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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)
Developments in deinstitutionalization and community living in the Czech Republic
- Authors:
- ŠIŠKA Jan, BEADLE-BROWN Julie
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 8(2), June 2011, pp.125-133.
- Publisher:
- Wiley
This article considers the progress towards the development of community-based services and full social inclusion for people with intellectual disabilities in the Czech Republic. It summarises progress over the past 2 decades in the Czech Republic in moving from an institutional era toward one that values community-based alternatives. Particular attention is paid to issues such as choice and control, individual funding as a means towards social inclusion, and the matter of human rights. While European and national policy is supportive of community living, and new individualised funding streams have been created, progress in the Czech Republic toward the goal of community living for everyone with a disability has been slow and has met with many barriers. The article highlights the need to consider issues such as the availability of data related to funding and delivery of services, planning of the transitional period toward community-based services, accessibility of reports on quality of services (including institutions), and the conflict of interests created by the system of guardianship. It concludes that, despite economic circumstances that may slow down the process of deinstitutionalisation, the direction of change toward community living needs to be sustained.
Adult protection of people with intellectual disabilities: incidence, nature and responses
- Authors:
- BEADLE-BROWN Julie, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 23(6), November 2010, pp.573-584.
- Publisher:
- Wiley
This paper presents findings from the analysis of the 1,926 referrals relating to people with intellectual disabilities included description of the nature of abuse and the responses to the referrals. Findings indicated that about one-third of all adult protection referrals related to people with intellectual disability, remaining consistent over time. However, the number of referrals increased significantly. The majority of people lived in residential care or supported living and this was reflected in the nature of the referrals – people were more likely to have been abused in the care home and by staff or service users than those without an intellectual disability. The most common type of abuse was physical abuse. Sexual abuse was more prevalent in the intellectual disability sample. People with intellectual disability were more likely to have experienced follow-up action, usually through more monitoring. There was a different pattern of abuse seen in those placed out-of-area. The authors conclude that there is some indication that residential situation and in particular being placed in a residential placement out-of-area may be an important factor in predicting adult protection referrals.
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.
Grouping people with learning disabilities and challenging behaviour in residential care
- Authors:
- MANSELL Jim, BEADLE-BROWN Julie
- Journal article citation:
- Tizard Learning Disability Review, 9(2), April 2004, pp.4-10.
- Publisher:
- Emerald
Grouping people with learning disabilities and challenging behaviour in residential care has been the focus of several recent research studies. Describes these studies and what they found. In general they found negative effects of grouping people with challenging behaviour together in terms of the quality of staff interaction with them and the outcomes they experience.
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)
Conundrums of supported living: the experiences of people with intellectual disability
- Authors:
- BIGBY Christine, BOULD Emma, BEADLE-BROWN Julie
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 42(4), 2017, pp.309-319.
- Publisher:
- Taylor and Francis
Background: Dissatisfaction with the inflexibility of the group home model has led to the growth of supported living that separates housing from support and is thought to have greater potential for better quality of life outcomes. Comparative studies have had mixed findings with some showing few differences, other than greater choice in supported living. By investigating service user experiences of supported living this study aimed to identify how the potential of supported living might be better realised. Method: Thirty-four people with intellectual disability participated in 7 focus group interviews and 6 people in an individual interview. Data were analysed using grounded theory methods. Results: Although participants experienced greater choice and control over their everyday lives, they did not feel they controlled the way support was provided and experienced restrictions on lifestyle associated with low income. Despite their use of community places and varied social connections to family, friends, and acquaintances, most experienced loneliness. Conclusions: If the potential of supported living is to be realised, shortcomings of support arrangements must be addressed by, for example, greater consistency of support worker skills, consumer control over recruitment and rostering, and more skilled support to build friendships and manage difficult relationships. (Publisher abstract)
Implementation of active support in Victoria, Australia: an exploratory study
- Authors:
- MANSELL Jim, BEADLE-BROWN Julie, BIGBY Christine
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 38(1), 2013, pp.48-58.
- Publisher:
- Taylor and Francis
Active support is an effective intervention to support engagement of residents with intellectual disability in group homes. This survey explored resident characteristics of the people supported by organisations implementing active support, the provision of active support, its procedures and systems, and resident engagement in meaningful activity and relationships. Information was collected through questionnaires and direct observation of 33 group homes from 6 organisations in Victoria, Australia, with a 5–10-year history of implementing active support. Residents with lower support needs were engaged with little staff contact or assistance. Use of active support systems and structures was mixed. Only one organisation consistently provided good active support. Administrative systems and structures are not sufficient to change staff interaction and thus resident experience. Shared supported accommodation services may represent an inefficient use of resources for more able residents, as staff resources are not maximised to support for resident engagement. (Publisher abstract)
A better life: the implementation and effect of person-centred active support in the Avenues Trust
- Authors:
- BEADLE-BROWN Julie, HUTCHINSON Aislinn, WHELTON Beckie
- Journal article citation:
- Tizard Learning Disability Review, 13(4), December 2008, pp.15-24.
- Publisher:
- Emerald
Engagement in meaningful active and relationships is important for quality of life but, for those with intellectual and developmental disabilities, engagement depends on the quality of support received from those around them. This paper describes the process of implementing person-centred active support in the Avenues Trust, and the findings from the evaluation of the implementation in six pilot residential services. Attention was paid to both training staff and the level of increased engagement increased significantly after the introduction of person-centred active support. In addition, people experienced decreased self-stimulatory and injurious behaviour, increased opportunities for choice and control, and higher levels of participation in tasks of daily living, without compromising their community involvement. Staff experienced more and better practice leadership, and staff morale improved within the services, with staff generally more positive about management, more satisfied and less likely to leave. Lessons learned about the implementation are provided.