28-30 Field notes were taken to incorporate informants’ non-verbal communication throughout the interviews as part of the analysis, and memos were maintained throughout the coding process to enhance confirmability. An initial outline of questions was constructed prior to the first interview and is provided in Table 1. Questions were developed to explore how individuals made the choice between walking and using a wheelchair in the community from a variety of angles, and were designed to explore each individual’s experiences with community navigation. Questions were designed to be open-ended; however, the researcher asked additional questions (eg, “Could you tell me more about…?”) based on information that was revealed throughout. The primary researcher (CLH) recorded personal biases prior to and concurrent with data collection and analysis to demonstrate reflexivity. This project was approved by the Northwestern University Institutional Review Board and the University of Indianapolis Institutional Review Board. All informants participated in written informed consent. 

Data Analysis

Interviews were recorded and transcribed verbatim by the primary researcher. No identifiable information was utilized within the interview. Coding for grounded theory has been described by Strauss and Corbin as occurring in three stages: open-coding, axial coding, and selective coding.29 During open-coding, the primary researcher and a second researcher (JF) independently coded the data from each interview line by line, identifying in-vivo codes that closely matched the informants’ own words. Subsequently, researchers collaborated to verify initial codes, thus providing reliability of results while further reducing researcher bias.31 Constant comparative analysis occurred as the researchers compared new information to codes identified from previous interviews, with all decisions maintained in a codebook. The researchers continually built upon previous codes, eliminated codes, or established new codes throughout the analysis. This process also allowed the researchers to determine when data saturation was achieved, meaning no additional interviews were required to develop the theory.

The researchers met regularly to re-evaluate emerging codes and to continually sort and analyze the data. After the fourth interview, axial coding was initiated as themes began to emerge. Large amounts of data were synthesized, sorted, compared to one another, and were reorganized continually. Similar codes were grouped together and labeled with a more global conceptual theme. This included both positive and negative comments that related to the theme. After the sixth interview, the researchers independently re-read all transcripts, and reviewed existing themes to ensure preliminary themes were representative of the data. Selective coding occurred as researchers defined, developed, and refined the themes and began to build the theory. At this time, a third researcher (SCM), with clinical expertise working with persons with neurologic disease or injury, was consulted. This researcher reviewed all data and the preliminary themes to ensure dependability of results, and assisted with the theory development. Subsequently, all three researchers concluded that an additional interview was required to ensure saturation of data. Saturation in this analysis was determined when no additional data captured would support further development of the themes, as similar instances are occurring repeatedly.32

After the seventh interview, all three researchers agreed saturation had been achieved and all researchers confirmed the theory of how individuals with spinal cord injury choose methods for community mobility. After the theory was developed, the primary researcher met with a focus group that included four informants to verify theory and themes to ensure dependability of the data.25 Additionally, the results were presented to a panel of clinicians—two physical therapists and one occupational therapist with greater than one-year experience working with individuals with chronic motor iSCI. This step provided data triangulation, an essential element of grounded theory development, to ensure dependability and credibility of results based on each clinician’s interactions with the population under study in navigating community mobility choices.31

Results

Interviews lasted approximately 20 minutes to an hour. Individual demographic data including age, length of time post-spinal cord injury, neurologic level of injury, sex, gait speed, lower-extremity motor scores (LEMS), upper-extremity motor scores (UEMS), and durable medical equipment device use, are provided in Table 2. All informants had established multiple options for community mobility (ie, multiple devices to support either walking or wheeled mobility) that were informed by an analysis of their body function and structures, frequently encountered environmental factors, and the task demands required to navigate their individual community mobility goals. Separate from the interaction of these factors, each informant expressed their perspective on disability as being influential in choosing primary methods of community mobility. Informants were in varied chronicity after their injury, and each spoke of this ongoing analysis since their injury. Therefore, each individual’s mobility mode and supportive equipment were evolving with both time and the lived experience of disability.

Figure 1 depicts the interaction of the two primary themes, and the iterative analysis that each informant described when navigating ongoing community mobility method selection. Two main themes emerged: (1) interaction of the environment, task demands, and body function and structure characteristics; and (2) perspectives on disability.

Interaction of Environment, Task Demands, and Body Function and Structure Characteristics.

All informants described a process of planning prior to selecting a mode of community mobility, as all individuals had established more than one mobility option to navigate the community. Informants considered these three primary factors and the risks associated with each. Included were: (1) the environments encountered during a community outing; (2) the task demands; and (3) the individual’s body structure and function characteristics at the time of community mobility, as well as the changes to those body structure and function characteristics anticipated for the duration of the community outing.

Environments Encountered During a Community Outing. Informants considered the environment in which the community mobility tasks would occur. Environmental factors or conditions such as weather, accessibility, and terrain were described as factors affecting their mode selection. Informants reported weather was a factor and often a deterrent to community mobility. Informants shared that weather such as rain, ice, or snow could affect the safety and increase the risk of participating in community mobility, especially when walking. The interaction of weather and body function and structure characteristics was also discussed. Some informants described that weather (eg, cold or wind) could alter their body function and structure characteristics such as their tone, strength, or fatigue levels, among others. One informant described;

“So if it’s snowing or raining, um, traction is difficult for me, steps are particularly dangerous for me. I move very slowly, so in rain—and I can’t carry an umbrella— so it might be likely that I get soaked instead of staying dry, so you know that may keep me out, for instance. So the weather really is a factor of whether or not I would even get out in the community.” [Informant 1]

Community accessibility (or lack thereof) was also an environmental consideration for mobility method selection. This included accessibility of transportation as well as all environments encountered within the community outing. Informants shared:

“I started to realize that all stores are not wheelchair-friendly.” [Informant 2]

“…most restaurants aren’t really accessible.” [Informant 5]

“with a wheelchair in a restaurant, you know, sometimes the table doesn’t fit.” [Informant 7]

“….you need so many accommodations to use the power chair [in the community].” [Informant 4]

Informants also described how the varying environments (eg, terrain) encountered within community mobility could change the demands of the task, thereby linking the environmental features and task demands.

Task Demands. Informants described careful consideration of the demands of the community activity, including all elements of each task. This included the distance requirements, amount of standing, available sitting surfaces, the time available to complete all components, and how each of these factors would affect the individual’s physical state if either walking or using wheeled mobility. Informants also considered how they wanted to interact socially during these community outings, and how their choices of mobility method would affect the amount of energy they had to interact socially.

Some expressed that they would be “too tired” [Informant 2] when they got to their destination if they walked, or shared that it was “hard [for me] to have a real long conversation [while walking]” [Informant 6]. Many expressed that if it required too much effort to go a given distance in the given amount of time, then they might choose wheeled mobility for increased efficiency and safety.

Informants also considered transportation in relationship to the task demand and the type of transportation available in their local community. All the informants spoke of the difficulty of transportation with a wheelchair, especially powered wheelchairs. Even though transportation accessibility is an environmental consideration, informants also spoke of accessibility in relation to the task demands. They considered the effort it took to transport (eg, break down, lift into car, bring extra batteries, etc.) a wheelchair. For example, some informants described changing their mode of transportation (ie, taking the bus) in order to have their power wheelchair during the task, while others chose to walk, as powered wheelchair transportation was cumbersome.

Informants further described calculating the risks of choosing to navigate the task demands either by walking or using a form of wheeled mobility. Heavily influential in their decision of how they could navigate those task demands was their body function and structures at the time of a community outing, and the anticipated changes over the course of community mobility with their body function and structures.

Body Function and Structure Characteristics. Informants’ body function and structures, such as strength in the upper and lower limbs, heavily weighted into the decision to walk or use a particular form of wheeled mobility. For some, although they had the capacity to walk, they had inadequate cardiorespiratory fitness to navigate community-level distances. Informants described consideration of a variety of body functions and structure characteristics including strength, bowel and bladder function, motivation, upper-extremity function, fatigue, pain, and spasticity—both prior to, and during the anticipated fluctuation of, these faculties—over the duration of any community mobility outing. Their assessment of the current state and future predicted state (based on task demands and environment) affected their mobility choices.

Many informants specifically described the importance of upper-extremity function and fatigue when deciding between differing forms of wheeled mobility, which related to type of transportation. For many informants, the fact that they had tetraplegia made manual wheelchair propulsion and wheelchair breakdown into a car difficult or unattainable. Informants spoke of how decreased upper-body function made manual wheelchair propulsion inefficient, which resulted in them choosing between walking or power wheelchair mobility (either motorized powered or push-rim activated power assist wheels on a manual wheelchair frame). Many informants also described their fear of the negative factors associated with prolonged sitting as it related to wheelchair use. Two informants described this complex calculation of their body function and structure characteristics, the task demands, and environment, stating:

“Being a functioning quad, and my lack of arm, finger, and upper-body strength also made wheeled mobility an inconvenient option in terms of solo travel in a vehicle. So it would have limited me more towards van transportation because I am unable to pick up the chair and really having trouble moving the chair forward; therefore, my option was really the power chair, which would have been terrific except for all the consequences of sitting that long. I was more willing to take the risks of learning how to walk. I’m prone to falls, balance issues, but I think that, in my humble opinion, offsets the risks of long-time sitting, potential pressure issues, cardiovascular health, and just mental health for me.” [Informant 7]

“I always think about the entire round trip. So where am I going, how long am I going to be there, and then when do I come back? I relate that back to my bladder; where am I going, what’s the washroom situation going to be, how long am I going to be there, what have I drank like the last two hours before I left; …with the weather, am I gonna have difficulty on my own, will the weather affect my tone, is it going to be cool, excessively windy? Like, I get touch sensitivity, so if there is a lot of wind, I can get tone. Where I am going to, I like to know what I am getting myself into; so, is there [a] stair where I’m going, is it handicapped accessible? Who is going to be there that kind of understands my situation that I can rely on them if I need them? If I am going with my girls, what kind of atmosphere is it going to be? Am I going to be anxious because I have to keep an eye on them and then manage my own self?” [Informant 1]

Perspectives on Disability and Mobility Choice

Informants expressed their perspectives on disability and their perceptions of how individuals in the community reacted to them when using differing forms of mobility. Each informant had a unique perspective of how a mobility method related to his or her identity, how others would perceive that identity, and how this influenced their self-presentation. Some described that they felt more accepting of themselves or more like themselves when they were walking. Many informants shared that they walked because they felt it was a part of their “therapy” or rehabilitation process, even though they were not actively participating in formal therapy at the time of the interviews. In contrast, some described how a power wheelchair or a manual wheelchair allowed them to maintain an element of their personality that they could not achieve with their walking capacity. Provided below are selected quotes from each informant to highlight how their individual perspectives on disability, self-perception, and self-presentation related to their mobility modes and devices.

“You know, I mean, you are injured, you want to feel normal, you want people to see you as, I guess, as disabled but still normal… The scooter, I think they feel I am more handicapped than when I am with the crutches.” [Informant 1]

“I am not disabled. I consider myself differently-abled because there is nothing, and I mean nothing, that I cannot do that you can do. It may take an assistive device to get something done but I can still do it. I was a fast walker before my injury. I was always in a rush to get where I was going. The power wheelchair lets me get so much done.” [Informant 2]

“…[I]t’s not really disability to me; it’s less ability, hindered ability, you-gotta-work-around-it ability. My therapists encouraged me to get a power chair and I told them no…I’m going to get fat and lazier, so I wanted a manual wheelchair…I think when I am walking, people are more, is that the right word, cognizant. They are more aware of my presence, I don’t know why.” [Informant 3]

“…[T]he power chair made me feel more handicapped. It was fun to shoot down hallways and roads with it, but other than that, it’s just not good. You are not really doing anything. You are just sitting there.” [Informant 4]

“…[R]iding around in a chair you know, is not well, it’s not normal. Wanting to be a member of the normal community, I guess, you know, physical normal community. You know, and I do not think of myself as a member of the disabled community.” [Informant 5]

“Normal people walk and people who are injured need to be in wheelchairs because they are injured. And I like to try to be as normal as possible. I just don’t like being at butt-level while everybody is standing.” [Informant 6]

“…[Using a wheelchair is] less fulfilling…. [I feel] less whole, if you will. Crutches represent my battle against my disability…They are a symbol of my independence and how hard I have worked. Sitting in a chair, the first thing people see when they see you, is not you, they see the chair, and they make a lot of assumptions when you are in a wheelchair. I know I am injured; I don’t need to be reminding everybody else all the time…I think that people see me coming with the crutches and they are less, I don’t want to say less uncomfortable, but they are less judgmental.” [Informant 7]

Informants further described how their perspective of disability, self-perception, and self-presentation evolved over time.

“..[I]t was very important for me right after my injury to be as, to get as far away as possible from being disabled…but you know later, I wasn’t quite as self-conscious anymore, maybe. Um, you know, or accepting, I guess. A little less angry.” [Informant 5]

            “I didn’t have … [self-esteem] when I first got in the wheelchair. I was not sure of myself. I went through the why me’s, and the woe is me, and the everything you could think of. But I bounced back, and [it’s] what I think takes a lot of people a long time to do.” [Informant 2]

Every informant described the positive influence of interacting with others who had disabilities. The interaction with other individuals who also experienced disability provided support, which, over time, helped to shape their view of disability, self-acceptance, and strategies used for self-presentation relating to mobility modes and devices.

“…[B]eing at the fitness center seein’ that ok, I’m normal, everybody in here is normal, it’s the new normal.” [Informant 2]

“…Well, because you aren’t the only one who is busted and screwed up. They are busted, too. I get to hear other people’s problems.” [Informant 6]

Informants also expressed how their mode of mobility was associated with either a lack of awareness or over-awareness from others. Many informants felt that others were not as “aware” [Informants 1, 3, 7] of them when they were in a wheelchair. Informants expressed their inability to be at “eye-level” [Informant 1, 2, 5, 6, 7] when using a wheelchair, which not only reduced others’ awareness of them in the community, but also reduced their ability to interact socially. Informants also expressed a hyper-awareness from individuals in the community, noting that they frequently received offers for physical assistance when it was not required, particularly when walking.

Discussion

The results of this study offer the perspectives from individuals who are living in the community with motor iSCI, who have the capacity to walk and navigate community mobility decisions. This research study aimed to “give voice”33 to individuals with motor iSCI navigating community mobility choices in an effort to enhance patient-centered care. The insight gleaned from these informants’ narratives can help clinicians and researchers gain a deeper understanding of the unique challenges that individuals with iSCI encounter in relationship to community mobility mode and device choices. The results also provide a peer perspective for individuals with iSCI on the unique challenges of community mobility for individuals who experience disability from spinal cord injury.

One of the primary themes that emerged from this analysis resembles the classic model of motor control that attempts to explain and understand the complexity of the execution of a single movement.34 In this model, movement is described to emerge from the interaction of the task, individual, and the environment, where the individual must generate movement in order to meet the specific demands of the task in the environment in which it is performed.34 This motor-control framework is used to understand movement and to structure appropriate challenges for patients, as therapists devote significant time to retrain individuals with neurologic disease or injury in regaining functional movements. Interestingly, this analysis uncovered that informants structured their decisions considering the same elements as the already-established framework. However, informants considered how the interaction of these three factors (task, individual, and environment) would change over the course of the community outing, and their perspectives on disability further influenced their choices.

The recovery of walking abilities is a primary goal of individuals who have experienced a motor incomplete spinal cord injury3 and the positive effects of participating in walking training have been elucidated.35-39 But many informants of differing ambulatory capacity reported the use of both walking and wheeled mobility with differing devices, depending on the environmental circumstances, the task demands, and their body structure and function characteristics. Further, many informants utilized more than one mode of mobility during a single community activity.

Flexibility of Choice

All informants reported flexibility in how they navigated community mobility. This flexibility allowed them to accomplish the unique demands of a multitude of mobility-related activities. An analysis by Riggins et al40 explored quality of life factors and change in mobility status from inpatient rehabilitation to one-year post-spinal cord injury. Individuals who transitioned from primarily walking at discharge from inpatient rehabilitation to wheelchair use at one year post-injury had reduced quality of life, higher depression, and higher pain severity than those who maintained their mobility status or who transitioned from wheelchair use to walking.40 Although individuals who experience a spinal cord injury primarily want to pursue independent walking, these data should challenge clinicians to not view walking and wheelchair use as dichotomous choices. Instead, healthcare providers should encourage individuals to explore differing modes and devices for mobility to maximize flexibility, fluidity, and community engagement.

Economic Factors. There are, however, economic barriers that may limit the recommendation of having more than one device for community mobility. Many insurance companies will only pay for a primary device to navigate the home environment once every five years; that could have a considerable deductible.41 This would require individuals to cover both the cost of the deductible and the full expense of any additional device. Within this analysis, no informants described financial limitations in acquiring and maintaining their devices. This is a potential limitation of the study, as individuals that experience spinal cord injury have frequently been reported to experience a significant economic impact from sustaining the injury.42

Peers as Mentors

All informants expressed the comforting and supportive effects of peer relationships, which coincides with data from other published reports.27,43,44 However, for many newly-injured patients, the patient-to-patient peer relationship frequently involves another individual with little lived experience of disability. Many may still possess an inherently negative view of their disability, and may still be processing what they perceive as profound loss. Clinicians may consider connecting individuals with peers living in the community to support each individual in developing their own disability identity, free from the inherently limited abled lens.

Stigma and Acceptance

Informants expressed frustration with their perception of how the community viewed and interacted with them due to their disability. These informants’ frustrations echo a multitude of previous data describing similar feelings of stigma from individuals when navigating the community with physical impairments that lead to gait deviations, or with a wheelchair.25,45 The presence of this stigma contributed to how each individual thought about mobility mode and self-presentation. However, with greater experience of living with a physical disability, individuals’ perspectives evolved over time, and all described becoming more accepting of their physical disability, a perspective echoed in separate cohorts.24 This fruition of “acceptance” of disability warrants attention. Many of these informants were many years or even decades past their injury and still expressed an internal struggle with accepting their disability.

Disability advocates strongly admonish the notion that disability is a “burden” with resultant physical impairments inherently negative44 and the reduction of these impairments inherently good.43 Rather, disability scholars and advocates argue the issue lies in the environmental barriers and social perspectives that oppress individuals living with disabilities.44 And, unfortunately, the opinion that disability is fundamentally undesirable is still omnipresent in both the medical field and able-bodied population.46,47 This perspective should challenge rehabilitation clinicians and the medical community alike to evaluate their own perceptions of disability, and consider how they might influence their effectiveness as a healthcare provider. It is a moral imperative that each and every health care provider become “allies with persons with disabilities in the struggle to promote changes in the social environment”.48

Study Limitation

One notable limitation of this study is that those who were purposefully sampled were also active and engaged in the research setting, which may further limit translation to individuals living in the community with iSCI. Even though all effort was used to ensure saturation, individuals who participated in this analysis were closely involved with both the research and medical setting, and their perspectives may be reflective of the negative attitudes toward disability embedded in those environments. Further research should focus on quantifying each of the generated theory subcomponents to understand how each of them affect mobility choices.

Conclusion

The results of this analysis serve to recommend that rehabilitation clinicians expose individuals with motor iSCI to a multitude of mobility modes and devices, champion the development of peer-support programs within their healthcare and community environments, participate in deep self-discovery in inherent attitudes toward disability, and partner with individuals in the fight against disability discrimination in our healthcare systems and communities.

Affiliations

Carey L. Holleran, MPT, DHS, NCS1,2

Jennifer Fogo, PhD, OTR2,3

Stephanie A. Miller, PT, PhD, NCS2,4

  1. George Hornby, PT, PhD1,5,6

1 Program in Physical Therapy, Washington University in St. Louis, MO.

2 College of Health Sciences, Postprofessional Programs, University of Indianapolis, Indianapolis, IN.

3 School of Occupational Therapy, University of Indianapolis, Indianapolis, IN.

4 Krannert School of Physical Therapy, University of Indianapolis, Indianapolis, IN.

5 Indiana University School of Medicine, Department of Physical Medicine and Rehabilitation, Indianapolis, IN, USA.

6 Department of Physical Medicine and Rehabilitation, Northwestern University, Chicago, IL.

CLH – concept development, design, data collection/processing, analysis, writing
JLF – concept development, design, data collection/processing, analysis, critical review
SAM – analysis, critical review
TGH – critical review

Figure 1. Interaction of the two primary themes depicting the iterative and ongoing analysis that each informant described when navigating community mobility method selection.

Table 1: Interview Question Guide.

Table1_(3)

Table 2. Demographic Information. Push-rim activated power assist wheels (PAPAW); UE (upper extremity); LE (lower extremity); Motor Scores from American Impairment Scale from American Spinal Injury Association (out of 50 points).

Table_2

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25. Bailey KA, Gammage KL, van Ingen C, Ditor DS. Managing the stigma: exploring body image experiences and self-presentation among people with spinal cord injury. Health Psychol Open. 2016;3(1):2055102916650094.

26. Baumeister RF, Hutton DG. Self-presentation theory: self-construction and audience pleasing. Theories Group Behav. 1987:71-87.

27. Jannings W, Pryor J. The experiences and needs of persons with spinal cord injury who can walk. Disabil Rehabil. 2012;34(21):1820-1826.

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35. Hicks AL, Adams MM, Martin Ginis K, et al. Long-term body-weight-supported treadmill training and subsequent follow-up in persons with chronic SCI: effects on functional walking ability and measures of subjective well-being. Spinal Cord. 2005;43(5):291-298.

36. Fuhrer MJ, Rintala DH, Hart KA, Clearman R, Young ME. Relationship of life satisfaction to impairment, disability, and handicap among persons with spinal cord injury living in the community. Arch Phys Med Rehabil. 1992;73(6):552-557.

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Community Mobility Method Selection in Individuals With iSCI: A Qualitative Analysis

Carey L. Holleran, MPT, DHS, NCS; Jennifer Fogo, PhD, OTR; Stephanie A. Miller, PT, PhD, NCS; T. George Hornby, PT, PhD

A primary rehabilitation goal for individuals with motor incomplete spinal cord injury (iSCI) is to regain their walking abilities. But what factors influence their paths to achieving that goal? Although quantitative information may be readily available in the clinic, these authors note that there is a paucity of qualitative information detailing each individual’s personal choices regarding mobility methods. Through extensive interviews, this groundbreaking study presents a range of deeper factors to consider when working with an individual to achieve community mobility.

About the Author(s)

Carey L. Holleran, PT, MPT, DHS, NCS

Dr. Carey L Holleran, PT, MPT, DHS, NCS is an Associate Professor of Physical Therapy and Neurology and the Assistant Director of Student Assessment and Program Evaluation in the Program in Physical Therapy at Washington University School of Medicine in St. Louis. Dr. Holleran’s scholarship has focused on recovery after spinal cord injury and stroke and neurologic rehabilitation. Through many years of inpatient spinal cord injury clinical practice and research, she has developed a strong appreciation of how the humanities can influence clinical and research practices. She also values the importance of an explicit humanities curricula within DPT education.


This work is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International License.

