Involving Adult Siblings in the Lives of Individuals With Pervasive Support Needs: Attitudes of Healthcare Professionals.
N I Dorsman, J Luijkx, C P Van der Schans and 2 others
PMID 41088513WHAT IT FOUND
Healthcare professionals supporting adults with profound intellectual disabilities report lacking knowledge about siblings' preferences and having insufficient time for collaboration.
Most feel supported by colleagues but not by management, and only a minority view facilitating the transition of care from parents to siblings as part of their job.
Key findings
01While most professionals felt confident in their general collaboration skills, nearly half admitted lacking knowledge about what information siblings want, how they wish to be involved, or what activities they enjoy.
02Limited time and limited contact were the primary barriers reported, with professionals noting they often have no time outside client care for family communication and rely on their own time.
03Only about a quarter of the healthcare professionals considered it their job to support families in transferring roles from parents to siblings as parents age.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample size was small (60 participants), and the distribution across healthcare providers was unknown due to anonymity, so local organisational cultures may have skewed results. Response bias is possible, as professionals with a greater interest in collaborating with families may have been more motivated to complete the survey. Social desirability bias may have led participants to report more positive attitudes than they actually hold. The study did not distinguish between the roles siblings fulfil (e.g., formal legal representatives vs. informal friends), which may affect how professionals interact with them. The findings are specific to the Netherlands and may not generalise to healthcare systems in other countries.
Declared interests
The study was funded by the Netherlands Organization for Health Research and Development (ZonMw). The authors declared no conflicts of interest.
The easy way to misread this
Do not assume that because most professionals report positive attitudes towards sibling involvement, they have the time or organisational support to act on it. The study found that limited time and lack of management support were major barriers, and many professionals do not consider facilitating the transition of care from parents to siblings to be part of their job.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →