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Improving quality of life outcomes in supported accommodation for people with intellectual disability: what makes a difference?
- Authors:
- BIGBY Christine, BEADLE-BROWN Julie
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(2), 2018, pp.e182-e200.
- Publisher:
- Wiley
Background: The quality of life (QOL) of people with intellectual disability living in supported accommodation services is variable, influenced by many possible factors. Various frameworks have attempted to identify these factors without assigning value, direction of influence or relative impact on outcomes. Methods: A realist review of the literature aimed to expose different propositions about variables influencing QOL outcomes and review the strength of supporting evidence for these, to identify their relative influence. Evidence was reviewed for and against each of five clusters. Results: Evidence was strongest for the presence of staff practices (use of Active Support), front-line management practice (use of practice leadership), culture (enabling and motivating), human resources policies and practice (that support front-line leaders and recruitment of staff with the right values), adequate resources, and small, dispersed and homelike settings. Conclusions: The evidence informs policy and practice but in some clusters remains limited, warranting further research which measures outcomes on all QOL domains. (Publisher abstract)
Individual planning: an exploration of the link between quality of plan and quality of life
- Authors:
- ADAMS Lynn, MANSELL Jim, BEADLE-BROWN Julie
- Journal article citation:
- British Journal of Learning Disabilities, 34(2), June 2006, pp.68-76.
- Publisher:
- Wiley
In this study individual plans for people with intellectual disabilities were evaluated for quality and effectiveness in improving quality of life. Quality was assessed by rating whether goals were relevant, observable, age appropriate, necessary, timetabled, developmental, measurable, realistic, assigned to staff and improving at least one of O'Brien's five service accomplishments. Effectiveness was assessed by examining quality of life outcomes for participants with and without individual plans rated as higher quality. No significant difference in outcomes associated with having a higher quality individual plan was found. Findings present a challenge to current expectations that presence and quality of individual plan goals are associated with improved outcomes. Written individual plan goals may not be directly correlated with actual practice, and further research is required to examine this.
The informal culture of a direct care staff team supporting people with intellectual disabilities who present with behaviours that challenge: commentary
- Author:
- BEADLE-BROWN Julie
- Journal article citation:
- Tizard Learning Disability Review, 26(3), 2021, pp.169-173.
- Publisher:
- Emerald
Design/methodology/approach: It provides a brief narrative review of the literature on the factors that determine the quality of life of people with intellectual disabilities, including the impact of culture. Findings: Key to ensuring good quality of life outcomes is support that is facilitative, enabling and empowering which can compensate for severity of disability and improve people’s experiences. This approach is called Active Support. Improving quality of life is a key part of preventing and responding to behaviours that challenge. Culture is an important factor in ensuring staff are motivated to work in such ways but is likely to be intertwined with many other factors. Originality/value: This paper summarises the key literature on what is needed to improve outcomes for people with intellectual disabilities. It introduces the importance of exploring how the different dimensions of culture interact and how culture, practice, processes and structures might work in a much more complex and intertwined fashion than previously conceptualised. (Edited publisher abstract)
Outcomes and costs of skilled support for people with severe or profound intellectual disability and complex needs
- Authors:
- BEADLE-BROWN Julie, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(1), 2021, pp.42-54.
- Publisher:
- Wiley
Background: With increasing reductions in funding for social care across many countries, the need to ensure that resources are used to best effect is becoming increasingly important, in particular for those with severe and complex needs. Methods: In order to explore the outcomes and costs of skilled support for this group of people, quality of life was assessed for 110 people in 35 services in England. Information on costs was also collected. Results: People who received consistently good active support experienced better outcomes in terms of several quality of life domains. Good support did not require significantly more staff time, and there was no evidence of higher total costs for those receiving good support. Conclusions: The inclusion of active support in government guidance and local commissioning practices related to people with severe intellectual disabilities is likely to improve user outcomes. Observation should be an important element in measuring service quality. (Edited publisher abstract)
A valued life: developing person-centred approaches so people can be more included
- Authors:
- ASHMAN Bev, BEADLE-BROWN Julie
- Publisher:
- United Response
- Publication year:
- 2006
- Pagination:
- 20p.
- Place of publication:
- London
This report describes a project by United Response in partnership with the Tizard Centre at the University of Kent to evaluate the impact that person-centred approaches are having on the lives of people with learning disabilities. This extensive observational study looked at the needs and characteristics of people supported by United Response, looking at the extent to which these people engaged in meaningful activities and social interaction. Baseline assessment was carried out in 1999/2000 with observations made of 343 people with learning disabilities living in 76 residential and supported living services in England. Reassessment was made in 2005/2006 with trained assessors visiting 138 services, where they observed 469 people being supported in their own homes. Questionnaires were also completed by 425 staff, and information collected on 649 people with learning disabilities. The results show that person-centred approaches have resulted in the people supported by United Response being significantly more engaged in everyday activities, with the greatest change being seen among people with the most complex needs. In 2000, 35% of people were largely disengaged; this reduced to 14% in 2005/2006. The number of people engaged for more than 50% of the time increased from 13% to 31%.
Care standards in homes for people with intellectual disabilities
- Authors:
- BEADLE-BROWN Julie, HUTCHINSON Aislinn, MANSELL Jim
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 21(3), May 2008, pp.210-218.
