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 utilised 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 utilised an iterative, participatory approach in which researchers and participants teamed up to select, contextualise, 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.

What is and isn’t working: Factors involved in sustaining community‐based health and participation initiatives for people ageing with intellectual and developmental disabilities

“…Photovoice with observation of participants was chosen as these techniques are shown to be accessible research methods to meaningfully engage people with I/DD in the research process (Aldridge, 2007;Heffron, Spassiani, Angell, & Hammel, 2018;Jurkowski, 2008). …”

Revisiting Photovoice: Perceptions of Dementia Among Researchers With Intellectual Disability

“…The reported benefits of photovoice methodology identified through the scoping review were diverse. Photo-voice was framed as enabling a more active collaboration between researcher and participants than more traditional research would have afforded (Heffron et al, 2018). Concepts of participant “empowerment” were also widely documented although the term was not always explained (Ataie, 2014; Bossler, 2016; Brake et al, 2012; Dorozenko et al, 2015; Guerra et al, 2013; Overmars-Marx et al, 2018; Povee et al, 2014; Walton et al, 2012; Weiss et al, 2017).…”

“…Numerous challenges were reported which suggested a need for a flexible and adapted approach. This included difficulties in obtaining information or reflections from participants (Booth & Booth, 2003), obtaining informed consent of people who appeared in the photographs (Cardell, 2015; Dorozenko et al, 2015; Tajuria et al, 2017; Weiss et al, 2017), and communication difficulties (Cluley, 2017; Heffron et al, 2018; Tajuria et al, 2017). Other photovoice challenges included camera management (Evans et al, 2016; Genoe & Dupuis, 2014) and difficulties for participants in understanding some concepts of the research itself (Tajuria et al, 2017).…”

Using photovoice with people with intellectual disability to illuminate definitions of health and factors influencing participation in health promotion

“…In addition, the preliminary analysis revealed that the use of photographic data added depth and complexity to participant descriptions of health in comparison with narrative descriptions alone (St. John et al, 2019). Heffron et al (2018) demonstrated that photovoice can be used to effectively illuminate the barriers to community participation experienced for adults with intellectual disability. It is unclear if the barriers identified in Heffron et al (2018) apply directly to access to and participation in health-promoting activities and further exploration of health-specific barriers is warranted.…”

“…Heffron et al (2018) demonstrated that photovoice can be used to effectively illuminate the barriers to community participation experienced for adults with intellectual disability. It is unclear if the barriers identified in Heffron et al (2018) apply directly to access to and participation in health-promoting activities and further exploration of health-specific barriers is warranted. A detailed understanding of how people with intellectual disability understand health, participate in health-promoting activities and their access to health-promoting activities may support the development of health promotion programming and guide interventions to address barriers.…”