Support for family carers of children and young people with developmental disabilities and challenging behaviour: what stops it being helpful?
Parents see support as useless when access is hard, strategies fail, and staff lack behaviour know-how.
01Research in Context
What this study did
Lambrechts et al. (2009) sat down with 13 mums who raise children with intellectual disability and challenging behaviour.
The team asked open questions about the help families get and why it often feels useless.
Mothers described real-life moments when services failed, wasted time, or made life harder.
What they found
Parents said support is unhelpful when it is hard to reach, gives weak advice, or is run by staff who know little about behaviour.
One mum might drive an hour to a course that teaches strategies already proven useless at home.
Another mum said workers focused on her feelings but ignored her need for practical behaviour tools.
How this fits with other research
Houseworth et al. (2018) later asked the same questions to parents of autistic children and heard the same story: services feel disjointed and leave families isolated.
Douma et al. (2006) surveyed a larger group and found most parents never even get counselling, showing the problem starts with basic access.
Howard et al. (2023) now tests telehealth as a fix for access, but the core wish—family-centred, flexible help—remains unchanged since 2009.
Why it matters
If you write behaviour plans, remember parents judge help by how fast they can use it, not by how many hours you offer.
Check transport, cost, and staff skill before you schedule parent training.
Start each meeting with one question: “What would make today’s advice useful tonight?”
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02At a glance
03Original abstract
BACKGROUND: Many family carers find the support they receive in respect of their child's challenging behaviour unhelpful. This study sought to identify carer perceptions of the ways in which support is unhelpful and how it could be more helpful. METHODS: Thirteen mothers, caring for a child with intellectual disability and challenging behaviour, were interviewed. Parental perceptions and concerns regarding support received were investigated. Transcribed interviews were analysed using interpretive phenomenological analysis. RESULTS: Parents reported problems with generic disability services including accessing good services, obtaining relevant information, working relationships with professionals and issues with respite provision. Concerns were also expressed about challenging behaviour-specific provision including ineffective strategies being suggested, an apparent lack of expertise, insufficient input and their child's exclusion from services. CONCLUSIONS: More preventative approaches, more widespread adoption of effective behaviour management and improved partnership between professionals and families appear needed. Increasing family support may be ineffective if not accompanied by greater insight into the factors related to effectiveness and recognition of the role of informal support.
Journal of intellectual disability research : JIDR, 2009 · doi:10.1111/j.1365-2788.2009.01163.x