]]> 7945 Alzheimer’s Disease and Emotions: An Interpretive Phenomenological Analysis of the Film “Still Alice” https://jhrehabredesign.ecdsdev.org/2019/04/15/alzheimers-disease-and-emotions-an-introspective-phenomenological-analysis-of-the-film-still-alice/ https://jhrehabredesign.ecdsdev.org/2019/04/15/alzheimers-disease-and-emotions-an-introspective-phenomenological-analysis-of-the-film-still-alice/#respond Mon, 15 Apr 2019 04:01:39 +0000 https://jhrehabredesign.ecdsdev.org/?p=5324

Alzheimer’s Disease and Emotions: An Interpretive Phenomenological Analysis of the Film “Still Alice”

Sean N. Halpin, MA & Sarah Caston, PT, DPT
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Table of Contents

Background: Despite the fact that Alzheimer’s disease (AD) afflicts millions of people in the United States, most Americans do not come into contact with anyone who has the disease. Due to this lack of firsthand experience with AD, the general public’s understanding about the experiences of individuals living with the disease, and their framework of expectations about it, are often built on social representations—such as films.

Objective: We examined representations of the lived experience of an individual with AD in the film Still Alice using qualitative methodology.

Method: The authors applied Interpretative Phenomenological Analysis (IPA), guided by Socio-emotional Adaptation Theory, to the film Still Alice. Following multiple careful readings of the film transcript, the authors observed the film while following the transcript, and finally viewed the film without referring to the transcript. Researchers created a provisional codebook defining overarching and subordinate themes as they emerged throughout the film.

Results: The experience of living with AD was represented in Still Alice by spanning the trajectory from pre-diagnosis through late-stage dementia. Overarching themes (and subordinate themes) emerged as the film progressed. They included:

  • Premorbid Context and Foreshadowing (Familial Relationships; Self-concept
  • Questioning Identity (Preservation of Self; Shifting Identity)
  • Coping and Family Role Shifts (Coping; Changing Caregiver/Family Dynamics)

 

Conclusion: The film Still Alice offers a first-hand representation of the experience of declining cognitive and physical abilities associated with AD. The protagonist’s personal struggles with her inevitable decline are interwoven within a complex web of her social relationships and psychosocial resources.

KEYWORDS: Alzheimer ’s Disease, Emotions, Motion Pictures; Qualitative Research[/vc_column_text][vc_column_text]

Introduction

As of 2018, Alzheimer’s disease (AD) afflicted an estimated 5.7 million Americans.1 Yet the general public has little contact with this isolated population,2 leading former Surgeon General Dr. David Satcher to call AD “the most under-recognized threat to public health in the 21st century.”3 Due to this lack of firsthand experience with AD, the general public’s expectations surrounding the disease are often built on social representations, such as those presented in film.4

AD Depicted in Film

The “circuit of culture” is a social theory that offers a lens through which to view and understand these social representations.5 In the circuit of culture, language, including that in film, provides representations that produce meaning. These meanings have the potential to influence the way people interact with their environment. Therefore, it is important to understand how AD is represented in film.

A limited number of studies have examined representations of AD in film; however, they are often either simply descriptive, or lack a rigorous methodological approach. Several of these published manuscripts take an editorial position and do not divulge the methods by which they came to their conclusions.6-10 Others identify a method of analysis but do not explain how the method was applied.11 Still, there are patterns that may be gleaned from the existing literature.

In one study, three independent researchers are described as viewing and then scoring 23 films based on the symptoms, capacities, and behaviors associated with AD that were presented in each.12 The authors concluded that the full range of AD symptoms are typically not represented in film.

In a descriptive study, Segers provided a robust documentation of how AD is described and presented in 24 films. He concluded that AD is rarely mentioned by name in the films, and is instead implied.13 In another study, framing analysis was used to review depictions of people with AD in film, newspapers, and literature, and noted that persons with dementia are typically represented in a negative light—as beings without identity.14 Overwhelmingly, current films tend to distance the viewer from the experience of having AD by focusing on the reactions of caregivers or other characters—ensuring that the experience of AD remains not relatable, and contributing further to the isolation of those with the disease.9

A Rare Perspective

In contrast, the film Still Alice provides a rare cinematic representation of cognitive decline from the perspective of the protagonist.7 Still Alice has also had an unprecedented reach for a film focusing on dementia, grossing $43.9 million worldwide.15

Based on the film’s perspective, the purpose of the current study was to examine representations in Still Alice of the lived experience of AD through Interpretative Phenomenological Analysis (IPA) guided by Socio-emotional Adaptation Theory.16 Socio-emotional Adaptation Theory posits that a combination of psychosocial resources (eg, formal caregiver support, informal caregiver support, self-efficacy, and adaptation) may predispose persons with AD toward various emotional responses. Team members included a gerontologist with expertise in qualitative methods and a doctorally-prepared physical therapist.

Method

The research team conducted an interpretative phenomenological analysis (IPA) of the film Still Alice with the intent of gaining a deeper understanding of the relationship between psychosocial factors and emotions presented in the film.17 IPA has philosophical roots in phenomenology. Phenomenology is a philosophical perspective for discovering and describing how consciousness makes sense of the world around us. 18 Phenomenology, which presents an individual’s raw perception of the world prior to any interpretation or analysis, elevates subjectivity as essential for human understanding. In rehabilitation, phenomenology provides clinicians with a first-person account of what it means and what it feels like to live with disability.

Based on phenomenology, IPA involves a descriptive, reflective, interpretive, and engaged mode of inquiry that seeks to understand the essence of experience.19 The detailed, interpretive analysis involved in IPA is best suited for small samples.20 As such, this research approach is appropriate for gaining a deeper understanding of the lived experience of the protagonist Alice Howland in the film Still Alice, as well as her social network, and the meaning they each assign to changing functional status related to Alzheimer’s disease.21

Data Collection

The authors obtained the original screenplay of Still Alice from a free online website (http://www.simplyscripts.com). A screenplay provides a ‘blueprint’ for a film, which is generally followed, but some liberties often are taken and the script is adjusted during filming and production.22 Therefore, the first author of this study carefully edited the Still Alice screenplay while watching the film, adjusting the text when needed to ensure it matched the final film product. The second author reviewed the transcribed screenplay to ensure it contained accurate text. Data management was facilitated through NVIVO 11 (QSR International Pty Ltd, London).

Data Analysis

The idiographic nature of IPA involved researchers immersing themselves in the transcript.23 Following multiple careful readings, each researcher then observed the film—first following along with the transcript, and then without the transcript. During this process, researchers noted voice inflection and cadence along with non-verbal characteristics of the film and actors in the margin of the transcript. Initial notes were made in the left-hand margin of the transcript to summarize content.

Codebook

The authors created a provisional codebook—with codes and definitions both from deductive codes based on the Socio-emotional Adaptation Theory and inductive codes from careful reading of the transcript—for use during the next phase of analysis.16 (Appendix). The codebook included each of the psychosocial components of the theory (eg, formal caregiver) along with emotions (eg, depression). During this stage, emergent themes were noted in the right-hand margin of the transcript and added to the codebook. For example, due to the protagonist’s use of technology to aid her memory and as a tool for communication, “technology” was added to the codebook. Finally, a list of superordinate themes (eg, premorbid context, questioning identity) was constructed through clustering of themes and the links between them (eg, patient, disengaged) to create the final codebook (Appendix). Resulting superordinate and sub-themes were repeatedly matched to the language and non-verbal cues (eg, actors’ behaviors, music, lighting) within the film to ensure they were grounded in the actors’ accounts.24

Analytical Rigor

The researchers took several steps to ensure analytical rigor, including triangulation and reflexivity.25 First, throughout the analysis phase, each researcher maintained a diary that included personal thoughts and reflections, in order to account for how the researcher’s own worldview might influence interpretation of the data.24 Additionally, both authors participated in analysis and interpretation of the data. Inter-rater reliability was evaluated with a Cohen’s Kappa statistic using the coding comparison function in NVIVO, with researchers meeting to discuss any discrepancies in coding. Of the 40 codes, 11 did not meet the threshold of at least 80% agreement after the first pass of coding. Researchers reviewed the definitions of these codes and revisited the transcripts separately. Following this second meeting, interrater reliability was assessed and the Cohen’s Kappa threshold was verified for all codes. Team members included a gerontologist researcher and a physical therapist. Finally, as the transcript was accessed from a free available website, the researchers viewed the film while consulting the transcript, and made corrections where appropriate to ensure the text was accurate.

Results

We identified three overarching themes in the film (eg, Premorbid Context and Foreshadowing; Questioning Identity; Coping and Family Role Shifts) along with associated subordinate themes that were nested within each overarching theme (eg, Familial Relationships, Self-concept; Preservation of Self, Shifting Identity; Coping, Changing Caregiver/Family Dynamics).

Premorbid Context and Foreshadowing

The beginning of the film highlights the premorbid context surrounding Alice Howland’s familial relationships and self-identity. These scenes provide foreshadowing of how her psychosocial resources interact with her experience of initial cognitive decline.

Sub-Theme: Familial Relationships

Alice, 50 years old, is the matriarch of a competitive but close family that values knowledge, intellect, and achievement. Her husband calls her, “The most beautiful and the most intelligent woman I have known in my entire life.” Her daughter Anna, son Tom, and husband John are all in traditionally esteemed fields of law, medicine, and science. Her daughter Lydia is the exception—an aspiring actress who lives far away from Alice in California. Several scenes near the beginning of the film depict the Howland family coming together for celebrations and talking often in-person or over the phone. Alice appears to have a particularly close connection with her daughter Anna; they are several times depicted playing a technology-based word game together.

Alice and John enjoy a marriage with shared intellectual interests and ambitious career pursuits. Alice and Anna share similar personality traits, including a desire for career success and achievement. Lydia, meanwhile, is disconnected from the rest of the family, despite the close nature of the family unit. There are several scenes where Anna disparages Lydia’s life choices; Alice attempts to convince Lydia that she should attend college to pursue a more productive career:

ALICE- Lydia, don’t you think it’s time you reconsidered things? You’re so smart. There’s so much more you could be doing with your life…

LYDIA- Like going to college?

ALICE- Yes! Yes! Like college.

LYDIA- Yeah. Like we’ve never talked about that before—every single day of my life. I figured out what I wanted to do and I’m doing it. It’s a good thing.

ALICE- But on whose dime?

LYDIA- You’re helping Tom with Med school. You helped Anna with law school.

ALICE- Sweetheart…those are real careers. I just don’t want you to limit your choices.

Despite their differences, it is clear that Alice and Lydia share a mutual love and respect; however, their differing opinions regarding the definition of success are a source of conflict.

Sub-Theme: Self-Concept

Alice is a professor of linguistics at an Ivy League university. Her position as an expert in the meaning and structure of language provides an important backdrop related to her future experience of cognitive decline. She presents herself as confident, articulate, and poised. Alice identifies strongly with her work in linguistics and in teaching. She works at a renowned institution and is on occasion asked to speak nationwide. She finds significant joy, purpose, and meaning in her work.

Throughout the initial scenes of the movie, Alice appears confident and is depicted as someone with a great deal of self-efficacy with respect to her work. When she first experiences difficulty finding her words during a well-practiced lecture, her audience is silent. Alice breaks the silence with a joke that elicits a laugh, saying, “I knew I shouldn’t have had that champagne.”

A significant shift in the film occurs when Alice gets lost while running in a familiar area. This is the first scene where the emotion of fear is evident in the protagonist; there is a shift toward an external locus of control, a personal belief that Alice’s situation is beyond her own control. During this scene, film effects are utilized to help the viewer experience Alice’s emotions. As Alice becomes lost, the depth of field becomes extremely shallow, blurring out everything but Alice; instrumental music fades to a dull echo. The scene lasts nearly a minute until the depth of field returns.

Questioning Identity

After receiving a diagnosis of AD, Alice struggles to accept her new identity as someone with dementia; she uses adaptive strategies to help her overcome early levels of impairment and to mask her decline from her family. Alice’s premorbid lifestyle and habits and her lack of understanding of her family history and genetic predisposition to AD, have made her appear to have a low risk for cognitive dysfunction. That reality can make acceptance, or even consideration, of the possibility of contracting AD challenging for a family whose values are so deeply rooted in intellectual identity.

 Sub-Theme: Preservation of Self

Without telling her family, Alice initially seeks to bolster her sense of self-control through multiple analog-and technology-based methods. She quizzes herself on word-recall while cooking. In addition, she dismisses her family so she can concentrate on making a previously memorized bread pudding recipe, for which she eventually must find a recipe using the Internet search engine on her phone.

Alice also begins to visit a neurologist to discuss her increasing memory lapses—unbeknownst to her family. An initial diagnosis is difficult as she has limited family history; her mother and sister died young and she describes her father as, “Incoherent. Incontinent. Um, to tell you the truth, we didn’t see a lot of each other.” Despite her neurologist’s urging, she does not bring her husband or a close relative to their second meeting, stating: “I really didn’t think that would be necessary.”

Sub-Theme: Shifting Identity

Despite several attempts to hide her cognitive decline from others, she eventually discusses the possibility of having AD with her husband. Although not unkind, he is dismissive of the notion—leading Alice to become angry:

JOHN- Well I think that this is ridiculous. It’s complete bullshit, you don’t have Alzheimer’s.

ALICE- God dammit! Why won’t you take me seriously? I know what I’m feeling. And it feels like my brain is fucking dying. And everything I’ve worked for in my entire life is going. It’s all going…

Once Alice and John receive the official diagnosis in the doctor’s office, the battle of acceptance versus denial is further complicated by strong emotions of fear, anxiety of the unknown, and worry for the future—in particular, the fear of stigma associated with AD as compared to other more socially-acceptable conditions:

ALICE- I wish I had cancer.

JOHN- Don’t say that.

ALICE- No, I do. I mean it. I mean I wouldn’t feel so ashamed. When people have cancer they wear pink ribbons for you and go on long walks and raise money. And you don’t have to feel like some kind of a…social…I can’t remember the word.

At this point in the film, there is a shift in Alice, whose fear moves from regarding her own circumstances to considering those of her children, who may be affected by this inheritable disorder. Each of her children responds differently to this news; Anna and Tom appear significantly frightened, sad, and in denial. Although Lydia is saddened, she presents with a more accepting tone, also intuitive to the fact that she had noticed some changes in her mother’s behavior when others had not. The realization of Alice’s inevitable decline is something that the whole family experiences, not just Alice.

Coping and Family Role Shifts

In the third part of the film, themes revolve around coping, and the changing caregiver/family dynamics. Alice’s decline becomes more rapid; film techniques are used to show her perspective. In one scene, Alice frantically searches for her phone. In the next scene, John discovers the phone in the freezer. Despite Alice’s stating that she was looking for the phone “last night,” John quietly tells Anna: “That was over a month ago.”

Sub-Theme: Coping

Alice attempts to maintain control of her destiny by creating an elaborate plan to test herself cognitively each day, then commit suicide once she is not able to answer a set of questions she has created. Eventually, however, Alice embraces her disease—culminating in a presentation to an AD advocacy group. Alice tells the audience:

“All my life I’ve accumulated memories; they’ve become, in a way, my most precious possessions…everything I’ve worked so hard for. Now all that is being ripped away…I still have moments in the day of pure happiness and joy. And please do not think that I am suffering. I am not suffering. I am struggling. Struggling to be a part of things. To stay connected to who I once was.”

Sub-Theme: Changing Caregiver/Family Dynamics

As Alice’s symptoms of AD progress and change, so do the roles of the family members. John shifts from husband, in equal standing with his wife, to caregiver, who has to assist Alice with activities of daily living. Although John attends to his caregiving duties, he withdraws in the area of emotional support. John displays coping behaviors by focusing on his work, and by declining Alice’s multiple requests to spend more time with her despite her pleas that “this might be the last year that I’m myself.”

Anna demonstrates infantilizing behavior (treating the other as a child) by discussing Alice’s health with others without acknowledging that Alice is present. The viewer notices a change in their relational dynamic, although subtler than John’s actions: Anna declines her mother’s support after receiving the confirmation that she has the gene for AD; she stops playing a technology-based word game with Alice. Again, as with John’s emotional withdrawal, infantilization is likely a coping mechanism for Anna, who is creating distance or space between herself and her mother. It is indicative of Anna’s not wishing to witness what her life may possibly be like in the future, now that her own likelihood of developing AD has been established.

Lydia, who was previously estranged from her family, slowly strengthens the bond with her mother and eventually becomes her caregiver. She also makes attempts to understand more about her mother’s experience. This strengthened bonding creates an acknowledgment of Alice inclusive of her AD that she is grateful to receive:

LYDIA- What is it like? I mean what does it actually feel like?…

ALICE- I’ve always been so defined by my intellect…I don’t know what I am going to lose next.

LYDIA- It sounds horrible.

ALICE- Thanks for asking.

Lydia’s empathic, rather than fearful approach, embracing the diagnosis rather than denying or shying away from it, creates a deeper connection that continues as Alice experiences greater levels of cognitive decline.

Discussion

The film Still Alice presents an example of how multiple intertwined relationships affect the perception of experiencing AD. A rich understanding of premorbid contexts and reactions between and within characters distinguishes Still Alice from other films, particularly as many others tend to isolate the character with AD, focusing on how they are different from people without the disease.9,14 As with the circuit of culture, this treatment of other people as different than oneself helps create and reinforce meaning, particularly among those with limited contact with persons who have AD.5 These representations of persons with AD in film are counterproductive for this population. Previous studies have identified the importance of social connectedness among the AD population for promoting resilience.26 As such, Socio-emotional Adaptation Theory was used as a guiding framework for understanding how psychosocial resources, including social connectedness, were represented in Still Alice.16 Films that present a broad range of emotional reactions among persons with AD of varying abilities are important for shaping social discourse.

Premorbid Context

In the current study, we found premorbid context to have an important role in the shifting family dynamics as Alice’s disease progressed. Prior to her diagnosis, Alice is represented as a strong, career-minded person who was “relentless” and “wanted everything and all at once.” After her diagnosis, however, she and her family struggled with a shifting self-perception of roles and identities. Alice and John’s marriage shifts from an egalitarian relationship to one that requires increasing care provided by one partner. Previous studies have found that this change in relationship status can be tumultuous.16,27 The trajectory of relationships evident in the film ranges from avoidance (Anna), to conflicted (John), to embracing (Lydia).

Sense of Self

This study also identified the protagonist’s strong need to preserve a sense of self despite declining physical and cognitive abilities. A preserved sense of self is achieved first through denial, followed by fear and anger, then finally acceptance, when she gives a speech to an Alzheimer’s advocacy group. Indeed, as mentioned previously, participation in socially meaningful activities has been shown to increase resilience among older adults.28 Yet, these emotions are not isolated, and instead shift in response to changing psychosocial circumstances such as the changing relationship expectations and balance between Alice and her family.

Film as Teaching Tool

The film Still Alice is potentially beneficial as a teaching tool for students who will be interacting with individuals with AD and their loved ones. Use of art and media in the classroom has been shown to be beneficial, as it engages the learner through multiple senses, including visual and auditory.29 Furthermore, media- or art- based learning activities can be especially useful where certain diagnoses are difficult to imagine, or are misunderstood, as in the case of a person with AD, or individuals with mental illness.11,30 Studies demonstrate that implementation of media-based activities in the classroom has a significant impact on individual perceptions of older persons—a group that is often misunderstood and negatively perceived by society.31 Healthcare workers and society at large often hold negative perceptions of individuals with AD, such as the expectation that they are “ornery.”2 These negative perceptions are held often by the same individuals who are charged with caring for them—thus posing a barrier to optimal care. Utilization of the film Still Alice in the classroom may provide learners with a different perspective of those diagnosed with AD, and has the potential to shift students’ and healthcare workers’ perceptions of individuals with AD from a primarily negative perspective to a more positive one.

Limitations

In the current study, we present results from the analysis of one film—chosen based on critical reviews and the knowledge that the person with AD was the central character portrayed in it. Although others have reviewed themes across multiple films addressing AD,12,13 we chose to examine a single film using rigorous qualitative methods. There are some limitations to our findings and results.

Although the portrayal of Alice does present a nuanced account of the experience of AD, several important characteristics of hers are atypical of the general AD population. In particular, early-onset AD affects a small subset of the population. (Alice is aged 50 years at its onset.) Further, as with many other films’ representations of AD, Alice is a highly-educated person with high socio-economic resources and familial support.13 For example, Alice eventually has a non-familial caregiver (Elena), continues to live in an expensive city (New York) despite her husband’s moving to another city, and has her daughter move from across the country to live with her. The film also only highlights the relationship with a single physician, rather than the team of clinicians that affects the care of a person with AD. Further, her physician is rarely highlighted in the film. Previous studies have indicated that the relationship with various clinicians, such as physicians and nurses, can affect the patient’s emotional response to their cognitive decline.16

Conclusion

Film can be a “powerful socializing agent;” it can provide the opportunity for deeper reflection on one’s own identity, and help a viewer understand elements of another person’s unique lived experience.32 Gaining perspective of what it is like to live with AD has important implications for society. AD has been classified as the 12th most burdensome disease in the United States, taking into account the impact of functional disability, caregiver burden, and years of life lost.33 A film such as Still Alice helps the audience appreciate the psychosocial implications that accompany a diagnosis of AD. It also delivers a strong message about the importance of resources, and family relationships, and how these factors directly affect emotions and coping. Still Alice depicts the lead character’s initial diagnosis and early progression of the disease. The portrayal of AD in Still Alice is different compared to a majority of media sources that focus primarily on the latter, more severe, stages of the disease, where the person with AD is depicted with limited independence, awareness, and decision-making ability. Showing a range of decline helps the audience recognize the progressive nature of AD, as well as understand the importance of retaining self-identity and dignity in its later stages.

The themes that emerge from the analysis of Still Alice are significant because they demonstrate film’s ability to portray the complex interplay of self-concept, emotions, family dynamics, and coping mechanisms that may be experienced by a person with AD. Gaining a deeper understanding of how a person’s emotions and self-identity change with the progression of AD will help healthcare workers and caregivers respond to and care for these individuals more effectively.

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  16. Halpin SN, Dillard RL, Puentes WJ. Socio-emotional adaptation theory: charting the emotional process of Alzheimer’s disease. 2016;57(4),1:696–706. https://academic.oup.com/gerontologist/article/57/4/696/2631987
  17. Smith JA, Eatough V. Interpretative phenomenological analysis. In: Breakwell GM, Hammond S, Fife-Schaw C, Smith JA, eds. Research Methods in Psychology (3rd ed.). London, UK: Sage; 2006.
  18. Husserl E. Ideas: General Introduction to Pure Phenomenology. London, UK: Routledge; 2012.
  19. Moustakas C. Phenomenological Research Methods. London, UK: Sage; 1994.
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  22. Macdonald IW. Behind the mask of the screenplay: the screen idea. Critical Cinema: Beyond Theory Practice. 2011;111.
  23. Shinebourn, P. The theoretical underpinnings of interpetative phenomenological analysis (IPA). J Soc Existential Anal. 2011;22(1).
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About the Author(s)

Sean N. Halpin, MA

Sean Halpin is a student in the Qualitative Research and Evaluation Methodologies doctoral program at University of Georgia. He has led studies related to his area of interest, non-pharmacological treatments for maintaining health into older age. Relatedly, Mr. Halpin is interested in how the humanities are used to shape public perceptions of various treatment and disease processes.

