Using Photovoice as a participatory method to identify and strategize community participation with people with intellectual and developmental disabilities

Abstract

Background: Adults with intellectual and developmental disabilities (I/DD) experience barriers to community participation, yet their insider experiences of environmental barriers and supports to participation are largely absent from the literature.

Aim/Objective: The aims of this research were to evaluate Photovoice as a participatory research method, examine environmental barriers and supports to community participation, and develop strategies to support self-determination and community participation for and with people with I/DD.

Material and method: This study utilized a participatory action research (PAR) approach in which participants used Photovoice during interviews and audits of participation environments to identify high interest participation activities and document supports and barriers in these environments. Data analysis utilized an iterative, participatory approach in which researchers and participants teamed up to select, contextualize, and codify the data. Thematic analyses involved both inductive and realist approaches.

Results/Findings: Participants included 146 community-dwelling adults with I/DD from three U.S. urban sites. We present a conceptual model of nine themes at microsystem, mesosystem, exosystem, macrosystem, and chronosystem environmental levels.

Conclusions: Using Photovoice as a participatory method to strategize community participation can help ground systems change efforts in the voices of people with I/DD.

Significance: By including people with I/DD in conversations that concern them, researchers and practitioners can support this population in ways that they find meaningful.

Keywords:

• Community participation
• barriers
• supports
• disability
• participatory action research
• Photovoice

Notes

Acknowledgements

We would like to thank the participants with I/DD, their support networks, and the communities that collaborated on this project including El Valor, ARC, People First, and SABE (Self Advocates Becoming Empowered) across many states.

Disclosure statement

The authors report no conflicts of interest.

Notes

1 People with intellectual and developmental disabilities is the preferred word choice of People First and SABE, two disability advocacy communities run by and for people with I/DD, so this term was used in this PAR research project with these communities. Additionally, in the United States, intellectual disability is defined as: ‘a disability characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 18 (or up to age 22 as determined by evaluator)’ [27–29].

2 Americans with Disabilities Act (ADA) complementary paratransit service is a door-to-door transportation service for people who are unable to use accessible fixed route transportation services due to disability.

Additional information

Funding

This research was funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), Administration for Community Living (ACL), Department of Health and Human Services (HHS), grant number 90RT5012-01-03 to the Rehabilitation Research and Training Center on Developmental Disabilities and Health. This research was also funded by NIDILRR under grant numbers 90DP0026 and 90DPAD0001. The writing of this article was also made possible with support from NIDILRR under grant number 90AR5023. The contents of this article do not necessarily represent the policy of the NIDILRR, ACL, or HHS, and you should not assume endorsement by the United States Federal Government.

Portions of this manuscript were presented at the American Occupational Therapy Association Annual Conference, Occupational Science Summit, and Chicago Disability Studies Conference. We would also like to thank Kate Caldwell for her feedback on early versions of the manuscript.