Search results for ‘Subject term:"learning disabilities"’ Sort:
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Knowledge translation in job development: strategies for involving families
- Authors:
- HALL Allison, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 27(5), 2014, pp.489-492.
- Publisher:
- Wiley
Background: Research shows that job developers (direct support professionals who assist people with disabilities to secure, maintain, and advance in employment) are critical to achieving quality employment outcomes. However, the extent to which job developers use practices that are considered promising in their field (such as engaging families) is not well known. Methods: This brief report summarises findings from a qualitative study about the extent to which job developers use the recommended promising practices when working with people with intellectual or developmental disabilities and family members. Results: Qualitative analysis identified the following themes among job developers: factors affecting family involvement, perceptions of family involvement, and the influence of expectation on strategies. Conclusions: The field of job development faces a challenge common to many professions: translating research on best practices to those who need this knowledge the most and can use it to greatest effect. Future research should address how community rehabilitation providers (CRPs) communicate about and instil best practices, including effective family engagement, within their organisations. (Edited publisher abstract)
A systematic review of hospital experiences of people with intellectual disability
- Authors:
- IACONO Teresa, et al
- Journal article citation:
- BMC Health Services Research, 14(505), 2014, Online only
- Publisher:
- BioMed Central Ltd
Background: People with intellectual disability are at risk of poor hospital experiences and outcomes. The aims were to conducts a content and quality review of research into the acute hospital experiences of both people with intellectual disabilities and their carers, and to identify research gaps. Method: A systematic search was conducted of primary research between 2009 and 2013 that addressed the experiences of people with learning disabilities and their carers in general acute care hospitals. Quality appraisal tools yielded scores for quantitative and qualitative studies, and overarching themes across studies were sought. Results: Sixteen studies met inclusion criteria. Quality scores were 6/8 for a survey, and 2/11-9/11 (mean =5.25) for qualitative studies/components. Content analysis revealed seven over-arching themes covering individuals fear of hospital encounters, carer responsibilities, and problems with delivery of care in hospitals including staff knowledge, skills and attitudes. Conclusions: The review of eligible papers revealed that despite 20 years of research and government initiatives, people with intellectual disability continue to have poor hospital experiences. The need for research to identify and investigate care at specific points of encounter across a hospital journey (such as admission, diagnostic testing, placement on a ward, and discharge) as well as to include people with a diversity of disabilities is discussed in terms of potential to influence policy and practice across health and disability sectors. (Publisher abstract)
Aging together: sibling carers of adults with intellectual and developmental disabilities
- Authors:
- COYLE Caitlin E., KRAMER John, MUTCHLER Jan E.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 11(4), 2014, pp.302-312.
- Publisher:
- Wiley
Family care provision is the norm for adults with intellectual and developmental disabilities, even as they and their support networks grow older. As families age together, the role of primary carer frequently transitions from the parent to a sibling, as ageing parents die or become too frail to provide continued support. This paper explores the transition in care from the perspective of a sibling who has replaced parents as the primary carer for an individual ageing with intellectual and developmental disabilities . Data are drawn from semi-structured, in-depth interviews with a sample of adults over age 40, living in the United States, and caring for a sibling with intellectual and developmental disabilities (n = 15). Data were analysed using a constant comparative qualitative approach. Results reveal themes impacting the adjustment to the role of primary carer, the extent to which ageing transformed the content of care needs, the importance of planning, and the availability of supplementary support. Findings from this study underscore the need to develop long-term services and supports as well as educational resources that accommodate this population of carers as they age together with their sibling with intellectual and developmental disabilities. (Edited publisher abstract)
'I never thought I would have to do this’: narrative study with siblings-in-law who live together with a family member with a disability
- Authors:
- VANHOUTTEGHEM Inge, et al
- Journal article citation:
- British Journal of Learning Disabilities, 42(4), 2014, pp.315-322.
- Publisher:
- Wiley
Using narrative research, the authors have aimed to gain an insight into the perspectives of 14 siblings-in-law (living in the Flemish part of Belgium) about the decision to live together with a family member who has a learning disability. The decision to live together usually begins with a crisis. However, the decision process is a complex mechanism; it involves dynamics and events within a family (between family members both with and without blood relationships) and is intensified by experiences within a society that holds different views about families and disability. To develop a deeper understanding of this complex process the article considers interpretations based on the contextual framework of Boszormenyi-Nagy. (Edited publisher abstract)
‘He's hard work, but he's worth it’. The experience of caregivers of individuals with intellectual disabilities and challenging behaviour: a meta-synthesis of qualitative research
- Authors:
- GRIFFITH G.M., HASTINGS R.P.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 27(5), 2014, pp.401-419.
- Publisher:
- Wiley
Background: This review synthesises the qualitative literature on the perspectives of those caring for a family member with intellectual disabilities and challenging behaviour, with a focus on their experiences of support services. Materials and Methods: A thorough literature search resulted in 17 studies being selected for inclusion in the meta-synthesis. Results: Five primary themes were identified: (i) love, (ii) altered identity, (iii) crisis management, (iv) support is not just ‘challenging behaviour’ services, and (v) the future: low expectations, high hopes. Conclusions: Carers spoke of the deep love for their family member and of the chronic strain the demands of caregiving placed upon them. Support services often caused additional problems and high levels of stress for caregivers, although there were also reports of good practice. The findings may inform clinicians and service providers about how best to support families of individuals with challenging behaviour. (Edited publisher abstract)
System-wide information about family carers of adults with intellectual/developmental disabilities: scoping review of the literature
- Authors:
- LUNSKY Yona, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 11(1), 2014, pp.8-18.
