- Email: [email protected]
Meaningful components of a community-based exercise program for individuals with disabilities: A qualitative study
Accepted Manuscript Meaningful components of a community-based exercise program for individuals with disabilities: A qualitative study Sarah L. Adam, Kerri A. Morgan PII:
S1936-6574(17)30166-8
DOI:
10.1016/j.dhjo.2017.09.001
Reference:
DHJO 637
To appear in:
Disability and Health Journal
Received Date: 28 November 2016 Revised Date:
17 August 2017
Accepted Date: 8 September 2017
Please cite this article as: Adam SL, Morgan KA, Meaningful components of a community-based exercise program for individuals with disabilities: A qualitative study, Disability and Health Journal (2017), doi: 10.1016/j.dhjo.2017.09.001. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT
Meaningful components of a community-based exercise program for individuals with disabilities: A qualitative study Running Head: Community Exercise for Individuals with Disability
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Sarah L. Adam, OTD/S and Kerri A. Morgan, PhD
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Program in Occupational Therapy, Washington University School of Medicine 4444 Forest Park Ave. St. Louis, MO, USA 63018
Kerri Morgan, PhD Email: [email protected]
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Corresponding Author: Sarah Adam, 1412 Brandy Circle, Naperville, IL 60540, USA Email: [email protected] Phone: 630 779 0915
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Statement of Funding This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
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Acknowledgements The authors would like to thank Jessica Dashner, Lindsey Bean-Kampwerth, Melissa Smith, Megen Devine, and Rachel Tangen for their contributions to this project. They would also like to thank the exercise participants and staff members of the Paraquad Health and Wellness Center for providing their valuable insight.
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This manuscript has not been published and will not be submitted elsewhere for publication while being considered by the journal Disability Health Journal. This research has not been presented at any prior meetings or posted on any websites. Brief Report Keywords: exercise; evaluation; public health; community; disability Abstract word count: 245 Manuscript word count: 2516 References: 23 Tables: 2 Submission date: 08/17/2017
ACCEPTED MANUSCRIPT Abstract Background: Enhanced methods of evaluation are necessary to identify community-based exercise interventions that promote physical activity and improve health and participation for
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individuals with disabilities. The heterogeneity of the populations served, interventions implemented, and outcome measures used remains a barrier to effectively evaluate programs and generate evidence to inform best practice. Objective: To explore goals and benefits of
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community-based exercise for individuals with disabilities and determine barriers and
facilitators to evaluation in a community setting. Methods: We conducted semi-structured
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interviews with exercise participants and staff of a community-based exercise program for individuals with disabilities. We then coded responses to interview questions for themes using thematic analysis or deductive content analysis, with codes linked to categories within the International Classification of Functioning, Disability and Health (ICF). Results:
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Identified goals and benefits spanned the ICF domains of Body Functions and Activities and Participation. Commonly cited goals and benefits included improving strength and endurance, general health, self-efficacy, community participation, and the importance of
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returning to exercise. Barriers and facilitators to evaluation identified by staff included maintaining a balance between evaluation and services, negative attitudes toward evaluation,
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access to data, and consistency with scheduling. Conclusions: These results can be used to enhance evaluation within community-based exercise programs for individuals with disabilities, which may improve both the quality and impact of these programs. Keywords: exercise; evaluation; public health; community; disability
Community Exercise for Individuals with Disability
ACCEPTED MANUSCRIPT Introduction For people with disabilities, a physically active lifestyle is essential to physiological and psychological well-being, maintenance of functional independence, and prevention of secondary health conditions. Despite the known benefits of physical activity, 62.3% of people
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with disabilities are not consistently active enough to realize these health benefits.1,2 A
significant barrier lies in the lack of opportunities for individuals with disabilities to continue to exercise post-rehabilitation. Common barriers to exercise include limited knowledge on
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methods of adaptive exercise, as well as the physical inaccessibility of exercise facilities and equipment.3,4 Unfortunately, typical community exercise facilities generally do not provide
exercise after leaving rehabilitation.3,4
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the types of support necessary for individuals with a disability to successfully participate in
With shorter lengths of stay in rehabilitation, healthcare resources must be maximized by extending the continuum of care into the community through accessible, community-
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based exercise programs that target individuals with disabilities. Such exercise programs utilize accessible exercise equipment and experienced health professionals to facilitate exercise that is tailored to each participant’s needs and capabilities.5 These programs can
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increase participation in exercise, leading to reduced risk of secondary health conditions,
7
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increased community participation, and improved health and function after injury or illness.5-
Although a wealth of evidence exists regarding the benefits of exercise interventions
for people with disabilities, research on community-based exercise interventions is limited.2,10 The use of outcome evaluations is crucial in defining the effectiveness of 2
Community Exercise for Individuals with Disability
ACCEPTED MANUSCRIPT community-based exercise interventions in promoting positive changes in health and physical fitness for individuals with a disability. However, the populations served, interventions implemented, and outcome measures used for exercise interventions are often heterogeneous, which presents a significant barrier to effective evaluation. Improving methods of outcome
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evaluation will allow these programs to document changes in participant outcomes,
generating evidence that will ensure that accessible, community-based exercise programs are well funded and able to provide high quality, effective services.11
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The use of a participatory approach, which involves key stakeholders as partners, is an important first step in creating outcome measures that are focused and consumer-
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centered.12 Conducting interviews with individuals with disabilities and with fitness specialists who work with individuals with disabilities may provide valuable insight into the key components of these exercise programs and the barriers and facilitators to successful evaluation. Defining these key components will help guide the creation of evaluation
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methods that are relevant and appropriate for use in a community setting. In response, the current study has two main objectives: to explore goals and benefits of exercise for individuals with disabilities and to determine the barriers and facilitators to
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outcome evaluation in an accessible, community-based exercise setting.
