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Six lives: progress report on healthcare for people with learning disabilities
- Author:
- GREAT BRITAIN. Department of Health
- Publisher:
- Great Britain. Department of Health
- Publication year:
- 2013
- Pagination:
- 85
- Place of publication:
- London
This report charts the progress that has been made in healthcare for people with a learning disability since 2010. It is the second of two progress reports that the Department has published since the original Six Lives report, published in 2009, which investigated the deaths of six people with learning disabilities. It includes the personal perspectives of people with learning disabilities and their families and an easy read summary. (Edited publisher abstract)
“LEARN”ing what is important to children and young people with intellectual disabilities when they are in hospital
- Authors:
- OULTON K., SELL D., GIBSON F.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(5), 2018, pp.792-803.
- Publisher:
- Wiley
Background: The need to review health service provision for children and young people (CYP) with disabilities and their families in the United Kingdom has been expressed in multiple reports: the most consistent message being that services need to be tailored to meet their individual needs. Our aim was to understand the hospital‐related needs and experiences of CYP with intellectual disabilities. Method: An ethnographic study of a neurosciences ward and outpatient department was conducted within a paediatric tertiary hospital setting. Results: Five themes, developed using the acronym LEARN, explained what is important to CYP with intellectual disabilities in hospital: (i) little things make the biggest difference, (ii) eliminate unnecessary waiting, (iii) avoid boredom, (iv) routine and home comforts are key and (v) never assume. Conclusions: It is imperative that the present authors continue to challenge the idea that it is acceptable to exclude CYP with intellectual disabilities from research because of their inability to participate. (Edited publisher abstract)
Easy read and accessible information for people with intellectual disabilities: Is it worth it? A meta-narrative literature review
- Authors:
- CHINN Deborah, HOMEYARD Claire
- Journal article citation:
- Health Expectations, 20(6), 2017, pp.1189-1200. Online only
- Publisher:
- Wiley
Background: The proliferation of “accessible information” for people with intellectual disabilities in UK health care has accelerated in recent years, underpinned by policy guidance alongside the recent introduction of mandatory standards. However, questions have been raised as to the impact of such resources as a means of enhancing involvement in health care and addressing health inequalities. Objective: To review and synthesise the evidence from different approaches used to evaluate the impact of accessible information for people with intellectual disabilities using a meta-narrative approach. Search strategy: Literature searches were iterative and incorporated formal databases, grey literature and hand searches alongside more intuitive and opportunistic methods. Inclusion criteria: Included English language papers published before December 2015 described the design and evaluation of written information adapted for adults with intellectual disabilities. Data extraction and synthesis: The authors organised the papers into five groups according to similarity in authors’ writing styles and presentation, epistemology and theoretical foundations, aims and methodologies, professional and organisational identities. Main results: The 42 included papers in the five groupings occupied diverse positions on (i) public communication vs individualised materials, (ii) literacy as contextualised skills vs social practices and (iii) the expertise of patients vs professionals. There was limited evidence for the impact of accessible health information, notwithstanding the potential benefits associated with their creation. Conclusions: Individually tailored information is more likely to meet personalised health information needs for people with intellectual disabilities. The emergence of different social formations in the creation of accessible information has potential for advancing engagement of diverse groups. (Edited publisher abstract)
Contact with primary care: the experience of people with intellectual disabilities
- Authors:
- PERRY Jonathan, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 27(3), 2014, pp.200-211.
- Publisher:
- Wiley
Background: People with intellectual disabilities experi-ence disparities in their health and health care. Annual health checks are intended to counter such disparity by improving access to primary health care. However, little is known about their experience of having a health check or other types of contact with primary care services. Materials and Methods: The findings of two studies which used focus groups were combined. 102 people with intellectual disabilities participated in the focus groups. Results: Participants' experiences of primary care services generally, and health checks in particular, were positive. However, unanimity was rare on any of the topics discussed and a number of areas of dissatisfaction emerged. Conclusions: Further studies with larger and more representative samples are necessary as feedback from people with intellectual disabilities about their experience of contact with primary care staff might help to enhance GP knowledge about their health requirements. (Publisher abstract)
Understanding and working with people with learning disabilities who self-injure
- Authors:
- HESLOP Pauline, LOVELL Andrew, (eds.)
- Publisher:
- Jessica Kingsley
- Publication year:
- 2012
- Pagination:
- 160p.
- Place of publication:
- London
The aim of this book is to provide information and resources for those supporting people with learning disabilities who self-injure, to help them to provide appropriately individualised care. It is intended as a resource for social workers, psychologists, counsellors, learning support workers, nurses and social and health care students. It synthesises behavioural and psychological approaches to understanding self-injury and draws on psychoanalytic and social theory to provide practical guidelines for effective support. It discusses motivations for self-injury and suggests person-centred techniques that encourage communication and recovery, using case examples. It covers a range of specific needs, including people with autism who self-injure, and explores the views of people with learning disabilities and their families about what has worked best and why.
Six lives: progress report summary: easy read
- Author:
- GREAT BRITAIN. Department of Health
- Publisher:
- Great Britain. Department of Health
- Publication year:
- 2010
- Pagination:
- 13p.
