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A systematic review of quality of life measures for people with intellectual disabilities and challenging behaviours
- Authors:
- TOWNSEND-WHITE C., PHAM A.N.T., VASSOS M.V.
- Journal article citation:
- Journal of Intellectual Disability Research, 56(3), March 2012, pp.270-284.
- Publisher:
- Wiley
Six of the twenty-four quality of life instruments identified, were considered to be psychometrically sound and were assessed against 24 criteria developed from the consumer outcome measurement literature. None of the instruments were specifically developed for use with people with intellectual disability. One scale, the Multifaceted Lifestyle Satisfaction Scale, performed well in most respects but suffered from a lack of replication; a criticism applied to all of the instruments studied in detail. The need for further development and validation of quality of life measures for use with people who display challenging behaviour, or have intellectual disabilities, is emphasised.
Motivational correlates of physical activity in persons with an intellectual disability: a systematic literature review
- Authors:
- HUTZLER Y., KORSENSKY O.
- Journal article citation:
- Journal of Intellectual Disability Research, 54(9), September 2010, pp.767-786.
- Publisher:
- Wiley
This systematic review looks at the motivational correlates that both contribute to, and can be assumed to be effects of, participation in sport, recreation, or health-related physical activities in persons with intellectual disability (ID). Twenty-three articles, published between 1980 and 2009, satisfied the inclusion criteria, and were divided into four categories: (1) cross-sectional designs, (2) experimental prospective one-group designs, (3) longitudinal comparative intervention designs, and (4) qualitative designs. The quality of the intervention trials, eight studies with a total of 371 participants, was assessed using four different scales (CEBM, SORT, PEDro, and Cochrane). On average they demonstrated a moderate level of evidence. The authors discuss personal and environmental determinants of participation and possible barriers. It is concluded that both exercise and sport-related activities seem to contribute to well-being. Improved physical fitness and elevated skill levels gained during exercise and sport activities seemed to serve as mediators for increased perceptions of self-efficacy and social competence. Peer modelling, as well as video and audio reinforcement, were important ways of maintaining compliance with exercise programmes.
A systematic review of the qualitative evidence for the use of lifestyle planning in people with learning disabilities
- Authors:
- ROWE D., RUDKIN A.
- Journal article citation:
- Journal of Learning Disabilities for Nursing Health and Social Care, 3(3), 1999, pp.148-158.
Lifestyle planning (LP) for people with learning disabilities is largely supported by qualitative rather than quantitative research. LP is a time consuming and potentially resource-intensive area of practice which is becoming more prevalent in the UK. The authors present the first systematic review of the qualitative evidence base for the use of LP in people with learning disabilities. Explicitly person-centred approaches such as essential lifestyle planning are contrasted with more service-led methods such as individual programme planning. Concludes that current evidence base suggests that no form of LP has significantly better outcomes than any other form and that it is not clear if LP in general enhances outcomes. Ongoing use of person centred planning in particular is informed by ethical considerations and is evolving its structure and function.
‘Living in the community’ the pros and cons: a systematic literature review of the impact of deinstitutionalisation on people with intellectual and psychiatric disabilities
- Authors:
- BREDEWOLD Femmianne, HERMUS Margot, TRAPPENBURG Margo
- Journal article citation:
- Journal of Social Work, 20(1), 2020, pp.83-116.
- Publisher:
- Sage
Summary: How did deinstitutionalisation affect the lives of people with intellectual disabilities and people with a psychiatric background? This paper contains a systematic literature review on the consequences of deinstitutionalisation for the target groups, their social network and society at large. PubMed and Online Contents were searched from 2004 till February 2016. Inclusion criteria were (1) article describes (a) consequence(s) of deinstitutionalisation, (2) in Western countries and (3) the target group(s) include people with psychiatric or intellectual disabilities. Sixty-one papers were found and analysed to establish positive, negative or mixed results. Findings: The positive effects pertain to the quality of life of people with disabilities after deinstitutionalisation. They learned adaptive skills and receive better care. Negative effects relate to more criminal behaviour by the target groups, victimisation of the target groups and physical health issues. Life for the most severely afflicted people with disabilities deteriorated when they moved to smaller group homes in the community. Mixed effects were also found. It is not clear whether deinstitutionalisation leads to real inclusion in the community. It is equally unclear whether it is cheaper than large-scale institutional care. Only a few studies investigate the effects on family members but some show they are overburdened. Applications: Social workers catering for people with disabilities should pay attention to risks for their health and safety and keep an eye on family members. Those who are asked to advise on deinstitutionalisation should consider that this may not benefit the most severely afflicted. (Edited publisher abstract)
How to improve the quality of life of elderly people with intellectual disability: a systematic literature review of support strategies
- Authors:
- SCHEPENS Hadewych R. M. M., VAN PUYENBROECK Joris, MAES Bea
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(3), 2019, pp.483-521.