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ACCEPTED MANUSCRIPT Methods Study Design We used a qualitative approach, using semi-structured interviews with participants
the University Institutional Review Board. Exercise Center
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and staff of a community-based exercise program. All aspects of this study were approved by
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The Exercise Center (EC), located in the Midwest region of the United States is an example of an accessible community-based exercise program. The EC uses accessible
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exercise equipment and experienced health professionals to develop exercise plans that are individualized to each participant’s needs and capabilities. The EC serves individuals with varying types of disabilities including: spinal cord injury, stroke, Parkinson’s disease, and multiple sclerosis. The exercise sessions typically last one hour and include warm-up, stretching, endurance exercises, strength exercises, and cool-down. Participants receive one-
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on-one assistance or supervision during their exercise sessions from an allied health professional (i.e., occupational/physical therapist, occupational/physical therapy assistant, or
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trained graduate student).
The EC takes a comprehensive approach to assessment, assessing: functional health,
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reduction of secondary conditions (e.g., pain, fatigue, obesity, and depression), and participation in community activities (e.g., work, leisure). However, the EC deals with issues similar to those that other community programs experience, such as administering lengthy evaluations and difficulty translating data into useful information for program 4
Community Exercise for Individuals with Disability
ACCEPTED MANUSCRIPT development.13,14 Improving the methods of evaluation will make evaluation more appropriate for use in the community setting. Participants
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This study included a purposive sample of four exercise participants and six program staff from the EC. We used our partnership with the EC to recruit appropriate individuals through word of mouth and advertisements at the EC. Exercise participants and staff
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members had a minimum of one year of experience at the EC, and exercise participants
varied by type of disability and exercise history. Written informed consent was obtained prior
Data Collection (Interviews)
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to the interview.
The lead author conducted interviews with the assistance of graduate students. Interviews lasted between 45 and 75 minutes and were conducted in a private room at the EC or an offsite community participation research office, based on room availability. Research
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staff used a tape recorder to document each interview, along with written field notes. Interviews followed a semi-structured interview guide informed by research
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questions. The interview guide provided a framework for covering key topics related to the purpose of the study while allowing the interviewer freedom to explore related topics brought
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up by study participants. Key questions sought to identify the impact of exercise, goals and priorities while exercising, and strategies for improving the evaluation process. Interviewers encouraged informal conversation through probing and clarification to create a rich dataset that better reflected the experiences of the study participants. 5
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ACCEPTED MANUSCRIPT Data Analysis (Coding) Research staff transcribed audio recordings verbatim, and the lead author did the initial coding. We used a modified method of deductive content analysis to code interview questions related to the first objective (goals of exercise).15 We then created an initial coding
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framework based on second-level categories within the International Classification of
Function, Disability and Health (ICF), with additional themes added as they emerged.15,16 We chose the ICF based on its ability to classify variables associated with physical function,
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disability, environment, and participation.
Next, the research team used thematic analysis17,18 to code interview questions related
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to barriers and facilitators to evaluation. Transcripts were read to provide coders with an overview of the content. Sentences that represented specific concepts, as guided by the aims of the study, were identified and given an initial code. Coders then grouped codes into themes using a framework guided by the interview questions. Coders identified themes and
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repeatedly returned to the original transcripts to ensure that the identification of codes and themes was consistent throughout the dataset.
To increase quality data analysis, three members of the research staff were involved
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in coding the transcripts for both of the objectives. The lead researcher was responsible for
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coding all ten transcripts and creating the initial coding scheme. Then, a second member of the research team coded 20% of the transcripts, first separately and then together with the lead researcher. A third researcher (more experienced with coding) reviewed any text that the initial team members coded differently and made a final decision. The team made final decisions regarding themes after all three researchers participated in a discussion that 6
Community Exercise for Individuals with Disability
ACCEPTED MANUSCRIPT included re-examination of the initial coding schemes, crosschecking defined themes with the original transcripts, and arriving at a consensus that reflected the most accurate interpretation of the text.
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Results Overview
Interviews revealed a range of goals and benefits related to participation in a
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community-based exercise program, which spanned the ICF domains of Body Functions and Activities and Participation. The goals of the exercise participants tended to fall exclusively
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under the Body Functions category of the ICF, whereas staff goals spanned both the Body Functions and Activities and Participation categories.
Goals and Benefits of Exercising for Individuals with Disabilities. Strength and endurance. Both exercise participants and staff most frequently
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reported the goals of increasing strength (b730) and endurance (b455), leading to subsequent improvements in mobility (d460), transfers (d420), and community participation (d230).
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General health. Other physical benefits frequently discussed were feelings of improved health and reductions in secondary conditions (d570), such as decreased pain
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(b280), fatigue (b130), and blood pressure (b420). In line with health-related goals, many exercise participants emphasized the importance of exercise for weight management (b530); however, they were unsure of how to adapt an exercise regimen to target this specific area of health.
7
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ACCEPTED MANUSCRIPT Psychological well-being. Additionally, both groups frequently mentioned using exercise as a means of building self-confidence (b126) and fighting depression (b152). This included feelings of empowerment and a sense of achievement as participants gained the knowledge and skills to do more for themselves. As exercise participants gained confidence
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in their abilities (b126), they also found it easier and more enjoyable to participate in social (d750) and leisure activities (d920).
Community participation. Many exercise participants and staff referenced
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activities at home (d230) and in the community (d460).
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improvements in physical fitness as a facilitator toward independence when completing daily
[Insert Table 1 about here] Barriers and Facilitators to Evaluation
Comprehensive and efficient evaluation. Staff discussed the importance of
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maintaining a balance between collecting data for program evaluation and running a community-based program. Just as an individual without a disability would go to exercise at a gym, program participants may simply want to do their exercises and leave without the
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hassle of additional assessments.
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Attitudes toward evaluation. While program participants rarely refused to complete evaluations, some participants did not understand the importance of the evaluations, which may affect effort and accuracy. Attitudes toward evaluation were further diminished when
8
Community Exercise for Individuals with Disability
ACCEPTED MANUSCRIPT staff viewed evaluation as an imposed requirement, without an understanding of how they could use the evaluation to improve services. Utility of data. Staff members also mentioned the importance of having valid, reliable data to use for securing funding, assembling board reports, public relations, and
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motivating participants. Another staff member described the importance of tracking data to contribute to evaluating their program and for sharing their methods and results with similar
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facilities.
