Ruth Northway

‘I’m a researcher!’ Working together to gain ethical approval for a participatory research study

‘I’m a researcher!’ These were the words used by one member of our research team when we left a meeting of our Local Research Ethics Committee having been granted approval for our research study. This participatory study aims to ask people with intellectual disabilities1 what they think about health and what helps them to be healthy. However, it also aims to enable people with intellectual disabilities to develop their skills as researchers. We felt that we had learnt a lot from the process of gaining ethical committee approval and, since ethical committee approval is something which many participatory studies may need to secure, we thought that our experiences would help other people both nationally and internationally who are planning to undertake similar work. We therefore decided to write this article.

Ending Participatory Research

Traditionally, ‘ending’ research is a stage in the research process that is not widely explored. However, recently, some concerns have been expressed regarding the effects that ending participatory research may have on some people with learning disabilities. Given the importance of research which promotes their active participation it is thus important that researchers seeking to engage in such research consider carefully the challenges which may arise. In this paper, therefore, some key implications are considered and an argument is put forward that researchers should consider these implications before commencing work on participatory research projects. This means that ‘ending’ research is a stage in the research process which needs to be given much more emphasis than has previously been the case.

An investigation into the advocacy role of the learning disability nurse

This paper discusses the interaction between the first and second stages of a three-stage grounded theory study that investigated the advocacy role of learning disability nurses in Wales. Definitions of advocacy and their advocacy support needs obtained from people with learning disabilities in the first stage informed the design of focus groups in which nurses compared their own perceptions of advocacy with those of people with learning disabilities. The nurses also discussed barriers to advocacy, independent advocacy services and their requirements for advocacy education. Findings revealed that all nurse participants advocated for their clients, but some definitions of advocacy by people with learning disabilities were not considered relevant to their current practice by some nurses. Nurses’ advocacy role varied with their work situation and was influenced by adherence to either the individual/medical or the social model of disability. All nurses recognised barriers to advocacy, but ability to access independent advocacy services was inconsistent, as was participants’ attitude towards and willingness to use these. Nurses’ received education in advocacy varied, but they expressed a need for ongoing support and training in advocacy related to their own work area and had specific requirements regarding how and by whom this should be provided.

A study protocol for a pilot randomised trial of a structured education programme for the self-management of type 2 diabetes for adults with intellectual disabilities

BackgroundThe need for structured education programmes for type 2 diabetes is a high priority for many governments around the world. One such national education programme in the United Kingdom is the DESMOND Programme, which has been shown to be robust and effective for patients in general. However, these programmes are not generally targeted to people with intellectual disabilities (ID), and robust evidence on their effects for this population is lacking. We have adapted the DESMOND Programme for people with ID and type 2 diabetes to produce an amended programme known as DESMOND-ID.This protocol is for a pilot trial to determine whether a large-scale randomised trial is feasible, to test if DESMOND-ID is more effective than usual care in adults with ID for self-management of their type 2 diabetes, in particular as a means to reduce glycated haemoglobin (Hb1Ac), improve psychological wellbeing and quality of life and promote a healthier lifestyle. This protocol describes the rationale, methods, proposed analysis plan and organisational and administrative details.Methods/DesignThis trial is a two arm, individually randomised, pilot trial for adults with ID and type 2 diabetes, and their family and/or paid carers. It compares the DESMOND-ID programme with usual care. Approximately 36 adults with mild to moderate ID will be recruited from three countries in the United Kingdom. Family and/or paid carers may also participate in the study. Participants will be randomly assigned to one of two conditions using a secure computerised system with robust allocation concealment. A range of data will be collected from the adults with ID (biomedical, psychosocial and self-management strategies) and from their carers. Focus groups with all the participants will assess the acceptability of the intervention and the trial.DiscussionThe lack of appropriate structured education programmes and educational materials for this population leads to secondary health conditions and may lead to premature deaths. There are significant benefits to be gained globally, if structured education programmes are adapted and shown to be successful for people with ID and other cognitive impairments.Trial registrationRegistered with International Standard Randomised Controlled Trial (identifier: ISRCTN93185560) on 10 November 2014.

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

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 suggested. The research group is still in its infancy but has aspirations to move from being a user involvement group to a user-led group incorporating the differing viewpoints and promoting an equal contribution from its members.