- Publisher:
- Wiley
Background: The increased life expectancy of people with intellectual disability intensifies the need for age‐specific support. Research on effects of support strategies on quality of life (QoL) of these people remains scattered. Methods: A systematic search of peer‐reviewed publications since 1995 was performed, with participants having intellectual disability and being aged ≥50 years. Studies include experimental, observational and exploratory designs, analysing links between support strategies and QoL outcomes. The present authors adopted a narrative approach. Results: The present authors found 73 articles, assessed their quality, thematically categorized interventions into 12 themes, and listed them with their stated relationships to QoL. Conclusions: The studies indicated the importance of funding, provision and organisation of services/personnel, education, and cooperation among different support systems. The provision of good housing or activities, support when these provisions change, provision of (mental) health care, dementia care and end‐of‐life care, life story work, future planning and support for (I)ADLs are crucial. (Edited publisher abstract)
The experience of social inclusion for people with intellectual disability within community recreational programs: a systematic review
- Authors:
- MERRELLS Jessica, BUCHANAN Angus J., WATERS Rebecca
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 43(4), 2018, pp.381-391.
- Publisher:
- Taylor and Francis
Background: Social inclusion is a vital domain in quality of life and is enhanced through recreational programmes. People with intellectual disability have been provided with fewer opportunities to participate in these groups, thus hindering social inclusion. Method: Five databases (CINAHL, Ovid, ProQuest, ScienceDirect, and Wiley Online Library) were electronically searched and narrowed using inclusion/exclusion criteria. The methodological quality was assessed using standard quality assessment criteria. Results: Out of 135 retrieved results, 12 articles were included. Data were predominantly collected using questionnaires, scales, and interviews. Ages of the people with intellectual disability ranged from 5 to 65 years, and the sample size ranged from 30 to 2,556 persons. Four key themes became apparent in the literature: (1) the impact of physical and social independence, (2) the amount of social interaction and participation, (3) the impact of culture and attitudes, and (4) the outcomes of social inclusion. Conclusions: Social inclusion and participation in leisure activities for people with intellectual disability increase with greater functional independence and positive community attitudes. This participation results in positive outcomes. People with an intellectual disability participate less in recreational programmes. Further research is needed regarding the experience from the person’s point of view. (Edited publisher abstract)
Individualised funding interventions to improve health and social care outcomes for people with a disability: a mixed-methods systematic review
- Authors:
- FLEMING Padraic, et al
- Journal article citation:
- Campbell Systematic Reviews, 15(1-2), 2019, p.e1008.
- Publisher:
- Wiley
This Campbell systematic review examines the effects of individualised funding on a range of health and social care outcomes. It also presents evidence on the experiences of people with a disability, their paid and unpaid supports and implementation successes and challenges from the perspective of both funding and support organisations. This study is a review of 73 studies of individualised funding for people with disabilities. These include four quantitative studies, 66 qualitative and three based on a mixed-methods design. The data refer to a 24-year period from 1992 to 2016, with data for 14,000 people. Studies were carried out in Europe, the US, Canada and Australia. Overall, the evidence suggests positive effects of individualised funding with respect to quality of life, client satisfaction and safety. There may also be fewer adverse effects. There is less evidence of impact for physical functioning, unmet need and cost effectiveness. The review finds no differences between approaches for the Adult Social Care Outcomes Toolkit (ASCOT), self-perceived health and community participation. Recipients particularly value: flexibility, improved self-image and self-belief; more value for money; community integration; freedom to choose who supports you; social opportunities; and needs-led support. Many people chose individualised funding due to previous negative experiences of traditional, segregated, group-orientated supports. Successful implementation is supported by strong, trusting and collaborative relationships in their support network with both paid and unpaid individuals. This facilitates processes such as information sourcing, staff recruitment, network building and support with administrative and management tasks. These relationships are strengthened by financial recognition for family and friends, appropriate rates of pay, a shift in power from agencies to the individual or avoidance of paternalistic behaviour. Challenges include long delays in accessing and receiving funds, which are compounded by overly complex and bureaucratic processes. There can be a general lack of clarity (e.g. allowable budget use) and inconsistent approaches to delivery as well as unmet information needs. Hidden costs or administrative charges can be a source of considerable concern and stress. Staff mention involvement of local support organisations, availability of a support network for the person with a disability and timely relevant training as factors supporting implementation. Staff also highlight logistical challenges in support needs in an individualised way including, for example, responding to individual expectations, and socio-demographic differences. (Edited publisher abstract)