Technology. Staff who stated that they rarely reference data expressed frustration
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with limited access to the data, which prevented them from utilizing and analyzing the data themselves. Staff identified the use of technology, such as iPads, as a way to improve access to program participant information and eliminate steps for documentation. Other staff members were hesitant to utilize technology, stating that some of the participants they serve
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are not computer savvy or may need assistance to answer questions. Inconsistency. A significant barrier to evaluation in a community-based setting, particularly with individuals with disabilities, is managing variability in conditions,
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attendance, and exercise intensity. Staff discussed the difficulty of keeping a consistent schedule for evaluation due to program participants experiencing medical or transportation
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issues. Frequency and intensity of exercise also vary significantly among program participants.
[Insert Table 2 about here]
9
Community Exercise for Individuals with Disability
ACCEPTED MANUSCRIPT Discussion The purpose of this project was to explore the perceived benefits of participation in a community-based exercise program for individuals with disabilities and to determine facilitators and barriers to evaluation in a community-based setting. Conducting interviews
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with individuals with disabilities and fitness specialists helped identify priorities and
determine areas of need as defined by the stakeholders. Defining the key components of a community-based exercise program and exploring the factors that often impede successful
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evaluation may aid in developing focused methods of evaluation. Practitioners can then use the information gained from evaluation to improve the quality and impact of community-
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based exercise programs for individuals with disabilities.12
Goals and Benefits of Exercising for Individuals with Disabilities As healthcare costs continue to rise, community-based exercise programs have the potential to be a powerful, low-cost means of addressing health and fitness across multiple
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populations. In line with current literature, participants in our study identified several benefits of exercise in terms of improving health and physical fitness, increasing community
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participation, and promoting self-efficacy.2,8,19,20,21 Understanding the common goals and perceived benefits of exercise within this population may help in developing and delivering
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exercise programs that motivate and promote adherence to exercise. The design of evaluations for this setting should therefore target changes in these areas to ensure relevance. However, more research is needed to create evidence-based guidelines that outline the specific types and doses of exercise required to target different health conditions. 10
Community Exercise for Individuals with Disability
ACCEPTED MANUSCRIPT Barriers and Facilitators to Evaluation While proper evaluation is critical, the evaluation of community-based exercise programs has been difficult due to the lack of standard evaluation techniques that are appropriate for use in community settings. Barriers and facilitators to evaluation identified by
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staff include maintaining a balance between evaluation and services, improving attitudes toward evaluation, use of technology, and consistency with scheduling.
While evaluation of participants must be comprehensive for funding and program
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evaluation purposes, comprehensiveness must be balanced with attention to staff resources and the participant’s time. Ideally, evaluations should produce a well-rounded representation
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of changes in health, fitness, and participation without requiring an undue amount of time and resources to complete. Additionally, the use of technology can streamline the evaluation process and allow staff to spend more time interacting with participants. Staff attitudes toward evaluation was identified as another component of
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successful evaluation, influencing both effort and accuracy of evaluation. Buy-in can be generated by providing a clear link to how results can be used to enhance services, such
motivation.
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as for providing a snapshot of the participant’s current health and fitness status and for
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These findings indicate the need for evaluations that are easy to administer, tailored to the individual, and simple to interpret. This is particularly true given that the individuals administering evaluations in a community setting may not be trained in conducting formal, standardized assessments and that the time allotted for assessments
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ACCEPTED MANUSCRIPT may be limited. Continual involvement of stakeholders in the development of evaluation measures and data collection methods will help to ensure relevance and promote buy-in. Limitations The small sample size and singular representation of a program limit the ability to
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transfer our findings to other programs. The sample size was informed by the available
participants within the timeframe for the study, which researchers felt was sufficient for providing preliminary data to inform revisions to evaluations for use in the EC. Further
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exploration of these topics with a larger sample of participants and staff from several
community-based exercise programs is warranted. Additionally, the interview guide sought
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to ask open questions to gain information on a variety of factors related to participation in exercise, both positive and negative. Specifically asking about changes in secondary conditions and community participation may have introduced a bias. However, the consistency with which many of the themes appeared across participants strengthened our
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confidence in the accuracy of the reported results.
Conclusion
A critical first step in improving the quality and impact of future methods of
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evaluation for use in the community setting is identifying the essential components of a
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community-based exercise program for individuals with disabilities, as well as identifying the barriers and facilitators to successful evaluation. The results from interviews conducted with individuals with disabilities and with fitness specialists who work with individuals with disabilities suggest that evaluation should be focused on measuring changes in strength and endurance, general health, community participation, and psychological well-being. 12
Community Exercise for Individuals with Disability
ACCEPTED MANUSCRIPT Additionally, evaluations should be comprehensive yet easy to administer and interpret to improve services. Incorporating these suggestions will ensure that future evaluations are client-centered and are appropriate for use in the community setting. In turn, the use of more appropriate evaluations will improve the ability of community-based exercise programs to
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document changes in participant outcomes and evaluate the impact of their programs.
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ACCEPTED MANUSCRIPT References 1. Centers for Disease Control and Prevention. Physical activity among adults with a disability-US, 2005. MMWR Morb Mortal Wkly Rep. 2007;56:1021-1024. 2. Rimmer JH, Chen MD, McCubbin JA, Drum C, Peterson J. Exercise intervention research
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on persons with disabilities: what we know and where we need to go. Am J Phys Med Rehabil. 2010;89:249-263.
3. Nary D, Froelich KA, White GW. Accessibility of fitness facilities for persons with
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physical disabilities using wheelchairs. Top Spinal Cord Inj Rehabil. 2000;6:87-98. 4. Rimmer JH. The conspicuous absence of people with disabilities in public fitness and
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recreation facilities: lack of interest or lack of access? Am J Health Promot. 2005;19:327-329.
5. Rimmer JH. Getting beyond the plateau: bridging the gap between rehabilitation and community-based exercise. Am J Phys Med Rehabil. 2012;4:857-861.