Sarah Caston, PT, DPT

Sarah Caston, PT, DPT is an assistant professor in Emory University’s Division of Physical Therapy, and a member of ACAPT’s Consortium for Humanities, Ethics, and Professionalism. She is a board certified neurologic clinical specialist in physical therapy. Dr. Caston incorporates humanities and narrative reflections into her areas of teaching. Dr. Caston demonstrates her passion for DPT student growth and well-being through co-directing Emory DPT’s Learning Community Program, and directing research on methods to improve student well-being. Dr. Caston’s additional scholarly interests include the intersection of the lived experience of individuals with disability with rehabilitation education and practice, ethics in rehabilitation, and DPT student well- being. She is passionate about promoting humanities practices and student self- reflection around the lived experiences of individuals in marginalized populations, social justice, and rehabilitation ethics.


This work is licensed under a Creative Commons Attribution 4.0 International License.

]]> https://jhrehabredesign.ecdsdev.org/2019/04/15/alzheimers-disease-and-emotions-an-introspective-phenomenological-analysis-of-the-film-still-alice/feed/ 0 5324 Eye Spy for Physical Therapy Graduate Education https://jhrehabredesign.ecdsdev.org/2018/11/08/eye-spy-for-physical-therapy-graduate-education-a-collaboration-with-the-gibbes-museum-of-art/ https://jhrehabredesign.ecdsdev.org/2018/11/08/eye-spy-for-physical-therapy-graduate-education-a-collaboration-with-the-gibbes-museum-of-art/#respond Thu, 08 Nov 2018 00:02:43 +0000 https://jhrehabredesign.ecdsdev.org/?p=4233

Eye Spy for Physical Therapy Graduate Education

Elise Detterbeck & Cynthia Dodds, PT, PhD & Sydney Hammond
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Table of Contents

“The best teachers are those that show you where to look, but don’t tell you what to see.”
Alexandra K. Trenfor

The attainment of expert knowledge and skills is essential to producing competent healthcare practitioners; however, competencies require expertise not only in knowledge and skill (Bloom’s Cognitive and Psychomotor domains), but also the ability to effectively observe and communicate (Bloom’s Affective domain).1,2 Although affective (emotional, feeling) skills are considered important, academic faculty often neglect to address students’ affective qualities due to their subjective and personal nature. Instructional methods designed to develop students’ affective skills can be challenging, but are worthwhile and should address the components of the domain: receiving (eg, listening, observing), responding (eg, participating, discussing), valuing (eg, inclusion, diversity, implicit behavior), organization (eg, balanced decision making, responsibility for one’s behavior), and characterization (eg, having values that guide behavior, self-reliance, cooperation, empathy).3

One innovative pedagogical approach targeting affective domain components is that of providing collaborative instruction led by health professions faculty and museum educators within an art museum setting using Visual Thinking Strategies (VTS).4 Philip Yenawine,4 a VTS expert, supports that these strategies provide students with the opportunity to think, develop, and share observations and ideas, to listen well, and to develop mutual understanding—all of which are relevant to students studying within healthcare fields.

Because museums are not typical healthcare educational settings and art-based experiences allow for different perspective-taking (taking another person’s viewpoint into account) and interpretations, they provide a non-judgmental and less authoritative setting for learning than hospitals and clinics. This approach allows healthcare students and faculty to safely contemplate more affective inquiries in an environment that allows bi-directional learning side-by-side rather than in the more typical top-down, hierarchical approach.5 VTS implementation into healthcare education has been successfully demonstrated among several investigators. Katz and Khoshbin6 report gains in diagnostic skills and teambuilding for medical students and interprofessional teams after their participation in VTS training. In addition, nurse educators have documented improvements in students’ clinical observation skills7 as well as communications and attitudes8 following practices using VTS training. Although not specific to VTS, Klappa and colleagues9 used the creation of art and a corresponding art show by doctor of physical therapy students to prompt new methods of communicating, thinking, and promoting the field of physical therapy.

In an effort to identify pedagogy that enriches instructional designs for development of a student’s affective domain, the Medical University of South Carolina’s (MUSC) College of Health Professions and Humanities committee funded a pilot opportunity for eight physical therapy students to study within the Gibbes Museum of Art located in Charleston, South Carolina with a physical therapy faculty member and professional museum educators. The purpose of this article is to describe curriculum development and program activities as well as discuss preliminary outcomes and feasibility associated with this pilot instructional opportunity involving humanities and physical therapy education.

Study Design

As part of the 2015 Harvard Macy Institute’s Program for Educators in Health Professions supported by the Gold Foundation, the corresponding author previously participated in a remarkable “Reflections in the Museum” session with trained museum educators as well as international and interprofessional colleagues at the Museum of Fine Arts, Boston. The incorporation of VTS was an integral part of “Reflections in the Museum,” with three questions applied to the observation of a work of art serving as the overarching VTS structure: (1) What is going on in this piece?; (2) What do you see that makes you say that?; and (3) What more can we find?

Other key elements of the experience worth noting include the facts that:

  1. The professionally trained museum educators were essential to the process, masterfully guiding the instruction and reflection.
  2. The neutral, non-healthcare environment provided a platform for the safe exchange of personal thoughts, feelings, and interpretations.
  3. Participants’ sharing supported the uptake of interprofessional and interpersonal insight, views, and perspective-taking.10

Believing that this process would have a positive impact on the affective domains of healthcare graduate students, the corresponding author contacted the Curator of Education at the Gibbes Museum of Art, a local museum within walking distance of the MUSC campus, to discuss a possible collaboration based on the concepts applied in “Reflections in a Museum.” Following several introductory meetings involving two museum educators, the pilot program, “Eye Spy for Physical Therapy Graduate Education: A Collaboration with the Gibbes Museum of Art,” was created. The course syllabus was developed and shared with doctorate of physical therapy students from the first- and second-year classes.

Course Development

Syllabus Course Description

Humanities in Healthcare and Healthcare Education are used to foster patient and healthcare worker self-care and resiliency (ie, playing a musical instrument or painting for enjoyment and pleasure), but also to improve the observation and communication skills necessary for delivering compassionate, collaborative care. As such, the MUSC College of Health Professions and Humanities committee is funding a pilot opportunity for eight physical therapy students to visit the Gibbes Museum of Art and study with faculty and professionally trained museum educators.

Objectives and Outcomes

Following participation in three visual-art learning sessions, the student will:

Objective 1: Demonstrate improved observation skills using vision, hearing, touching, smelling, and tasting (as appropriate). Student observation skills will be measured using a pre- and post-test.

Outcome 1: The observation skills pre- and post-test will use a painting entitled 502 Lucerne Street by Edward Rice. (Figure 1). During this 10-minute observational activity, students will answer the following questions:

  1. What do you see first?
  2. Can you list 5 other things you see?
  3. What does it mean? How does it make you feel?
  4. What are you going to do about it?

This pre- and post-test had been successfully used by members of the Gibbes Museum of Art practicing VTS with primary and secondary public-school children.

Figure 1:502 Lucerne Street, ca.1983-86, by Edward Rice; oil on canvas; Gibbes Museum of Art; Charleston, SC

Objective 2: Appreciate and respect the uniqueness of each visual art interpretation by peers as measured by qualitative methods during focus groups.

Outcome 2: A focus group, made up of participating students, two museum educators, the Curator of Education from the Gibbes Museum of Art, and a physical therapy faculty member, will address qualitative aspects of the course experience. It will occur over lunch 10 days following completion of the course. The questions posed by the physical therapy faculty member during the focus group will be:

  1. Do you think the experience will help you be a better healthcare provider? If so, how? If not, why?
  2. What were the best parts of this opportunity?
  3. Since this is a pilot opportunity, additional questions related to improving the experience will be asked. They will include:
    What are any suggestions you have for improving this project and/or its experience?
    How many sessions would be ideal?
    Should this project: (1) be mandatory or elective? (2) be interprofessional? (3) involve students lacking compassion, or demonstrating difficulty with interpersonal or interprofessional communication?
    Should this opportunity involve patients? If so, at the museum? Hospital as in-patient? Clinic as out-patient?
  4. Knowing what you know now, would you again participate in the program?
  5. Would you recommend the opportunity to others?

Objective 3: Students will demonstrate greater verbal communication confidence as measured by video recordings for verbal participation and clarity.

Outcome 3: In order to capture verbal communications for analysis, the large group activities will be audio-and video recorded using a Cannon HD camera (VIXIA HF R600) on a stationary tripod.

Review and Consent

Institutional Review Board approval was not required for this instructional experience, due to its classification as a quality improvement project. Participating students did sign consent forms for their participation, and for the recording of images and sound during the instructional experience at the Gibbes Museum of Art and focus group at MUSC.

Course Participants

The pilot course had faculty and funding support from the College of Health Professions Division of Physical Therapy at MUSC; therefore, physical therapy students were approached for participation. Eight students volunteered to participate in this learning opportunity. Three were in the first year of the physical therapy curriculum and five were in the second year. One white male and seven white females participated.

Course Implementation

Under the direction of two museum educators at the Gibbes Museum of Art, eight physical therapy students and one physical therapy faculty member participated in a weekly two-hour session over three consecutive weeks. This opportunity was offered in the evening after students’ coursework for the day was completed, and on an evening when the museum remained open to the public.

  1. As part of the first session, students completed the pre-test in a museum classroom before advancing into the actual museum.
  2. Each week of the course included two small group activities and one large group activity led by museum educators. Each week, art selections and lesson plans for these group activities were developed by the museum educators and reviewed with the MUSC faculty member (corresponding author). Although VTS was the framework for inquiry during the sessions, museum educators and the MUSC faculty member wove aspects of healthcare and/or patient-focused discussion into the group learning activities.
  3. During the small group activities, following the principles of VTS, the museum educators facilitated students’ discussions involving different paintings.
  4. Large group activities, also involving specifically-chosen pieces of art, were structured differently from small group discussion and are described in the Table.
  5. After the third and final session, students completed the post-test based on the painting entitled 502 Lucerne Street, the same painting that was observed during the pre-test. Evidence and findings concerning the intersection of VTS, healthcare education, and visual art was provided to students at the conclusion of the third and final session.

Results and Discussion

Qualitative, rather than quantitative, findings from our pilot course better informed the results and discussion.

Observation Skills

Pre- and post-test observation results using the painting 502 Lucerne Street revealed that students may have developed a slight improvement in their attention to detail, as their written responses were more descriptive. For example, on the pre-test, one student reported seeing “elderly woman sitting with cane, purple flowers, basking in sun, stairway with rail to door” and on post-test noted “line of the green grass at angle to house, light green/yellow/white short grass behind chair, shadow of chair, yellow flowers at corner of lawn.” Another student’s pre-test response was “hydrangeas, window unit, grass!, healthy shrubs, cane, second chair” with the post-test remarks including “green!, chairs (one empty), diagonals (yard, windows, cane), well-groomed landscape, home.”

Although post-test descriptions were to some extent more thorough, the pilot’s pre- and post-test question that asked students to “list 5 things other things you see” in the painting, failed to effectively capture substantive observational changes. In the future, we will follow Naghshineh’s lead,11 in which specific healthcare curricular content will be linked to carefully selected paintings in order to extract healthcare significance. Naghshineh and colleagues11 used Claude Monet’s La Japanese (Camille Money in Japanese Costume) to discuss a neurological examination of a patient, specifically related to balance. Future courses will attempt to narrow the observational focus of students to be more pointed and relevant to healthcare.

During small and large group activities, the students’ ability to extract meaningful information from visual detail was noticed. Students, museum educators, and faculty were surprised and pleased with the students’ capacity to extract details and construct creative interpretations. Take, for example, the section of the course where students created cinquain (simple, five-line) poems (see Table, Week 2); working with this format required students to be selective and organize information in a meaningful way. This type of summary and reorganization of information is known to be essential in the development of critical thinking and analysis skills.12 The process requires students to consider and synthesize details in order to create a meaningful whole.

Lastly, comparing the first to the third and final session, students noted they were better able to focus on the “whole picture” rather than isolated features within a painting. They compared this to identifying a patient as a “whole” person rather than defining the individual by their diagnoses or impairments. Recognizing and translating human-centeredness into patient care is an essential step in the process of becoming compassionate healthcare providers.

Communication, Reflection and Perspective-Taking

The use of a stationary video camera to capture and analyze verbal and non-verbal communications did not effectively work because the museum setting was a much more fluid environment than expected. Throughout small and large group activities, students, museum educators, and faculty frequently moved about a piece of art within the museum environment. As this project proceeds in the future, videographers will be employed to better capture the students’ verbal and non-verbal communications as they interact with each other, museum educators, and faculty in this rich environment. Not only will these video recordings make communication outcomes more measurable; the review of them by the students themselves may provide valuable opportunities for self-reflection and self-appraisal.

During the focus-group discussions at the end of the course, all the students said the experience may not have improved their cognitive and psychomotor abilities as healthcare providers, but it did enhance reflection. Although there is no hard evidence that reflective learning practices directly impact patient care,13 reflective practices do enhance learning.14 Using reflective practices (affective domain) in conjunction with knowledge (cognitive domain) and skill instruction (psychomotor domain) promotes better overall learning, which should increase the likelihood of improving human-centered healthcare practices. Although evidence does not yet exist within the literature to support this theory, the results of our pilot course may provide direction for a future longitudinal study that will examine the impact of affective training in students on direct patient care.

The museum setting provided a safe space for the students to express, discuss, and learn “what others thought,” therefore generating perspective-taking. This process encouraged reflection and thoughtfulness rather than judgment and reactivity—an extremely important skill to master prior to integration into stressful clinical settings. For example, one student shared that her family had often commented about her “indifferent” facial expressions, but she ignored their feedback because she felt she wasn’t indifferent toward other people. Following the museum experience, where multiple perspectives were shared and discussed, she began to reflect on her family’s feedback and considered how her demeanor might be affecting others. Recognition of this behavior will allow her to modify her facial expressions as needed during encounters with patients and colleagues, which should in turn enhance her professional performance.

Creativity

Activation of the students’ creative processes was a strength of this pilot project. Students enjoyed the opportunity to create within this novel learning environment. As healthcare students, much of their curriculum involves the uptake of important science, math, and technological knowledge and related psychomotor skills, often interfering with opportunities for creative expression. Using creative instructional strategies as well as being inspired by paintings and sculptures, the students enjoyed expressing meaning through art, such as in writing poems and interpreting sculptures in terms of capturing their movements. For example, in a popular exercise, students created cinquain poems (simple poems in a five-line format) using the process found in the Table, Week 2. See Figure 2 for their creative works.

Suggestions by Students, Museum Educators, and Faculty

Feedback from students, museum educators, and faculty was sought to improve the pilot course.

  1. Students strongly recommended that the course be an interprofessional and collaborative experience with healthcare students from different programs (eg, nursing, dentistry, basic science, medicine). Museum educators and faculty fully concurred.
  2. Students unanimously agreed that more sessions would be advisable, suggesting sessions every other week over a semester, which would equate to approximately seven sessions. Faculty and museum educators agreed; Naghshineh and colleagues11 documented greater improvement in the observation skills of medical students following eight or more art observation sessions. The group agreed that future Eye Spy courses would extend for eight sessions over a semester.
  3. Students, museum educators, and faculty unanimously agreed that patients and caregivers should be part of the Eye Spy experience. Patient and caregiver inclusion would begin in the museum setting and transition over time, and trials, into the hospital room and outpatient settings.
  4. Students supported the elective nature of the course. They expected that mandatory student participation might contaminate the experience for them; however, student discussions did encourage an Eye Spy model that would support participation of any peers who lack self-reflection. Such students could be referred to the course and encouraged by their peers or faculty to participate in it. Student mentors from previous Eye Spy courses could be influential in the recruitment and experiential process.
  5. All the students who participated in the pilot course said they would participate again, and would recommend the opportunity to other students.
  6. The students appreciated not being introduced to the evidence supporting the Eye Spy program until the last session. They believed that the introduction of evidence prior to the experience would have hampered the creative process they so enjoyed.
  7. The MUSC faculty and the Gibbes Museum faculty acknowledged the need to refine the topic toward more of a healthcare perspective, through the choice of images and questions designed to narrow the focus of observations made by students during the pre- and post-tests.

Feasibility

As it is with most newly-launched pilot educational projects, examining the feasibility of an instructional strategy is wise, especially when introducing a creative instructional method into a more traditional healthcare curricular environment and collaborating with a new community partner. While information shared in this article provides descriptions for curriculum development, program activities, and preliminary outcomes in hopes of encouraging replication, it was just as important to answer preliminary questions concerning feasibility.15 In the case of this project, the answer to the initial feasibility question of “can it work?”15 was “yes.”

Establishing a collaborative partnership between an academic institution and a local community-based museum was indeed possible. Learning and recognizing the importance of involving museum educators in the process was essential—more than expected—because of their specific VTS training and expertise. In answer to the question “does it work?”15 preliminary results indicated that students’ reflection, perspective-taking, and creativity were engaged. The question of “will it work?”15 will be left to future studies testing hypotheses related to the impact of humanities instruction on student learning as well as on healthcare students’ ability to deliver human-centered care once they are practicing healthcare providers.

Future Directions

With limited evidence concerning the incorporation of VTS and, more broadly, humanities education, into physical therapy and interprofessional healthcare education, this project served as an initial attempt to provide a particular course description and explore the feasibility of its implementation. Although VTS and other humanities strategies have demonstrated improvements in diagnostic ability, team building, communication, and observation skills,6-8 longitudinal studies are needed to examine whether such instructional strategies actually translate into students becoming more human-centered healthcare providers.

This pilot project establishes that VTS-enhanced reflection and perspective-taking in physical therapy education is effective; however, it remains to be seen whether similar work can enhance the affective domain qualities of healthcare students. If it can, then the next question to pose to researchers is, will improvements in affective domain qualities lead to improved human-centered clinical care by providers who participated in learning opportunities involving VTS and humanities? By systematically carrying out studies to answer these questions, longitudinal evidence can be compiled. With funding in place and using quantitative and qualitative methods, these authors are currently examining the observation skills and the verbal and nonverbal language skills of an interprofessional group of healthcare graduate students currently participating with museum educators, healthcare educators, and patients in eight sessions of visual exploration across museum and hospital settings.

Limitations

It is likely that selection bias impacted the results obtained from this pilot session. All the participating students were interested in art and had previous experience studying art and touring museums; therefore, they may have already possessed practiced communication and observation skills prior to their course participation. They also may have been more naturally comfortable observing and discussing personal reflections regarding the artwork. Additionally, involvement of students and a faculty member from only the physical therapy program may have limited the possible range of observations, communication, and creativity. Including interprofessional colleagues may enhance responsiveness in future studies.

Conclusion

Implementation of Eye Spy for Physical Therapy Graduate Education: A Collaboration with the Gibbes Museum of Art, a pilot project, was successful. Participating students demonstrated slight improvements in observation skills, and the ability to consider other perspectives. They also began to better explore the concept of human-centered care. Students also valued the opportunity to access and practice their creativity. Suggestions from students, museum educators, and faculty will enhance future implementation of an interprofessional Eye Spy for Graduate Education: A Collaboration with the Gibbes Museum of Art, ultimately supporting longitudinal work to identify a link between humanities-focused content within healthcare education, and human-centered care.

Acknowledgements

The MUSC students and faculty of Eye Spy for Physical Therapy Graduate Education: A Collaboration with the Gibbes Museum of Art would like to thank the Gibbes Museum of Art, Rebecca Sailor, Elise Detterbeck, and Debbie Passo for their invaluable support. Thank you also to the MUSC Humanities Committee and the College of Health Professions, Division of Physical Therapy, whose funding supported this pilot work. Thank you to Lisa Kerr, PhD, at the MUSC Center for Academic Excellence for editorial support. This project would not have been possible without the support of those mentioned here, and we are grateful. 

Appendix

Figure 2. Cinquain Poems, based on paintings at the Gibbes Museum of Art, Charleston, SC

Work: The 1920’s…the Migrants Arrive and Cast Their Ballots, 1974, by Jacob Lawrence; silk screen on paper; © 2015 The Jacob and Gwendolyn Knight Lawrence Foundation, Seattle / Artists Rights Society (ARS), New York

Poem by: Anonymous

Voters
Patient Eager
Queuing, Reading, Choosing
This is our first time
Citizens

Work: Olympic Games, 1971, by Jacob Lawrence; screenprint on paper; © 2015 The Jacob and Gwendolyn Knight Lawrence Foundation, Seattle / Artists Rights Society (ARS), New York

Poem By: Steven Phillips DPT Class of 2019

Boundaries
Reliant Restricted
Straining Resisting Pushing
A snapshot suspended in
air, yet grounded
Limitations

Work: Family from the Hiroshima series, 1983, by Jacob Lawrence; silk screen on paper; © 2015 The Jacob and Gwendolyn Knight Lawrence Foundation, Seattle / Artists Rights Society (ARS), New York

Poem by: Catherine Stone DPT Class of 2018

Pain
Deep, Broken
Crumbling, Crashing, Screaming
We are trying to be together, a family,
but we are torn & nothing can be the
Same

[/vc_column_text][/vc_column_inner][vc_column_inner width=”1/2″][vc_column_text]Work: Brotherhood for Peace, 1967, by Jacob Lawrence; lithograph on paper; © 2015 The Jacob and Gwendolyn Knight Lawrence Foundation, Seattle / Artists Rights Society (ARS), New York

Poem by: Lauren Vann, DPT Class of 2018

Brotherhood
Peaceful, Non-judgmental
Sharing, Helping, Hoping
Why can’t it always be like this?
One

Work: The Ant & The Grasshopper, 1997, by Jacob Lawrence; woodcut on paper; © 2015 The Jacob and Gwendolyn Knight Lawrence Foundation, Seattle / Artists Rights Society (ARS), New York

Poem by: Rebecca Rudsill, DPT Class of 2019

Caricature
Backlit, Angular
Playacting, Exaggerating, Squawking
Why are these little bugs so angry?
Shadows

Work: Carpenters, 1977, by Jacob Lawrence; offset lithograph on paper; © 2015 The Jacob and Gwendolyn Knight Lawrence Foundation, Seattle / Artists Rights Society (ARS), New York

Poem by: Katherine Hefner, DPT Class of 2018

Wood
Sturdy, Smooth
Building, Holding, Supporting
The saw cuts it
Tree

Work: Schomburg Library, 1987, by Jacob Lawrence; Lithograph on paper; © 2015 The Jacob and Gwendolyn Knight Lawrence Foundation, Seattle / Artists Rights Society (ARS), New York

Poem by: Anonymous

Book
Red, Hand
Reading, Sharing, Gathering
He is telling stories to his friends
Knowledge

Work: The Library, 1978, by Jacob Lawrence; silkscreen on paper; © 2015 The Jacob and Gwendolyn Knight Lawrence Foundation, Seattle / Artists Rights Society (ARS), New York

Poem by: Meghan Bowman, DPT Class of 2018

Seeker
Curious, Safe
Exploring, Feeling, Searching
He is eager to gain knowledge of
the unknown
Adventurer

[

Work: Aspiration, 1988, by Jacob Lawrence; lithograph on paper; © 2015 The Jacob and Gwendolyn Knight Lawrence Foundation, Seattle / Artists Rights Society (ARS), New York

Poem by: Josie Horne, DPT Class of 2018

Home
Silent, Still
Sitting, Reading, Sharing
The townspeople bustle about
Togetherness

Work: Play, 1999, by Jacob Lawrence; silk screen on paper; © 2015 The Jacob and Gwendolyn Knight Lawrence Foundation, Seattle / Artists Rights Society (ARS), New York Poem

by: Sydney Hammond, DPT Class of 2019

Children
Colorful, Carefree
Moving, Interactive, Laughing
Flow of playful joy
Youth

Poem by: Anonymous

Play
Colorful, Creative
Leaping, Dancing, Cartwheeling
Watch the Dance of Joy Among
friends
Smile

References

1.Bloom BS, Engelhart MD, Furst EJ, Hill WH, Krathwohl DR. Taxonomy of Educational Objectives: The Classification of Educational Goals. Handbook I: Cognitive Domain. New York, NY: David McKay Company; 1956. 

