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.

'Getting our voices heard in research: a review of peer researcher's roles and experiences on a qualitative study of adult safeguarding policy.

BACKGROUND: Historically, disabled people have been marginalised in research that traditionally adopted a medical model perspective. Since the 1970's, there has been a shift from research on disabled people to research with disabled people with a strong emphasis on co-produced participatory research. Co-production involves disabled people working with academics to produce research and outcomes which are informed by the end user. This paper reflects on the role and experiences of peer researchers in co-producing a recent UK-wide research project called 'Getting our Voices Heard'. This project sought to identify the best approaches for people with a learning disability and their supporting organisations to influence adult safeguarding policies, across the four jurisdictions of the UK. METHODS: A co-produced participatory design was used to address the project aims; achieved through the establishment of a collaborative research team comprising academic researchers, key stakeholders and six peer researchers, each of whom had a learning disability. Semi-structured interviews were completed with senior policy makers. Following this, in each of the four Nations, an organisational case-study was completed (four in total). Organisations were purposively sampled to identify one organisation in each country which was recognised as being successful in influencing adult safeguarding policy. Data were gathered through focus groups discussions and semi-structured interviews with key stakeholders. Findings were developed into an Impact Strategy and Action Plan. Co-production methods were used throughout. RESULTS: Six individuals with a learning disability were recruited and trained to work as peer researchers, involved at key stages of the project, working alongside a wider research team. The role and experiences of the peer researchers in the context of policy are presented. Peer researchers provided largely positive first-hand accounts of their experiences. The importance of collaboration, the invaluable role of Learning Disability support organisations, and the need for additional time and resources to facilitate co-production, was noted. CONCLUSION: Whilst peer researchers were positive about their experiences, some success in promoting co-produced research and areas for improvement were evident. Collaboration at all stages would have been strengthened with research funding which enabled involvement of all team members in all research activities.

Since the 1970's, there has been a shift from research on disabled people to research with disabled people. This is often referred to as co-produced research. Co-production has a wide definition but includes disabled people working with academics to produce research and outcomes which neither group could achieve by working in isolation. This paper presents the co-production methodology used to conduct a research project called 'Getting our Voices Heard'. This project, sought to find the best way to get the voices of people with a learning disability heard inpolicy development in the UK.We explain how this research was carried out, using a co-produced participatory design. We established a research team with professional researchers from a university, who worked with peer researchers. Peer researchers are people who have lived experience of the issue being studied. In this project, we worked with six peer researchers who all had a learning disability.The experiences of the peer researchers, and ways in which the peer researchers were involved at each stage of the project are discussed. The peer researchers described feeling positive about their role and felt involved. We show that working together is important and recommend that additional time and resources  are  essential for this joint working.

'Getting involved in research': a co-created, co-delivered and co-analysed course for those with lived experience of health and social care services.

BACKGROUND: 'Getting Involved in Research' was co-created and delivered by a multi-organisational group to provide an accessible introduction to research for those with lived experience of health and social care services. METHOD: The evaluation of participants' perceptions adopted an exploratory mixed method research design and aimed to gather data to provide an in-depth understanding of the participants' experience of 'Getting Involved in Research' through the co-researchers' analysis of qualitative data using Participatory Theme Elicitation (PTE). PTE was used with the qualitative data to promote co-analysis by the course development group; analyses from an independent academic was also used to further validate the method of PTE. RESULTS: Thirty-five participants in total participated in 'Getting Involved in Research'. Age ranges varied from 19 to 73 years old. Participants were predominately female (n = 24), five males participated (n = 5) and there was one participant who identified as non-binary (n = 1). Six core themes were identified using the PTE approach: (1) A Meaningful Participatory Approach (2) Increasing the Confidence of Participants (3) Interactive Online Format (4) An Ambient Learning Environment (5) A Desire for Future Courses (6) A Balance of Course Content and Discussion. Participants in 'Getting Involved in Research' reported that the content of the training was applicable, relevant, fostered awareness of research methods and anticipated that it would support their involvement in research. CONCLUSION: 'Getting Involved in Research' has contributed innovatively to the evidence base for how to engage with and motivate those who have experience of health and social care to become actively involved in research. This study demonstrates that 'Getting Involved in Research' may be helpful to train those with lived experience and their care partners however, further research following up on the application of the course learning would be required to ascertain effectiveness. FUTURE DIRECTIONS: Future research should explore methods to apply research skills in practice to further develop participants' confidence in using the skills gained through 'Getting Involved in Research'.