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6. Rose DK, Schafer J, Conroy C. Extending the continuum of care post stroke: creating a partnership to provide a community-based wellness program. J Neurol Phys Ther. 2013;37:78-84.
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7. van der Ploeg HP, Streppel KR, van der Beek AJ, et al. Successfully improving physical
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activity behavior after rehabilitation. Am J Health Promot. 2007;21:153-159. 8. Desveaux L, Beauchamp M, Goldstein R, Brooks D. Community-based exercise programs as a strategy to optimize function in chronic disease: a systematic review. Med Care. 2014; 52:216-226.
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ACCEPTED MANUSCRIPT 9. Weinstein MC, Skinner JA. Comparative effectiveness and health care spending: implications and reform. N Engl J Med. 2010;362:460-465. 10. Pang MYC, Eng JJ, Dawson AS, McKay HA, Harris JE. A community-based fitness and
controlled trial. J Am Geriatr Soc. 2005;53:1667-1674.
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mobility exercise program for older adults with chronic stroke: a randomized,
11. Wade DT, Geneeskunde F, Hoensbroek I. Community rehabilitation or rehabilitation in the community? Disabil Rehabil.2003;25:875-881.
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12. Kielhofner G, Hammel J, Finlayson M, Helfrich C, Taylor RR. Documenting outcomes of occupational therapy: the center for outcomes research and education. AJOT.
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2004;58:15-23.
13. Owen, N., Glanz, K., Sallis, J.F., Kelder, S.H. Evidence-based approaches to dissemination and diffusion of physical activity interventions. Am J of Prev Med. 2006; 31(4):35-44.
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14. Glasgow, R. et al. The future of health behavior change research What is needed to improve translation of research into health promotion practice? Ann Behav Med. 2004; 27(1):3-12.
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15. Duggan, C.H., Albright, K.J., Lequerica, A. Using the ICF to code and analyse women’s
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disability narratives. Disability and Rehabilitation. 2008;30:12-13, 978-990. 16. World Health Organization. International Classification of Functioning, Disability and Health. Geneva, Switzerland: World Health Organization; 2001.
17. Braun V, Clark V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77101. 15
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ACCEPTED MANUSCRIPT 18. Kreuger R, Casey M. Focus Groups: A Practical Guide for Applied Research. London, UK: SAGE Publications; 2000. 19. Office of the Surgeon General, Office on Disability. The Surgeon General’s Call to
MD: Office of the U.S. Surgeon General; 2005.
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Action to Improve the Health and Wellness of Persons with Disabilities. Rockville,
20. Hanson CS, Nabavi D, Yuen HK. The effect of sports on level of community integration as reported by persons with spinal cord injury. Am J Occup Ther. 2001;55:332-338.
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21. Hetz SP, Latimer AE, Martin-Ginis KA. Activities of daily living performed by
individuals with SCI: relationships with physical fitness and leisure time physical
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activity. Spinal Cord. 2009;47:550–554
22. Graham R, Kremer J, Wheeler G. Physical exercise and psychological well-being among people with chronic illness and disability. J Health Psychol. 2008;13:447-458. 23. Latimer AE, Martin Ginis KA, Hicks AL, McCartney N. An examination of mechanisms
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of exercise-induced change in pain and physical and psychological well-being among
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people with spinal cord injury. J Rehabil Res Dev. 2004;41:643-652.
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Table 1. Responses Regarding Goals Related to Exercise Strength and The goal for participants is to increase their strength and endurance and their overall physical Endurance health. Which we hope basically translates into them doing more in their community and doing what they want to do in their life. –Staff I think I can do more at home because I’m stronger, I feel better. –Participant Physical A lot of folks have their primary disability going on, but there are a lot of things that happen Fitness/General frequently because of their compromised medical system. If we can prevent those things from Health occurring or getting worse, that’s our goal. –Staff So I want to exercise for general health, so I can stay around. I think it’s important to me because I know, being disabled, my deconditioning level is going to be faster than the average person. It’s just like a sedentary lifestyle. –Participant I think overall [exercise has] helped me get less infections over time because I think that it’s boosted my overall wellness. –Participant Community Over time, I have just continued to acquire more and more independence. So my wife can be gone Participation for a weekend, for example, and I don’t have to have anybody around whatsoever. –Participant Psychological That’s what I hope to do, is to give people that ability to know that they are in control of something and it may be something as simple as yourself. –Staff Kind of an increase in self-efficacy. A sense of accomplishment and pride. Like, I didn’t think I could do that when I came in and I was wrong. I can do more than I thought I could. –Staff
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Table 2. Responses Regarding Barriers and Facilitators to Evaluation Comprehensive and It’s just got to be balanced and streamlined. The data is important. It has to be something that Efficient balances with research in a community setting to make it doable. –Staff From our [staff] standpoint, we kind of end up having to be one-on-one with our person when we are doing our evaluation. Depending on the time of day and what’s happening with the gym, it can mess with the flow. –Staff Attitudes Toward I don’t know that [participants] find [evaluation] important, but in the time that I’ve been around, Evaluation only two people have ever not done it. So the length of it, everyone ends up doing it. Is it their favorite part of life? No. But they do it. –Staff Other than reading [the evaluation] through the other day, I have not seen it or used it hardly at all. –Staff Utility of Data It’s nice initially to find that baseline measure. Some of our participants have not worked out in a long time or have never worked out. To accurately measure where they are currently and build their workout based on that. –Staff I feel confident that I can talk to people with authority about what we do, why is it important. It’s being able to tell people that this produces real, tangible, measurable results. –Staff We want to contribute to [research on exercise and disability] and show that here’s the standards we use and it worked this way for our population. –Staff Technology It would be really awesome if, as somebody is doing their evaluation, we are just typing the data and it’s already in there ready to go. There’s no paper and it’s just there. Anybody can access it at any time. –Staff Inconsistency We have many people that things happen medically, so the timeframe [for evaluation] is sometimes off a little bit with each participant; as far as is it a true 12-week capture of the data, or have they missed a few weeks and it’s really 16 weeks out? –Staff When people do the 12-week program, they do cardio and weights, but after a certain point it’s always participant choice and what they want to do when they come in. –Staff
S1936-6574(17)30166-8
DOI:
10.1016/j.dhjo.2017.09.001
Reference:
DHJO 637
To appear in:
Disability and Health Journal
Received Date: 28 November 2016 Revised Date:
17 August 2017
Accepted Date: 8 September 2017
Please cite this article as: Adam SL, Morgan KA, Meaningful components of a community-based exercise program for individuals with disabilities: A qualitative study, Disability and Health Journal (2017), doi: 10.1016/j.dhjo.2017.09.001. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT
Meaningful components of a community-based exercise program for individuals with disabilities: A qualitative study Running Head: Community Exercise for Individuals with Disability
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Sarah L. Adam, OTD/S and Kerri A. Morgan, PhD
SC
Program in Occupational Therapy, Washington University School of Medicine 4444 Forest Park Ave. St. Louis, MO, USA 63018
Kerri Morgan, PhD Email: [email protected]
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Corresponding Author: Sarah Adam, 1412 Brandy Circle, Naperville, IL 60540, USA Email: [email protected] Phone: 630 779 0915
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Statement of Funding This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
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Acknowledgements The authors would like to thank Jessica Dashner, Lindsey Bean-Kampwerth, Melissa Smith, Megen Devine, and Rachel Tangen for their contributions to this project. They would also like to thank the exercise participants and staff members of the Paraquad Health and Wellness Center for providing their valuable insight.