2.Krathwohl DR, Bloom BS, Masia BB. Taxonomy of Educational Objectives: The Classification of Educational Goals. Handbook II: Affective Domain. New York, NY: David McKay Company; 1964. 

3.Wilson LO. The Second Principle. 2017; http://thesecondprinciple.com/instructional-design/threedomainsoflearning/, 2017. Accessed March 21, 2017. 

4.Yenawine P. Visual Thinking Strategies: Using Art to Deepen Learning Across School Disciplines. Boston, MA: Harvard Education Press; 2013. 

5.Miller A, Grohe M, Khoshbin S, Katz JT. From the galleries to the clinic: applying art museum lessons to patient care. J Med Humanit. 2013;34(4):433-438. 

6.Katz JT, Khoshbin S. Can visual arts training improve physician performance? Trans Am Clin Climatol Assoc. 2014;125:331-341; discussion 341-332. 

7.Pellico LH, Friedlaender L, Fennie KP. Looking is not seeing: using art to improve observational skills. J Nurs Educ. 2009;48(11):648-653. 

8.Klugman CM, Peel J, Beckmann-Mendez D. Art rounds: teaching interprofessional students visual thinking strategies at one school. Acad Med. 2011;86(10):1266-1271. 

9.Klappa SG, Alles YB, Klappa SP. DPT program stages an art show using art to develop a heart for the profession of physical therapy. J Human Rehabil. 2017. https://scholarblogs.emory.edu/journalofhumanitiesinrehabilitation/2017/05/02/dpt-program-stages-an-art-show-using-art-to-develop-a-heart-for-the-profession-of-physical-therapy//. Accessed April 1, 2018. 

10.Gaufberg E, Williams R. Reflection in a museum setting: the personal responses tour. J  Grad Med Educ. 2011;December:546-549. 

11.Naghshineh S, Hafler JP, Miller AR, et al. Formal art observation training improves medical students’ visual diagnostic skills. J Gen Intern Med. 2008;23(7):991-997. 

12.Fiorella L, Mayer RE. Learning as a Generative Activity: Eight Learning Strategies That Promote Understanding. New York, NY: Cambridge University Press; 2015. 

13.Mamede S, Schmidt HG. The structure of reflective practice in medicine. Med Educ. 2004;38(12):1302-1308. 

14.Driessen E, van Tartwijk J, Dornan T. The self critical doctor: helping students become more reflective. BMJ. 2008;336(7648):827-830. 

15.Bowen DJ, Kreuter M, Spring B, et al. How we design feasibility studies. Am J Prev Med. 2009;36(5):452-457. 

About the Author(s)

Elise Detterbeck

Elise Detterbeck, a Museum Educator at the Gibbes Museum of Art, works with students &amp; adults of all ages, in both the museum &amp; in class rooms. Trained in the Visual Teaching Strategy method for art observation, her goal is to guide people through a conversation, aimed at self-discovery. The MUSC “Eye Spy” program for physical therapy students reinforced her belief that looking at art, &amp; responding to it, is a reliable &amp; engaging tool to train healthcare students to look deeper at their patients, for more empathy &amp; better diagnoses. The students responded enthusiastically to their new observation skills &amp; understood how they could connect working with pieces of art to their approach to caring for patients.

Cynthia Dodds, PT, PhD

Cynthia Dodds, PT, PhD is an Associate Professor at the Medical University of South Carolina. She regularly implements humanities instructional strategies into physical therapy education to enhance affective development of students. Her current project entitled Eye Spy for Development of Affective Qualities in Interprofessional Healthcare Students has South Carolina Clinical and Translational Research Team Science funding to examine students’ communication and observation skills within a museum setting.

Sydney Hammond

Sydney Hammond is a third-year student in the Doctor of Physical Therapy program at the Medical University of South Carolina. While pursuing her bachelor’s degree at Centre College, she had the opportunity to study the Chemistry of Artwork while spending a semester abroad in Strasbourg, France. As a physical therapy student, she has enjoyed integrating her love of the arts and humanities into patient care.

 

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]]> https://jhrehabredesign.ecdsdev.org/2018/11/08/eye-spy-for-physical-therapy-graduate-education-a-collaboration-with-the-gibbes-museum-of-art/feed/ 0 4233 Neuromuscular Scoliosis (and Resolution) as a Lived Experience for an Adult With Tetraplegia https://jhrehabredesign.ecdsdev.org/2018/04/30/neuromuscular-scoliosis-and-resolution-as-a-lived-experience-for-an-adult-with-tetraplegia/ https://jhrehabredesign.ecdsdev.org/2018/04/30/neuromuscular-scoliosis-and-resolution-as-a-lived-experience-for-an-adult-with-tetraplegia/#respond Mon, 30 Apr 2018 00:04:33 +0000 https://jhrehabredesign.ecdsdev.org/?p=3268

Neuromuscular Scoliosis (and Resolution) as a Lived Experience for an Adult With Tetraplegia

Jennifer Hastings, PT, PhD, NCS
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Table of Contents

Background:  Neuromuscular scoliosis is a common secondary complication following spinal cord injury (SCI). The common assumption in the literature and among medical professionals is that neuromuscular scoliosis is inevitable in individuals with damaged nervous systems who require full-time wheelchair use. Therefore, considering new-onset scoliosis as a treatable condition, not a permanent, inevitable complication, has significant quality-of-life implications.

Objective:  The research question that guided this study was: What is the lived experience for an individual with tetraplegia with new-onset neuromuscular scoliosis? More specifically, how did this condition impact his function and quality of life? And, what was the lived experience of interactions with healthcare providers during this episode of care?

Method:  Our participant was not specifically selected for this study; rather, he selected the researchers to investigate his lived experience. Our participant was compelled to share both the emotional turmoil of his experience and the successful outcome to provide research that will change the future approach to treating SCI individuals dealing with neuromuscular scoliosis. A phenomenological inquiry was conducted with qualitative comments extracted from our participant’s journal, medical records, and an interview and observations with our participant. Thematic analysis was conducted on all generated text.

Results: The themes identified were: (1) feelings of social isolation, (2) diminishing productivity at work, (3) losing control of function, (4) decreased independence, and (5) negative mental status. Resolution of the scoliosis reversed the downward psychosocial spiral.

Conclusion/Clinical Implication:  This study offers a critical description regarding the lived experience of dealing with the psychosocial implications of the development of new-onset neuromuscular scoliosis in an individual with chronic SCI.

KEYWORDS: Scoliosis, Quality of Life, Tetraplegia[/vc_column_text][vc_column_text]

Introduction

Approximately 282,000 people in the United States live with spinal cord injury (SCI); an estimated 17,000 new cases occur each year.1 The injury greatly impacts young adults, typically those aged less than 30 years. Some authors report as high as 80 percent of SCIs occur in males.2,3 The extent of the neurologic injury varies depending on the location of the damaged spinal cord. Cervical spine injuries result in tetraplegia (impairment in trunk and all four limbs), whereas thoracic and lumbar spine injuries typically result in paraplegia (some degree of trunk impairment and impairment of lower limbs). Learning to cope with such an injury can be a lifelong process, from the initial shock of the trauma to incorporating newly learned skills for performing daily activities. Paraplegia and tetraplegia not only impact the function of the physical body, but also carry psychosocial implications.

Depression and reports of low body image are common responses to a sudden traumatic SCI in which the individual is forced to redefine themselves and their life roles.4 This life-changing medical event can stimulate deep emotions related to loss of function, disability, and loss of independence. Learning to function physically with paralysis and the social stigma of using a wheelchair are huge challenges that individuals with new tetraplegia encounter during rehabilitation and throughout their lives. After this traumatic event, it takes perseverance to regain a sense of control of one’s life and to function independently. A study that researched the predictors of physical and mental health in adults found that the ability to be independent from others has the greatest positive impact on overall health.4

Co-morbid injuries or serious changes in health status are difficult for anyone to cope with; however, co-morbidities can be exacerbated in individuals with SCI who depend on a wheelchair for mobility because of the mental and physical challenges they already face daily. The development of secondary complications such as neuromuscular scoliosis can be physically debilitating to a person with tetraplegia because it impairs their functional ability to transfer, sit comfortably in their wheelchair, and perform activities of daily living. There is also an immense impact on psychological health because of the negative body image caused by a new spinal deformity. New-onset scoliosis may be particularly stressful for individuals with SCI due to the loss of the independence they worked hard to develop during their initial rehabilitation. However, how individuals experience such conditions has not been described. Thus, the purpose of this study was to uncover the lived experience of a man with tetraplegia and new-onset neuromuscular scoliosis, and the successful resolution of the new condition through nonsurgical interventions.

A Common Secondary Complication

Neuromuscular scoliosis is a common secondary complication following SCI, occurring due to neuromuscular imbalances that can eventually lead to complications including chronic pain, pulmonary insufficiency, and reduced lung capacity.5 The impact of these complications can dramatically limit independent self-care, negatively influence the individual’s quality of life, and be life-threatening.6

Once neuromuscular scoliosis is established in a person with tetraplegia, misalignment of the joints can create a noxious stimulus, which increases spasticity that may contribute to further muscular contracture, establishing a cycle of worsening scoliosis. The common assumption in the literature and among many medical professionals is that neuromuscular scoliosis development is inevitable in individuals with damaged nervous systems who require full-time wheelchair use; a traumatic paralysis of the cervical spine is said to have a 100-percent incidence of developing scoliosis within 10 years of the originating injury.7 The majority of research focuses on surgical correction of neuromuscular scoliosis; there is a significant lack of research into conservative interventions.

Current Treatment Options

Current treatment options to correct neuromuscular scoliosis include spinal bracing and surgical fusion; however, these options present many drawbacks. Although spinal bracing limits the progression of scoliosis, studies have shown that bracing can produce a negative impact on the patient’s function, self-esteem, and body image, ultimately leading to diminished patient compliance as well as contributing to subsequent psychological concerns.8,9,10

In many cases, surgical intervention can correct neuromuscular scoliosis before secondary complications occur. Although improvements in surgical technique have decreased the invasiveness of corrective spinal procedures, research has shown that surgical spinal fusion is still associated with major complications including reduced spinal mobility,11,12 which is a significant concern for the SCI population due to their already impaired mobility. Loss of spinal flexibility can cause pain, discomfort, and loss of function that can place further dependence on caretakers for assistance with transfers and other activities of daily living. Spinal fusions are performed routinely to correct spinal curvature from neuromuscular scoliosis in the pediatric population and have shown to improve quality of life and limit a life-compromising cardiopulmonary condition.13 However, there is limited research supporting spinal fusion for neuromuscular scoliosis in the adult tetraplegic population. Spinal surgery is an invasive intervention that includes potentially life-threatening risks such as infection, further damage to the spinal cord, pneumonia, blood clots, and other life-altering complications that may result in further disability.5 For some individuals, surgery can induce a detrimental psychological response and elicit fear of the pathology, as well as anxiety about the hospital, pain, and concerns of survival.13

A Non-Invasive Treatment Approach

A different approach for correcting spinal deformity from neuromuscular scoliosis was used with the patient studied for this report. The treating physical therapist recognized that the new-onset neuromuscular scoliosis likely had a new precipitating cause and was compounded by functional scoliosis. Neuromuscular scoliosis is a lateral deviation of the spine that occurs in the presence of asymmetric tone of the paraspinal musculature due to a neurologic impairment. The condition is frequently compounded by gravity. Functional scoliosis is the result of the force of gravity working on unsupported structures when gravity has a moment arm. Functional scoliosis will reverse in a supine position, where gravity is eliminated. Therapeutic seating may be used to stop progression of functional scoliosis in an individual who is a full-time wheelchair user. The intervention in this case was to eliminate the confounding functional scoliosis and then quiet the asymmetric tone that was creating the neuromuscular scoliosis. The authors suggest that restoring function and independence by this conservative approach allowed the individual to regain dignity and a sense of control in his life.

Method

The research question that guided this study was: What is the lived experience for an individual with tetraplegia with new-onset neuromuscular scoliosis? More specifically, how did this condition impact his function and quality of life? And, what was his lived experience of interactions with healthcare providers during this episode of care?

A phenomenological approach was used in this case study. Phenomenology is the study of consciousness or intent, deliberated from the first-person point of view. This philosophy is used to examine the ways a person associates meanings with a given experience.14 Our participant was not specifically selected for this study; rather, he selected the researchers to investigate his lived experience retrospectively to determine specific qualitative effects of his new-onset neuromuscular scoliosis compounded by his SCI. Our participant was compelled to share both the emotional turmoil of his experience and the successful outcome to provide research that will change the future approach to treating SCI individuals dealing with neuromuscular scoliosis.

Data Sources

Primary data sources included our participant’s journal, an in-person interview with the participant that was audio-recorded and transcribed, notes from direct observation in the participant’s home and place of work, and subjective comments recorded in physical therapy (PT) documentation. We conducted thematic analysis of all the text material. The order of analysis was that of: (1) the journal, (2) PT documentation, and (3) the interview transcript. During the interview the initial coding scheme of the researchers was validated by the participant. Subsequently, the text of the transcript was analyzed. All analysis was done first independently by each of two investigators reading and coding the text that was meaningful in relation to the guiding questions. The initial coding was followed by a discussion for consensus to identify themes. Quotations from the transcripts were collated under these themes and organized by a timeline of before, during, or after the conservative intervention period.

Participant Profile

Our participant was a 48-year-old male with C6 complete tetraplegia that was stable for approximately 30 years prior to new-onset neuromuscular scoliosis. Our participant maintained a personal journal for two years during the episode of his neuromuscular scoliosis that documented his thoughts, feelings, and frustrations with his secondary physical changes, including his physical appearance and pain. His primary care physician attributed the neuromuscular scoliosis to his being an older wheelchair-dependent individual; he was referred for a surgical consultation for spinal fusion to prevent the progression of the spinal curve. Our participant previously had a fusion to stabilize his cervical spine directly following his SCI and was appalled at the surgeon’s recommendation to place a spinal rod from thoracic vertebrae 4 to lumbar vertebrae 3.

Our participant was unwilling to accept that this was his only option and was determined to find someone to help him treat his scoliosis conservatively. Being an individual with long-term tetraplegia who works in the wheelchair industry, our participant independently sought a wheelchair seating specialist who also held the belief that scoliosis was not an inevitable secondary impairment after an SCI. The physical therapist recognized that the scoliosis was a new condition and believed it developed secondary to a new cause, which created increased and asymmetrical tone in his trunk. This asymmetrical tone caused misalignment in his sitting posture and, in turn, gravity exacerbated his deformity by compounding with functional scoliosis. Therefore, the seating specialist believed it was a treatable deformity, not a permanent, inevitable complication. A more thorough explanation of the seating intervention is published elsewhere, as is a quantitative analysis of the intervention process.15

Results

Five major themes regarding the lived experience of our participant before the conservative interventions took place emerged from our research. The themes identified were: (1) feelings of social isolation, (2) diminished productivity at work, (3) losing control of function, (4) decreased independence, and (5) negative mental status. Our participant recounted experiencing these emotions not in a linear fashion, but with some overlap and circuity.

Feelings of Social Isolation

Our participant reported that he was unable to comfortably socialize with family and friends:

I lost about a year and a half of comfortably socializing with family and friends. …I didn’t do as many activities, just didn’t want to, just wanted to go to bed when I got home.

Although his wife and children were supportive during this year and a half, they also felt the compounding effects of isolation. Our participant’s involvement in relationships with his family and friends were put on hold due to physical pain, exhaustion, or feeling uncomfortable socially.

Diminished Work Productivity

As the neuromuscular scoliosis and pain increased, our participant felt as if his productivity at work suffered. He also felt that his bad seating posture created a poor image and that potential clients would not want to conduct business with him.

Hard to put in the hours I needed to at work. …[P]hysical appearance is important to sell wheelchairs. 

Lost Control of Function

Our participant was concerned about his posture creating a poor base of stability, therefore affecting his ability to manually propel his wheelchair and fully participate in activities of daily living. He reported his spasticity as being so intense that he felt as if he had to lean forward to prevent falling out of his wheelchair.

Decreased Independence

Our participant lost considerable independence due to his decreased level of function. He reported that he became increasingly reliant on his wife for activities of daily living that he had performed independently prior to developing the neuromuscular scoliosis.

[I]t was really hard on my wife because I would just need more help, I was in pain.

Negative Mental Status

In addition to the everyday stressors of life that he was dealing with, such as financially supporting children through college, home remodeling projects, and new work ventures, our participant began to feel distressed and hopeless over his intense pain, poor body image, low self-esteem, and feelings of guilt. He also felt he was a burden on his wife, which ultimately led to depression.

I was suppressing stuff a lot, I was really down and frustrated.

Positive Change

Positive change in all five themes was recognized in the data associated with completing the conservative intervention.

Social: “I am back to full social participation.”

Work: “I can put in a long day at work and I am not fatigued by pain.”

Function and Independence: “I am much more functional and happier; transfers are no longer a problem.”

Mental Status: “I am very satisfied with where I am right now.”

Discussion

The data collected in this study contains the lived experience of a high-functioning individual with tetraplegia and how he dealt with secondary neuromuscular scoliosis. Although the reaction to conservative treatment may have been different in another person, this participant’s motivation and drive to find a conservative treatment option was unique to his situation, due to his feelings of horror toward a surgical intervention. He felt that he was not being given a real choice and that he was not being listened to. Because of his pre-existing surgical fixation from his initial injury, a surgical intervention would have resulted in fixed rods placed along the majority of his spine to create a stable symmetrical spinal column. He believed that the rods would have prevented the spinal motion necessary for functional activities such as twisting and bending to get dressed, drastically changing his independence for the worse. Even in the predicament of loss of function due to the neuromuscular scoliosis and pain, he felt the offered solution to be considerably worse.

Limitations

Because this story is retrospective, one may not be able to assume that our participant traveled through his emotions in the exact fashion presented; however, our participant’s report conveyed that as his function and independence decreased he developed a spiraling loss of self-esteem. It is evident in the photos captured of him prior to the start of therapy that our participant appeared to have given up on his self-image. He presents extremely disheveled, in sweatpants, with messy hair. Once the intervention is completed, he appears to take pride in his physical appearance with ironed slacks, collared shirt, and a symmetrical seated posture.

Our participant’s journals were limited in content and consistency, leading to gaps in reporting during the intervention period. Also, the in-person interview with our participant occurred more than a year after full correction of his scoliosis, which may have impacted the questions asked and our participant’s ability to recall facts and generate detailed responses to the interview questions. Nevertheless, the strength of this study is that the information is based within our participant’s lived experience in interactions with healthcare providers before, and during, the conservative intervention.

Detailed Review of the Participant’s Lived Experience

Our participant initially reported feelings about his inability to adequately perform his job duties. As an individual with tetraplegia working as a salesperson of durable medical equipment, specializing in wheelchairs, he felt his seated posture and physical appearance were vital to his credibility as a salesperson. If he did not appear physically functional, a client might look elsewhere for a wheelchair. In one of his many attempts to seek relief, he had a customized seat-back system installed in his manual wheelchair; however, he was further frustrated by the functional limitations of the system without resolving his other issues. He also resorted to using a power wheelchair when his pain and fatigue prevented him from functioning in his manual wheelchair. He was seeking something other than what was being offered by his healthcare providers, who continued to voice the belief that his duration of SCI would bring secondary complications that simply needed to be managed. The notes in his journal following a meeting with the orthopedic surgeon report that the physician told him new-onset neuromuscular was “not unusual with cervical SCI” but could have been “exacerbated by the MVA (a recent motor vehicle accident),” and that surgical intervention was “inevitable.”

When our participant met with the seating specialist, he described feelings of hopelessness and depression. The seating specialist took the time to listen to his concerns, understood how he was affected psychologically, and experimented with a treatment protocol that resulted in a successful outcome.

Central to the difference in this interaction was the listening. The participant relayed that he had been in a motor vehicle accident and he thought it might have contributed to this new problem. However, he had gone for imaging and there was no sign of fractures; his physicians did not see any connection. The seating specialist did not see new-onset neuromuscular scoliosis as inevitable, nor even expected, and therefore took the approach of investigating why it had occurred now, rather than just treating its presentation. The distress of the patient was acknowledged and understood, and some immediate relief for functional difficulty was offered as well by temporarily configuring his wheelchair for more trunk stability and accommodating postural asymmetry.

The exact cause that triggered the neuromuscular scoliosis is still unknown; however, the seating specialist hypothesized that it was due to the pull of asymmetrical muscle tone. This tone was presumed to be driven by a noxious stimulus, secondary to the recent motor vehicle accident. Despite the cause, once the tone developed and the malalignment was established, the lateral deviation became accentuated and perpetuated by gravity, pulling our participant into more significant spinal curvature and causing severe pain and decrease in function. Reversal of the negative psycho-social spiral began with listening, acknowledging, and then problem-solving in a collaborative manner.

Summary and Conclusion

This study offers a critical description regarding the lived experience of dealing with the psychosocial implications of the development of new-onset neuromuscular scoliosis in an individual with chronic SCI. Our participant described the process of his downward spiral, developing feelings of loss of control that resulted in hopelessness and depression. His feeling of loss of control was a product of repeated instances of medical specialists presuming his condition to be an inevitable progression of his SCI and ignoring his requests for an alternative to surgical intervention. However, once he began the conservative treatment process with the seating specialist, he reported regaining self-esteem and an improved body image, as well as a sense of regaining control of his life.

Qualitative information based within the individual’s actual lived experience through neurologic injuries and treatment is limited in the literature. Additional research should be conducted to further analyze the themes extracted in this study to increase the generalizability and applicability to all patients with secondary neuromuscular scoliosis. Based on the results reported in this study, treating clinicians should emphasize the individual patient’s goals, expectations, and beliefs regarding causation, be unafraid to explore various treatment protocols, and consider the psychological implication of all impairments.[/vc_column_text][vc_custom_heading text=”Acknowledgements” font_container=”tag:h3|text_align:left” use_theme_fonts=”yes”][vc_column_text]The author would like to thank our participant for his time and commitment to this project so that this research can benefit others in similar situations in the future.  This work is based upon a project completed by Christine Baniewich and Cedar Levine as part of their DPT education at the University of Puget Sound; the author was the treating clinician. We would also like to acknowledge our peer reviewers.

