Evaluating quality of life in adults with profound learning difficulties resettled from hospital to supported living in the community

Sines, David; Hogard, Elaine; Ellis, Roger

doi:10.1177/1744629512463840

Cited by 14 publications

(13 citation statements)

References 24 publications

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“…In this study, 62% of adults and 54% of children had learning disabilities. The presence of learning disabilities is another comorbidity which can inversely affect an individual's quality of life (23). However, children and adults without learning disabilities also reported a poorer quality of life compared to the healthy UK population.…”

Section: Discussionmentioning

confidence: 99%

Quality of life in patients with Tuberous Sclerosis Complex (TSC)

Amin

Mallick²,

Lux³

et al. 2019

European Journal of Paediatric Neurology

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Background: The quality of life (QoL) of patients with Tuberous Sclerosis Complex (TSC) has not been studied before. We aimed to investigate the impact of the disease on QoL. We studied the QoL of 91 TSC patients who have attended the Bath TSC clinic, UK over 6 months. QoL was evaluated using the PedsQL for children, and SF-36 for adults. Results: Impaired QoL is found in all patients with TSC regardless of the presence of epilepsy and learning disabilities (LD). Total mean self-reported score for children was 71 out of 100, compared to a UK norm of 84, p<0.000. The proxy mean score was 48, (UK norm 85, p<0.000). Physical Functioning score for adults with TSC was 70, compared to a UK norm of 94, p<0.000. The Social Functioning score for adults with TSC was 71, (UK norm 88, p<0.000). Conclusions: Impaired QoL is found in all patients with TSC regardless of the presence of epilepsy and learning disabilities. The psychosocial domain is most affected. The quality of life of children with TSC is lower than children who suffer from asthma, diabetes, cancer and inflammatory bowel disease. To improve health related quality of life in TSC, a focus on patient's physical health, educational performances, and overall quality of life is crucial. In order to achieve this, coordinated medical care across disciplines, and psychosocial and social support is necessary.

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Section: Discussionmentioning

confidence: 99%

Quality of life in patients with Tuberous Sclerosis Complex (TSC)

Amin

Mallick²,

Lux³

et al. 2019

European Journal of Paediatric Neurology

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“…A larger scale study was carried out locally when a specialist hospital campus closed and quality of life for the group being resettled was evaluated (Sines et al, 2012). The group of service users had characteristics similar to the group of six in this study.…”

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confidence: 93%

Does supported living work for people with severe intellectual disabilities?

Marlow¹,

Walker²

2015

Advances in Mental Health and Intellectual Disabilities

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Purpose – The purpose of this paper is to look at whether a move to a supported living model of care from traditional residential group homes could improve the quality of life for those with a severe intellectual disability and other challenging needs. Design/methodology/approach – Six men with severe intellectual disabilities moved from two residential homes into new-build individual flats. Their quality of life was measured using a battery of assessments looking at; environment, relationships, community participation, interactions, mood interest and pleasure, activities, physical health and challenging behaviour. These measures were taken before the move, immediately after and six months after the move. The views of staff and family carers were also assessed at each stage. Findings – The move had a positive effect on the tenants in that it caused an improvement in their mood and a decrease in their challenging behaviours. Further improvements could be made in the tenant’s quality of life by introducing more activities. The initial concerns of family members about the move decreased over time. However staff found the changes to their working practices stressful. Research limitations/implications – The study was a small scale one because of the small number of tenants. The tenants were unable to express their own views because of their limited communication abilities so a combination of direct observation and indirect measures were used. Practical implications – In the light of the Winterbourne view report by Stephen Bubb this study looks at the impact on quality of life of a move to supported living for a group of people with complex and challenging needs who might otherwise be placed in an out of borough placement similar to Winterbourne view. Social implications – The study also looks at the impact of such a move on the family members of the individuals and on the staff who had to change their working practices to adapt to both a new working environment and model of care. Originality/value – This study also looks at the impact of a model of supported living for people with severe intellectual disabilities and complex needs rather than those with mild intellectual disabilities. This is particularly important in the post Winterbourne view climate when the authors need to look carefully at positive alternative models of care for these individuals.

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“…One such study was the evaluation of the resettlement of 36 service users from Orchard Hill Hospital to supported housing and residential care in the community and its impact on their quality of life is described in Sines et al (2012). They found an overall improvement in quality life over an 18-month-period comparing life in the hospital with life in supported housing or residential care.…”

Section: Introductionmentioning

confidence: 99%

“…However, the quality of life tool that had been applied in the Orchard Hill study (Sines et al, 2012) had focused on indicators in seven domains representing quality of life, but not specifically on the possible negative effects and hence risks of resettlement and their management. It was possible therefore that the service users might have demonstrated an improved quality of life but nevertheless be at risk in certain respects.…”

Section: Introductionmentioning

confidence: 99%

Resettlement of individuals with learning disabilities into community care

Ellis

Hogard

Sines

2013

J Intellect Disabil

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This article describes a risk audit carried out on the support provided for 36 people with profound learning disabilities who had been resettled from hospital care to supported housing. The risks were those factors identified in the literature as associated with deleterious effects on quality of life. The audit was carried out with a specially designed tool that covered 24 possible risks and involved a support worker familiar with the service user choosing the most appropriate statement regarding each risk. Their judgements were verified by care managers and social needs assessors. Whilst one or more risks were identified for 32 of the 36 service users, the overall result showed relatively low risks for the group as a whole with 62 incidences (7%) from a possible 864, which nevertheless highlighted several areas that needed attention. The results of the audit have led to action plans for the provision and for the individual service users for whom risks were identified.

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Evaluating quality of life in adults with profound learning difficulties resettled from hospital to supported living in the community

Cited by 14 publications

References 24 publications

Quality of life in patients with Tuberous Sclerosis Complex (TSC)

Quality of life in patients with Tuberous Sclerosis Complex (TSC)

Does supported living work for people with severe intellectual disabilities?

Resettlement of individuals with learning disabilities into community care

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