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This manuscript has not been published and will not be submitted elsewhere for publication while being considered by the journal Disability Health Journal. This research has not been presented at any prior meetings or posted on any websites. Brief Report Keywords: exercise; evaluation; public health; community; disability Abstract word count: 245 Manuscript word count: 2516 References: 23 Tables: 2 Submission date: 08/17/2017
ACCEPTED MANUSCRIPT Abstract Background: Enhanced methods of evaluation are necessary to identify community-based exercise interventions that promote physical activity and improve health and participation for
RI PT
individuals with disabilities. The heterogeneity of the populations served, interventions implemented, and outcome measures used remains a barrier to effectively evaluate programs and generate evidence to inform best practice. Objective: To explore goals and benefits of
SC
community-based exercise for individuals with disabilities and determine barriers and
facilitators to evaluation in a community setting. Methods: We conducted semi-structured
M AN U
interviews with exercise participants and staff of a community-based exercise program for individuals with disabilities. We then coded responses to interview questions for themes using thematic analysis or deductive content analysis, with codes linked to categories within the International Classification of Functioning, Disability and Health (ICF). Results:
TE D
Identified goals and benefits spanned the ICF domains of Body Functions and Activities and Participation. Commonly cited goals and benefits included improving strength and endurance, general health, self-efficacy, community participation, and the importance of
EP
returning to exercise. Barriers and facilitators to evaluation identified by staff included maintaining a balance between evaluation and services, negative attitudes toward evaluation,
AC C
access to data, and consistency with scheduling. Conclusions: These results can be used to enhance evaluation within community-based exercise programs for individuals with disabilities, which may improve both the quality and impact of these programs. Keywords: exercise; evaluation; public health; community; disability
Community Exercise for Individuals with Disability
ACCEPTED MANUSCRIPT Introduction For people with disabilities, a physically active lifestyle is essential to physiological and psychological well-being, maintenance of functional independence, and prevention of secondary health conditions. Despite the known benefits of physical activity, 62.3% of people
RI PT
with disabilities are not consistently active enough to realize these health benefits.1,2 A
significant barrier lies in the lack of opportunities for individuals with disabilities to continue to exercise post-rehabilitation. Common barriers to exercise include limited knowledge on
SC
methods of adaptive exercise, as well as the physical inaccessibility of exercise facilities and equipment.3,4 Unfortunately, typical community exercise facilities generally do not provide
exercise after leaving rehabilitation.3,4
M AN U
the types of support necessary for individuals with a disability to successfully participate in
With shorter lengths of stay in rehabilitation, healthcare resources must be maximized by extending the continuum of care into the community through accessible, community-
TE D
based exercise programs that target individuals with disabilities. Such exercise programs utilize accessible exercise equipment and experienced health professionals to facilitate exercise that is tailored to each participant’s needs and capabilities.5 These programs can
EP
increase participation in exercise, leading to reduced risk of secondary health conditions,
7
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increased community participation, and improved health and function after injury or illness.5-
Although a wealth of evidence exists regarding the benefits of exercise interventions
for people with disabilities, research on community-based exercise interventions is limited.2,10 The use of outcome evaluations is crucial in defining the effectiveness of 2
Community Exercise for Individuals with Disability
ACCEPTED MANUSCRIPT community-based exercise interventions in promoting positive changes in health and physical fitness for individuals with a disability. However, the populations served, interventions implemented, and outcome measures used for exercise interventions are often heterogeneous, which presents a significant barrier to effective evaluation. Improving methods of outcome
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evaluation will allow these programs to document changes in participant outcomes,
generating evidence that will ensure that accessible, community-based exercise programs are well funded and able to provide high quality, effective services.11
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The use of a participatory approach, which involves key stakeholders as partners, is an important first step in creating outcome measures that are focused and consumer-
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centered.12 Conducting interviews with individuals with disabilities and with fitness specialists who work with individuals with disabilities may provide valuable insight into the key components of these exercise programs and the barriers and facilitators to successful evaluation. Defining these key components will help guide the creation of evaluation
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methods that are relevant and appropriate for use in a community setting. In response, the current study has two main objectives: to explore goals and benefits of exercise for individuals with disabilities and to determine the barriers and facilitators to
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outcome evaluation in an accessible, community-based exercise setting.
