A Study on the Life Experiences of Adolescents Who Grew up with Younger Siblings with Developmental Disabilities: Focusing on Phenomenological Analysis Methods

Abstract

This study aims to explore specific life experiences and what it means to “live as a sibling of a disabled person”, by focusing on the brothers and sisters of persons with disabilities; this is a cohort that has been relatively marginalized in the field of welfare for the disabled. To this end, the author conducted 1:1 in-depth interviews with four adolescents who grew up with younger siblings who have developmental disabilities, and analyzed the meaning underlying their life experiences through phenomenological research methods. As a result, a total of five core themes of those life experiences were identified: (1) the birth of a disabled younger sibling, wherein their trials began; (2) surviving differentiation within the family; (3) ambivalence toward parents; (4) adolescence, with resurfaced psychological conflicts and relieving emotions; and (5) a future to be planned around a life of coexisting with disabled siblings. This study aims to provide basic data for social welfare intervention through an illuminating and deeper understanding of the lives of siblings of the developmentally disabled who require a high level of care.

“Ele é normal”: considerações fenomenológicas da percepção da criança/adolescente do irmão com deficiência

“…Pesquisa identificou que os irmãos mais velhos de crianças com deficiência possuem dificuldade de conversar com pais sobre a condição existencial do irmão, dificultando sua compreensão sobre a situação dele, bem como sobre a necessidade de (re)organização do seu modo de ser-no-mundo (19) .…”

“He is normal”: phenomenological considerations of child/adolescent’s perception of the disabled sibling

“…Research has identified that older siblings of disabled children find it difficult to talk to parents about their sibling's existential condition, making it difficult for them to understand their situation, as well as the need to (re)organize their way of being-in-the-world (19) .…”