Recollecting Adolescent Experiences of Individuals Having a Sibling with Down’s Syndrome: A Qualitative Study

Adolescence is a crucial life stage marked by an individual’s transition into adulthood. Contrary to those with typically developing siblings, individuals who have a sibling with Down Syndrome (DS) follow a unique trajectory of life experiences associated with their sibling’s condition. Yet, this is an area unexplored in Sri Lankan scholarly research. The present study attempts to address this research gap by exploring adolescent experiences of having a sibling with DS; as recalled by adults. The study was conducted qualitatively, utilising semi-structured interviews. Data collected was analysed using thematic analysis. The sample consisted of six participants who were adults, had a sibling with Down Syndrome, and were fluent in English and/or Sinhala. Three main themes emerged addressing adolescent experiences attributed to the DS sibling, in terms of; the nature of the sibling relationship, family dynamics, challenges and coping with social support. Respective sub- themes highlight several details. Parents and siblings gradually adapted to the individual with DS, resulting in close familial relationships. Participants also illustrated how the sibling relationship shaped them as individuals. Parental differential treatment and future caregiving responsibilities were expressed as challenging, along with societal discrimination and stigmatization. However, social support through extended family and peers helped cope with such challenges. Conclusively, adolescent experiences of having a sibling with DS constitute both favourable and challenging aspects, influenced by many individual-specific and environmental elements. Keywords: Siblings; Down Syndrome; Adolescence