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ACCEPTED MANUSCRIPT Methods Study Design We used a qualitative approach, using semi-structured interviews with participants
the University Institutional Review Board. Exercise Center
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and staff of a community-based exercise program. All aspects of this study were approved by
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The Exercise Center (EC), located in the Midwest region of the United States is an example of an accessible community-based exercise program. The EC uses accessible
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exercise equipment and experienced health professionals to develop exercise plans that are individualized to each participant’s needs and capabilities. The EC serves individuals with varying types of disabilities including: spinal cord injury, stroke, Parkinson’s disease, and multiple sclerosis. The exercise sessions typically last one hour and include warm-up, stretching, endurance exercises, strength exercises, and cool-down. Participants receive one-
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on-one assistance or supervision during their exercise sessions from an allied health professional (i.e., occupational/physical therapist, occupational/physical therapy assistant, or
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trained graduate student).
The EC takes a comprehensive approach to assessment, assessing: functional health,
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reduction of secondary conditions (e.g., pain, fatigue, obesity, and depression), and participation in community activities (e.g., work, leisure). However, the EC deals with issues similar to those that other community programs experience, such as administering lengthy evaluations and difficulty translating data into useful information for program 4
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ACCEPTED MANUSCRIPT development.13,14 Improving the methods of evaluation will make evaluation more appropriate for use in the community setting. Participants
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This study included a purposive sample of four exercise participants and six program staff from the EC. We used our partnership with the EC to recruit appropriate individuals through word of mouth and advertisements at the EC. Exercise participants and staff
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members had a minimum of one year of experience at the EC, and exercise participants
varied by type of disability and exercise history. Written informed consent was obtained prior
Data Collection (Interviews)
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to the interview.
The lead author conducted interviews with the assistance of graduate students. Interviews lasted between 45 and 75 minutes and were conducted in a private room at the EC or an offsite community participation research office, based on room availability. Research
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staff used a tape recorder to document each interview, along with written field notes. Interviews followed a semi-structured interview guide informed by research
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questions. The interview guide provided a framework for covering key topics related to the purpose of the study while allowing the interviewer freedom to explore related topics brought
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up by study participants. Key questions sought to identify the impact of exercise, goals and priorities while exercising, and strategies for improving the evaluation process. Interviewers encouraged informal conversation through probing and clarification to create a rich dataset that better reflected the experiences of the study participants. 5
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ACCEPTED MANUSCRIPT Data Analysis (Coding) Research staff transcribed audio recordings verbatim, and the lead author did the initial coding. We used a modified method of deductive content analysis to code interview questions related to the first objective (goals of exercise).15 We then created an initial coding
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framework based on second-level categories within the International Classification of
Function, Disability and Health (ICF), with additional themes added as they emerged.15,16 We chose the ICF based on its ability to classify variables associated with physical function,
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disability, environment, and participation.
Next, the research team used thematic analysis17,18 to code interview questions related
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to barriers and facilitators to evaluation. Transcripts were read to provide coders with an overview of the content. Sentences that represented specific concepts, as guided by the aims of the study, were identified and given an initial code. Coders then grouped codes into themes using a framework guided by the interview questions. Coders identified themes and
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repeatedly returned to the original transcripts to ensure that the identification of codes and themes was consistent throughout the dataset.
To increase quality data analysis, three members of the research staff were involved
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in coding the transcripts for both of the objectives. The lead researcher was responsible for
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coding all ten transcripts and creating the initial coding scheme. Then, a second member of the research team coded 20% of the transcripts, first separately and then together with the lead researcher. A third researcher (more experienced with coding) reviewed any text that the initial team members coded differently and made a final decision. The team made final decisions regarding themes after all three researchers participated in a discussion that 6
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ACCEPTED MANUSCRIPT included re-examination of the initial coding schemes, crosschecking defined themes with the original transcripts, and arriving at a consensus that reflected the most accurate interpretation of the text.
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Results Overview
Interviews revealed a range of goals and benefits related to participation in a
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community-based exercise program, which spanned the ICF domains of Body Functions and Activities and Participation. The goals of the exercise participants tended to fall exclusively
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under the Body Functions category of the ICF, whereas staff goals spanned both the Body Functions and Activities and Participation categories.
Goals and Benefits of Exercising for Individuals with Disabilities. Strength and endurance. Both exercise participants and staff most frequently
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reported the goals of increasing strength (b730) and endurance (b455), leading to subsequent improvements in mobility (d460), transfers (d420), and community participation (d230).
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General health. Other physical benefits frequently discussed were feelings of improved health and reductions in secondary conditions (d570), such as decreased pain
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(b280), fatigue (b130), and blood pressure (b420). In line with health-related goals, many exercise participants emphasized the importance of exercise for weight management (b530); however, they were unsure of how to adapt an exercise regimen to target this specific area of health.
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ACCEPTED MANUSCRIPT Psychological well-being. Additionally, both groups frequently mentioned using exercise as a means of building self-confidence (b126) and fighting depression (b152). This included feelings of empowerment and a sense of achievement as participants gained the knowledge and skills to do more for themselves. As exercise participants gained confidence
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in their abilities (b126), they also found it easier and more enjoyable to participate in social (d750) and leisure activities (d920).
Community participation. Many exercise participants and staff referenced
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activities at home (d230) and in the community (d460).
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improvements in physical fitness as a facilitator toward independence when completing daily
[Insert Table 1 about here] Barriers and Facilitators to Evaluation
Comprehensive and efficient evaluation. Staff discussed the importance of
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maintaining a balance between collecting data for program evaluation and running a community-based program. Just as an individual without a disability would go to exercise at a gym, program participants may simply want to do their exercises and leave without the
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hassle of additional assessments.
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Attitudes toward evaluation. While program participants rarely refused to complete evaluations, some participants did not understand the importance of the evaluations, which may affect effort and accuracy. Attitudes toward evaluation were further diminished when
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ACCEPTED MANUSCRIPT staff viewed evaluation as an imposed requirement, without an understanding of how they could use the evaluation to improve services. Utility of data. Staff members also mentioned the importance of having valid, reliable data to use for securing funding, assembling board reports, public relations, and
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motivating participants. Another staff member described the importance of tracking data to contribute to evaluating their program and for sharing their methods and results with similar
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facilities.
