Ratti, Victoria; (2018) Exploring person-centred support in adults with intellectual disabilities and challenging behaviour supported by paid carers in the community. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Background: Deinstitutionalisation and the movement of people with intellectual disabilities (ID) to the community have seen the emergence of care philosophies aimed at tailoring services to individuals’ needs. Person-centred support has been widely advocated and considered synonymous of good care. It is useful to investigate if day-to-day support provided by paid carers in the community is person-centred. / Aims: 1. To explore person-centred support and choice in adults with ID and challenging behaviour. 2. To investigate correlates of person-centred support, including challenging behaviour. 3. To investigate whether the results of self-report questionnaires and direct- observations are comparable. / Methods: 1. Self-report measures of person-centred support typically used by staff supporting older adults with dementia were adapted for use by staff supporting adults with ID and challenging behaviour. A measure of choice availability was also updated. 2. A cross-sectional study of 109 paid carers supporting adults with mild to severe ID was conducted to address aims 1 and 2. 3. Naturalistic observations of eighteen participants with ID were conducted to complement the results of the cross-sectional study. Data was collected using momentary time-sampling and narrative descriptions. / Results: Paid carers reported high levels of person-centred support and choice availability for service-users. No significant associations were found between person-centred support and characteristics of the living environments, however choice availability was significantly higher in supported living compared to residential care homes and in living environments with fewer residents. Carers who reported higher levels of person-centred support experienced less subjective burden in their jobs. There was an association between choice and service-users’ adaptive behaviour. No association was found between person-centred support/choice and global challenging behaviour; stereotyped behaviour however was negatively associated with autonomy and carers’ knowledge of individuals with ID. The findings from the observations showed lower levels of person-centred support than those reported by paid carers, suggesting desirability effects in carers’ responses. Low levels of engagement in meaningful activities, assistance and contact from staff were observed, although there was much variability at the individual level. There were few instances of challenging behaviours and these mostly consisted of stereotyped/repetitive movements which were prevalent in disengaged participants. / Implications: The support for people with ID and challenging behaviour requires improvement but quality evaluation criteria adopted by inspectors and regulators may need to be reconsidered. Improvements in day-to-day support could reduce stereotyped behaviour but input from skilled professionals may be required for other types of challenging behaviour.

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