Peer researchers' experiences of a co-produced research project on supported decision-making.

BACKGROUND: Making decisions about your own life is a key aspect of independence, freedom, human rights and social justice. There are disabled people who, without support, would be assessed as incapable of making certain decisions but with the appropriate support are capable of making those decisions and so to not provide that support infringes their rights, undermines their autonomy and reinforces their exclusion from society. However, there is limited research evidence available about disabled people's experiences of the range of approaches provided to support decision-making. This article will explore the experiences of four peer researchers who co-produced a research project on how people have, or have not been, supported to make their own decisions. Two of the peer researchers have experience of mental health problems and two are people with an intellectual disability. The article refers to peer research because its subject matter is the relevant lived experience of people. Peer research is therefore an approach within the broader areas of participatory research and co-production. METHODS: The peer researchers interviewed 21 people with mental health problems and 20 people with an intellectual disability to gain an in-depth understanding of their experiences and preferences for how decision-making should be supported. Peer researcher experiences at each stage of the study from design to analysis were explored using data collected from the peer researchers via blogs written at early stages of the study, discussions at team meetings as the fieldwork progressed and at a final workshop at the end of the study which gave the peer researchers the opportunity to focus on their overall reflections of being a peer researcher. The article also discusses motivations to undertake the peer research role, the process of co-production and the challenges negotiated during the study. RESULTS: The peer researchers reported a number of positive effects of being involved in the research project which included improvements in skills and self-confidence. CONCLUSION: The peer researchers' involvement challenged assumptions about the inability of people with an intellectual disability and/or mental health problems to participate proactively in a research project whilst also highlighting the importance of training for all team members.

Making your own decisions is important. There are disabled people who need support to make some decisions. Supporting disabled people to make decisions is needed so that they are not excluded from society. However, the evidence is limited on disabled people's experiences of how best to support decision-making. This article will explore the experiences of four researchers with mental health problems or an intellectual disability who worked with other researchers to conduct a project on how people have, or have not been, supported to make their own decisions. These researchers are called peer researchers. The peer researchers interviewed 21 people with mental health problems and 20 people with an intellectual disability. These interviews were conducted in order to gain a detailed understanding of the experiences and preferences for how decision-making should be supported. Blogs written by the peer researchers, discussions in team meetings and a workshop at the end of the study enabled the peer researchers to reflect on their experiences. The peer researchers reported a number of positive effects of being involved in the research project which included improvements in skills and self-confidence. The peer researchers' involvement challenged assumptions about the inability of people with an intellectual disability and/or mental health problems to participate in a research project whilst also highlighting the importance of training for all team members.

Key components of supporting and assessing decision making ability.

People's ability to make decisions may be impaired for a wide range of reasons, including by mental health problems and learning disabilities. Individual autonomy, the ability to make decisions about our own lives, is a fundamental tenet of democratic societies. This has been reinforced by laws governing substitute and supported decision making and most significantly by the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Article 12 of the UNCRPD requires everyone to have equal recognition before the law and, to achieve this, the necessary support and safeguards must be available. There has been considerable debate about the important theoretical and philosophical issues involved and growing research about the practice complexities of supporting and assessing decision making ability or mental capacity. This article aims to present some of the key components of the support and assessment process to inform further service development and training in this area. The key components were identified as part of a qualitative, participatory research project which explored the decision making experiences of people with mental health problems and/or learning disabilities. The conventional approach to the assessment of capacity is to consider four main components, whether the person is able to: understand, retain, use and weigh, and communicate the information needed to make the decision at that time. The findings from this research study suggest that people generally don't usually talk about their experiences of decision making in terms of these four components and approaches to supporting people to make decisions don't necessarily break the support down to explicitly address the assessment process. However, considering support for all aspects of the functional test may be helpful to ensure it is as comprehensive as possible. The challenges involved in providing effective support and assessing decision making ability are discussed and the article concludes with some of the implications for training, service development and practice.

Service users' experiences and views of support for decision-making.

This article presents the findings from a qualitative, participatory research project which explored how people with intellectual disabilities and/or mental health problems have, or have not been, supported to make their own decisions. The aim of the research is to help inform how supported decision-making, as required by Article 12 of the UN Convention on the Rights of Persons with Disabilities, can be effectively operationalised. The project provides an overview of experiences of support as well as identifying which supports are valued. It was conducted between July 2017 and July 2018 and was a partnership between disabled people, service providers and a University. It involved peer researchers interviewing 41 people with mental health problems and/or intellectual disabilities, in community settings, about their experiences and views of support. The key findings include that decision-making is a central aspect of people's lives. Participants discussed the positive role which decision-making can have but also how it felt when they were not supported to make their own decisions. Participants said that there were three main things that make decision-making harder: the type of decision; the role of other people; and what the outcome might be. Time was consistently identified as a very important factor. In terms of support, people said that they would like: practical support including more accessible information; emotional support including someone to talk to; and sometimes the options to choose from. There was very little mention of existing, more formal processes of support such as advance decisions or care planning. The peer researcher aspect of the project was valued by participants. The main implications of the research are for how support for decision-making should be provided including the need for an individualised approach as the support needed varies across decisions, time and people.