Technology. Staff who stated that they rarely reference data expressed frustration
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with limited access to the data, which prevented them from utilizing and analyzing the data themselves. Staff identified the use of technology, such as iPads, as a way to improve access to program participant information and eliminate steps for documentation. Other staff members were hesitant to utilize technology, stating that some of the participants they serve
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are not computer savvy or may need assistance to answer questions. Inconsistency. A significant barrier to evaluation in a community-based setting, particularly with individuals with disabilities, is managing variability in conditions,
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attendance, and exercise intensity. Staff discussed the difficulty of keeping a consistent schedule for evaluation due to program participants experiencing medical or transportation
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issues. Frequency and intensity of exercise also vary significantly among program participants.
[Insert Table 2 about here]
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ACCEPTED MANUSCRIPT Discussion The purpose of this project was to explore the perceived benefits of participation in a community-based exercise program for individuals with disabilities and to determine facilitators and barriers to evaluation in a community-based setting. Conducting interviews
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with individuals with disabilities and fitness specialists helped identify priorities and
determine areas of need as defined by the stakeholders. Defining the key components of a community-based exercise program and exploring the factors that often impede successful
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evaluation may aid in developing focused methods of evaluation. Practitioners can then use the information gained from evaluation to improve the quality and impact of community-
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based exercise programs for individuals with disabilities.12
Goals and Benefits of Exercising for Individuals with Disabilities As healthcare costs continue to rise, community-based exercise programs have the potential to be a powerful, low-cost means of addressing health and fitness across multiple
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populations. In line with current literature, participants in our study identified several benefits of exercise in terms of improving health and physical fitness, increasing community
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participation, and promoting self-efficacy.2,8,19,20,21 Understanding the common goals and perceived benefits of exercise within this population may help in developing and delivering
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exercise programs that motivate and promote adherence to exercise. The design of evaluations for this setting should therefore target changes in these areas to ensure relevance. However, more research is needed to create evidence-based guidelines that outline the specific types and doses of exercise required to target different health conditions. 10
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ACCEPTED MANUSCRIPT Barriers and Facilitators to Evaluation While proper evaluation is critical, the evaluation of community-based exercise programs has been difficult due to the lack of standard evaluation techniques that are appropriate for use in community settings. Barriers and facilitators to evaluation identified by
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staff include maintaining a balance between evaluation and services, improving attitudes toward evaluation, use of technology, and consistency with scheduling.
While evaluation of participants must be comprehensive for funding and program
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evaluation purposes, comprehensiveness must be balanced with attention to staff resources and the participant’s time. Ideally, evaluations should produce a well-rounded representation
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of changes in health, fitness, and participation without requiring an undue amount of time and resources to complete. Additionally, the use of technology can streamline the evaluation process and allow staff to spend more time interacting with participants. Staff attitudes toward evaluation was identified as another component of
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successful evaluation, influencing both effort and accuracy of evaluation. Buy-in can be generated by providing a clear link to how results can be used to enhance services, such
motivation.
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as for providing a snapshot of the participant’s current health and fitness status and for
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These findings indicate the need for evaluations that are easy to administer, tailored to the individual, and simple to interpret. This is particularly true given that the individuals administering evaluations in a community setting may not be trained in conducting formal, standardized assessments and that the time allotted for assessments
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ACCEPTED MANUSCRIPT may be limited. Continual involvement of stakeholders in the development of evaluation measures and data collection methods will help to ensure relevance and promote buy-in. Limitations The small sample size and singular representation of a program limit the ability to
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transfer our findings to other programs. The sample size was informed by the available
participants within the timeframe for the study, which researchers felt was sufficient for providing preliminary data to inform revisions to evaluations for use in the EC. Further
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exploration of these topics with a larger sample of participants and staff from several
community-based exercise programs is warranted. Additionally, the interview guide sought
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to ask open questions to gain information on a variety of factors related to participation in exercise, both positive and negative. Specifically asking about changes in secondary conditions and community participation may have introduced a bias. However, the consistency with which many of the themes appeared across participants strengthened our
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confidence in the accuracy of the reported results.
Conclusion
A critical first step in improving the quality and impact of future methods of
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evaluation for use in the community setting is identifying the essential components of a
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community-based exercise program for individuals with disabilities, as well as identifying the barriers and facilitators to successful evaluation. The results from interviews conducted with individuals with disabilities and with fitness specialists who work with individuals with disabilities suggest that evaluation should be focused on measuring changes in strength and endurance, general health, community participation, and psychological well-being. 12
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ACCEPTED MANUSCRIPT Additionally, evaluations should be comprehensive yet easy to administer and interpret to improve services. Incorporating these suggestions will ensure that future evaluations are client-centered and are appropriate for use in the community setting. In turn, the use of more appropriate evaluations will improve the ability of community-based exercise programs to
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document changes in participant outcomes and evaluate the impact of their programs.
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ACCEPTED MANUSCRIPT References 1. Centers for Disease Control and Prevention. Physical activity among adults with a disability-US, 2005. MMWR Morb Mortal Wkly Rep. 2007;56:1021-1024. 2. Rimmer JH, Chen MD, McCubbin JA, Drum C, Peterson J. Exercise intervention research
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on persons with disabilities: what we know and where we need to go. Am J Phys Med Rehabil. 2010;89:249-263.
3. Nary D, Froelich KA, White GW. Accessibility of fitness facilities for persons with
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physical disabilities using wheelchairs. Top Spinal Cord Inj Rehabil. 2000;6:87-98. 4. Rimmer JH. The conspicuous absence of people with disabilities in public fitness and
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recreation facilities: lack of interest or lack of access? Am J Health Promot. 2005;19:327-329.
5. Rimmer JH. Getting beyond the plateau: bridging the gap between rehabilitation and community-based exercise. Am J Phys Med Rehabil. 2012;4:857-861.
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6. Rose DK, Schafer J, Conroy C. Extending the continuum of care post stroke: creating a partnership to provide a community-based wellness program. J Neurol Phys Ther. 2013;37:78-84.
