Search results for ‘Subject term:"learning disabilities"’ Sort:
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‘So often they do not get recruited’: exploring service user and staff perspectives on participation in learning disability research and the barriers that inhibit it
- Authors:
- CROOK Bradley, et al
- Journal article citation:
- British Journal of Learning Disabilities, 44(2), 2016, pp.130-137.
- Publisher:
- Wiley
The importance of making research participation accessible for people with learning disabilities is emphasised in government and NHS research strategies. This evaluation explored the realities of this goal from the perceptions of people with learning disabilities and clinicians within an NHS learning disability service. People with learning disabilities participated in a focus group (n = 5), and clinicians completed a questionnaire (n = 34), to explore each groups’ experience of research, and identify barriers that may prevent people with learning disabilities from participating. People with learning disabilities engaging in research was seen as essential to increase knowledge of learning disabilities, as well as promote development of appropriate services. Barriers to participation included ability, ethical considerations, practicalities and restriction by ‘gatekeepers’. Clinicians also felt a lack of resources and support prevented them from fulfilling their roles within research. Implications and recommendations are discussed. (Publisher abstract)
Reducing health inequalities in Scotland: the involvement of people with learning disabilities as national health services reviewers
- Authors:
- CAMPBELL Martin, MARTIN Mike
- Journal article citation:
- British Journal of Learning Disabilities, 38(1), March 2010, pp.49-58.
- Publisher:
- Wiley
Reducing health inequalities is a key priority for the Scottish Government. Health authorities are expected to meet quality targets. The involvement of people with learning disabilities in health service review teams has been one of the initiatives used in by National Health Service Quality Improvement Scotland to empower patients and improve health services. This paper describes this initiative, how it was planned, and an evaluation by health staff, carers and people with learning disabilities. Recommendations are made to ensure the future success of this type of initiative in Scotland and elsewhere. This initiative was evaluated positively and tested traditional assumptions, challenging the power imbalance in patient-provider relationships. The theory and the practice of including people with learning disabilities as 'expert patient' reviewers are discussed.
User participation in services for people with learning disabilities: conference proceedings
- Author:
- HIGGINS Joan
- Publisher:
- University of Southampton. Institute for Health Policy Studies
- Publication year:
- 1993
- Pagination:
- 50p.
- Place of publication:
- Southampton
Includes papers on: the Southampton action on quality project; pathway to a consumer feedback mechanism - project report; the patient's charter and people with learning disabilities; quality action groups; self and citizen advocacy; and consumer involvement and the All Wales strategy.
Mental capacity to consent to research? Experiences of consenting adults with intellectual disabilities and/or autism to research
- Authors:
- HAMILTON Jahanese, et al
- Journal article citation:
- British Journal of Learning Disabilities, 45(4), 2017, pp.230-237.
- Publisher:
- Wiley
Accessible Summary: The NHS Constitution states that all patients should have opportunity to take part in approved research. This study asked clinical researchers how they include people with intellectual disabilities and/or autism in research. Many barriers were identified that relate to making mental capacity judgements. Many researchers agreed new resources that support consent and capacity judgements for research would be helpful and gave some ideas about what could help. Background: Adults with intellectual disabilities and/or autism are often excluded from participating in health and healthcare research. Understanding study information, which is an important aspect of demonstrating capacity to give informed consent, can be a particular challenge. This study surveyed clinical researchers to discover: (i) their experiences of assessing mental capacity for research; (ii) what methods they used to facilitate the inclusion of adults with intellectual disabilities and/or autism; and (iii) their views about a proposal to develop new resources to facilitate mental capacity judgements with adults with intellectual disabilities and/or autism for informed consent for research. Methods: Clinical researchers in North East England who conduct research with NHS patients with intellectual disabilities and/or autism were invited to participate in a 22-item self-completed semi-structured questionnaire survey, either online or on paper. Results: Twenty-one clinicians completed the survey (response rate 30.4%). Participants reported on 18 research studies which included people with intellectual disabilities and/or autism. In many studies people who lacked capacity to give informed consent were excluded, and often shortcuts were taken in judging capacity. Limited adaptations to support capacity were used. Respondents welcomed the proposal of developing assistive resources that could support capacity judgements and informed consent to research. Conclusions: To improve access to research for people with intellectual disabilities and/or autism, researchers need robust methods to facilitate informed consent and mental capacity judgements. Future research should determine which assistive resources show potential to support informed consent and capacity decisions, and whether such resources could improve inclusion in research. (Edited publisher abstract)
