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Participant-Reported Benefits of Involvement in an Adaptive Sports Program: A Qualitative Study.

ABSTRACT: BACKGROUND:Although participation in adaptive sports offers numerous benefits for persons with disabilities, a substantial number of eligible persons do not take part. Previous studies have identified personal and environmental factors that promote or inhibit adaptive sports participation. However, these studies have considered a relatively narrow range of factors. OBJECTIVE:To use qualitative research techniques to identify novel factors that influence participation in a community-based adaptive sports program. DESIGN:Qualitative focus group study. SETTING:Community-based adaptive sports programs affiliated with a rehabilitation hospital network. PARTICIPANTS:Participants were recruited from among 134 adults who registered for the sports program in 2013-2014. Participants with mobility or sensory impairment, absence of cognitive impairment, and English proficiency were included. The 90 former participants with adequate contact information were contacted, and 17 participated in the focus groups. METHODS:Two moderators led each of 3 audio-recorded focus groups using a moderator's guide. We conducted a thematic analysis of transcript data to identify perceived benefits, barriers, and facilitators of participation. RESULTS:Our analysis identified 5 themes: physical well-being and health/safety; interpersonal and social relationships; intrapersonal and beliefs/attitudes; physical environment; and access. Participants experienced participation both as physically beneficial and as transformative in terms of how they view themselves. However, programs drew on limited personal resources and sometimes presented a perceived risk of injury. Finding information about and transportation to programs was a challenge. Participants formed an informal community that modeled what athletes with disabilities are capable of, helping to overcome initial doubts. CONCLUSIONS:To gain the benefits of participation, athletes overcame significant barriers, several of which may be modifiable, including transportation and difficult-to-find information about program offerings. The importance of community and raising awareness of athletes' own abilities suggests a key role for mentorship. Our study contributes to the understanding of experiential aspects that motivate participation in adaptive sports. LEVEL OF EVIDENCE:IV.

SUBMITTER: Lape EC

PROVIDER: S-EPMC5924421 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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Participant-Reported Benefits of Involvement in an Adaptive Sports Program: A Qualitative Study.

Lape Emma C EC Katz Jeffrey N JN Losina Elena E Kerman Hannah M HM Gedman Marissa A MA Blauwet Cheri A CA

PM & R : the journal of injury, function, and rehabilitation 20171027 5

<h4>Background</h4>Although participation in adaptive sports offers numerous benefits for persons with disabilities, a substantial number of eligible persons do not take part. Previous studies have identified personal and environmental factors that promote or inhibit adaptive sports participation. However, these studies have considered a relatively narrow range of factors.<h4>Objective</h4>To use qualitative research techniques to identify novel factors that influence participation in a communit ...[more]

PMID: 29111464

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Project description:BackgroundResidential weight-loss programs aim to help persons with obesity lose weight and maintain a long-term healthy lifestyle. Knowledge is needed on the different actors' perceptions and experiences from such programs. The aim of this study was to describe how personnel argued for and perceived a residential weight-loss program, to investigate how the participants experienced the program, and to contrast these perspectives.MethodsThis qualitative study took place in an 18-week residential weight-loss program. Exercise, diet, and personal development were the main components in the program. Data was collected through participant observation and individual and focus group interviews with participants and personnel.ResultsProgram personnel characterized persons with obesity in specific terms, and these formed the basis of the educational aims, teaching principles, and content of the program. According to personnel, persons with obesity typically had problems acknowledging their own resources, lived unstructured lives, had a distorted relationship to food, experienced a range of social problems and featured a lack of personal insight. Program participants reported enthusiasm about their experiences of exercise and appreciated measures of success with the exercise program. They had, however, very different experiences regarding the usefulness and appropriateness of the parts of the program focused on social and personal development. Some felt that weight loss required an engagement with personal development while others viewed it as unnecessary and inappropriate.ConclusionThe reliance in personnel accounts on particular characteristics of persons with obesity as a rationale for the program might lead to stigmatizing and stereotyping. Program activities focused on social and personal development need to be better understood by participants if they are to be viewed as helpful. To achieve this personnel must carefully consider how these parts of the program are communicated and conducted.

Project description:BackgroundThe Good Life with osteoArthritis: Denmark (GLA:D™), an evidence-based education and exercise program designed for conservative management of knee and hip osteoarthritis (OA), has been shown to benefit participants by reducing pain, improving function, and quality of life. Standardized reporting in the GLA:D databases enabled the measurement of self-reported and performance-based outcomes. There is a paucity of qualitative research on the participants' perceptions of this program, and it is important to understand whether participants' perceptions of the benefits of the program align with reported quantitative findings.MethodsWe conducted semi-structured telephone interviews with individuals who participated in the GLA:D program from January 2017 to December 2018 in Alberta, Canada. Data were analyzed using an interpretive description approach and thematic analysis to identify emergent themes and sub-themes associated with participants perceived benefits of the GLA:D program. We analyzed the data using NVivo Pro software. Member checking and bracketing were used to ensure the rigour of the analysis.Results30 participants were interviewed (70% female, 57% rural, 73% knee OA). Most participants felt the program positively benefited them. Two themes emerged from the analysis: wellness and self-efficacy. Participants felt the program benefited their wellness, particularly with regard to pain relief, and improvements in mobility, strength, and overall well-being. Participants felt the program benefited them by promoting a sense of self-efficacy through improving the confidence to perform exercise and routine activities, as well as awareness, and motivation to manage their OA symptoms. Twenty percent of participants felt no benefits from the program due to experiencing increased pain and feeling their OA was too severe to participate.DiscussionThe GLA:D program was viewed as beneficial to most participants, this study also identified factors (e.g., severe OA, extreme pain) as to why some participants did not experience meaningful improvements. Early intervention with the GLA:D program prior to individuals experiencing severe OA could help increase the number of participants who experience benefits from their participation.ConclusionAs the GLA:D program expands across jurisdictions, providers of the program may consider recruitment earlier in disease progression and targeting those with mild and moderate OA.

