Date Presented 04/06/19
Individuals with ID experience limited autonomy in occupational engagement impacting their health promoting occupations. Photovoice was used to allow individuals with ID to capture their lived experience of health, occupational participation, and barriers to participation. Understanding the perspective of individuals with ID will contribute to the development of novel health promotion programing.
Primary Author and Speaker: Brittany St. John
Additional Authors and Speakers: Karla Ausderau, Holly Romaniak, Elisabeth Hladik
PURPOSE: Individuals with intellectual disability (ID) experience significant health disparities for both health and social participation. Disparities often result in increased prevalence of chronic disease, decreased life expectancy, and social isolation. Individuals in the general population tend to have volitional control of much of their occupational engagement, whereas those with with ID have significantly restricted choice in their daily lives. Choice is often limited and directed by staff or caregiving support. Current literature has yet to explore the lived experiences of individuals with ID to identify perceived factors influencing their health or access to health promoting occupations. The purpose of this study is to 1) identify how individuals with ID define and understand their own health and 2) how they describe their participation in health promoting occupations including potential barriers to participation.
DESIGN: This study uses a participatory action Photovoice method with 10 individuals with ID. All participants were recruited from community recreation events and through community organizations such as Special Olympics.
METHODS: An adapted photovice method was used to meet the needs of participants. Ten participants with ID completed between 4 and 6 sessions including a Photovoice orientation, 2-4 photo collection sessions, an individual interview, and a focus group that included collective photo sharing. Research team members accompanied participants on photo collections sessions to provide assistance with technology, answer questions, and provide any additional support necessary. The principal investigator facilitated all training sessions and focus groups. Member checking of the results was completed with participants at the conclusion of the analysis.
RESULTS: Three themes were identified using photos, personal narratives, and focus group data. Personal Identity of Health captured how participants repeatedly defined themselves as healthy. Nutrition captured participants communication around traditional health knowledge including the importance of diet and hydration. Finally, Meaningful Occupation encompassed participants’ descriptions of their participation in health-promoting occupations. The meaning of an activity was central to its determination as a health-promoting occupation. All participants described their participation in a wide variety of health-promoting occupations further defining characteristics of the Meaningful Occupation theme including responsibility, environment, physical activity, social participation, and enjoyment.
CONCLUSION: Participants definitions of health were strengths-based and occupationally focused. Contrary to our understanding of health for individuals with ID, all participants described themselves as being “healthy.” A core component of their definitions of health was their occupational participation in activities with meaning. Participants’ perspectives highlighted the importance of autonomy and meaningful participation in a variety of occupations as central to health for individuals with ID. Practitioners should work to promote and scaffold occupational autonomy for individuals with ID to support participation in chosen health-promoting occupations. Furthermore, current research demonstrates the need for health promotion for people with ID yet lacks the insight into individuals’ perspectives. The findings of this study support the need to develop skilled groups of diverse stakeholders (e.g. individuals with ID, paid and non-paid caregivers, and health care providers) to expand understandings of health for individuals with ID and ensure the development of future interventions and programming adequately meets the needs of individuals with ID.
References
Arvidsson P, Granlund M, Thyberg M. Factors related to self-rated participation in adolescents and adults with mild intellectual disability - a systematic literature review. J. Appl. Res. Intellect. Disabil. 2008;21:277-291.
Krahn, G. L., & Fox, M. H. (2014). Health Disparities of Adults with Intellectual Disabilities: What Do We Know? What Do We Do? Journal of Applied Research in Intellectual Disabilities, 27(5), 431-446. https://doi.org/10.1111/jar.12067
Tichá R, Lakin KC, Larson SA, et al. Correlates of everyday choice and support-related choice for 8,892 randomly sampled adults with intellectual and developmental disabilities in 19 states. Intellect. Dev. Disabil. 2012;50:486-504.