References

  1. National Spinal Cord Injury Statistical Center, Facts and Figures at a Glance. Birmingham, AL: University of Alabama at Birmingham, 2016.
  2. Bernhard M, Gries A, Kremer P, Böttiger BW. Spinal cord injury (SCI) – prehospital management. Resuscitation. 2005;66(2):127–139.
  3. Burke DA, Linden RD, Zhang YP, Maiste AC, Shields CB. Incidence rates and populations at risk for spinal cord injury: a regional study. Spinal Cord. 2001;39(5):274–278.
  4. Zdanowicz N, Lepiece B, Tordeurs D, Jacques D, Reynaert C. Predictability of levels of physical and mental health in adults and adolescents: a 2 years longitudinal study. Psychiatria Danubina. 2012;24:9–13.
  5. Goodman CC, Fuller KS. Genetic and developmental disorders. In: Pathology: Implications for the Physical Therapist. 3rd ed. Louis, MO: Saunders/Elsevier; 2009;1108-56.
  6. Obid P, Bevot A, Goll A, Leichtle C, Wülker N, Niemeyer T. Quality of life after surgery for neuromuscular scoliosis. Orthop Rev. 2013;5(1):e1.
  7. Mulchey MJ, Gaughan JP, Betz RR, Samdani AF, Barakat N, Hunter LN. Neuromuscular scoliosis in children with spinal cord injury. Top Spinal Cord Inj Rehabil. 2013;19(2):96-103.
  8. Maruyama T, Grivas TB, Kaspiris A. Effectiveness and outcomes of brace treatment: a systematic review. Physiother Theory Pract. 2011;27:26-42.
  9. Rivett L, Rothberg A, Stewart A, Berkowitz R. The relationship between quality of life and compliance to a brace protocol in adolescents with idiopathic scoliosis: a comparative study. BMC Musculoskelet Disord. 2009;10:5.
  10. Vasiliadis E, Grivas TB, Gkoltsiou K. Development and preliminary validation of Brace Questionnaire (BrQ): a new instrument for measuring quality of life of brace treated scoliotics. Scoliosis. 2006;1:7.
  11. Master DL , Connie PK, Jochen SH, et al. Wound infections after surgery for neuromuscular scoliosis: risk factors and treatment outcomes. Spine. 2011;36(3):E179-185.
  12. Master DL, Son-Hing JP, Poe-Kochert C, et al. Risk factors for major complications after surgery for neuromuscular scoliosis. Spine. 2011;36(7):564-571.
  13. Kiecolt-Glaser J, Page G, Marucha P, MacCallum R, Glaser R. Psychological influences on surgical recovery: perspectives from psychoneuroimmunology. Am Psychol. 1998;53:1209-1218.
  14. Moran D. Introduction to Phenomenology. London, England; New York, NY: Routledge; 2000.
  15. Hastings JD, Dickson J, Tracy L, Baniewich C, Levine C. Conservative treatment of neuromuscular scoliosis in adult tetraplegia: a case report. Arch Phys Med Rehabil. 2014;95(12):2491-2495.

About the Author(s)

Jennifer Hastings, PT, PhD, NCS

Jennifer Hastings, PT, PhD, NCS, is currently a professor at the University of Puget Sound, School of Physical Therapy where she shares responsibility for instruction in adult neurologic rehabilitation and teaches professional issues, adult systemic pathology and advanced clinical electives. She began teaching in 1995 and has maintained clinical practice since earning her PT license in 1985, working throughout the spectrum of neurologic care (ICU through outpatient and home health). She is an expert in spinal cord injury management, seating and wheelchair prescription, and orthopedic complications of neurologic disease. Dr. Hastings actively researches physical therapy interventions for neurologic clients and has published in Archives of Physical Medicine and Rehabilitation, Physical Therapy, and The American Journal of Physical Medicine and Rehabilitation. She encourages our profession to rebalance our thinking on evidenced based practice and to embrace real caring. To gain and maintain expertise, she believes strongly in listening to learn from all who are in our care.


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]]> https://jhrehabredesign.ecdsdev.org/2018/04/30/neuromuscular-scoliosis-and-resolution-as-a-lived-experience-for-an-adult-with-tetraplegia/feed/ 0 3268 The Rollercoaster Ride: The Lived Experience of People Acquiring a Physical Impairment in Youth https://jhrehabredesign.ecdsdev.org/2017/10/17/the-rollercoaster-ride-the-lived-experience-of-people-acquiring-a-physical-impairment-in-youth/ https://jhrehabredesign.ecdsdev.org/2017/10/17/the-rollercoaster-ride-the-lived-experience-of-people-acquiring-a-physical-impairment-in-youth/#respond Tue, 17 Oct 2017 00:05:51 +0000 https://jhrehabredesign.ecdsdev.org/?p=2884

The Rollercoaster Ride: The Lived Experience of People Acquiring a Physical Impairment in Youth

Maria Cynthia deBono
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Table of Contents

During our lifetimes, we embark on journeys, some planned and some unexpected. One unforeseen journey could be the acquiring of a physical impairment. What does it mean to follow such a journey in youth? This research addressed this question through a phenomenological study, guided by emancipatory principles. Using interpretative phenomenological analysis, information was gathered through interviews with six Maltese participants. The study discusses how this experience is visualized as a rollercoaster ride, yet stabilized by the sense of continuity and the support of significant others. There seems to be a fluctuating paradox of sameness and difference as individuals experience the phenomenon of physical impairment, reach new understandings, and develop a new mode of being-in-the-world.

Keywords: persons with disability, youth, acquired impairment, phenomenology[/vc_column_text][vc_column_text]

Introduction

During our lifetimes, we embark on different journeys, some of which we plan for and others we do not choose for ourselves. One such journey could be the acquiring of a physical impairment.1 According to the World Health Organization,2 approximately 15% of the global population have physical impairments, including congenital and acquired impairments – the latter involving either a sudden onset or a gradual progression. However, there are no statistical data regarding the prevalence of acquired impairment on an international level.1 Information is also limited regarding the long-term issues affecting people with acquired impairments.3 The dearth of information is equally evident in local statistics. For example, the latest local census in Malta, an archipelago in the Mediterranean sea between Sicily and the North African coast,4 indicates that 877 persons aged 20 to 40 years have a physical impairment; however, this figure includes persons with congenital and acquired impairments.

My desire to explore issues related to acquired impairments stems from my work as a physiotherapist. Frequently I ask myself what is occurring within my client who has discovered that he or she has acquired a permanent physical impairment. Gendreau and de la Sablonnière5 have noted that the person who acquires an impairment has the experiential knowledge to scrutinize the discrepancy between the experiences of having and not having an impairment, which can influence how one makes sense of the experience. The threat to life, the unexpected sudden onset of impairment, the slow recovery and the involved changes contribute to an experience that is different from that of chronic illness or congenital impairment.6

According to what the non-disabled world presents in media and cultural discourse,7 acquiring an impairment is mostly perceived as the unwanted tragedy that replaces the dreamed-of future.8 However, this view may only be what non-disabled persons assume. Numerous writers have noted that the experience of acquired impairment can yield affirmative positive outcomes.9-12 Gill13 described the border between the disabled and non-disabled communities as a troubling disjuncture. That border is an elusive one, and the shift from one side to the other can instantly happen to anyone.14 Bishop15 talked about the difficulty and emotional dynamics that professionals experience with clients who acquire an impairment. DeSanto-Madeya16 has stated that healthcare professionals need to learn about the real worlds of persons living with acquired impairments to realize the great difference between the rehabilitation experience and their clients’ actual lived experiences.

The acquiring of an impairment is vastly under-researched in terms of the lived experience, particularly relating to young people. While acknowledging the political reasons for concentrating on collective experiences of oppression during the last decades, the time has come to appreciate the diversity of individual experiences regarding acquired impairments.17 Empirical studies tend to be reductionist to particular life aspects and seem to be founded on ableist views, which consider the non-disabled experience as the “normal” basis for experience.18 Morris19 stated that there is little opportunity for persons with disabilities to represent their experiences. The situation is probably worse in Malta, given the small size of the country and the proportionally small number of disabled youth living there. The few local academic studies that have explored the experience of becoming impaired have focused on particular impairments.

I chose youth as the focus of my research on acquired impairment. Being young myself, I believe it is an important stage in life, and am interested in how this generational stage interlinks with the acquiring of an impairment. Accordingly, founded on the premise that the persons experiencing the phenomenon are the experts about their lived experiences, my research aimed to explore what the phenomenon of becoming physically impaired in youth entails; what it means to experience this phenomenon in youth; what the possible changes linked to it are; and if there is any impact from the surrounding others.

Perspective

Phenomenological research focuses on the lived experience, that is, “the embodied, socio-culturally and historically situated person who inhabits an intentionally interpreted and meaningfully lived world.”20(p181) Going “back to the things themselves,”21 such research values the concrete, subjective, lived experience and its attributed meanings, giving primacy to the expertise of the person experiencing the phenomenon. Phenomenological research acknowledges that the researcher cannot be detached, because “in order to see the world … we must break with our familiar acceptance of it.”22(pxiv) Heidegger introduced the term “being-in-the-world,” referring to the indissoluble embeddedness of the person in the meaningful world.23 We are thrown into the world and it is impossible to detach ourselves from this unity to examine the “lifeworld” objectively.24,25

Heidegger and Gadamer agreed that there is no meaning without interpretation.23 The meaningful world we live in forms the background for all our experiences and is interpreted during our meaning-making process. The circular interpretive links can be understood through the “hermeneutic circle,”25,26 in which the phenomenologist’s point of departure is shaped by past experience, knowledge, and pre-understandings, and these are acknowledged and reflected upon as the phenomenologist enters the field of data collection. The focus shifts from the researcher to the participant, as the phenomenologist attends closely to the participant’s account. The encounter moves the phenomenologist to a new position within the circle as new information is being told and fresh understandings are reached.27 Merleau-Ponty directed his attention to the body in understanding one’s lived experience, stating that “the body is the vehicle of being in the world.”22(p82) Existential phenomenologists believe that the lifeworld is composed of being a body in space, a self in time, and living with others.28

Some argue that phenomenology is not appropriate for disability studies because it has conventionally remained attached to the medicalized standpoint, making it potentially oppressive and reinforcing the tragedy model of disability through its emphasis on the impaired body, the personal experience, and attributed meanings.29-31However, the supreme value of insider knowledge and the centrality of the body are common aspects in the fields of phenomenology and disability studies. Heidegger does not restrict the term “being-in-the-world” to any ideal category of what makes a human being. Persons with disabilities are embedded in an a priori world as well.32 In phenomenological accounts, persons with disabilities are given the chance to represent themselves, proving that they have valuable lives and a significant position within society.33 A phenomenological attitude toward impairment presents the body as lived-through.30,31 In line with the social model of disability, as oppression and prejudice are lived through the impaired body, the impaired body reflects such behavior as part of the lived reality.31

This study attempted to blend hermeneutic phenomenology with emancipatory research. Its framework corresponded with emancipatory research through valuing the significance of the lived experience, including the experience of any oppression; being accountable to persons with disabilities and empowering them; being potentially transformative, utilizing non-exploitative methods; and encouraging social change.32,34

Method

In keeping with the phenomenological foundations of the study, interpretative phenomenological analysis (IPA) was considered the most appropriate methodological framework. Interpretative phenomenology differs from descriptive phenomenology in that it goes beyond the descriptions of an experience to focus on the meanings embedded in such an experience.35 Following Heidegger’s phenomenology, IPA emphasizes the worldliness of the lived experience within the social world,36 putting an emphasis on first-hand experience and the consideration of the context.20,37 In IPA studies, the person-in-context creates the first interpretation of the phenomenon, and the researcher interprets the participant’s phenomenological account, hence having a “double hermeneutic.”38 IPA has an idiographic commitment as it focuses on detailed exploration of the lived experiences of a few individuals.39-41 Its microscopic lens is focused on human diversity and variability,20 making it ideal to explore disability matters. This explains why the study had a small number of participants.

Participants were chosen through purposeful intensity sampling, which was beneficial in selecting “information-rich cases that manifest the phenomenon of interest intensely.”42(p234) The inclusion criteria were Maltese persons, aged 18 to 40 years, who had acquired a physical impairment of sudden onset in their youth. Participants must have had the impairment for at least four years and were living in the community. Persons with a brain injury or progressive conditions, or who had cognitive or communication difficulties, were not considered since the sample could possibly have become too diverse for an IPA study.43 The physiotherapists working within the Physiotherapy Outpatients Department at the local rehabilitation hospital identified potential participants. Prior to commencement of the research study, approval was sought from the faculty’s and university’s research ethics committees, as well as the hospital’s research committee and management.

In-depth, face-to-face interviews provided the raw material for this project. I opted for a topic-guided interview. The topic guide included topics that were repeatedly mentioned in the found literature as relevant to the phenomenon being studied. Observational notes were taken during the interviews. Each interview was followed by an accurate transcription of the audiotaped interview session. The transcript was supplemented with non-verbal communication, gestures, and behavioral responses, which were recorded in the observational notes. Participants verified their transcripts to make sure that the experiences had been captured accurately, providing them with control over their stories. Confidentiality and anonymity were guaranteed at all times, even beyond the study’s completion. Real names were replaced by fictitious ones to protect the informants’ identities. Given the small size of Malta, extra caution was taken to eliminate information that could have led to identifying the participants. I also kept a reflective diary throughout the research process to trace my personal journey within the process, particularly concerning my phenomenological and emancipatory positioning and the impact of my beliefs, values, and experiences.

Finlay44(p186) portrayed the analytic process as “a focused act of discovering out of silence, sediments of meaning, nuance, and texture.” Following IPA guidelines,37 the individual analysis was done manually after each interview, and then all interviews were compared in relation to each other. First, I engaged with the transcript of the interview through repeated close readings. The second stage involved note-taking, searching for recurring phrases, emerging questions, emotions, use of language, and potentially significant matters. In the third stage, the transcript was examined further to identify the patterns of meanings that were considered to capture the participant’s experience. The emergent themes were then listed and grouped together according to their similarity. A table was drawn to illustrate these themes for each participant. The clustered emergent themes were then compared among the different interview transcripts to analyze similarities and differences. While similar themes were grouped together into a structure of superordinate themes, due importance was given to differences in meanings among the participants as these were believed to contribute to the holistic understanding of the phenomenon.40,45 The fundamental meanings in the informants’ experiences formed the narrative account through translated verbatim extracts.46

Findings

These are the lived experiences of six Maltese individuals, aged 25 to 36 years (Table 1). Three of these individuals have a spinal cord injury; three have an amputation. Table 2 summarizes the themes and subthemes that were identified as common to all participants. It seems that rather than hitting the stop and restart buttons, the injury brought about a pause in the participants’ lives – and they all decided to hit the play button and move on. As one participant remarked: “You don’t have to restart life. You need to think a bit differently.” An element of ongoing fluidity was evident in how the participants were making sense of their lifeworld. This sense of fluidity is understandable; we are always changing as we move along in life.

 

Table 1: Demographic Representation of Participants

 GenderAgeAge @ OnsetYears Since InjuryImpairmentEducationWorkStatusLiving
RobertM36324AmputationSecondaryUnemployedSeparatedAlone; has carer
SamuelM25205ParaplegiaSecondaryPart-time accountantIn a relationshipWith parents
RebeccaF251510AmputationTertiaryFull-time studentIn a relationshipAlone
LukeM342014TetraplegiaVocationalSelf-employedIn a relationshipWith partner
AlexM351420AmputationSecondaryFull-time office work & part-timeSingle; fatherAlone
KeithM361620TetraplegiaTertiaryFull-time office workIn a relationshipWith partner

 

Table 2: Major Themes and Subthemes

Experiencing the rollercoaster rideo   The unexpected journey

o   Responding to the situation

o   Living a “normal” life

o   A streak of positivity

The turnovero   Working around the impairment

o   Moving home

o   It’s a right, not a favor

o   Perceiving life differently

o   Living day by day

Life goes on

o   I am the same, yet differento   The extended body

o   The youth in me

o   An element of difference

Living in a social world: the supporting roleo   Still our child

o   Involving kids

o   “Come on, friend”

o   “Who deserves me?”

o   “He was disabled too!”

o   The professional relationship

o   The expert knower

o   Within the community

 

1. Experiencing The Rollercoaster Ride

Contrary to the predictable adjustment processes depicted in psychology literature,47,48 from the moment of acquiring the physical impairment to today, life has unfolded as a rollercoaster ride for these youth, including both tough moments and enjoyable ventures, as also depicted in Cross, Kabel, and Lysack’s study.49 Keith described life as “one hell of a ride … but including everything. You know? When you ride a rollercoaster, you go: Whoooooo!”

Coming from a Western culture, which values youth, aesthetics, employment, and independence,50 participants had never considered the possibility of acquiring a permanent physical impairment, and they found themselves thrown into an unknown worldview. The unexpectedness and the sudden news about the permanency of the impairment led to a turmoil of feelings and doubts, which varied among participants. Robert expressed this as: “How could I ever have imagined that I’d be at work, that I’d be injured as I am and that even my family would leave me?”

The concept of loss was referred to predominantly in terms of the loss of physical independence in their first years following injury, rather than the loss of identity. For instance, Keith expressed that being a very active person, he “literally lost everything [and had] … to ask others to do everything for [him].” The initial concerns started to fade as the participants achieved better function in daily life, as they explored and succeeded in new adventures, and as new opportunities came their way. All participants referred to what they described as their personal character and emphasized its significance in their lived experiences. In line with most literature,51-54most participants believe that the fact that the injury occurred in their youth led to quicker adjustment.

Pushing their bodies beyond limits, the participants’ “primary focus was to walk and retry to become a bit normal” (Alex). In agreement with other phenomenological studies,50,55-57 independence for this group meant physical function, rather than autonomy. Most participants expressed their hope in terms of having an opportunity to improve their physical condition. However, such a possibility is not central to their worldview. Having already tried a stem cell procedure, Luke expressed that he still looks at his future as a wheelchair user because the chances of walking are very remote. These objectives of independence and normalcy might be criticized by disabled activists, but the concept of normalcy for the participants seems to mean that participants manage to do the things they wish to do. Keith mentioned that “the more the disabled person achieves independence, even the smallest thing, the more he’s going to be exposed to more and more open doors.”

All participants identified positive moments and outcomes within their lived experiences. From the memorable moments of achieving some sort of functional ability, to continuing to follow their dreams, to realizing the new opportunities ahead, to strengthening their existent relationships, each participant managed to get the best out of their lived experiences and move forward. The experience in itself has opened new opportunities for Keith, particularly in the educational and employment fields.

2. The “Turnover”

Robert said that “in a couple of seconds, your life turns upside-down.” All participants related to areas in their lives that involved changes, but not necessarily negatively. The impact of such changes varied among them. They explained how they have been working around their impairment effects, such as pain and fatigue, with respect to their daily routines, educational and employment opportunities, careers, and leisure and sports activities. Rebecca explained that there are things she can do and others she cannot, such as being a hairdresser – because it requires long hours of standing. All male participants were unable to continue with their previous occupations or employment plans. Some participants had to move to a new house due to the inaccessibility of their previous home.

Then there were other fundamental changes, particularly about one’s outlook on life. This is in keeping with findings from a study by Boswell, Dawson, and Heininger.58 Alex shifted his life focus to enjoying life; Keith started focusing on potential life opportunities and “giving value to things that [he] didn’t give to before.” All participants mentioned that since the injury they have been more cautious about the future, in terms of both plans and expectations. Alex learned to “live day by day and see what happens” as he became aware that plans can change instantly. Yet, participants’ accounts portray that life is there to be lived and they all have interesting future plans, such as marriage, new business ventures, and career developments. Samuel is planning to get married, Luke is looking for a new business, and Alex is saving money for holiday trips. Keith’s biggest wish is to become a politician. It is crucial to differentiate between changes brought about by the disability experience and changes that are related to other life aspects. For instance, Samuel mentioned that he experienced the loss of contact with some friends, but that it was more related to the fact that everyone was focusing on romantic relationships rather than friendships.

3. Life Goes On

The sense of continuity expressed in the participants’ accounts seems to have a stabilizing role. Participants illustrated how beyond their initial shock and inevitable changes, they continued to lead a fulfilling life. Rebecca expressed: “I, sort of automatically, continued my life.” Some participants pursued their ongoing relationships. Some continued with their sports, leisure, and social activities. Rebecca recalls with nostalgia that, after her accident, “between 18 and 21, [she] used to go to Paceville Friday, Saturday, and Sunday because [she] loved dancing there.” Luke said that he “never used to have any problems with these leisure things prior to [his] injury. Neither did [he] have any problems after, so [he] continued with the same routine right up to today.” The level of continuity varied among participants. Those who had valuable resources and connections managed to carry on with their lives much better. Resources varied from an employment opportunity within the partner’s company to having a supportive family and friends. Even amidst the uproar of acquiring the physical impairment and facing marital breakup, Robert is determined to continue with his life and grab whatever opportunity comes his way to be functionally better and the best father for his daughter.

4. I Am the Same, Yet Different

The greatest sense of continuity was noted regarding one’s identity. All participants tried to hold on to their previous identities as much as possible. Rebecca described herself as: “I’m Rebecca, I love photography, I love dancing, I love to socialize, and I have a prosthesis.” Previously a dancer, Keith became a dance teacher. Luke is still the car enthusiast and Alex identifies himself as a traveller and musician. These findings challenge the concepts of bereavement and biographical disruption,59,60 and deny the discourse within rehabilitation literature61,62 that claims that upon the acquiring of impairment, identity becomes founded in the disability experience. The notion of re-embodiment discussed by Papadimitriou30 was not discussed extensively by the participants, but it seems that the wheelchair or the prosthesis has been integrated into the body image of each participant. Rebecca considers her prosthesis as an extension of herself and “feels very limited without it.” She named each prosthetic leg she got along the years, as if she developed a relationship with each leg. However, she made it clear that her prosthesis is only part of her identity.

Most participants emphasized that their youth was not robbed from them. They associate themselves with being young and give importance to aesthetics, fashion, leisure, and future planning like any other youth, as noted by Wedgwood.63 Luke “always feel[s] like a youth and will keep on feeling like that … [He’s] trying not to get old.” What is remarkable about Luke is that the disabled identity is not perceived as a threat to his youth identity. Both identities coexist together without any hint of friction. Participants referred to the different roles they adopted in different contexts. For example, Alex is a young man, a worker, a musician, a traveller, a son and a parent, as well as an amputee. This notion of the coexistence of identities and roles compares well with the literature63,64 in that a person has multiple coexisting identities, each of which comes to the forefront according to contexts and time. Robert did not consider himself as a youth, but focused more on his identity as a parent.

Although most participants associate themselves with being young, they also acknowledged that they are not like any other youth. Alex expressed that sometimes he finds himself detached from others, feeling like an “outcast” and wondering how normal he is. Rebecca is aware that she’s not like her friend who’s 25, and that she hobbles and cannot wear shorts or skirts without being self-conscious. Yet most participants try to ignore such elements of difference. Accordingly, 4 out of the 6 participants do not consider themselves disabled. This is consistent with the assertion that persons with disabilities do not necessarily take on the disabled identity,65,66especially since they are still young.67 Alex explained that he has few functional limitations, such as his inability to run or take a long hike without pain, but many non-disabled persons are unable to do these activities as well. Participants expressed how the Maltese culture’s perceptions about persons with disabilities hold them back from identifying themselves as disabled. Participants tend to feel disabled only when other individuals and services are involved. Samuel, Luke, and Robert expressed that they want to lessen the amount of burden they are on others. Only Luke and Robert associated themselves with the disabled identity. In Luke’s eyes, disability has to do with lack of ability. He stated that his self-esteem is affected when he compares himself to individuals who can walk.

