Short report: Siblings of children with neurodevelopmental disorders, a phenomenological perspective on parental perception

Res Dev Disabil. 2024 Jan:144:104654. doi: 10.1016/j.ridd.2023.104654. Epub 2023 Dec 14.

Abstract

Background: Siblings, typically developing brothers and sisters of children with neurodevelopmental disorders (NDD), are at risk for long-term psychosocial difficulties.

Objective: The present study aims at obtaining an in-depth insight on the lived experience of siblings of children with NDD through their parents' perspective.

Methods: Seven mothers and three fathers who signed up their sibling children (12-15 years) to a peer-support intervention participated in a semi-structured videoconference interview according to the Interpretative Phenomenological Analysis (IPA) qualitative approach. Interviews were conducted by trained personnel and independently coded.

Results: Thematic analysis highlighted three core themes and twelve sub-themes: "The complexity of the fraternal relationship" (three sub-themes), "Growing up with diversity" (six sub-themes), and "Me as a sibling" (three sub-themes).

Conclusions: The study provides insight on parents' perception of the lived experience of their sibling children, thus spreading awareness on the everyday difficulties families with a child with NDD may encounter.

What this paper adds: The present study contributes to the scarce literature on the lived experience of siblings of children with NDD, and notably it is one of the few qualitative studies on the topic which makes use of an IPA interviewing style. This methodological choice allowed for an in-depth understanding of siblings' strengths and struggles as perceived by their own parents, and of how their brother/sister's condition impacted on their family role, socio-emotional development and personality. Recounting siblings' experiences contributes in spreading awareness on the everyday difficulties siblings and their families face when cohabitating with a child with NDD.

Keywords: Educational intervention; Interpretive phenomenological analysis; Neurodevelopmental disorder; Parent; Peer-support; Qualitative methods; Siblings.

MeSH terms

  • Adaptation, Psychological
  • Child
  • Female
  • Humans
  • Male
  • Mothers
  • Neurodevelopmental Disorders*
  • Perception
  • Sibling Relations
  • Siblings* / psychology