When a Sibling Has Disability: Exploring the Experiences of Youth and Young Adults Through Photovoice

The relationship between siblings has a significant impact on development in childhood and lasts throughout lifetime. Not only are the well siblings overlooked by researchers, they are also left out of therapy and therapeutic interventions by healthcare professionals and other family members (Abrams, 2009; Arnold, Heller, & Kramer, 2012; Schuntermann, 2009).

A qualitative research method, photovoice, was used as a participatory tool to document how the experience of having a sibling with developmental disability influenced the lives of well siblings. Photography can be used in qualitative research because it has been considered a type of visual language with its own form of semantics, syntax, and contextual structure (Wang & Burris, 1997). Data were collected from three cohorts: young children, adolescent, and young adult well siblings. A total of ten participants photographed their everyday life and discussed the pictures with the researcher and then with the other members of their cohort. The researchers then analyzed the data from all three cohorts (including individual narrative of photographs taken, focus group discussions using participant-selected photographs to stimulate conversation, and content of photographs) to develop themes that represent the perspectives of the participants.

Six major themes arose, some with subcategories: (1) Normalcy (achieving normalcy and everyday normalcy), (2) Challenges (annoying challenges, significant challenges, overcoming challenges, and other challenges), (3) Support (support for the sibling with disability and support for the participant and their family); (4) Learned, (5) Similarities, and (6) Happiness. Each major theme had contributions from six to nine of the ten participants. None of the themes had quotes from all ten of the participants. All of the major themes and sub-themes had contributions from participants of at least two different cohorts. Analysis of the data of the cohorts found that the most commonly discussed theme was Normalcy.The photographs were sorted into the following groups: (1) Pictures of just the sibling with disability, 124; (2) Pictures the participants with their sibling with disability, 15; (3) Pictures of the participant (alone or with friends but without their sibling with disability), 40; (4) Family, 75; (5) Pictures of the sibling with disability with non-family members, 25; Pictures of non-family members, 6; (7) Pets, 15; (8) Objects, 44. All of the participants shared pictures of just their sibling with disability.

The findings of this study suggest that the relationship between well siblings and their siblings with disability is significant, as is the connection between two typical siblings, in influencing the development of both siblings from a young age well into early adulthood. This study found that there were many similarities in the experiences of the well siblings to those of typical siblings but there are also many differences and significant challenges that well siblings face that are not present in typical sibling relationships. This study also supports the inclusion of well siblings as a focus of occupational therapy intervention and not just as an adjunct to their siblings’ therapy due to the potential for significant challenges within their daily life and familial relationships. By increasing the occupational therapy scope of practice to include well siblings, the field would be supporting their goals of holistic practice that will lead to improved outcomes.

References

Arnold, C., Heller, T., & Kramer, J. (2012). Support Needs of Siblings of People with Developmental Disabilities. Intellectual & Developmental Disabilities, 50(5), 373-382, 10p. doi:10.1352/1934-9556-50.5.373

Wang, C., & Burris, M.A. (1997). Photovoice: Concept, Methodology, and Use for Participatory Needs Assessment. Health Education & Behavior, 24(3), 369.