5. Living in a Social World: The Supporting Role

We share our lifeworld with others and thus our relationships with others are intertwined in our personal lived experiences. All participants recognized those persons who have been offering their support from the start. All participants identified the family as being crucial to their lived experiences. The strong familial bonds also seem to be reflected in the high level of support and parental influence received by the participants. These findings follow the conclusions drawn by Schembri Lia68 that Maltese families are resilient and are a source of guidance and support. With an affirmative approach, Rebecca’s parents perceived her as their daughter above all else and never treated her differently because of having an amputation. She recalled how once she told her dad she couldn’t wash the dishes because she didn’t have her prosthesis on at the time and how he just grabbed a high stool for her to sit on to wash them.

Alex and Robert testify that despite their physical impairments, they still fulfill the role of a parent. During his interview, Robert highlighted several aspects of any father’s role: being there to play with the child, passing on noble life values, supporting the child in all matters, and respecting the child’s position about marital issues.

Most participants emphasized the positive impact of their friends on their self-concepts and youth life after the injury. Friends were crucial in continuing to enjoy leisure activities and retain the joy of youth central to the person’s life. Keith’s friends “still saw [him] as Keith. So they would, for example, get [him] fashion necklaces … stereo, CDs, [and] the headphones to listen to Guns ‘N’ Roses” when he was in hospital, while Alex’s friends used to forget that he could not run when they used to play Ring and Run, as they “treat[ed] [him] as one of them.” There was unanimous agreement among participants that disabled peers are also important in their lives, as made equally evident in previous research.50,57,69,70 Having a shared worldview, there seems to be a greater sense of equality, empathy, and understanding among disabled peers, which distinguishes them from other types of social support networks.

Most participants noted that the acquiring of the physical impairment did influence their relationships with their partners or potential partners, but not necessarily in a negative way. Agreeing with Scherer,71 Keith claimed that self-perceptions might play a greater role than others’ perceptions in relationships. Accordingly, Rebecca stated: “I always approach it that if someone didn’t accept my leg, they didn’t really deserve me. Because it was part of me whether they like it or not …” Both Samuel and Luke were in a relationship at the time of injury, both of which continued afterwards. Participants described their partners as being very supportive and encouraging. Contrastingly, Robert’s injury was followed by a marital breakup, which made the lived experience more complex. North72 has noted that the acquiring of an impairment may challenge family dynamics and relationships.

Most participants expressed words of gratitude toward the healthcare professionals, for going the extra mile to support them. Rebecca confessed that her consultant was like a grandfather to her and “he used to come on a daily basis and give [her] a quote and he used to make [her] laugh and he was really sensitive.” This reveals how humanizing values, such as sensitivity, patience, positive attitudes, and understanding, can take priority over medical expertise. In line with the concept of “lifeworld-led care,”73 Keith conveyed that “the first thing that they [referring to therapists] consider is that you want to live. You have to continue with your life.”

Participants discussed the Maltese health services at length. The closing down of the spinal cord injury (SCI) specialized unit, the limitations within the prosthetic unit, the physical environment of certain healthcare settings, the lack of specialized training and resources, the challenge of putting knowledge into practice, and the fact that the services were offered to individuals of all ages under the same roof were all mentioned as downsides. Those participants who had the opportunity to receive health services abroad referred to the huge difference between Malta and locations abroad in terms of specialized settings and the rehabilitation experience, as well as the available resources and training opportunities.

Agreeing with Evans,74 most participants stressed the fact that they are the persons who know best about their own experiences. Samuel extended this element of expertise to his family members. Keith appreciated that some professionals acknowledged his own expertise and perceived him to be better than them at addressing people about the disability experience. Yet, it seems that some professionals are still holding strong onto the power of expertise.75,76 Both Samuel and Rebecca highlighted that having an impairment does not make you an expert knower about the experience of all persons with impairments. Each lived experience has its own expert knower, since no two experiences are the same, even when the impairment is similar, as highlighted by Samuel when he said that “everyone in his life is facing different situations, experiences, and obstacles.” Rebecca also referred to the role of media in the public portrayal of the disability experience. Persons with disabilities who speak in public must emphasize that their experiences are merely theirs, and they should not make sweeping statements about other persons with disabilities.

Additionally, all participants referred to their encounters with the non-disabled population. This issue revolved around the fact that individuals vary in their responses toward persons with disabilities, but the clear majority are usually negative since they are based on notions of disablism and ableism, as concluded by Loja, Costa, Hughes, and Menezes.77 Rebecca referred to the lack of exposure that makes individuals feel uncomfortable and unknowledgeable about how to react when they meet someone with an impairment. The lack of understanding about the experience of having an impairment lets curiosity take the lead in people’s questions.77Keith also commented that people are overprotective in their approach when “they mummy [disabled persons].” Amputees talked about hiding the prosthesis to avoid the labelling and pigeonholing process. Yet, those participants whose injury occurred more than 14 years ago acknowledged that there was an improvement along the years in people’s responses toward persons with disabilities in Malta. Keith associated this improvement with more active participation of persons with disabilities in the public arena, increased exposure, and improved knowledge.

Conclusion

Drawing on the experience of six Maltese persons who acquired a physical impairment in their youth, this study showed how there seems to be a fluctuating paradox of sameness and difference as the individuals experience their lived worlds, reach new understandings, and move along the hermeneutic circle to develop a new mode of being-in-the-world. The rollercoaster ride brings with it changes related to day-to-day routines, the home environment, employment opportunities, life perspectives, and future orientation. Such experience is also marked by positive outcomes, and the sense of continuity transpires as the stabilizer that enables the person to experience being-in-the-world in an ordinary way. Accordingly, public spaces should offer opportunities to persons with disabilities to present the disability experience as a different mode of being-in-the-world. The voice of the person must remain authentic when publishing stories of persons with disabilities; and disability-awareness campaigns ought to be geared to highlighting the lived reality of impairment, acknowledging both the ups and downs of such a lifeworld, as concluded by Hammell.78

Services need to ensure that their structures and allocation of resources respond to the needs of persons with disabilities, even if they are small in number. The concept of lifeworld-led care is new to the Maltese healthcare context, but it could be an enabling tool in improving local services and empowering our clients. Professionals need to start thinking of structuring services through a bottom-up approach to give primacy to the expert knower – the person with an impairment. Furthermore, the relevance of peer counselling among persons with disabilities needs to be discussed and developed into a formalized service.

This project has contributed new findings to an under-researched area and demonstrated the potential of phenomenology within disability studies. I consider the blend of hermeneutic phenomenology with emancipatory principles as a success, as participants were at the forefront of the entire research process. This combined approach was the first of its sort in Malta. Further phenomenologically-oriented emancipatory research within disability studies is required, particularly regarding acquired impairment and youth, and possibly having a longitudinal design. Such research can put more pressure on society and social institutions to question themselves and work harder to promote respect for persons with disabilities.

The small sample size can be perceived as a threat to representability and generalizability, but it was not the study’s purpose to proceed along those lines. The study was designed to focus on individual experiences, remaining attached to the day-to-day lived experiences of the participants and presenting possibilities of lived reality. The fact that participants had different types of physical impairments can be seen as a limitation in this study. However, physical variables may not be the main influencing factors when a person becomes impaired, as evident in this study and others.69 The study findings present a more holistic view of reality than studies that focus on specific physical and rehabilitative aspects, and give a new perspective to the experience of acquiring an impairment, incorporating elements of positivity and continuity. Should the study design have incorporated a longitudinal design, it could have possibly contributed further to the gap in current literature. Being a researcher and a physiotherapist with a special interest in disability studies may sound conflicting, but my dual role as a researcher and a physiotherapist enabled me to better analyze the disability experience from different standpoints. Reflexivity has been instrumental in holding on to the emancipatory aims of this research, acknowledging my positioning, and moving forward to new perspectives.

Ultimately, through this research journey, I reconfirmed my conviction that the person experiencing the phenomenon is the expert knower; this has strengthened my desire to better understand the person in his or her mode of being-in-the-world.

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About the Author(s)

Maria Cynthia deBono

Maria Cynthia deBono is a Maltese physiotherapist, with a special interest in rehabilitation, disability studies, client empowerment and education. She has worked in several rehabilitation settings for clients of all ages, and had the opportunity to visit rehabilitation hospitals in Finland and Slovenia. In 2015, she earned her Master’s Degree in Disability Studies at the University of Malta. Considering herself as a highly-motivated individual with an eagerness to acquire new knowledge and share it with others, she is a strong believer that the client is the expert knower and promotes the view that healthcare professionals can be enablers in the lives of persons with disability.


This work is licensed under a Creative Commons Attribution 4.0 International License.

]]> https://jhrehabredesign.ecdsdev.org/2017/10/17/the-rollercoaster-ride-the-lived-experience-of-people-acquiring-a-physical-impairment-in-youth/feed/ 0 2884 DPT Program Stages an Art Show: Using Art to Develop a Heart for the Profession of Physical Therapy https://jhrehabredesign.ecdsdev.org/2017/05/02/dpt-program-stages-an-art-show-using-art-to-develop-a-heart-for-the-profession-of-physical-therapy/ https://jhrehabredesign.ecdsdev.org/2017/05/02/dpt-program-stages-an-art-show-using-art-to-develop-a-heart-for-the-profession-of-physical-therapy/#respond Tue, 02 May 2017 12:07:47 +0000 https://jhrehabredesign.ecdsdev.org/?p=2364

DPT Program Stages an Art Show: Using Art to Develop a Heart for the Profession of Physical Therapy

Dr. Sue Klappa PT, PhD & Yvonne Beth Alles, DHA & Scott P. Klappa, MS
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Table of Contents

[vc_row content_placement=”top”][vc_column][vc_custom_heading text=”DPT Program Stages an Art Show: Using Art to Develop a Heart for the Profession of Physical Therapy” font_container=”tag:h1|text_align:left|color:%231e73be” use_theme_fonts=”yes”][vc_custom_heading text=”By Susan G. Klappa PT, PhD | Yvonne Beth Alles DHA | Scott P Klappa MS” font_container=”tag:h4|text_align:left|color:%23000000″ use_theme_fonts=”yes” css=”.vc_custom_1539545427314{padding-bottom: 30px !important;}”][vc_column_text]Download the article (pdf)[/vc_column_text][vc_row_inner][vc_column_inner width=”1/3″][vc_column_text]Susan G. Klappa PT, PhD*
(Corresponding Author)
Professor, Physical Therapist
Briar Cliff University
Doctor of Physical Therapy Program
3303 Rebecca Ave.
Sioux City, IA 51104
Email: Susan.klappa@briarcliff.edu
Phone: 651-335-9813[/vc_column_text][/vc_column_inner][vc_column_inner width=”1/3″][vc_column_text]Yvonne Beth Alles DHA*
Associate Professor
Allied Health
Kent Intermediate School District
Grand Rapids, Michigan
7080 Byron Center Ave.
Byron Center, MI 49315
Email:  eayalles88@gmail.com
Phone: 616-878-4494[/vc_column_text][/vc_column_inner][vc_column_inner width=”1/3″][vc_column_text]Scott P Klappa MS
Clinical Counselor
Lifespan
Burnsville, MN
Email:  spklappa@gmail.com
Phone: 952-322-0427[/vc_column_text][/vc_column_inner][/vc_row_inner][vc_column_text]There was no grant support for this work.
The IRB at the Davenport University approved the protocol for this study as exempt.
*Formerly from Davenport University

[/vc_column_text][vc_custom_heading text=”Abstract” font_container=”tag:h4|text_align:left” use_theme_fonts=”yes”][vc_column_text]Background: As part of a capstone course, Doctor of Physical Therapy (DPT) students created visual art projects to gain a deeper understanding of how physical therapy (PT) transforms society and improves quality of life for patients. These creative works were displayed in a public art show to engage and educate the community about PT. The purpose of this study was to examine the influence of an art show on professional beliefs of DPT students and on the local community’s understanding of the physical therapy profession.

Methods: Community-based participatory research (CBPR) methods incorporated phenomenological methods to examine lived experiences of DPT students staging an art show and the audience of attending community members. Students completed a questionnaire (n= 40) about their experiences and community members reflected in a journal guest book (n = 30). Data were analyzed for common themes and coded into categories.

Results: Students reported initial skepticism about the art show. The art experience was challenging, but helped students confirm a calling to the profession. Students reported learning new ways of thinking and communication through art to promote the PT profession. The community members reported gaining a better understanding of PT as a profession and feeling a deep connection to PT through the art show.

Conclusions: Art provides opportunities for creative and unique perspectives of thinking about familiar subjects. The PT art show provided students with new ways to problem solve and alternative methods of expressing the essence of their beliefs about transforming society. The community learned about the work of physical therapists through these creative projects and both students and community members were surprised by the power of art to connect them.

Key Words: physical therapist education, art show, community

Funding Source: None

 

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Introduction

All healthcare professionals, including physical therapists (PTs), encounter human suffering in their everyday practice as healers.  Human suffering can raise fundamental questions related to health, wellness, illness, disability, life or death, and grieving. These questions challenge practitioners who have been educated on behavioral objectives based on traditional cognitive, psychomotor, and affective domains of learning1 to provide adequate and compassionate care for their patients and families. To make situations more challenging, PTs may encounter ethical dilemmas when dealing with patient-practitioner interactions within the healthcare system.2 Physical therapists need to respond properly to situations involving ethical issues as well as manage the distress characterized by human suffering. Traditional classroom environments   where the skills and science of physical therapy are taught often fall short in pedagogy to engage students in the three domains of learning (cognitive, affective, psychomotor) within the clinical context.3 Students may cognitively understand how to physically respond to difficult situations but the deeper connection to the heart of distress, and how to respond, often cannot be taught through traditional pedagogical processes.

Medical humanities (MH) and health humanities (HH) are tools to help students develop the ability to communicate about difficult topics while also nurturing skills of observation, creativity, imagination, intuition, empathy and self-reflection, all crucial to holistic practice in healthcare.4-17 Defined by Hurwitz in 2003, MH involve the use of literature and the arts as a means of exploring and discussing human issues pertinent to the health professional.18  The term HH has been coined to represent a broader, more inclusive population of health professionals rather than just those studying medicine.19 This study examines the influence of an art show on professional beliefs of students and on the local community’s understanding of the physical therapy profession. Two hypotheses guided the questions for this investigation: 1) Doctor of Physical Therapy (DPT) students involved in the HH through visual arts will demonstrate a greater understanding of how physical therapy may transform society; and 2) community members will obtain a greater understanding of how physical therapy improves the human condition through the experience of an art show.

The American Physical Therapy Association (APTA) developed a new vision statement in 2013, stating physical therapists are active in “transforming society by optimizing movement to improve the human experience.”20, 21 Principals involved in this new vision statement were meant to inspire the profession and members of society. Eight guiding principles inform the APTA vision statement: identity, quality, collaboration, value, innovation, consumer-centricity, access/equity, and advocacy. Vision statements regarding a deeper connection to society are lofty, but they often beg the question:  How does a profession bring that vision to reality and connect with society?

Background

The study and exploration of art in general and the liberal arts more specifically provide a deeper connection to the human experience or condition.4-19 Liberal arts preparation has been viewed as both a necessary prerequisite and an unessential hurdle or relic in the preparation of healthcare professionals. Nevertheless, liberal arts are often a part of prerequisites into entry-level healthcare professional programs and are often neglected once the professional studies commence.4,6-8,11,13,15,17,18 Exposure to the liberal arts as a prerequisite is not enough. Pierce13 suggested liberal arts are a necessary component in the journey to competence as a healthcare provider because they enhance reflective practice skills by providing a structure for reflection. Pierce believed the study of the liberal arts helps students and professionals meet expanded roles as professional and societal citizens through a deeper connection to the human experience. Chomsky22 argued that individuals learn more about the human condition from the arts than from scientific literature alone. Perakis12 suggested while the arts in general may be both disturbing and eye-opening, visual images are powerful and catalyze change. As students examine their role in society from a professional perspective, engaging in HH through the visual arts provides an avenue to address reactions to human suffering. The visual arts provide an initiation to a deeper understanding of the human condition through focused self-reflection and personal transformation.6, 7, 11-15, 17,19

While discourse regarding holistic training of physicians and other healthcare professionals has embraced the pedagogy of HH, curricular inclusion of humanities in health professions has been both encouraged and debated.3-19 Proponents of HH claim inclusion of the arts in medical education, for instance, provides medical students with a greater ability to extract meaning from lived experiences17 and an ability to connect with shared human experiences.6-9, 11,12, 14, 15-19  Respect for individual differences, an enriched use of language, and expanded appreciation of others’ perspectives and lived experiences also occur as a result of exposure to HH and the visual arts.16 Smith et al15 suggest that including HH in the training of health professionals results in a deeper appreciation of the complexity of human experiences, a greater sensitivity to  individual differences, and a more nuanced understanding of illness, suffering, dying, and grieving. Smith et al15 further suggest that students involved in HH gain a greater ability to make deeper connections between personal and professional knowledge when dealing with situations infused with grief. Perakis12 suggests that students exposed to HH are better equipped to deal with suffering and afflictions of those they serve. Students also possess more sophisticated expressive and observational skills as a result of HH and art-based learning.8,12,14,15 Creating and experiencing visual art provides holistic techniques for deep self-reflection and allows access to sharing lived human experience in ways not possible through traditional discussion groups, patient simulations, written papers, or presentations.14

Insights from HH allow students and the community to view lived experiences from the eyes of the other and gain new ways of seeing possibilities for reaching full participation in life roles.6 Middleton and Drucquer11 discuss using an artist’s view as a means to approach patients through multiple lenses to adapt to challenging situations. The artist’s view may allow the healthcare practitioner to demonstrate improved human interaction and better pattern recognition skill when diagnosing patients. In addition, the visual arts can aid in self-care of the practitioner. After a long day of stress, patient-practitioner interactions and strategies of engaging with visual arts may lead to improved coping skills.11 Kirklin et al8 suggest that visual arts-based observational skills correlate to improved observational skills of doctors and nurses in determining when to refer patients with skin lesions to dermatology, thus ultimately improving patient-practitioner relations and overall care. Macnaughton10 suggests that the healthcare practitioner as artist seizes an opportunity for greater creativity in providing care, improving the human condition of both the patient and the practitioner.

The marriage of science and art is not new. In his history of medicine, Porter23 points out that the ancient Greeks emphasized the common ground between philosophy, medicine, and ethics. With the increased emphasis on evidence-based practice in physical therapy and medicine, the humanities and arts have been relegated to a lesser position. Yet, the essence of the patient and practitioner experiences may not be measured solely through numbers using positivistic approaches to research.24-28 The artist’s view of the world emphasizes common ground in society by providing insights into fundamental issues regarding human existence, including death and dying.11 The visual arts provide the community with a stage to learn about a profession and possibilities for improved function and transformation.

While there is much literature on the use of HH in the preparation of physicians, nurses, occupational therapists, and others such as emergency medical technicians, a paucity exists regarding the role the visual arts might play in physical therapist education. There was also no evidence in the literature about how the visual arts influenced the education of the community on the roles of physical therapists. This study attempts to fill those gaps in the literature.

Methods

To address the purpose and hypotheses of this study, community-based participatory research (CBPR) methods incorporate a phenomenological survey to examine lived experiences of DPT students staging an art show and community members attending the show. CBPR involves “a commitment to conducting research that shares power and engages community partners in the research process and benefits the communities involved, either through direct intervention or by translating research findings into interventions and policy change.”29 (p.4-5) More than a collaborative approach, CBPR involves building trust and sharing power through all phases of conceptualizing the research problem, conducting research, and disseminating findings.29 All parties learn from the process. Results from a CBPR project may not necessarily be disseminated as a peer-reviewed research paper, but may also take on some other form of education within the community.

For this research project, the DPT program was approached by the university to consider ways in which the university and greater community might learn about the physical therapy program at the university. A professor in the DPT program had preliminary discussions with an art professor who was planning to host an art show in the fall. A partnership was formed between the DPT program, the university, and the greater civic community resulting in an opportunity for the DPT program to share the message of physical therapy identity with the community through the shared time and space of an art show. An opportunity for the DPT program to display visual art describing the intersection of the International Classification of Function (ICF) model and the new APTA vision statement was established.

Phenomenological methods were used to explore the lived experiences of physical therapist students who staged the art show as part of a capstone experience in a DPT curriculum and the experiences of community members who attended the art show. Phenomenological research is qualitative in nature and examines lived experiences to derive meaning from those experiences.24-28 In this process, researchers attempt to set aside personal experiences and biases to understand trends that develop from the lived reality of research participants. Author van Manen defined phenomenology as “the study of the lifeworld or our everyday experiences and the meanings we construct from our experiences.”24(p. 33) Two main assumptions in phenomenological research are: 1) humans seek meaning in their lives; and 2) multiple realities exist that are socially constructed.24-28

Procedures

The study was approved by the IRB with exempt status at Davenport University in Grand Rapids, MI. Inclusion criteria included being a DPT student enrolled in a Critical Integration course in the last year of the DPT curriculum in a Midwestern university. For community members, inclusion criteria included being in attendance at the art show. Adding comments to the reflective journals implied consent of the community members and no names were recorded.

Participants

A sample of convenience was used in this study. After staging the art show, DPT students (n=40) were invited to write confidential reflective papers about the experience of creating art as part of the curriculum in the DPT program. Community members (n=30) from the local university and civic community were invited to attend the art show through a newspaper announcement and university communications. These community members had the opportunity to reflect on thoughts, feelings, and lessons learned about physical therapy as a result of attending the art show. Table 1 lists the type of visual art on display by medium and title. Reflective writing prompts for students and community members are listed in Table 2.

Table 1: Types of Visual Art & Titles

Photography (12)
Community Wellness
Who are Physical Therapists?
Triathlon: Community Integration
Thinking Within the Lines of Therapy
Waiting for Some PT Fun
Playing with Two Left Legs
Value of PT
Healing Hands
Wrecked
Pride and Passion
A Leg to Stand On
Dignity and Mobility Regained
Pen/Chalk Drawings (14)
PT Progression
It’s not Therapy if it’s not Physical
Recovery to Your Potential
Journey from Pain to Wellness
Layers of Motion
The Art of Helping Others
Physical Therapy Across the Lifespan
Bones
Helping Each Other Up
A Walk to Remember
It Starts from the Ground Up
Capturing Movement
Physical Therapy Gets Results
Equine Therapy: Riding through Life as a Quadriplegic
Paintings (4)
Physical Therapy
Heavenly Hands
The Viscosity of Life
Breath and Movement
Sculptures (6)
Tools of Change
PT: A JOINT Effort
“Progression Highway”
Rock Hard
Proporzionale
Improving Quality of Life
Collage/Mixed Media (1)
Hands
Video (1)
Art in Motion
3D Interactive Media (2)
Flipping through Rehab (Flipbook)
The Allure of Human Movement, a Haiku (Calligraphy)

 

Table 2: Reflective Writing Prompts for DPT Students and Community Members

DPT Student Reflective Writing Prompts
What were your thoughts when you first heard you had to create a piece of art to represent the intersection of the ICF model and the new vision for PT (Transforming society through optimizing movement to improve the human experience)?
What were your thoughts when bringing in your art to display?
How did you feel as we were staging (setting up) the show?
How did you feel on the day of the art show?
What was it like to have people view your work of art?
What did you learn about yourself through this process?
What did you learn about your classmates?
What do you believe the community learned about PT?
Community Member Reflective Writing Prompts
What did you learn from the art show experience?
How did the art show make you feel?

