Psychiatric care of children with autism spectrum disorder - What do their siblings think about it? A qualitative study.
Siblings left in the dark about treatment goals soon see themselves as future caregivers—give them the facts now.
01Research in Context
What this study did
Sibeoni et al. (2019) interviewed teenage brothers and sisters of autistic children in a day-hospital program.
They asked how the teens felt about the treatment their sibling was getting.
The teens spoke freely, and the team pulled out common themes from the transcripts.
What they found
Most teens said they did not understand the goals of the psychiatric care.
They trusted their parents' version of events because no one else explained things to them.
Many already pictured themselves as future helpers or guardians for their brother or sister.
How this fits with other research
Glugatch et al. (2021) show that siblings can learn play skills that boost interaction right away.
Jordan’s teens were never offered such training; they stayed confused and passive.
Li et al. (2025) found that adult siblings become strong advocates when they learn policy and planning skills.
Jordan’s teens were already thinking like future caregivers, but they lacked the information that Chak links to effective advocacy.
Together the papers form a timeline: confusion in early teens (Jordan), skills in middle childhood (Glugatch), and informed advocacy in adulthood (Chak).
Why it matters
You can close the information gap in two minutes. At intake, hand the sibling a one-page plain-language sheet that answers: What is this place? What will my brother do here? How long will it take? Add a kid-friendly visual timeline. This tiny step turns a puzzled teen into an informed teammate and may prevent later burnout.
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02At a glance
03Original abstract
The expectations and role of families in the care of children with autism spectrum disorder are increasingly important. Nonetheless, no study has thus far explored the perspectives of siblings about the care received by a brother or sister with this disorder. The objective of this study was to fill this gap in the literature. This multicentre qualitative study took place in France, where we conducted semi-structured interviews with adolescents who were older siblings of children receiving care in a day hospital for an autism spectrum disorder. Data collection by purposive sampling continued until we reached 'theoretical sufficiency', and data analysis was thematic. The study included 20 participants: 13 sisters and 7 brothers. Four themes emerged in the data analysis: (1) the treatment targets, (2) the treatment's perceived effectiveness, (3) the complex questions it raises and (4) the role of intrafamily relationships. Our results allowed us to report original aspects of the experience of siblings, in particular, their confusion with regard to the treatment, their difficulty in separating themselves from their parents' discourse and their assertion of their role as caregivers for their younger brothers and sisters.
Autism : the international journal of research and practice, 2019 · doi:10.1177/1362361317728435