Narrative from Adult Siblings of Individuals with Intellectual and Developmental Disabilities: A Qualitative Study Using Photovoice

Background and Purpose: Siblings of people with intellectual and developmental disabilities (IDD) have unique experiences throughout their lives. They often get deeply involved in the lives of their sibling with IDD by providing lifelong support and linking them to societal resources as they grow up alongside them. Their experiences, however, have been mostly understood based on their caregiving role, rather than as individuals. Photovoice, a participatory action research method, can aid in understanding someone’s world through photographs they take, emphasizing their expertise in their experiences. This study aimed to generate a holistic understanding of lived experiences growing up with a sibling with IDD using photovoice.

Methods: Using a purposive sampling technique, seven adult siblings of individuals with IDD were recruited. Participants were all women and their ages ranged from 22 to 29 years old. All participants engaged in five weekly sessions of photovoice, including an orientation session for theme selection, photo-taking on participant-driven themes, four weekly group-generated discussion sessions in which they shared their photos, and dissemination of project results. Participants were asked to take and submit two photos that best represented their experiences related to the theme, then share their stories and the meaning behind the photos in a group discussion. Thematic analysis was used to identify common themes in participants’ photos and group discussions.

Results: Thirteen subthemes related to four primary themes selected by the participants highlighted their experiences: (a) impacts of having a sibling with IDD in my life (transforming my career path, limiting social relationships based on how others treat people with disabilities, and developing a unique identity); (b) a greater responsibility placed on nondisabled sisters with IDD (being unable to fully enjoy my life, feeling unable to find marriage with someone who truly understands my situation, and fearing the burden of caring for my sibling after the death of our parents); (c) realizing I am not OK and changes since then (having my needs are ignored in family relationships, feeling that I am being used to sacrifice my life, wanting to focus on myself, and reframing my experience positively); and (d) finding my role in protecting myself and fulfilling my responsibilities (having my own space while distancing from my sibling with IDD, being a companion rather than in a one-sided relationship, helping my sibling connect with society, and speaking out for people with IDD).

Conclusion: This study highlights the importance of understanding the experiences of nondisabled people who support a sibling with IDD. The findings of this study shed light on the significant impact of having a sibling with IDD on individuals’ personal and professional life and life perspectives. Although siblings of individuals with IDD face pressure from the responsibilities of caregiving, they described growth and deep reflection on their identities, subsequent shifts in perspectives, and finding a balance between self-care and fulfilling responsibilities to keep their love for their sibling. Social work professionals should acknowledge their challenges and growth and help them find balance in their life and supporting role for their sibling.