 

Table 3: Themes and DPT Student Comments on the Art Show

Challenging Assignment – Skepticism Followed by New Ways of Knowing
At first I was a little surprised that we would have to do an art project. The thing that really worried me was there wasn’t any specifications that were required.  I have done art shows before but they were for an art class and the teacher usually had some kind of specifications for the show. So, I was a little worried about what I should do. I usually make drawings of realistic things so coming up with a concept on my own was going to be a challenge. *P4
My first thoughts of creating a piece of art were, “why are we making art in PT school?” When I was younger, art was one of my favorite classes, but I lost touch with the importance of the class as I progressed into middle school and art school. Then when in undergraduate studies, I took an art appreciation course that put me to sleep. At this stage of my development, I never thought I would complete another art course, thus, explains the reasons why I had mild levels of anxiety about this class project. After being in slight denial of this art project, I began to churn some ideas in my brain about what I could create as piece of art that was meaningful. *P15
I enjoyed the art project and I am appreciative of the opportunity. I think it was hard to initially get motivated for it because, as third years, we are very singularly motivated by the thought of taking and passing the boards. Ultimately this was a nice break in the curriculum that allowed some fun to be had. *P36
Art: A New Way to Communicate
I learned that this was a very challenging task for me. I thought it would be easy, but it was not. It was hard to engage my brain to be creative. I have been focused on the other side of my brain for three years and hadn’t had to use my creative skills. While it was challenging to me to create this painting I found it very rewarding and learned that I need to use my creative side more than I do. *P12
I think the community realized that we are creative minds and not just “scientists.” I think health professionals are usually seen as rigid and not creative, but I think they saw that we can think outside the box. I think this was a great opportunity to see a different side of PT and ourselves and very thankful we had the privilege of doing this project. *P25
It was exciting to have people look at our art work, especially those who don’t know what physical therapy is. It seems like they got a great representation of what we cherish and enjoy about our profession as well as the struggles we face. *P32
Lessons Learned: Openness & Respect for Others, Social Responsibility
It was a mixture of nervousness and pride [to have people look at my work]. On one hand I didn’t know if my idea would be communicated thoroughly, but then I realized that it was okay if someone didn’t see my exact thought process. Their interpretation could have been different and just as good, if not better! *P9
I think the community learned that PT is so much more than exercise. I think one of the eye opening things about the art show was that the underlying theme for the majority of the work was community. So many pictures detailed a multitude of people working together. *P3
What I learned about myself through this process that it is important to be open to all types of learning. Although this is something that I [have] rarely done, it allowed for me to access another part of my brain that is rarely used in PT school and that I haven’t used for some time but it was something that I used to do very frequently. I think that I will start implementing the use of more artistic ways to study because I believe that it is very beneficial. *P20
Calling to Physical Therapy Confirmed as Vocation
I learned that I have chosen the right profession for me. Through the creation of my artwork l was able to reflect on what physical therapy means to me and how I am able to use the skills that I have learned to educate others in the community and to help improve each patient’s quality of life. l was able to reflect and understand the great gift that physical therapy is able to offer to those in the profession and those in the community. *P3
I learned how creative and talented everyone is in our class. There were some amazing drawings, painting, sculpture, colleagues, and 3-D art. It was incredible to see how much work everyone put into the project. It was neat to see how everyone sees physical therapy differently and how each of our experiences truly shape what we believe in. We are all called to this profession and how we answer our call to practice can be expressed in art. *P31
I learned that I should engage in more creative activities because I do have some talent and good ideas. I learned I should just trust an experience to take me where I need to be and just because I don’t understand the purpose at the beginning doesn’t mean I won’t at the end. I also learned that I have a very strong view of physical therapy and what it means to me. *P37

*P# = Participant number

Third-year students in the program were asked to create a piece of art for an art show being staged to celebrate Physical Therapy Month in October as part of a Critical Integration DPT course in the last year of the curriculum in a Midwestern university. The theme of the art project explored the intersection of the World Health Organization (WHO) ICF Model30 and the new vision statement for the American Physical Therapy Association (APTA) which states physical therapy has a role in “Transforming society by optimizing movement to improve the human experience.”20,21 The ICF model moves beyond a medical diagnosis and utilizes a more holistic approach to examine a person’s participation in societal roles despite potential medical diagnosis, functional and activity limitations, as well as environmental and personal contexts which either promote or limit participation in life roles. Students created paintings, sculptures, poems, photographs, flipbooks, collages, or other works of art to express intersection between the ICF Model and the APTA Vision Statement.

Several reflective journals were made available for community member guests to record their thoughts while attending the art show. These handwritten reflections were transcribed for analysis. No names were attached to journal reflections of the community members. The reflective papers from students and transcribed comments from the community were analyzed for themes and a common description of the experience was created. Forty responses were provided from the student artist group and 30 were obtained from community participants. See Figure 1 for the research process used in this study.

Figure 1: The Research Process

Data Analysis

The reflective papers from the student artists and the written community reflections were analyzed using a descriptive phenomenological approach described by Giorgi27,28 and Dahlberg, Drew, and Nyström.26 This process involved a whole-parts-whole-type holistic examination of the interview texts until constituents or themes of the experience were revealed. Each reflection by the student artists was read two times with the intent to become familiar with the overall tone, word choices, and phrasing. The third reading attended to the flow and structure of the text created by the student artists and main segments of the community participants’ writings were outlined. On the fourth and final reading, key descriptive words or phrases were identified. Important phrases and lists of common elements were used to create a summary of the experience for each participant. Identities of the reflective paper authors were confidential to the primary investigator but anonymous to the other researchers on the team.

The research team collaborated to summarize the essence of the experience with the themes generated by this process. The researchers created a narrative summary and a thematic summary for each participant. These themes were emailed to the student artists who were asked if the interpretation matched the way they lived the art show experience and if the researchers misunderstood or misrepresented anything in the interpretation. Without the participants’ ultimate approval, any descriptions or interpretations of the research team would be inadequate and possibly biased.  This process served as a vertical analysis for each reflection received from the student artists. A similar process for completed for the community member reflections. Since the authors of the community writings were anonymous, the common narrative summary and themes were shared with community members who attended the art show after the opening night, but who did not provide reflective writings.

Finally, a horizontal analysis across all written reflections was completed to develop the common description of the experience of staging an art show by the DPT students. Once this process was completed, a summary of the common description and themes across all reflective writings by student artists were shared with the students for review to determine whether or not the common description resonated with the experiences of the student participants. This process also helped ensure dependability and credibility across all student reflections through the member checking process of the common themes. A similar process was used to analyze reflective descriptions of the community members attending the art show. This common description summary was shared with community members who were not a part of this study and did not attend the art show. Saturation was reached by community members after receiving comments from 10 individuals. This process was done to solidify credibility and trustworthiness of the description for the community experience.

Methodological Rigor

Methodological rigor is as important in phenomenology as in other forms of qualitative or quantitative research. Thomas et al24 suggest that the aim of phenomenological research is to find meaning and understanding as opposed to causality and prediction; the criteria to evaluate the rigor of phenomenology is slightly different than what is used in a positivistic process of research. In this case, phenomenological research answers the research questions and the description of the lived experience provides fidelity to the knowledge claim about a lived experience.31 A relationship is thus established between researchers and the community to which the knowledge claim is presented. Furthermore, McClelland states the job of the researcher is to “seek an authentic telling of the experiences and what they mean from the perspective of the participant.”32(p. 178) In this study, methodological rigor was established by allowing participants to engage in the data analysis process by providing clarifying comments about their own descriptions and the common description formed by the analysis across all participants.  Hence, CBPR and phenomenology were used to provide a rich description of the elements of everyday life or lived experiences of those being studied to describe how the visual art experience helped student artists and community members better understand the role of physical therapy in society.

Results

Themes and comments from the student artists are listed in Table 3. Students reported being skeptical about the art show initially, but eventually obtaining a deeper understanding of how they may transform society and improve patient care through this assignment. Although the experience was challenging for most students, it helped them confirm that they had chosen the right profession. All students reported being challenged in new ways and they were proud of their use of art to communicate and promote the physical therapy profession. Finally, all students had a plan for displaying their art after the show and ideas regarding an expanded role of advocacy and community engagement.

Figure 2: Partial View #1 of the Art Show
Figure 3: Art Show View #2
Figure 4: Example of an Art Project
Figure 5: Art Show Project
Figure 6: Art Show Project

Figures 2 – 6 show examples of the visual art created by the student artists. Student reflections on the project illustrate the lessons that were learned:

Now after completing the art show, I understand that we can use different types of media in order to convey what physical therapy is to the community as a form of education. I also feel that in many ways when we treat patients we have to act as artists and be creative in the way that we work with our patients and the unique interventions that we implement for each unique patient to improve their function and engagement in life. *P3

Another student reflected on lessons learned by engaging the community through an art show and the future role in society as a professional:

I am now able to see more clearly how to engage the community about issues I am passionate about regarding my profession of physical therapy and advocating for my patients. How can I NOT have a voice about something I feel is so important for society and the health of my patients? *P24

Common themes also arose from the writings of the community members who attended the art show. The community reported gaining a better understanding of physical therapy as a profession and the role played by the profession in the community. Community members described PTs as healers and educators who solve complex movement problems and bring hope to those with movement disorders. Physical therapists were seen as medical professionals who specialize in movement by community members. Additionally, community members in attendance at the art show stated they would feel comfortable discussing personal movement and health problems with a PT after attending the art show. Community members reported feeling a deep connection to the physical therapy profession through the art and shared personal stories of encounters with the physical therapy professionals in the journals. See Table 4 for comments from the community members.

 

Table 4: Themes and Comments from Community Members at the Art Show

Physical Therapists as Movement Healers
I learned a great deal from the art show about Physical Therapy. I had no idea that PTs did so much to help people of all ages move better. There are so many settings that PTs work in. They are extremely talented and creative. I will consider seeing a PT first the next time I have pain that needs to be healed. Now I know there is hope for me. *CME #2
Physical therapists are movement artists who use the human body as their creative canvas. Their eyes are assessment tools. Their hands are the implements of healing and their minds hold the genius ability to connect movement science from book learning to a recipe for success and better movement in real life. PTs heal people of all ages with movement problems. They are also pretty decent artists as well. *CME #23
The art show brought tears to my eyes. I was speechless! It was wonderful. I had no idea how many different things physical therapists do to improve human lives. I was impressed at how talented the students are. They are gifted scholar artists who also use their talents to heal people with movement afflictions. They do more than improve function. They improve quality of life. *CME #28
Physical Therapists as Educators & Artists
I especially loved the interactive nature of this art show exploring movement in a person’s environment. I learned so much today about physical therapy. The students were so creative and their work was as excellent as anything I have seen from an art student or art school programs. Today I learned how art skills translate into learning about the body and helping people recover from devastating illness that limits movement. I feel I learned a lot today. I am inspired. *CME #8
The art in this show spoke to my soul. It was all so different and yet so much the same – dealing with how PTs bring hope to people who are suffering from movement problems. I learned there are so many things I could go talk to a PT about. I would feel very comfortable sharing my movement problems with a PT. They will have good insight on my situation, my space in the office and my world. They will teach me to prevent ongoing problems. *CME #14
Physical Therapists can help teach us how to move better. With so many body types that is a challenge but I now know PTs are up to the task. These students were remarkable. I learned so much about the message behind the art from the student artists as well. Now I know what kind of work PTs do. The art taught me so much on so many levels. *CME #19
Connection to the Profession
I would definitely go see a PT after experiencing this art show. I learned that we will all have our troubles and lose hope some days. It is nice to know what professional to choose if I am having a problem with my movement. I know I could talk to a PT now. I don’t have to just go to the doctor or a nurse for help. That gives me hope to know that someone will take time to work with me to move better and improve my life. I now know I can ask my physician for PT. *CME #6
I was amazed at what these students and faculty were able to do in the world of art here at the gallery. I believe that if my quality of life is affected by a movement problem, a PT is who to go see to solve my problems. They know so much! I would be very comfortable talking to a PT about my problems. I now have hope about my chronic movement problems. I will ask for a referral to PT from the MD. *CME #12
I feel a strong connection to the profession. PT is not just about muscles, bones, and nerves. There is a great deal that PTs do to bring hope and improve function. They play a role in making a patient’s quality of life better. There is a lot they have to offer us and I think everyone needs to have their own personal “PT guy” of “PT gal” like people have their own doctor or financial planner. *CME #27

*CME#: Community Member Exemplar Number

Discussion

This study used a sample of DPT students (n= 40) and community members (n= 30) to qualitatively explore the experiences of DPT students who created an art project for an art show on a Midwestern university campus. It also explored experiences of community members who attended the art show through reflective writing about the experience. The reflective writings of the DPT students and community members revealed a greater understanding of physical therapy as a profession or calling. Students learned about the participatory nature their work inspired among themselves and the greater community in attendance at the art show. Lessons about the profession of physical therapy were learned by all stakeholders.

From the student perspective, there was a degree of initial skepticism regarding the assignment, followed by anxiety about what type of art to create for the art show. As students were provided with time and a safe space, levels of anxiety diminished and were reframed as excitement and anticipation for the show. The art assignment was viewed as a challenging but rewarding task. In their work with occupational and physiotherapy students, Smith et al15 reported student reactions to incorporating arts into the curriculum was initially met with anxiety because many therapy students had little time to do any artistic work prior to the arts assignment. Rabow 14 reported similar findings in the study on art and physicians. Students in our study were no different, with many experiencing an initial level of anxiety toward the assignment and finding it a challenge to incorporate art into the capstone coursework despite having adequate time to prepare. Students stated they eventually found the assignment to be relaxing and creating an art project provided a release for anxiety. Middleton and Drucquer11 reported similar findings and emphasized the importance of medical professionals utilizing art as a method to mitigate the everyday stress and demands of professional life.

Students in this study thought a great deal about the assignment, engaged in self-reflection on the task, and took great ownership of their work. When staging the art show, there was an interesting transition of thought as students began to mount their art. Students were initially nervous about others’ opinions of their work. Once fully staged, the students took a step back to examine the art in the show before the opening night. Student reported taking great pride in their work. Once staged, the private art work became a public extension of the embodied self. Merleau-Ponty33 described the thinly veiled line between subject-object relationship in his writings. Other authors in  health care education describe how artistic expression encourages students to view patients more holistically, making an emotional connection to issues in health care, and taking a stand on an issue.6,14,15 Although, initially uncomfortable, this connection to the humanity of others leads to deeper practitioner self-reflection with less judgmental attitudes and an increased openness to new ideas.7,9,14,15,16,18 The DPT student artists in this study expressed an openness to classmates’ work and a renewed realization that physical therapy was a calling to vocation which concurs with Smith et al15 and Whitham et al.16

A local newspaper announcement and university communications advertised the art show. The community in attendance had an opportunity to talk with the DPT student artists about their work. Many stories were shared about physical therapy experiences. These stories diminished the distance between the DPT students and those who had suffered movement restrictions that limited full participation in life roles. Social issues regarding experiences with disability, insurance coverage, and the role of physical therapy in addressing social problems were brought into a public space. The DPT students and community members were able to discuss the biopsychosocial nature of the barriers to health and wellness that individuals face in the community. Stories and lessons regarding access to physical therapy care were exchanged between students and community members. The use of CBPR has been used to raise awareness of health and well-being in a community with the ultimate purpose to eliminate health disparities.29 HH have been demonstrated to connect medical and allied healthcare students to connect with and engage social problems in their lives.7,9,13-16,18,19 At the art show, potential solutions to health disparity were discussed in the context of social responsibility and awareness was raised about the opportunities of PTs to enhance the health and wellness of the community.

A calling to the profession of physical therapy was identified and reaffirmed by students through the experience of participating in the art show. Students in this study felt the art show provided a portal for transition from student to entry-level clinician and a new way to communicate with others. Students reported previously losing the vision for why they enrolled in a DPT professional curriculum.6,15 Evans reported MH and stories of everyday experiences allow professionals to connect to patients on an embodied level, find connections to social problems, and reflect on their role in society as a professional.6 Smith et al15 echo the importance of MH in allowing students to reflect and verify a calling to a chosen profession. Students in this study reported a deepening of their understanding of the role of social responsibility and community engagement as part of one’s calling to a profession and a renewed confidence in their choice of vocation.

Mission and vision statements of organizations provide lofty goals for transcending silos. The profession of physical therapy has been working to educate its own members and the community about physical therapy and what physical therapists do as professionals. Finding a connection between the profession of physical therapy, the world of academia, and the community is a challenge. Yet, HH appears to dismantle boundaries of the silos segregating professions and academia from the community. The incorporation of HH in educational programs may provide a means to better understand community needs and educate the community on the profession of physical therapy by illustrating the potential of physical therapy to transform society by enhancing movement to improve the human experience.

Strengths and Limitations

Strengths of the study include a relatively large sample of reflections from DPT students (n=40) and community members (n=30) ensuring a variety of descriptions were obtained. Resonance around member comments reached saturation after 10 reviews of the common description for the art show. The investigators were experienced at conducting phenomenological research.

A few limitations exist. The researchers acknowledge the results of this study may not apply to all DPT programs or communities. Staging an art show may not yield similar responses from students or the community whether it is done earlier or in the later stages in the DPT curriculum. Visual art is such a personal and public medium of expression. Meanings constructed from the art may vary depending on lived experiences of those creating and those viewing the art. A sense of reciprocity exists as a result of the experience.

Future Study Recommendations

Researchers may consider investigating how HH influences observations skills of physical therapists and physical therapist assistants. Claims have been made that HH improves clinical observation skills allowing physicians, nurses, and occupational therapists to develop better differential diagnosis skills and holistic treatments skills.8,12,14,15 No such study has been conducted among physical therapists. With some form of direct access in all 50 U.S. states, it will be crucial for physical therapists to hone observation skills to be able to identify patterns of symptoms that require referral to other healthcare providers for optimal patient care.

Conclusion

The visual arts and HH provide opportunities for deep connections to new ways of thinking about the human condition in physical therapy education and in society. The community learned about and gained new appreciation of the work of physical therapists through the experience of attending an art show. Students and community members were inspired and surprised by the power of visual art to explain the profession of physical therapy and the ways physical therapists can improve the human experience. Through the art show experience, students learned new ways to problem solve and consider alternative methods of expressing the essence of their personal beliefs about physical therapy and professional roles in transforming society. Through experiential education of an art show, the community learned about the profession of physical therapy and the role it may play in their lives when facing the distress of activity limitations preventing full participation in life roles. Community members learned strategies for advocating for their health needs by asking for PT referrals from their physicians if not provided. It appeared that a patient-therapist connection between the community and the profession was created. True service and the elimination of need cannot occur unless knowledge about a profession and society is made available in a translational manner. Ultimately, better serving our patients through the establishment of a deeper understanding of the patient-practitioner relationships is how the human condition is enhanced and society transformed.

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About the Author(s)

Susan G. Klappa, PT, PhD

Dr. Sue Klappa PT, PhD, is a professor in the Doctor of Physical Therapy Program at Briar Cliff University in Sioux City, IA. She completed her PhD in Education, Curriculum &amp; Instruction from the University of Minnesota with a focus on community engagement. Sue earned her Masters of Physical Therapy degree from St. Catherine University and also a MA in physical education with emphasis in cardiac rehab from the University of Minnesota. Dr. Klappa is a PT educator and clinician who has practiced physical therapy and presented internationally. She has a special interest in global and local public health. Dr. Klappa has had six tours of service to Haiti after the 2010 earthquake. She has also led and facilitated many service learning/community engagement experiences for student PTs and PTAs in the Dominican Republic, Venezuela, Honduras, Mexico, and Haiti. Dr. Klappa’s research interests explore how inter professional collaboration, global health work, and international community engagement influence the formation of professional identity among physical therapists. Through her work, Dr. Klappa believes the humanities are crucial to understanding the human condition so that we may transform society to become complete human beings who are able to connect with others more deeply.

Yvonne Beth Alles, DHA

Yvonne Beth Alles, DHA is a diagnostic instructor for the Kent Intermediate School District in Grand Rapids, Michigan and works with the Health Sciences Early College Academy to provide Career and Technical Education to high school juniors and seniors.

Yvonne was awarded a Bachelor of Arts (Honors) in Health Services Administration, and a Masters in Business Administration with a healthcare emphasis from Davenport University. She received her DHA in Healthcare Administration from the University of Phoenix. Before coming to Kent ISD, Yvonne worked at Davenport University where she served as the Department Chair of Allied Health, including the areas of Medical Assisting, Health Services Administration, Medical Case Management, and Occupational Therapy. Yvonne has also worked at Spectrum Health in Grand Rapids, Michigan, as a healthcare administrator in the Healthcare Information Management department and as a medical language specialist.

Yvonne’s current research explores the development of career exploration and soft skills to prepare beginning students for success in healthcare careers. As the healthcare system becomes increasingly mechanized, Yvonne believes that emphasis on the humanities will be an area which must be included while considering career options. For example, music therapy has been shown to improve communication with Alzheimer’s patients. Narrative medicine is another area of interest for Yvonne secondary to her strong background in health information management.

Scott P Klappa, MS

Scott P. Klappa, MS is a clinical psychologist who works at Lifespan in Burnsville, MN. He completed his Masters of Science degree in clinical counseling from Rosalind Franklin University of Medicine and Science in Chicago, IL. Much of Scott’s research up to his point has focused on advanced statistical methods, hardiness, and compassion fatigue. Scott works with a variety of clients recovering from traumatic experiences as well as other conditions. Further, Scott is focusing research efforts on systems efficiency to directly benefit the Psychosocial Rehabilitation and Recovery Center, a VA facility in Great Lakes, IL. Overall, his research interests include pathoplasticity and the susceptibility of burnout, personality and mechanisms leading to engagement, general systems thinking, and quantitative methodology. Scott believes that the humanities are important in his practice of psychology in helping dismantle barriers to perception.

 


This work is licensed under a Creative Commons Attribution 4.0 International License.