Project description:ObjectivesParticipant-led research (PLR) is a rapidly developing form of citizen science in which individuals can create personal and generalisable knowledge. Although PLR lacks a formal framework for ethical review, participants should not be excused from considering the ethical implications of their work. Therefore, a PLR cohort consisting of 24 self-trackers aimed to: (1) substitute research ethics board procedures with engagement in ethical reflection before and throughout the study and (2) draft principles to encourage further development of the governance and ethical review of PLR.MethodsA qualitative case study method was used to analyse the ethical reflection process. Participants discussed study risks, risk management strategies and benefits pre-project, during a series of weekly webinars, via individual meetings with the participant-organisers, and during semi-structured interviews at project completion. Themes arising from discussions and interviews were used to draft prospective principles to guide PLR.ResultsData control, aggregation and identifiability were the most common risks identified. These were addressed by a commitment to transparency among all participants and by establishing participant control via self-collection and self-management of data. Group discussions and resources (eg, assistance with experimental design and data analysis) were the most commonly referenced benefits of participation. Additional benefits included greater understanding of one's physiology and greater ability to structure an experiment. Nine principles were constructed to encourage further development of ethical PLR practices. All participants expressed interest in participating in future PLR.ConclusionsProjects involving a small number of participants can sustain engagement in ethical reflection among participants and participant-organisers. PLR that prioritises transparency, participant control of data and ongoing risk-to-benefit evaluation is compatible with the principles that underlie traditional ethical review of health research, while being appropriate for a context in which citizen scientists play the central role.

Project description:Importance:It is important that clinicians understand consequences of thyoridectomy on swallowing from the patient perspective to better care for this population. Objective:Using rigorous qualitative methodology, this study set out to characterize the effect of swallowing-related symptoms after thyroidectomy on patient quality of life and swallowing-related outcomes. Design, Setting, and Participants:Prospective, grounded theory analysis of interviews with 26 patients at 3 time points after thyroidectomy (2 weeks, 6 weeks, and 6 months). Data were collected from an ongoing clinical trial (NCT02138214), and outpatient interviews were conducted at the University of Wisconsin Hospital and Clinics. All participants were age 21 to 73 years with a diagnosis of papillary thyroid cancer without cervical or distant metastases and had undergone total thyroidectomy. Exclusion criteria were preexisting vocal fold abnormalities (eg, polyps, nodules), neurological conditions affecting the voice or swallowing ability, and/or development of new-onset vocal fold paresis or paralysis (lasting longer than 6 months) after total thyroidectomy. Interventions:Total thyroidectomy. Main Outcomes and Measures:Symptoms of dysphagia and related effects on quality of life elicited through grounded theory analysis of semistructured interviews with patients after thyroidectomy designed to foster an open-ended, patient-driven discussion. Results:Of the 26 patients included, 69% were women (n?=?18); mean (SD) age, 46.4 (14.1) years; mean (SD) tumor diameter 2.2 (1.4) cm. Two weeks after thyroidectomy, 80% of participants (n?=?20) reported at least 1 swallowing-related symptom when prompted by the interview cards; during the open interview, 53% of participants (n?=?14) volunteered discussion of swallowing-related symptoms unprompted. However, only 8% of participants in this study (n?=?2) qualified for a follow-up dysphagia evaluation, indicating that the majority of reported symptoms were subjective in nature. Six weeks and 6 months after thyroidectomy, 42% (n?=?11) and 17% (n?=?4) of participants, respectively, reported continued swallowing symptoms using the prompts; 12% (n?=?3) discussed symptoms without prompting cards at both time points. Conclusions and Relevance:Swallowing symptoms after thyroidectomy are underreported in the literature. This study revealed that as many as 80% of patients who have thyroidectomy may experience swallowing-related symptoms after surgery, and many develop compensatory strategies to manage or reduce the burden of these symptoms. Considering the large number of individuals who may experience subjective dysphagia, preoperative counseling should include education and management of such symptoms.

Dataset Information

Participant-Reported Benefits of Involvement in an Adaptive Sports Program: A Qualitative Study.

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Participant-Reported Benefits of Involvement in an Adaptive Sports Program: A Qualitative Study.

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