Showing papers by "Ruth Northway published in 2013"

Becoming a researcher

Abstract: Accessible summary This paper is about three people with learning disabilities. They work as co-researchers. They have written this paper with support. Support is important to them. It has helped them to do the research. They each have a personal assistant. Other people working on the project also help them. They have had training and practised what they needed to do before asking other people questions. They have learnt a lot of new skills and have made a lot of decisions about the project. They enjoy their work and hope that other people will learn from their stories. They hope that other people with learning disabilities will want to do research. Summary People with learning disabilities are increasingly taking on the role of researcher within participatory research projects. This paper talks about what it means to be a researcher using the words, views and experiences of three people with learning disabilities who are currently working as co-researchers. It talks about what they have found helpful, and what they have found challenging. It compares their experiences to those of other people and highlights the importance of support. Overall they report that it has been a positive experience which has helped them to learn a great deal and they provide advice that they hope will help others thinking about taking on such a role.

How do people with intellectual disabilities view abuse and abusers

Abstract: People with intellectual disabilities have a higher risk of being abused than other people, but to date research has not explored their views regarding abuse This article reports the findings relating to one question within a participatory research study concerning the abuse of people with intellectual disabilities This question asked what people with intellectual disabilities’ views are concerning abuse Data were gathered via individual interviews (n = 14) and focus groups (7 groups involving 47 people in total), which were then analysed via a process of sorting statements into themes followed by group discussion and analysis of these themes Participants expressed a range of views regarding abuse, some of which revealed strong emotions: a number of participants indicated that abuse could make people feel as though their lives are not worth living People with intellectual disabilities can discuss their feelings around abuse and recognise the impact this has on their lives There is, however, a need f

Keeping Safe and Providing Support: A Participatory Survey About Abuse and People With Intellectual Disabilities

Abstract: People with intellectual disabilities are at increased risk of abuse, but their views regarding this have not been explored. The authors undertook a study in Wales to examine what help people with intellectual disabilities feel they need to keep safe and, if they are abused, what support they need. A questionnaire was distributed to 47 participants with intellectual disabilities attending a residential research event and as a postal survey across Wales. From this, 107 (56%) usable questionnaires were returned. Respondents identified most strategies for keeping safe as being useful but were more likely to identify personal strategies rather than actions other people could take. When abuse does occur, having a trusted person to speak to and one who will believe you were viewed as the most important aspects. The authors noted that people with intellectual disabilities can identify personal safety strategies and their views and experiences should inform personal safety courses and staff training. Furthermore, they recommend that effective circles of support need to be developed both to protect against abuse and to provide support should it occur.

Setting up a mental health service user research group: a process paper

Abstract: It is claimed that the involvement of mental health service users in research remains fragmented, and expertise in involving service users is still developing. This paper explains how a group of mental health service users and carers formed a Research Development Group in Wales. This is a process paper which describes how the group was established and funded as part of the United Kingdom Clinical Research Networks. It explores the rationale for a Mental Health Service User and Carer Partnership Research Development Group and the challenges experienced in setting up the group, including activities such as a current research project. This project involves collaboration between group members and nurses from a local National Health Service Trust, which is helping to build research capacity. This project is used to illustrate the issues raised, and we provide critical reflections of this process. The power balances that posed challenges to a group of this type are explored and ways to overcome them are suggest...

Researching Policy and Practice to Safeguard People With Intellectual Disabilities from Abuse: Some Methodological Challenges

Abstract: Abuse of adults with intellectual disabilities can and does occur in many places, and as a result, many countries have instituted policies and enacted laws to address this problem. However, research concerning the impact of such policies on abuse remains largely limited to quantitative studies from the perspective of governmental or other authorities and is generally focused on one area or country. Absent are the views and experiences of people with intellectual disabilities with respect to real or perceived abuse. Given the dearth of research involving primary consumers, there is limited knowledge as to the success or failure of such policies and laws. Though carrying out such research can pose methodological and ethical challenges, not undertaking it can also have ethical and social consequences. An international research agenda that includes participatory research that both facilitates the active involvement of and investment in people with intellectual disabilities and views action as an essential outcome is thus proposed. The authors propose such an agenda and posit that along with the collection and analysis of substantially more robust quantitative data, this should facilitate comparison within and between countries.

Safeguarding Adults in Nursing Practice

Abstract: Safeguarding adults in nursing practice , Safeguarding adults in nursing practice , کتابخانه مرکزی دانشگاه علوم پزشکی تهران

A model for care provision and a model of care provision

Abstract: For my editorial in this edition, I am returning to the theme of my first published article back in 1996: ‘The Relationship Between Health and Social Care’. My reason for returning to this subject relates to a new policy document concerning support for people with intellectual disabilities, which has recently been published by the Scottish Government (2013). Under the title ‘The Keys to Life’, this document sets out a range of recommendations that aim to improve the quality of life experienced by people with intellectual disabilities over the coming decade. To some extent, there is nothing new in the publication of such strategy documents since internationally a number have been published over recent years. However, for me, this document does represent a new direction. Whilst aiming for inclusion in all aspects of life, the foreword states that there is a specific emphasis on health in recognition of the growing body of evidence of disparities in both the health status and the quality of health care received by people with intellectual disabilities when compared with the general population. It is stressed, however, that this does not mean a return to medical domination in all aspects of people’s lives (especially, their social lives), but rather it is concerned with improving practices within health care. My career started in the days of long-stay institutions when the medical model of care dominated. However, I also witnessed the closure of such institutions and the emergence of community-based care provision. Undoubtedly, such changes have brought huge improvements in the quality of life experienced by people with intellectual disabilities. Nonetheless as this changed, model of care developed, so a growing concern that health needs were not being adequately identified and met emerged. The evidence of such concerns is well documented (e.g. Ouellette-Kuntz et al., 2005; Krahn et al., 2006; Emerson and Baines, 2010). One of the difficulties that was experienced (particularly, in the early days of developing a social model of care) was that in an effort to move away from the medical model, discussion of health problems was sometimes viewed as an attempt to remedicalise. This confusion arose due to a number of misunderstandings. First, key documents such as the Jay Report (1979) had emphasised that the needs of people with intellectual disabilities were primarily social rather than medical in nature and therefore the medical model was viewed as an inappropriate basis for service provision in this field. What was sometimes missed, however, was that people with intellectual disabilities will (just like everyone else) be ill at some times in their Journal of Intellectual Disabilities 17(3) 179–181 a The Author(s) 2013 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629513499278 jid.sagepub.com