- Publisher:
- Wiley
National minimum standards for residential care homes were introduced following the Care Standards Act 2000 in response to concern about the lack of consistency and poor quality services. These standards are intended to reflect outcomes for service users and to be comprehensive in scope. This study compared ratings made by care standards inspectors with research measures for 52 homes for people with intellectual disabilities serving 299 people. The research measures focused on the lived experience of residential care, including engagement in meaningful activity, choice and participation in activities of daily living. They also included measures of related care practices and organizational arrangements. The research measures were in general significantly correlated with each other. Most of the care standards ratings were also correlated with each other. However, only two of 108 correlations between care standards and research measures were significant. Possible reasons for this are discussed. This study confirms that the review of national minimum standards and modernization of inspection methods recently announced by the Department of Health and the Commission for Social Care Inspection are timely and appropriate.
Person-centred approaches and quality of life
- Author:
- BEADLE-BROWN Julie
- Journal article citation:
- Tizard Learning Disability Review, 11(3), July 2006, pp.4-12.
- Publisher:
- Emerald
This mainly conceptual paper summarises the current conceptualisation of personalisation as it applies to people with learning disabilities. It goes on to map out how the drive towards the personalisation of services, its most recent iterations of person-centred planning, person-centred funding and person-centred action, contributes to a better quality of life for people with intellectual disabilities using quality of life domain indicators (social inclusion, physical well-being, interpersonal relations, material well-being, emotional well-being, self-determination, personal development and rights). In doing so it describes what you would see in services where person-centred approaches were being successfully implemented.
Comparing costs and outcomes of supported living with group homes in Australia
- Authors:
- BIGBY Christine, BOULD Emma, BEADLE-BROWN Julie
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 43(3), 2018, pp.295-307.
- Publisher:
- Taylor and Francis
Background: Supported living is perceived as more flexible than group homes for people with intellectual disability. This study identified costs and factors associated with quality of life (QOL) in supported living and compared this with group homes. Method: Thirty-one residents in supported living participated in a survey incorporating measures of service user characteristics and QOL. Participants in supported living were compared to a sample of 397 people in 96 group homes, and QOL outcomes compared for a matched sample of 29 people in supported living and group homes. Results: QOL differed little, supported living was cheaper, and 30–35% of both groups had similar support needs. Being younger, having autism, better health, family support, and participation in structured activities were associated with better outcomes in supported living. Conclusions: Supported living holds potential for group home residents, but greater support is required in domains such as health and interpersonal relationships. (Edited publisher abstract)
Evaluating service users’ experiences using Talking Mats®
- Authors:
- STEWART Kitty, BRADSHAW Jill, BEADLE-BROWN Julie
- Journal article citation:
- Tizard Learning Disability Review, 23(2), 2018, pp.78-86.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to establish the effectiveness of Talking Mats® (TM) in evaluating service users’ experiences, and explore their views of the implementation of person-centred active support (PCAS). Design/methodology/approach: This is a mixed-methods study, employing qualitative interviewing and observational measures. Findings: Both qualitative and quantitative measures indicated inconsistent implementation of PCAS. It was possible to effectively gain participants’ views on positive and negative aspects of quality of support and quality of life, using TM, across three themes, My life, My support and Self-determination. Research limitations/implications: Generalisability of the research may be limited due to the sample, and the potential for researcher and interviewer bias is acknowledged. Practical implications: TM provides a mechanism that may facilitate the inclusion of the views and experiences of people with intellectual and developmental disability (PWIDD) who have limited verbal skills. Their views need to be reflected in adaptions made to PCAS. Originality/value: This study included a population who are often left out of qualitative research because of the methodologies adopted. It also included older PWIDD, where there has been less research about the effectiveness of TM. (Edited publisher abstract)
Deinstitutionalisation and community living: position statement of the Comparative Policy and Practice Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities
- Authors:
- MANSELL Jim, BEADLE-BROWN Julie
- Journal article citation:
- Journal of Intellectual Disability Research, 54(2), February 2010, pp.104-112.
- Publisher:
- Wiley
The process of “deinstitutionalisation”; that is the abandonment of large residential institutions and their replacement by small scale services allowing people to live in the community, is well advanced in Scandinavia, the US, Canada, the UK and Australasia. Although here the debate is largely resolved, questions remain about whether newer kinds of supported accommodation replicate institutional features and themselves need reform. In other countries the debate has never really begun because those with intellectual disabilities are mostly cared for by their families. In a third group of countries the dominant form of care remains institutional and how to replace this is at the heart of the debate. The purpose of this position statement by the Comparative Policy and Practice Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities was to set out concisely the evidence for comparing institutional to community services and to draw out implications for policy makers. The UN Convention on the Rights of Persons with Disabilities obliges states to develop community living to replace institutional care. The authors suggest that in addressing this task, policy makers should be aware of the evidence that; community living offers the prospect of an improved lifestyle and quality of life over institutional care for people with intellectual disabilities, that this applies to old and new institutions alike whatever they are called; that community care is no more expensive than institutional care on the basis of comparative need and quality of care; and successful community living requires close attention to the way services are set up and run, especially the quality of staff support.