Family and professional perspectives on the lived experience of children with a learning disability and behavioural needs

Kiernan, Joann (2013) Family and professional perspectives on the lived experience of children with a learning disability and behavioural needs. Doctoral thesis (PhD), Manchester Metropolitan University.

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Abstract

This thesis considers family and professional perspectives on the lived experience of children with a learning disability and behavioural needs. The literature suggests that this group of children experience an increased risk of exclusion from their peers and their community due to their complexity of need and lack of appropriate support. Twenty semi- structured interviews were conducted to gather data from parents and professionals involved in the support of children with a learning disability and behavioural needs. A phenomenological approach was adopted to consider the lived experience of children through perspectives of the participants. Interviews were transcribed verbatim and analysed using Attride-Stirling’s (2001) model of thematic analysis. A total of eight global themes were deduced from the findings. The parents’ data yielded four themes: finding our way; square services round needs; the price of behaviour; belonging. The four professional themes identified were: the behaviour of services; complexity of need; behavioural barriers; needing to know- knowing needs. The child’s experience of inclusion and exclusion ran through the findings as central tenets of the participant perspectives on lived experience. The study adds to the body of knowledge that considers the inclusion and integration of children with complex needs into mainstream and specialist provision. Perspectives on lived experience highlight current practice that can increase the vulnerability of children to the risk of exclusion from families, peers and ultimately their community. Recommendations call for proactive support to identify children in their early years at risk of experiencing exclusion due to their behavioural needs. Appropriate and effective provision will avoid the increased burden placed on families, and ultimately the state, of supporting children who remain vulnerable and at increased risk of exclusion from their communities.