Learning, candour and accountability: a review of the way NHS trusts review and investigate the deaths of patients in England
- Author:
- CARE QUALITY COMMISSION
- Publisher:
- Care Quality Commission
- Publication year:
- 2016
- Pagination:
- 76
- Place of publication:
- Newcastle upon Tyne
Reports on a review carried out by the Care Quality Commission to investigate how NHS trusts identify, investigate and learn from the deaths of people under their care. This review was carried out in response to the very low numbers of investigations or reviews of deaths at Southern Health NHS Foundation Trust. It draws on evidence from a national survey of NHS trusts and visits to 12 acute, community healthcare and mental health trusts; the views of over 100 families, collected through interviews, events and an online form; and consultation with charities and NHS professionals. The findings are discussed in five areas: the involvement of families and carers; the identification and reporting of deaths; making decisions to review and investigate; decisions to review or investigate; and governance arrangement and learning. Examples of promising practice are also included. The results found that that many carers and families had a poor experience of investigations and are not always treated with respect and honesty. This was especially true of deaths involving people with a learning disability or people with mental problems. The review also found that opportunities are missed to learn across the system from deaths that may have been prevented. It concludes that learning from deaths needs to be a much greater priority for all working within health and social care. The report makes recommendations for improvement. (Edited publisher abstract)
Short breaks pathfinder evaluation: interim report: end of phase one
- Authors:
- GREIG Rob, et al
- Publisher:
- Great Britain. Department for Children, Schools and Families
- Publication year:
- 2010
- Pagination:
- 25p.
- Place of publication:
- London
This evaluation report describes what has been happening in the Pathfinder sites and also explain why and for whom those things might have been happening. It then draws conclusions as to what that might mean for transferability of the learning to other situations and settings. The research consisted of a review of relevant national documentation, and discussions with other key national stakeholders and series of interviews, meetings and interactions with stakeholders from the 21 Pathfinder sites. Descriptions of the process and methodology used for the work, a summary of the initial ‘emerging theories of change’ that have arisen from the analysis of the data obtained, and a short comment on other issues and themes arising from the initial fieldwork and analysis. This report includes sections on: the effectiveness of parent participation in developing innovative short breaks; how involving children and young people is leading to more accessible and child focused short breaks; emerging inclusion and increase of ordinary community facilities; effectiveness of partnership working, where it exists; and a ‘softening’ of the process of accessing short breaks leading to a more open service available to more families.
Access to and use of Patient Advice and Liaison Services (PALS) by children, young people and parents: a national survey
- Author:
- SOCIAL POLICY RESEARCH UNIT
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2003
- Pagination:
- 4p.
- Place of publication:
- York
Patient Advice and Liaison Services (PALS) are a key part of the user involvement system in the NHS in England. Reports on a national survey of PALS to examine the extent to which PALS have developed in ways that are inclusive of children, young people and parents. Respondents from 243 PALS provided information for the survey; 122 in PCTs, 101 in NHS trusts, 15 serving both PCTs and NHS Trusts, and 5 in Children's Hospitals. Discusses the findings in relation to staffing, location and open hours, links with other organisations, training and ability to deal with users concerns.
Implementing caring for people: "it's our lives"; community care for people with learning disabilities
- Author:
- GREAT BRITAIN. Department of Health
- Publisher:
- Great Britain. Department of Health
- Publication year:
- 1994
- Pagination:
- 52p.,bibliog.
- Place of publication:
- London
Study forming part of a series evaluating community care implementation in health and social services. Includes sections on: planning services for people with learning difficulties; assessment and care management; service provision; and ensuring quality.
It works!
- Author:
- THOMAS Peter
- Journal article citation:
- Care Weekly, 30.9.93, 1993, p.12.
A project in Somerset to move people with learning disabilities from three long-stay hospitals into the community was completed a year ahead of schedule and on budget. The project was based on the principle that users preferences should be listened to and then built into the new services.