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Support for family carers of children and young people with developmental disabilities and challenging behaviour: what stops it being helpful?
Author(s) -
Wodehouse G.,
McGill P.
Publication year - 2009
Publication title -
journal of intellectual disability research
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.941
H-Index - 104
eISSN - 1365-2788
pISSN - 0964-2633
DOI - 10.1111/j.1365-2788.2009.01163.x
Subject(s) - respite care , general partnership , challenging behaviour , perception , psychology , interpretative phenomenological analysis , intellectual disability , family support , developmental psychology , qualitative research , nursing , medicine , psychiatry , social science , finance , neuroscience , sociology , economics , physical therapy
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.