Individualised funding interventions to improve health and social care outcomes for people with a disability: a mixed-methods systematic review
- Authors:
- FLEMING Padraic, et al
- Publisher:
- Campbell Collaboration
- Publication year:
- 2019
- Pagination:
- 145
- Place of publication:
- Oslo
This Campbell systematic review examines the effects of individualised funding on a range of health and social care outcomes. It also presents evidence on the experiences of people with a disability, their paid and unpaid supports and implementation successes and challenges from the perspective of both funding and support organisations. This study is a review of 73 studies of individualised funding for people with disabilities. These include four quantitative studies, 66 qualitative and three based on a mixed-methods design. The data refer to a 24-year period from 1992 to 2016, with data for 14,000 people. Studies were carried out in Europe, the US, Canada and Australia. Overall, the evidence suggests positive effects of individualised funding with respect to quality of life, client satisfaction and safety. There may also be fewer adverse effects. There is less evidence of impact for physical functioning, unmet need and cost effectiveness. The review finds no differences between approaches for the Adult Social Care Outcomes Toolkit (ASCOT), self-perceived health and community participation. Recipients particularly value: flexibility, improved self-image and self-belief; more value for money; community integration; freedom to choose who supports you; social opportunities; and needs-led support. Many people chose individualised funding due to previous negative experiences of traditional, segregated, group-orientated supports. Successful implementation is supported by strong, trusting and collaborative relationships in their support network with both paid and unpaid individuals. This facilitates processes such as information sourcing, staff recruitment, network building and support with administrative and management tasks. These relationships are strengthened by financial recognition for family and friends, appropriate rates of pay, a shift in power from agencies to the individual or avoidance of paternalistic behaviour. Challenges include long delays in accessing and receiving funds, which are compounded by overly complex and bureaucratic processes. There can be a general lack of clarity (e.g. allowable budget use) and inconsistent approaches to delivery as well as unmet information needs. Hidden costs or administrative charges can be a source of considerable concern and stress. Staff mention involvement of local support organisations, availability of a support network for the person with a disability and timely relevant training as factors supporting implementation. Staff also highlight logistical challenges in support needs in an individualised way including, for example, responding to individual expectations, and socio-demographic differences. (Edited publisher abstract)
Gaps in the evidence on improving social care outcomes: findings from a meta-review of systematic reviews
- Authors:
- DICKSON Kelly, et al
- Journal article citation:
- Health and Social Care in the Community, 25(4), 2017, p.1287–1303.
- Publisher:
- Wiley
Adult social care continues to be a central policy concern in the UK. The Adult Social Care Outcomes Framework (ASCOF) is a range of measures nationally available to drive forward improvement on outcomes and quality in local councils. While there is an emphasis on improving transparency, quality and outcomes, drawing on research evidence to achieve these aims is often difficult because the evidence is not easily identifiable, is disparate or of variable quality. The authors conducted a meta-review to analyse and summarise systematic review-level evidence on the impact of interventions on the four outcomes set out in the ASCOF: quality of life, delaying and reducing the need for services, satisfaction with services and safeguarding of vulnerable adults. This paper focuses on the availability of review-level evidence and the presence of significant gaps in this evidence base. A range of health and social care databases were searched, including MEDLINE, ASSIA and The Cochrane Library in January and February 2012. All systematic reviews evaluating the efficacy of social care interventions for improving ASCOF outcomes for older people, people with long-term conditions, mental health problems or physical and/or learning disabilities were eligible. Two reviewers independently screened systematic reviews for quality and relevance and extracted data; 43 systematic reviews were included, the majority of which examined the impact of interventions on quality of life (n = 34) and delaying and reducing the need for support (n = 25). Limited systematic review-level evidence was found regarding satisfaction with services and safeguarding. There were also significant gaps in relation to key social care interventions and population groups. Research priorities include addressing these gaps and the collation of data on interventions, outcomes and populations more closely related to social care. Overall, a more relevant, comprehensive and robust evidence base is required to support improvement of outcomes for recipients of adult social care. (Edited publisher abstract)