]]> https://jhrehabredesign.ecdsdev.org/2017/05/02/dpt-program-stages-an-art-show-using-art-to-develop-a-heart-for-the-profession-of-physical-therapy/feed/ 0 2364 Art as a Tool for Disseminating Research Outcomes: The Hauā Mana Māori Project and Participatory Action Research in New Zealand https://jhrehabredesign.ecdsdev.org/2016/06/20/art-as-a-tool-for-disseminating-research-outcomes-the-haua-mana-maori-project-and-participatory-action-research-in-new-zealand/ https://jhrehabredesign.ecdsdev.org/2016/06/20/art-as-a-tool-for-disseminating-research-outcomes-the-haua-mana-maori-project-and-participatory-action-research-in-new-zealand/#respond Mon, 20 Jun 2016 00:05:54 +0000 https://jhrehabredesign.ecdsdev.org/?p=1368

Art as a Tool for Disseminating Research Outcomes: The Hauā Mana Māori Project and Participatory Action Research in New Zealand

K.A.P. Bryant, BPhty, PGDip & Leigh A. Hale, BSc (Physio), MSc, PhD, FNZCP & Kelly Waiana Tikao, DipNurs, BA, MSciComm & Stephan Milosavljevic, BAppSc, PGDip (Manips), MMPhty, PhD & Tracey Wright-Tawha, PGDip & Aimee Ward, BS, MPH & Brigit Mirfin-Veitch, BA, BA (Hons), PhD
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Table of Contents

Introduction

Background

The concept of patient-centeredness is a widely accepted approach, but has only recently expanded from the environment of health care delivery to health care research.  An important component of this approach is built upon the belief that including participants and end users of research in the research process will enhance recruitment, increase likelihood of actual translation of evidence into practice and more efficiently extend benefits to target patient populations.1  An example of this type of collaborative research project was the Hauā Mana Māori study. Researchers worked alongside hauā (disabled) Māori (tāngata whenua – the indigenous people of New Zealand) in the Southland region of the South Island of New Zealand (NZ). Together they investigated hauā Māori access to health services and to their community by exploring the perceptions of what makes this group feel both enabled and disabled.2

New Zealand is a multicultural society, with Māori comprising the indigenous population. As of the 2013 census, there are 4.43 million people living in NZ;3 14.9% (598,605) of the population identified their ethnicity as Māori.4 The Treaty of Waitangi is considered to be NZ’s founding document, and was signed in 1840 between Māori and the Crown (Great Britain). Of particular relevance for health in Aotearoa (New Zealand), the Treaty specifies that the well-being of Māori be protected alongside all NZ residents. In particular, Article 3 ‘oritetanga’ (equity) guarantees that Māori share equally in the benefits of modern society including equal standards of health care, equality of access to health care, and a general equality of health outcomes.5 Integral to the Treaty are core principals of partnership, participation and protection. Thus the Treaty emphasizes Māori participation in determining all processes for best practice, in both clinical care and in research.5

Disability is a substantial concern for Māori. Approximately 26% of New Zealand’s population identify with having some form of disability that impacts their life.6 The disability rate for Māori was 19% (95,700 people) in 2006.7 About half of Māori living with disability are under the age of 25 years.8 Several factors contribute to this age-related difference, including higher mortality in earlier age groups, lower life expectancy,9 earlier onset of age-related illness and disease,10 and a higher birth rate.11 Mobility disability and agility disability are the most common types of disability experienced by Māori adults.7

To improve access to disability services and support for Māori living with disability and their whānau (extended family), the initial aims of the study were to explore and understand current access. Jones et al suggest that health services in the past have largely failed to acknowledge Treaty obligations, ignoring cultural differences and “assumed that the Pākehā (New Zealanders of European descent) way of doing things is a norm”.12, p1 Recently, the Ministry of Health launched an action plan for disability support services to guide actions to address the needs and priorities of Māori who are disabled.13 The action plan reiterates that if services do not acknowledge the significance of culture in the assessment and support of hauā Māori, there is a greater chance that the outcomes will be poorer health.13

In Māori concepts of health, there is no distinction between health and disability, and thus no clear definition of disability. The concept of “wellness” is better understood, and is perceived to be more linked to an individual’s ability to contribute to their iwi (tribe) and whānau, thus based not on personal performance per se, but performance within a wider community setting.13,14 Therefore, our research viewed both Māori living with disability and their whānau as entwined and not separate entities. Further, as reported by Harwood, it is up to each whānau to define for themselves who their whānau are, thus a broad perspective was taken within our research, and the terms “disability” or “whānau” were not predetermined.15

Ethical approval for our study was obtained from the University of Otago Ethics Committee (Ethics Committee’s reference code: 12/175) and also from the Ngāi Tahu Research Consultation Committee (as the work originated within the tribal area of Ngāi Tahu, the local iwi). This consultation process ensured the research was conducted in a manner that respected Māori ideologies and world-views, would result in quality research of significance to Māori, and had the potential to bring about beneficial change.

The study used a mixed methods approach, based on a case study design. Data were collected from hauā Māori and their whānau, and from organizations providing health and disability services in Murihiku, via face-to-face interviews, group meetings, and group concession. To support the autonomy of individuals with disability, Participatory Action Research (PAR) was used to listen to the voices of the hauā Māori, including respecting their preference for study finding dissemination options.17

Integral to the study was the development of a rōpu kaiārahi (advisory group).  This group guided and advised us through the planning, development, outcome delivery stages of our study, and finding dissemination. Additionally, a kaumātua (local elder) was invited to be the group leader on the study, and to help researchers support the study’s kaupapa (proposal) among community groups and health providers. Further description of PAR and the methodology of data collection can be found elsewhere.2

At a hui (meeting) during the development phase of the study, we consulted with the rōpu kaiārahi to gain insight into possible ways for disabled Māori and their whānau to express their voices and share stories about living with a disability. Different approaches were suggested based upon age groups, (for example, individual interviews for older adults, focus groups for middle aged adults, and Facebook or a blog discussion for the younger generation); groups/forums led by the kaumātua; creating some piece of art through kōrero (storytelling), hopu whakāhua (photography), or waiata (song); or the use of multi-media. By utilizing various artistic mediums, the study participants were able to articulate a “picture” of what it is to be Māori living with a disability.

Therefore, the purpose of the current paper is to describe a collaborative effort with study participants to develop a unique method of disseminating research results through an art exhibition.  This process illustrates a creative avenue to engage communities in research through a humanities-based platform that provided a broader perspective of an indigenous culture’s experience of disability.

Participants and recruitment

Participants, as well as the Ngā Kete Mātauranga Pounamu Charitable Trust in Murihiku, were consulted about the concept of an art exhibition as a way of disseminating the research findings and the idea was met with excitement and support from all.  The Ngā Kete Mātauranga Pounamu Charitable Trust is a Māori health provider in Murihiku. Services offered by the Trust range from connecting Māori and their whānau with community resources, providing mobile nursing services and counselling for various issues, as well as student and employment support. The Trust supported and guided us in the planning of the art exhibition.

For the Hauā Mana Māori study, the recruitment goal was 30 adult Māori (16 years and older) who identified as living with a disability, and also Māori whānau or care givers who identified as living with hauā Māori, residing in Murihiku. These same participants were interviewed about their thoughts on how to disseminate results.

Table 1 displays the characteristics of participants from the Hauā Mana Māori study. Of the 34 Māori living with disability that volunteered for the original study, 29 were interviewed (18 males and 11 females). All participants lived in the surrounding community. Some individuals were unable to continue to participate throughout the entire study, as a result of personal or whānau commitments. Our final rōpu kaiārahi consisted of sixteen people who attended and volunteered to be part of the Hauā Mana Māori study, and these 16 also contributed to the art exhibition.

Table 1: Characteristics of participants in the Hauā Mana Māori study

CharacteristicsCategoryn = 29

Age

Range: 17-74 years

 

16 – 19 years

20 – 29 years

30 – 39 years

40 – 49 years

50 – 59 years

60 – 69 years

> 70 years

1

2

2

8

7

7

2

Iwi (Tribe)

(some participants reported multiple iwi)

Ngāi Tahu

Ngā Puhi

Waitaha

Tainui

Kāti Māmoe

Ngāti Kuri; Rakiura; Maniopoto; Ngāti Porou; Ngāti Kahungunu; Te Atiawa

17

6

3

2

2

1

Disability

(some participants reported multiple disabilities)

Hearing impairment

Diabetes

Arthritis

Heart

Visual impairment

Stroke

Multiple Sclerosis

Epilepsy

Blood clotting problem

Chronic pain

Sarcoidosis

Recovering from cancerous tumour removal

Asthma

Anxiety

Meningitis

Dialysis

Dyspraxia

Fractured femur

Alzheimer’s disease

Alcohol foetal syndrome

Schizophrenia

4

4

3

3

2

3

2

2

1

1

2

1

1

1

1

1

1

1

1

1

1

Procedures

Although art work was a method favored by the rōpu kaiārahi as a way to collect meaningful data, researchers jointly decided with participants that time constraints would limit the ability to hold a hui (meeting) needed to effectively utilize this form of data collection. Instead, the rōpu kaiārahi suggested using a visual method to disseminate the study findings to the broader community. As part of their routine, all participants regularly used art as a way to structure their day, to network into other community groups and ultimately to enhance their hauora (health), wairua (spirit), and mauriora (community voice). Consequently, a two-day art exhibition was planned to distribute study findings to the broader community in Invercargill, Murihiku (Figure 1), honoring the individuals who took part in the study and those other individuals and groups they represented within the disability community.

Figure 1: Discussion of emerging findings with members of the rōpu kaiārachi and Nga Kete Matauranga Pounamu Charitable Trust
Figure 1: Discussion of emerging findings with members of the rōpu kaiārachi and Nga Kete Matauranga Pounamu Charitable Trust

In addition to sharing study results, this exhibition would offer a formal way for the rōpu kaiārahi to conclude the Hauā Mana Māori study, an important facet of Māori culture. This ceremonial conclusion by a kaumātua included a karakia whakamūtunga (closing blessing) on the last day, to formally and spiritually close the Hauā Mana Māori study.

Study participants were invited to create an art piece to express themselves; their life, dreams, disability, wellness, challenges and interactions with services and community. The art piece could be in any medium, such as words (poetry/story format), music, paint, clay, cardboard, or stone. Grant funds provided some financial resources to support art supplies as needed.

The main themes that emerged from previous work with respect to our study participants’ perspective of good health were whakamana (being valued), whānaukataka (relationships), a healthy sense of self-identity and self-worth, and good access to resources. Conversely, in terms of disability, the main themes included the negative impacts of discrimination, colonization, and disconnection, as well as lack of self-worth and poor access to resources. These themes were expressed in one way or another during the art exhibit.

Using this option of dissemination at the end of the study served many functions. The opening of the art exhibition provided a means to gather again everyone involved in the research, to present the findings, to obtain constructive feedback from the participants as to whether the researchers were presenting their views correctly, and to allow the participants to relay their feelings of being involved with the study. The event was well received by both participants and the public, and the emotional impact of the art gallery filled with participants, whānau, members of the community, and health care providers was quite powerful and affirming.

Some examples of artwork are provided below (Figures 2, 3 and 4).

fig2
Figure 2: Examples of Art Work

 

Figure 3: Examples of Art Work
Figure 3: Examples of Art Work

 

Figure 4: Examples of Art Work
Figure 4: Examples of Art Work

Discussion

Based on the suggestions during the main research phase and through the art exhibition, many strategies were recommended to better facilitate disabled Māori and whānau access of Murihiku health and disability support organisations.

Participants in this research consistently identified that feeling valued as people positively facilitated their access to health and disability services. They offered a wide range of suggestions to improve healthcare provider interactions with clients, including being viewed as an active contributing member of the community, receiving respect and a positive attitude from the community, being listened to, not being discriminated against, being provided with choice, and being provided with a flexible approach.

Feeling connected to each other and the healthcare process was also important to the participants. Consequently, suggestions for community and healthcare organisations included being intentional in facilitating connections with and understanding the importance of whānau, appreciating that friends and community in addition to immediate family are considered whānau, endeavouring to be more “whānau-centred” and “whānau-led”, and facilitating and being responsive to feedback from the disabled community.

Clinicians can foster self-worth  in their clients by not assuming, but specifically asking about ethnicity, acknowledging and respecting an individual’s strong belief in a religious faith, offering karakia (ritual chants) if requested, and allowing time and space for rangimarie (peacefulness), facilitating aroha (love) and mana (governing of self).  This cultural sensitivity can be fostered by spending time building relationships with their clients, endorsing Māori health models, encouraging a sense of Māori identity, and being accountable to service policies and strategies that incorporate the Treaty of Waitangi.

By incorporating these suggestions into clinical care, organizations can be better advocates for their clients, improve client access, better advertise and market their services to the Māori community and Māori organisations,network with other organisations (especially with Māori health providers), provide appropriate information in a wide range of formats (such as plain language, different languages, audio-recordings) and reinforce this information face-to-face with the client.

The primary recommendation arising from this hauā Māori health and disability services access research was the establishment of an Advocacy Service in Murihiku. Many Māori rely on whānau to awhi (assist) them in times of need. Whānau, however, are not always close or available. Having an advocate to awhi or support hauā Māori access organisations and who are responsive to their needs is critical to improving access to health and disability organisations in Murihiku. This advocate could take on a range of roles, for example, accompanying the hauā Māori to the specialist, assisting them to identify and ask pertinent questions and ensure the hauā Māori is satisfied his or her questions have been answered. On a more practical level, advocates could assist with transport and with accessing other support that hauā Māori may require.

Conclusion

The Hauā Mana Māori study illustrates how research dissemination can be non-conventional and tailored to diverse cultures.  More specifically, the study demonstrated how PAR was responsive to disabled Māori, in this case in the Murihiku community. Both hauā Māori and the method of PAR were central to the research from the early planning stages all the way through to the dissemination of findings and promotion of jointly constructed recommendations. This paper specifically described a unique process of dissemination that provided an innovative and essential way for participants in this study to express their realities to their local community through a range of creative forms, from music to bag making, jewelry, knitting, painting, collage and poetry. As one art exhibit participant who displayed his knitting put it, “Being able to express myself in my knitting is so important to me. People can’t believe that I can do this and they love it.”

Feedback from one participant summed it all quite well: “I did not know what to expect from being involved in this study. I came here especially to tell you that following this experience with you, being interviewed and talking with you, I have really looked at what would help me be healthy. I have to thank you because I have a better view of what that is now and I have made some positive changes in my life, and I feel so much better for it.”

References

  1. Frank L, Basch E, Selby JV. The PCORI perspective on patient-centered outcomes research. JAMA 2014; 312 (15):1513-1514. doi:10.1001/jama.2014.11100.
  2. Hauā Mana Māori: Living unique and enriched lives. The Centre for Health and Rehabilitation Research. http://www.health.govt.nz/publication/haua-mana-maori-living-unique-and-enriched-lives. Published March, 2014. Accessed March, 2014.
  3. New Zealand in Profile: 2013. Statistics New Zealand: Wellington. stats.govt.nz. Published December, 2013. Accessed November, 2015.
  4. Census QuickStats about Maori. Statistics New Zealand: Wellington. stats.govt.nz. Published December, 2013. Accessed November, 2015.
  5. Waitangi Tribunal. Principals of the Treaty. waitangi-tribunal.govt.nz/treaty/principalsasp. Published Accessed August, 2012.
  6. Disability Survey. Statistics NZ: Wellington, NZ. Published December, 2013. Accessed November, 2015.
  7. Disability and Māori in New Zealand in 2006: Results from the New Zealand Disability Survey. Office for Disability Issues and Statistics New Zealand: Wellington. Published 2010. Accessed November, 2015.
  8. Cunningham C, Durie M, Fergusson D, Fitzgerald E, Hong B, Horwood J, et al. Ngā Āhuatanga Noho o te Hunga Pakeke Māori: Living Standards of Older Māori. Ministry of Social Development: Wellington. msd.govt.nz. Published 2002. Accessed November, 2015.
  9. Blakely T, Robson B, Tobias M, Bonne M. Decades of disparity: ethnic mortality trends in New Zealand 1980-1999. Ministry of Health and University of Otago: Wellington. http://www.moh.govt.nz. Published July, 2003. Accessed November, 2015.
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  13. Whaia Te Ao Marama: The Maori Disability Action Plan for Disability Support Services 2012 to 2017. Ministry of Health: Wellington. http://www.moh.govt.nz. Published 2012. Accessed November, 2015.
  14. Living with Disability in New Zealand: A descriptive analysis of results from the 2001 Household Disability Survey and the 2001 Disability Survey of Residential Facilities. Ministry of Health: Wellington. http://www.moh.govt.nz. Published 2004. Accessed November, 2015.
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  17. Seekins T, White GW. 2013. Participatory action research designs in applied disability and rehabilitation science: protecting against threats to social validity. Arch Phys Med Rehabil 2013;94 (1 Suppl):S20-29.

Appendix

Initial invitation letter to participants

Whaowhia te kete Matāuraka – Fill the basket of life

We were thinking of creative and exciting ways to share with the community the outcomes of the Hauā Mana Māori research project.  Whilst pondering this thought we were reminded how clever and arty many of our participants are and perhaps we should look at an exhibition as a way to express the project.

Hence, we are now seeking an art piece in any medium that you have created in the past, recently or would like to create now to express YOU, to express your life, your dreams, your disability, your wellness, your challenges and your interactions with services and your community.

Your piece could be in: words (poetry/story format), music, paint, clay, cardboard, stone….whatever medium you like to work with.

We can provide a small amount of pūtea towards resources you may need to buy in order to create a new piece.

To confirm your involvement in this exhibition you need to contact Kelly or Katrina on the contact details below before the 15th of April 2013.

The exhibition opening date is the 16th of May, 2013*.  Venue yet to be confirmed. The opening of the exhibition will also provide a platform to promote the recommendations that have arisen from the project outcomes

You will require your wonderful creation to be completed and delivered to (we can pick up if you are unable to drop it to the venue), venue to be decided, by the 6th May, 2013.

Kelly and Katrina are here to answer any questions and to support you along the creative process. Having you involved in the conclusion of this project is very special.

The exhibition will be open to the public to view over a two week period and we may be looking for volunteers to look after the exhibition whilst it is up.  If you would like to be part of this exhibition by creating an art piece or submitting an already completed piece OR by volunteering to help out during the exhibition please connect with us.

*date was later changed

About the Author(s)

Katrina Potiki Bryant, BPhty, PGDip

K.A.P Bryant graduated from University of Otago with Bachelor of Physiotherapy 1994, and recently submitted her Masters Thesis, “He Kiteka Hauā i Murihiku. Perspectives of disability of hauā Māori living in Murihiku”, which described in greater detail the qualitative aspect of the Hauā Mana Māori project, addressing realities for Southern New Zealand indigenous peoples living with disabilities. She is currently employed at the University of Otago School of Physiotherapy as Kaiārahi Māori/Māori Liason, teaching cultural competence, supporting things Māori and facilitating the Māori Strategic Framework. Katrina is interested in indigenous perspectives of research and rehabilitation, particularly with respect to physiotherapists engagement with Māori communities and encouraging relevant approaches to rehabilitation services and research in this area within Māori whānau(families), hapū (subtribes) and iwi (tribal groups).

Leigh Hale, BSc (Physio), MSc, PhD, FNZCP

Professor Leigh Hale is the Dean of the School of Physiotherapy / Centre for Health, Activity, and Rehabilitation Research at the University of Otago, New Zealand. Leigh is the Editor of the New Zealand Journal of Physiotherapy. Leigh graduated as a physiotherapist from the University of Cape Town (South Africa) and went on to attain her MSc (Neurorehabilitation) and PhD from the University of the Witwatersrand (Wits)(South Africa). Leigh worked as clinical physiotherapist in all areas of physiotherapy before pursuing an academic career. Leigh primarily researches in the area of community-based physiotherapeutic rehabilitation for people living with disability and with neurological conditions, such as stroke, multiple sclerosis, and Parkinson’s disease. Her research uses both quantitative and qualitative methodologies and focusses on how physiotherapists can enable people to optimally live healthy and engaging lives.

Kelly Tikao, DipNurs, BA, MSciComm

Kelly Tikao is a Research Associate at the Donald Beasley Institute (DBI) and has worked as a Māori researcher on a number of short and long term research projects via DBI during her time at the Institute. Kelly is currently a PhD student in her second year of study at the University of Canterbury exploring traditional Māori birthing rituals and practices pertaining to the South Island iwi of Ngāi Tahu and the impact of this knowledge loss on the health of the Southern Māori. Kelly is a registered nurse with 20 years of clinical and community work experience. She is also involved in the radio and film industry and likes to weave her broadcasting skills into her research projects. Kelly feels this facilitates a dynamic approach to research accessibility and expression of participant narratives. Kelly presents in the community on her thesis topic and is a regular guest lecturer at the Otago Polytechnic and the Otago Medical School for nursing and medical students covering topics such as: ethics, kaupapa Māori research, disability research, identity and her nursing journey.

Stephan Milosavljevic, BAppSc, PGDip (Manips), MMPhty, PhD

Stephan Milosavljevic completed his Physiotherapy degree at Curtin University (Western Australia) in 1975. In 2004 following 30 years of clinical practice in primarily rural settings he completed his PhD in Occupational Biomechanics at the University of Otago. His research has predominantly been in a rural and occupational health setting exploring the influence of biomechanical loading on prevalence of low back pain in the rural work force. Over the years he has also noted the capacity of many in rural communities to be resilient to adversity and able to cope with economic and societal change. He has undertaken research into the coping strategies of farmers in Southern New Zealand and how they deal with physical adversity such as recovery from injury and dealing with chronic and long term nature of low back pain. He is a strong supporter of the psychological construct of positive psychology – that is we can likely learn much from those who cope with adversity. Perhaps the resilience of rural people offers pathways to recovery, rehabilitation or the creation of coping mechanisms for those who are struggling to cope and needing care. Many of his participants have strong roots in their Maori upbringing and participating in a workforce strongly represented by Maori. Through his rural links and research experience he became aware of the increasing acknowledgement and recognition by Maori to do more for the health of their people and their culture. He collaborated with others in this research team to help develop this research direction and foster the collaboration with Maori in Southland. He particularly wishes to acknowledge the collaborative effort of all team members in this project and their willingness to participate. Without the willingness of this community to become the essential focus of this research, this project would never have come to fruition.

Tracey Wright-Tawha, PGDip

Born in Gore and raised in Southland with mana whenua whakapapa links taking her into the heart of Oraka Aparima and Rakiura, Tracey is deeply committed to Maori health and well being. Equality, equity of access is a key driver. Founder and CEO since inception, Tracey has developed a wide range of kaupapa Maori services over the last 16 years at Nga Kete Matauranga Pounamu, with the big achievement establishing a very low cost general practice. Employing 55 staff and delivering in excess of 49,000 interventions per annum Tracey is clear “it is a huge privilege and responsibility to walk with our people, one I protect fiercely – my mission is connecting whanau with resources, ideas and energy for wellbeing and independence”. Working from a belief that all things in life are connected, Ki Uta Ki Tai from the Mountains to the Sea and everywhere in between. Tracey is widowed, has two amazing adult children, is a keen British Bulldog enthusiast, photographer, artist and in her later years has focused on study and travel.

Aimee L. Ward, BS, MPH

Aimee Ward graduated from Washington State University with a Bachelor degree in Kinesiology and worked for ten years in cardiac rehabilitation in Portland, Oregon. She then went back to school at Oregon State University, where she pursued and received her Master degree in International Public Health. She has conducted research in public health at organizations in the U.S., Taiwan, France and New Zealand. Currently Aimee holds several positions at the University of Otago in Dunedin, New Zealand, as a teaching fellow at the Otago Medical School, as an Assistant Research Fellow at the School of Physiotherapy, and is also a PhD student in Public Health. She is currently on maternity leave, caring for her first child, a daughter called Anna Belle.

Brigit Mirfin-Veitch, BA, BA (Hons), PhD

Dr Brigit Mirfin-Veitch is the Director of the Donald Beasley Institute (DBI). The DBI is an independent charitable trust, which conducts research and education in the field of intellectual (learning) disability. As a sociologist Brigit has a strong interest in understanding the social lives of people with learning disability and is committed to initiating and achieving social change through research. Brigit has been involved in research on a wide range of topics including deinstutionalisation, physical health, mental health and wellbeing, parenting and the law, and has disseminated and published widely across those areas. She is particularly experienced in qualitative and inclusive research methodologies.


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EXAMPLE:  Naghshineh S, Hafler JP,  Miller AR, et al. Formal art observation training improves medical students’ visual diagnostic skills. J Gen Intern Med. 2008; 23(7):991–997. doi:10.1007/s11606-008-0667-0.

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