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7. van der Ploeg HP, Streppel KR, van der Beek AJ, et al. Successfully improving physical
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activity behavior after rehabilitation. Am J Health Promot. 2007;21:153-159. 8. Desveaux L, Beauchamp M, Goldstein R, Brooks D. Community-based exercise programs as a strategy to optimize function in chronic disease: a systematic review. Med Care. 2014; 52:216-226.
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ACCEPTED MANUSCRIPT 9. Weinstein MC, Skinner JA. Comparative effectiveness and health care spending: implications and reform. N Engl J Med. 2010;362:460-465. 10. Pang MYC, Eng JJ, Dawson AS, McKay HA, Harris JE. A community-based fitness and
controlled trial. J Am Geriatr Soc. 2005;53:1667-1674.
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mobility exercise program for older adults with chronic stroke: a randomized,
11. Wade DT, Geneeskunde F, Hoensbroek I. Community rehabilitation or rehabilitation in the community? Disabil Rehabil.2003;25:875-881.
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12. Kielhofner G, Hammel J, Finlayson M, Helfrich C, Taylor RR. Documenting outcomes of occupational therapy: the center for outcomes research and education. AJOT.
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2004;58:15-23.
13. Owen, N., Glanz, K., Sallis, J.F., Kelder, S.H. Evidence-based approaches to dissemination and diffusion of physical activity interventions. Am J of Prev Med. 2006; 31(4):35-44.
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14. Glasgow, R. et al. The future of health behavior change research What is needed to improve translation of research into health promotion practice? Ann Behav Med. 2004; 27(1):3-12.
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15. Duggan, C.H., Albright, K.J., Lequerica, A. Using the ICF to code and analyse women’s
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disability narratives. Disability and Rehabilitation. 2008;30:12-13, 978-990. 16. World Health Organization. International Classification of Functioning, Disability and Health. Geneva, Switzerland: World Health Organization; 2001.
17. Braun V, Clark V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77101. 15
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ACCEPTED MANUSCRIPT 18. Kreuger R, Casey M. Focus Groups: A Practical Guide for Applied Research. London, UK: SAGE Publications; 2000. 19. Office of the Surgeon General, Office on Disability. The Surgeon General’s Call to
MD: Office of the U.S. Surgeon General; 2005.
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Action to Improve the Health and Wellness of Persons with Disabilities. Rockville,
20. Hanson CS, Nabavi D, Yuen HK. The effect of sports on level of community integration as reported by persons with spinal cord injury. Am J Occup Ther. 2001;55:332-338.
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21. Hetz SP, Latimer AE, Martin-Ginis KA. Activities of daily living performed by
individuals with SCI: relationships with physical fitness and leisure time physical
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activity. Spinal Cord. 2009;47:550–554
22. Graham R, Kremer J, Wheeler G. Physical exercise and psychological well-being among people with chronic illness and disability. J Health Psychol. 2008;13:447-458. 23. Latimer AE, Martin Ginis KA, Hicks AL, McCartney N. An examination of mechanisms
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of exercise-induced change in pain and physical and psychological well-being among
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people with spinal cord injury. J Rehabil Res Dev. 2004;41:643-652.
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Table 1. Responses Regarding Goals Related to Exercise Strength and The goal for participants is to increase their strength and endurance and their overall physical Endurance health. Which we hope basically translates into them doing more in their community and doing what they want to do in their life. –Staff I think I can do more at home because I’m stronger, I feel better. –Participant Physical A lot of folks have their primary disability going on, but there are a lot of things that happen Fitness/General frequently because of their compromised medical system. If we can prevent those things from Health occurring or getting worse, that’s our goal. –Staff So I want to exercise for general health, so I can stay around. I think it’s important to me because I know, being disabled, my deconditioning level is going to be faster than the average person. It’s just like a sedentary lifestyle. –Participant I think overall [exercise has] helped me get less infections over time because I think that it’s boosted my overall wellness. –Participant Community Over time, I have just continued to acquire more and more independence. So my wife can be gone Participation for a weekend, for example, and I don’t have to have anybody around whatsoever. –Participant Psychological That’s what I hope to do, is to give people that ability to know that they are in control of something and it may be something as simple as yourself. –Staff Kind of an increase in self-efficacy. A sense of accomplishment and pride. Like, I didn’t think I could do that when I came in and I was wrong. I can do more than I thought I could. –Staff
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Table 2. Responses Regarding Barriers and Facilitators to Evaluation Comprehensive and It’s just got to be balanced and streamlined. The data is important. It has to be something that Efficient balances with research in a community setting to make it doable. –Staff From our [staff] standpoint, we kind of end up having to be one-on-one with our person when we are doing our evaluation. Depending on the time of day and what’s happening with the gym, it can mess with the flow. –Staff Attitudes Toward I don’t know that [participants] find [evaluation] important, but in the time that I’ve been around, Evaluation only two people have ever not done it. So the length of it, everyone ends up doing it. Is it their favorite part of life? No. But they do it. –Staff Other than reading [the evaluation] through the other day, I have not seen it or used it hardly at all. –Staff Utility of Data It’s nice initially to find that baseline measure. Some of our participants have not worked out in a long time or have never worked out. To accurately measure where they are currently and build their workout based on that. –Staff I feel confident that I can talk to people with authority about what we do, why is it important. It’s being able to tell people that this produces real, tangible, measurable results. –Staff We want to contribute to [research on exercise and disability] and show that here’s the standards we use and it worked this way for our population. –Staff Technology It would be really awesome if, as somebody is doing their evaluation, we are just typing the data and it’s already in there ready to go. There’s no paper and it’s just there. Anybody can access it at any time. –Staff Inconsistency We have many people that things happen medically, so the timeframe [for evaluation] is sometimes off a little bit with each participant; as far as is it a true 12-week capture of the data, or have they missed a few weeks and it’s really 16 weeks out? –Staff When people do the 12-week program, they do cardio and weights, but after a certain point it’s always participant choice and what they want to do when they come in. –Staff