Effective Partnerships With Parents of Adults With Mild Intellectual Disabilities in Residential Care: Experiences of Support Staff.
Maria C den Boer, Sanne A H Giesbers, Noud Frielink and 1 others
PMID 41879181WHAT IT FOUND
Support staff say parents are vital to good care, but the person they support decides how much parents are involved.
Where service users wanted their parents kept out, staff could not partner with them, even when family involvement would have helped.
Key findings
01Staff described parents as the experts on their son or daughter, said they could not give the best possible care without the parents' knowledge, and valued them as people to share concerns with when the service user could not answer for themselves.
02When a service user did not want their parents told about or involved in their care, staff could not build a partnership with those parents. Some found this hardest when the service user's safety or well-being was at risk, or when problems would have carried on without family help. Their response was to talk with the service user to try to win consent, encourage them to tell their parents themselves, or consult colleagues, managers or psychologists.
03Staff and parents often disagreed about what good care looks like, especially over how much independence to allow, and these disagreements caused conflict and got in the way of partnership.
STILL TO COME
How it was doneWhat they found
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
Only 11 staff took part, all from four service providers in the centre and south of the Netherlands, and they volunteered after being identified by their employer, so their views may not represent support staff elsewhere. Only staff supporting adults with mild intellectual disabilities and no severe challenging behaviour were included, so the findings may not hold for people with other levels of disability or for those with challenging behaviour. The study reports only what staff said. No parents and no service users were interviewed, and no partnership was observed directly, so this is one side of the story told after the fact. Some staff characterised parents as difficult, and one said they preferred less parental involvement when parents had a disability or mental illness; these are staff accounts, not findings tested against parents' or service users' experience.
Declared interests
The study was funded by the Dutch Ministry of Health, Welfare and Sport (grant 329561). The authors declare no conflicts of interest.
The easy way to misread this
Do not read this as evidence that parents of adults with intellectual disabilities are over-involved, or that staff should limit how much parents are told. These are the views of 11 support staff only. Parents and the people they support were not interviewed, and no partnership was watched in practice.
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 →