How Do People with Intellectual Disabilities View Abuse and Abusers

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 for improved responses to disclosures of abuse and the provision of ongoing support to address psychological issues.

Evidencing good practice in adult protection: informing the protection of people with learning disabilities from abuse

The importance and challenges in providing a good practice evidence base for adult protection are outlined. The literature search, review and mapping exercise that formed part of the Abuse of Adults with Learning Disabilities: Policy, Practice and Educational Implications in Wales research study is detailed. The article presents examples from this evidence mapping exercise and considers the importance of adult protection research to the future development of policy and practice.

Participatory research, people with intellectual disabilities and ethical approval: making reasonable adjustments to enable participation

AIMS AND OBJECTIVES The aim of this paper is to explore how making reasonable adjustments to the process of securing ethical approval for research can facilitate the meaningful involvement of people with intellectual disabilities as members of a research team. This is achieved through critical reflection upon the approach taken within one participatory research study whose objective was to explore how people with intellectual disabilities understand abuse. BACKGROUND Internationally participatory research studies (in which active involvement of community members in all stages of the research process is sought) are becoming increasingly common in the context of health care and, more specifically, within research involving people with intellectual disabilities. However, whilst it is acknowledged that participatory research gives rise to specific ethical challenges, how (or if) involvement in securing ethical approval is facilitated, is not discussed in most research reports. The significance of this paper is that it seeks to address this gap by exploring how meaningful participation can be promoted by making reasonable adjustments. METHODS Within the study, the research team worked in collaboration with the ethics committee to identify potential barriers that could prevent the participation of members of the research team who had intellectual disabilities. Reasonable adjustments (such as redesigning forms) were made to the processes involved in securing ethical approval. CONCLUSIONS This study demonstrated that it is possible to ensure that ethical standards are upheld and the requirements of ethics committees met whilst also facilitating the meaningful involvement of people with intellectual disabilities. RELEVANCE TO CLINICAL PRACTICE The reasonable adjustments approach explored within this paper can be translated into the context of clinical practice: making changes to the way that services are delivered can promote greater involvement of people with intellectual disabilities in their own health care.

What does independence mean

Independence is something that tends to be highly valued in many current societies: it is something that is sought and prized. However, one consequence of this is that perceived dependency is often stigmatized and those who require support can be marginalized and devalued. Furthermore, such perceptions are sometimes fuelled and maintained by media reports that portray the need for support as a ‘drain’ on the economic resources of society. The concept of independence (and by implication also that of dependence), however, requires critical analysis. I read the work of Jenny Morris (1993) regarding independent living many years ago, but one key point from this work has stayed with me: independence can be viewed in different ways. In her book, she highlighted how (from a professional perspective) independence is often viewed in terms of whether an individual is able to do something on his or her own. In other words, we tend to assess the extent to which someone is able to perform tasks without assistance (independence) and use this as a basis for arranging packages of care and support when someone is unable to undertake these tasks on their own. However, she also provides an alternative perspective, namely, that independence is concerned with autonomy and being able to exercise control. In this context, an individual may not be able to do something ‘on his/her own’, but they can exercise control over when they do it and who supports them. They may still require support to perform certain actions, but they are able to maintain independence through exerting control over how such support is provided. I was reminded of this recently when discussing independence with a group of people with intellectual disabilities who had decided that they wanted to explore this as a topic for research. When discussing what independence meant, one group member said, ‘Doing what I want, when I want, with the right support’ – one of the best definitions of independence I have come across. Clearly, for this individual, there was recognition that they needed support in order to achieve the things that they want to achieve in their life but having the ‘right’ support and control are also essential. The global economic crisis has had a significant impact on the funding that is available to support service delivery, and this is compounded by rising levels of need both in terms of demand and in terms of complexity. As a consequence, there can be pressures to ‘target’ services on those ‘most’ in need, which inevitably means that some may not receive support or not receive it at a Journal of Intellectual Disabilities 2015, Vol. 19(3) 203–204 a The Author(s) 2015 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629515593659 jid.sagepub.com

Pilot feasibility study examining a structured self‐management diabetes education programme, DESMOND‐ID, targeting HbA1c in adults with intellectual disabilities

To report on the outcomes of a pilot feasibility study of a structured self‐management diabetes education programme targeting HbA1c.