- Place of publication:
- London
This is an Easy Read summary of the progress report written for the Parliamentary and Health Service Ombudsman and Local Government Ombudsman. The progress report is in response to the recommendations in their 2009 report Six Lives: The Provision of Public Services to People with Learning Disabilities, which investigated the deaths of six people with learning disabilities. It describes the background, and looks at progress in doing what the ombudsmen asked, what was found out, things that are making a difference, and things that people were worried about. It also notes that more work needs to be done to make things better for people with learning disabilities, and summarises what happens next.
Six lives: progress report
- Author:
- GREAT BRITAIN. Department of Health
- Publisher:
- Great Britain. Department of Health
- Publication year:
- 2010
- Pagination:
- 58p.
- Place of publication:
- London
The Parliamentary and Health Service Ombudsman and Local Government Ombudsman published the Six Lives: The Provision of Public Services to People with Learning Disabilities report in March 2009, which investigated the deaths of six people with learning disabilities. This progress report in response to the recommendations in the Six Lives report was prepared using information and views gathered from a range of service providers, service users and other relevant people and groups. It looks at the Six Lives recommendations, discussing reviewing and reporting, regulatory bodies, and the role of the Department of Health, and what seems to be making a difference and what is causing most concern in terms of impact. It notes that much work has been undertaken to improve care and treatment of people with learning disabilities, but that more needs to be done.
The five accomplishments: a framework for obtaining customer feedback in a health service community learning disability team
- Authors:
- MURRAY George C., et al
- Journal article citation:
- British Journal of Learning Disabilities, 26(3), 1998, pp.94-99.
- Publisher:
- Wiley
Examines the usefulness of using the philosophy of normalisation and, in particular, O'Brien's 1992 Five Accomplishments as a basis for evaluating client satisfaction with a community-based health service learning disabilities team. It is based on a survey of a group of people with mild learning disabilities, using the Five Accomplishments as a framework for a semi-structured interview. Areas of client satisfaction and dissatisfaction are discussed in the context of the use of a value-based means of obtaining feedback from clients. Limitations of interviewing techniques and specifically those used in this study are reviewed.
Using healthcare services: perspectives of community‐dwelling aging adults with intellectual disabilities and family members
- Authors:
- BAUMBUSCH Jennifer, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 16(1), 2019, pp.4-12.
- Publisher:
- Wiley
The aging of adults with Intellectual Disability (ID) in the community resulting from deinstitutionalization signals a need for change in healthcare policy and services. This population is growing older at rates similar to the rest of the population, and individuals with ID often have multiple chronic illnesses and may experience young‐onset dementia, increasing their need to use healthcare services. However, it is widely recognized that currently healthcare services are ill‐prepared to meet the unique needs of this population as they age in their communities. The purpose of this study was to explore this issue from the perspectives of aging individuals with ID and family members (FMs). This study employed qualitative description as the method of inquiry and took place in British Columbia, Canada. Adults with ID age 40 years and older (N = 21) and FMs (N = 26) participated. Data were collected through focus groups and semistructured interviews. Thematic data analysis was conducted to generate the main study findings. Two overarching themes were identified. First, “the organization and culture of healthcare services in the community.” This theme included issues such as age restrictions on health services, navigating health services, the culture of appointment‐making, and implications of living in rural settings, all of which influenced how individuals used healthcare services. Second, “interactions with healthcare providers” illustrated ways in which providers contribute to healthcare experiences. Many factors, both organizational and interpersonal, shape the experiences of aging individuals with ID using healthcare services in their communities. There continues to be a policy and service gap that can create unnecessary and avoidable difficulties in using healthcare services. Policies, service delivery, and education of healthcare providers need to be revisited in light of the unique needs of this population aging in the community in order to ensure healthcare is accessible. (Edited publisher abstract)
Assessment of an expert committee as a referral process within health and social services
- Authors:
- TREMBLAY Audree, MORIN Diane
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 12(3), 2015, pp.162-171.
- Publisher:
- Wiley
In Quebec, Canada, health and social services available to persons with intellectual disability are hierarchically organised into three levels of care: primary, secondary, and tertiary care. The referral processes through which persons gain access to services at each level vary across facilities. As a result, persons with intellectual disability may not receive the appropriate level of care and the responsibilities of facilities at each level overlap, creating an undue burden on the public healthcare system. This study sought to propose a structured assessment and referral method within the network of public services. Specifically, it evaluated the correspondence between the currently received level of care and an expert committee's determination. Furthermore, it examined client-related variables that were associated with the level of services. An expert committee evaluated the level of specialisation of services required by 30 persons with intellectual disability. The committee's determination was based on participants' files and presentations by their primary case worker. It was found that 10 out of the 30 participants were not receiving the level of care determined to be necessary by the expert committee. Challenging behaviours were most strongly associated with the committee's determination. This study underscores the primacy of clinical judgement, rather than a predetermined list of participant characteristics, in order to refer persons with intellectual disability toward services that best meet their specific needs. It also highlights the importance of taking into account challenging behaviours. (Edited publisher abstract)