Transforming Their Journey by Listening to Their Voices: A Photovoice Study of Barriers and Facilitators to Physical Activity Among Rural Youth with Cerebral Palsy

Document Type

Article

Publication Date

2018

Publication Title

Developmental Medicine & Childhood Neurology

DOI

10.1111/dmcn.44_14018

ISSN

1469-8749

Abstract

Background and Objective(s): Young people with cerebral palsy (CP) face unique barriers to initiating and sustaining physical activity. The International Classification of Functioning, Disability and Health (ICF) indicates that environmental barriers can play a significant role mediating activities. In rural areas, youth with CP and their families face barriers that are unique. The purpose of this study was to explore barriers and facilitators to physical activity among youth with CP and their families.

Study Design: Participatory Action Research using Photovoice.

Study Participants & Setting: A total of 15 participants were purposefully sampled including youth with CP (age range 14y 10M–21y 0 m; 3 females, 4 males) and caregivers (n=8) in rural, southeast Georgia participated in this study. Youth participants included a variety of functional levels (GMFCS I‐IV).

Materials/Methods: Participants used photography to capture barriers and facilitators to participating in physical activity in their local community. Participants were given a minimum of 14 days to take pictures. After 14 days, the researchers reconvened the youth and parent participants, and used in‐depth interviews structured by Photovoice's SHOWeD method to review and contextualize the photographs. Furthermore, a set of interview techniques were customized to facilitate youth interviews and to mediate the child‐researcher power differential. After all in‐depth interviews were complete, the participating parents reconvened to review all contextualized photographs to identify an action plan to present to local community stakeholders. Transcriptions from all interviews and focus group were transcribed verbatim. Content analysis of interview and focus group transcripts was used to identify the themes that emerged. Photographs and accompanying text were presented to local stakeholders and an action plan to increase physical activity for young people with CP was created.

Results: Results provided insight into the day‐to‐day factors that made it easier or more difficult for children with CP to participate in physical activity. Factors were identified at multiple ecological levels and provided new insight into the CP experience. Common barriers to physical activity included a) inaccessible facilities and equipment; b) social isolation from a lack of inclusiveness; and c) the emotional stress experienced by caregivers as a result of reduced supports for their child. Facilitators included a) community‐based support for families and b) adaptive sports leagues.

Conclusions/Significance: Photovoice was a powerful technique for elucidating challenges faced by youth diagnosed with CP. The process provided children and their families a mechanism to illustrate the everyday realities of living with CP and provided the opportunity to reach community stakeholders to develop actions centered around the multifaceted levels of impacting a child's and their family's ability to participate in daily physical activity.

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