- Publisher:
- Wiley
Family carers play an important role supporting individuals with intellectual and developmental disabilities (I/DD) into adulthood. Funders of services often desire this ongoing involvement by family members yet they rarely collect data about family carers. As policy makers and planners are increasingly recognising the need for information related to indicators of system performance, a scoping review was conducted to identify system-wide information needed about family carers of adults with I/DD that would help improve the quality of service provided. A final review of 87 research articles was organised in terms of service use, service need, and permanency planning by family carers of adults with I/DD. Service use and need were associated with the presence of challenging behaviours among individuals with I/DD as well as carer demographics and health status. In addition, carers' subjective view of how well they think they can provide for their child in the future was an important determining factor of service need. Permanency planning was associated with child level of functioning as well as parent income, social support, and compound caregiving demands. Studies highlighted the importance of measuring family carers' mental and physical health and their perceptions of the adequacy of services received. Considered also were methodological limitations, highlighting considerations for future system monitoring. Methodological limitations of studies reviewed include reliance on cross-sectional data, samples consisting of families already receiving at least some services, and little information about the process of seeking and obtaining services. Areas to target in future system monitoring include information on who needs services, what services are needed, families' perceptions of the caregiving experience and families' experiences waiting for services over time. Understanding the experiences of family carers as seekers of formal services can help inform policy and practice. (Publisher abstract)
Safeguarding adults: an independent life after abuse
- Author:
- SOCIAL CARE INSTITUTE FOR EXCELLENCE
- Publisher:
- Social Care Institute for Excellence
- Publication year:
- 2014
- Pagination:
- 8 minutes 55 seconds
- Place of publication:
- London
The film focuses on the personal story of Philip who suffered physical, financial and emotional abuse in the family home for many years. Philip has learning disabilities and cerebral palsy. When Philip finally disclosed the abuse, he was supported to leave the family home. Since then he has gone from strength to strength. He married and, although his wife unfortunately died some years after their marriage, Philip continues to live a full and independent life. Warning: This film contains strong language. This film was previously available under the title: Safeguarding adults: an independent life after long-term abuse within the family.' (Publisher abstract)
Circles of support and personalisation: exploring the economic case
- Authors:
- PERKINS Margaret, et al
- Publisher:
- London School of Economics and Political Science. Personal Social Services Research Unit
- Publication year:
- 2014
- Pagination:
- 17
- Place of publication:
- London
This small-scale study examines the economic case for Circles of Support as way of enabling people with disabilities to live a good life in the community and have greater choice and autonomy in meeting their needs. It also looks at the ways in which Circles have been used, they type of support they can provide, the outcomes achieved and costs incurred. The research was conducted as part of a wider study to assess the economic case for community capacity-building initiatives. Face-to-face interviews were conducted with Circle members: the person with disabilities (where possible), a primary informant (usually a parent) and another Circle member to find out how and why the Circle was set up and how it supported the person with disabilities to have as full and independent life as possible in the community. Circle facilitators were also interviewed to understand their role in providing the planning tools to enable the Circle to best support the person with disabilities. Quantitative data on recent health and social care service use were collected to develop ‘economic pen pictures’ of the five Circles. Informants considered the Circle had impacted positively on the individual’s quality of life. Circles supported care packages which appeared to provide successful alternatives to residential care. Commissioners may wish to explore further how Circles can be an additional approach to personalisation to support people with disabilities to live as independently as possible in the community. (Edited publisher abstract)
Bridging the divide: attitudes towards learning disabilities
- Author:
- MUIR Alison
- Journal article citation:
- Learning Disability Today, 14(4), July/August 2014, pp.24-25.
- Publisher:
- Pavilion
- Place of publication:
- Hove
Attitudes towards people with learning disabilities still vary and many have negative perceptions, including some staff who work with them. In 2013 Hertfordshire Partnership Foundation University NHS Trust (HPUFT), ran a survey to examine attitudes towards people with learning disabilities. The survey asked: 'What does a learning disability mean to you?' and also asked why staff were working with learning disabilities. Over 160 people responded to the survey. Of these 43% were people with learning disabilities; 5% family and carers of people with learning disabilities; 36% staff working with people with learning disabilities; and 16% members of the public. The survey found that 43% of staff demonstrated a negative or ambivalent attitude towards people with learning disabilities. (Original abstract)
Whose responsibility? resilience in families of children with developmental disabilities
- Authors:
- MUIR Kristy, STRNADOVA Iva
- Journal article citation:
- Disability and Society, 29(6), 2014, pp.922-937.
- Publisher:
- Taylor and Francis
Families with children with disabilities are at higher risk of stress, financial disadvantage and breakdown. In recent decades, research and policy have shifted focus from these problems to a strengths-based approach, using concepts such as family resilience. By definition, resilience is the ability to cope in adverse circumstances, suggesting a reliance on the individual. If this is the case, then to what extent does ‘family resilience’ place another burden of responsibility onto families? Whose responsibility is family resilience? This paper begins to answer this question using interviews with parents of children with developmental disabilities based in New South Wales, Australia. (Original abstract)