Experiences of having a sibling with autism spectrum disorder: a qualitative systematic review
TL;DR
Siblings of people with ASD need to develop an understanding of the disability in order to accept their siblings, and professional services that address the specific needs of neurotypical siblings throughout their life should be developed.
Abstract
Objective: The aim of this systematic review was to explore the experiences of neurotypical individuals who have a sibling with autism spectrum disorder (ASD). Introduction: The presence of a child with ASD significantly impacts the life and functioning of the entire family. Support is typically associated with individuals with ASD and their parents, yet the needs of siblings of these individuals are often overlooked. Being a sibling of a person with ASD is linked to various challenges and complex situations that accompany them throughout their lives, influencing their health, personal development, and social integration. Eligibility criteria: Qualitative studies involving neurotypical siblings of individuals with ASD who describe their experiences were eligible for inclusion. There were no limitations regarding age, gender, sex, or length of relationship with the sibling. We considered studies from all countries and contexts. Methods: This study was conducted according to JBI methodology for qualitative reviews. A 3-step search strategy was used to find published and unpublished studies from the following sources: MEDLINE, CINAHL, APA PsycINFO, Scopus, SocINDEX, Web of Science Core Collection, Embase, ERIC, ProQuest Dissertations and Theses, Open Dissertations, and Google Scholar (first 100 records). Screening, critical appraisal, data extraction, and data synthesis were conducted by 2 reviewers independently. Results: As a result of the search, 7445 records were identified. After removal of duplicates and ineligible records, full-text screening and methodological quality assessment led to the inclusion of 34 studies that met the eligibility criteria. The synthesis of the results led to the identification of 3 synthesized findings, based on 13 thematic categories, including 289 findings. The overall confidence in the findings was moderate for 2 synthetized findings and high for 1. The first synthesized finding focused on siblings’ evolving understanding, sources of information, and acceptance of ASD, as well as broader societal awareness. The second finding addressed the direct impact on sibling identity and lived experiences, encompassing both positive aspects and emotional burdens, alongside caregiving roles and challenging behaviors. The third finding covered unmet support needs, family dynamics, coping strategies, and future perspectives regarding lifelong care demands. Conclusions: Siblings of people with ASD need to develop an understanding of the disability in order to accept their siblings. They wish for a better understanding of ASD in society. In their relationships, neurotypical siblings experience moments of happiness and love as well as challenging situations caused by their siblings’ disability, and these experiences influence their identity; their private, family, and social lives; and impact their future choices. Neurotypical siblings may have a need for more support, both formal and informal. Practitioners working with individuals with ASD should consider including siblings in interventions whenever appropriate. Professional services that address the specific needs of neurotypical siblings throughout their life should be developed. Because of a low availability of research outside North America and Europe, transferability of these findings may be low considering the differences in sociocultural context. Supplemental digital content: A Czech-language version of the abstract is available at: https://links.lww.com/SRX/A198.