Perseverance in Search of Support: Insights from Siblings of Individuals with Intellectual Disabilities
Dr Debbie Kramer-Roy
Dr Tazeen Saeed Ali
Dr Dilshad Ashraf
Abstract
Objective: Siblings play crucial roles in each other’s lives. Sibling relationships play a central role in children's lives by providing companionship, nurturance, support, and learning opportunities. These relationships are long-lasting within families, especially when one sibling has an Intellectual Disability (ID). The qualitative study focuses on developing deeper insights into siblings' perceptions and descriptions of their relationships with their siblings who have an ID.
Design: The study used an exploratory descriptive-qualitative design. This allowed for an in-depth exploration of the breadth, complexity, and richness of the experiences and challenges faced by siblings living with an individual with an intellectual disability and the generation of extensive contextual information.
The interviews were conducted in the participant’s residence.
Methodology: The study's participants were families with children with ID. The families were recruited from one of the special children's schools in Karachi, Pakistan. After institutional ERC approval, the data was collected from the siblings who live with individuals with ID. The individual in-depth interviews using a semi-structured guide were conducted at the participant's home.
Result: The thematic analysis reveals the complex emotional and practical dynamics experienced by siblings of children with intellectual disabilities, including a deep sense of empathy and responsibility and occasional feelings of isolation and frustration. The key themes identified are 1) family dynamics and sibling relationships; 2) siblings' difficulties and disappointments; 3) the significance of familial support and coping mechanisms; and 4) advocacy and Future Planning.
Conclusion: The study concludes that siblings of ID children face diverse emotions and obstacles. They sense empathy and responsibility but also alienation and frustration. Siblings emphasised family support and self-care as essential. Safety and communication issues underline the need for family and societal understanding and assistance. Pakistan's health and social care experts must improve their approach to these families while considering societal perceptions. Use a family-wide strategy to prepare siblings for the demands of their intellectually disabled siblings and societal expectations. Helping siblings manage their relationships with ID family members through informal Social Support is stressed in this study.