Recollecti ng Adolescent Experiences of Individuals Having a Sibling with Down’s Syndrome: A Qualitati ve Study

Abstract

Adolescence is a crucial life stage marked by an individual’s transiti on 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 conditi on. Yet, this is an area unexplored in Sri Lankan scholarly research. The present study att empts to address this research gap by exploring adolescent experiences of having a sibling with DS; as recalled by adults. The study was conducted qualitati vely, uti lising semi-structured interviews. Data collected was analysed using themati c analysis. The sample consisted of six parti cipants who were adults, had a sibling with Down Syndrome, and were fl uent in English and/or Sinhala. Three main themes emerged addressing adolescent experiences att ributed to the DS sibling, in terms of; the nature of the sibling relati onship, family dynamics, challenges and coping with social support. Respecti ve subthemes highlight several details. Parents and siblings gradually adapted to the individual with DS, resulti ng in close familial relati onships. Parti cipants also illustrated how the sibling relati onship shaped them as individuals. Parental diff erenti al treatment and future caregiving responsibiliti es were expressed as challenging, along with societal discriminati on and sti gmati zati on. However, social support through extended family and peers helped cope with such challenges. Conclusively, adolescent experiences of having a sibling with DS consti tute both favourable and challenging aspects, infl uenced by many individual-specifi c and environmental elements.