The aim of this study was to gather information to help us understand the experience of participants' undertaking a research course called 'Getting Involved in Research'. A group of individuals including those with lived experience of health and social care services, academics, community and voluntary sector workers and a representative from the Department of Health in Northern Ireland worked together to develop a course to encourage and support people to engage with research. The 'Getting Involved in Research', course was designed to provide an understandable introduction to research for those people with lived experience of health and social care. We did this because research in health and social care sector should involve the patients and public who it is intended to help. The evaluation of the course had two distinct phases; we asked course participants to complete a survey before and after the course (pre- and post-course survey) and also asked them to complete a journal reflecting on their experiences after each lecture. This paper gives an overview of the profile of course participants and their responses to the survey questions. The survey answers were analysed using an approach to analysing information which encourages involvement from people with a range of experience of research methods, (known as Participatory Theme Elicitation). Thirty-five participants in total participated in 'Getting Involved in Research'. Age ranges varied from 19 to 73 years old. Participants were predominately female (n = 24), five males participated (n = 5) and there was one participant who identified as non-binary (n = 1). Participants in 'Getting Involved in Research' reported that the content of the course was relevant, encouraged awareness of research methods and encourage their future involvement in research.

Transitioning to adulthood from residential childcare during COVID-19: Experiences of young people with intellectual disabilities and/or autism spectrum disorder in South Africa.

For young people with intellectual disabilities and/or autism, the transition from children's residential care into adulthood during COVID-19 has been difficult.Opportunities for greater independence were blocked because of the lockdown.Some of these young people experienced an increase in depression or other mental health difficulties.But more time at home due to public health restrictions also helped to deepen the relationship with caregivers.Service continuity is crucial, both in person and online, to support care leavers with intellectual disability and/or autism, as well as training and support to caregivers to continue with independent and interdependent living programmes at home. BACKGROUND: This study focuses on young people with intellectual disabilities and/or autism who, due to child welfare concerns, have grown up in children's residential care and are now transitioning out of care at the age of 18 years towards young adulthood. This transition is termed "care leaving" and the young people in transition "care leavers". The care leaving transition can be particularly difficult for young people with intellectual disabilities and/or autism. These challenges can be magnified in a time of a global crisis like COVID-19, which has resulted in countries being on lockdown and care leavers' transitions being curtailed. Many mental health problems have emerged due to the COVID-19 outbreak and resultant lockdown that may negatively impact on the care leaving transition of young people with intellectual disabilities. METHODS: Semi-structured interviews were conducted with six care leavers with intellectual disabilities and their three caregivers in June 2020 in the Cape Peninsula region of South Africa to explore the impact of COVID-19 on their transitional journeys. FINDINGS: Three core themes emerged from the analysis: young people evidenced regression of independence, rather than the expected growth in young adult independence, due to disruptions to routines and opportunities to move out into the world; some young people experienced an exacerbation or emergence of mental health problems, which impacted on their transition to young adulthood; and young people and their caregivers experienced a deepening of caregiver relationships, which enhanced the transition of the care leaver. CONCLUSIONS: Services must continue to facilitate progress towards independence and promote personal and caregiver well-being. Support service for care leavers with intellectual disabilities should be essential services, offered in person or online while adhering to COVID-19 regulations. Caregivers should be trained in continuing independent and interdependent living programmes for care leavers in their care, supported through in person or online training, mentoring and supervision. Service continuity is recommended to avoid the contraction of young people's social world at a time when it should be opening up.

Rights Based, Participatory Interviews with Disabled Children and Young People: Practical and Methodological Considerations.

There has been an increased emphasis on the voice of the child since the ratification of the United Nations Convention on the Rights of the Child in 1991. Since that time, health and social care researchers have increasingly involved disabled children and young people in research, rather than relying on the views of adults as proxies, for example, parents and professionals. Drawing on doctoral research and the extensive experience of the authors, the aim of this article is to critically reflect on "what worked" along with the challenges of interviewing the children and young people who took part. Practical and methodological issues, such as the need for thorough preparation, the interview process, understanding the children and young people and managing the presence of others are discussed. Finally, recommendations are made for future researchers, including making participation fun, using a sensitive and individualized approach and conducting multiple visits. It is only by considering these factors that we can meaningfully involve disabled children and young people and facilitate their participation in research interviews. Emphasis here is on the practical issues rather than ethical issues that have been published elsewhere.

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.

Ethical considerations when conducting research with children and young people with disabilities in health and social care.

Background Rights-based approaches for conducting research with children and young people are now widely accepted by those working in the field. Such approaches focus on the voice of the child and are underpinned by a firm recognition that children are experts on their own lives. However, children and young people with disabilities are less likely to take part in research. Aim To draw on doctoral research conducted with children and young people with disabilities to explore the ethical issues that arose concerning access, recruitment, consent, anonymity, confidentiality and sensitive issues, as well as what mitigated these issues. Discussion Research with children and young people with disabilities can pose additional ethical challenges. There is a growing body of literature about this area, but it needs further development. Conclusion Additional planning and preparation are vital in ensuring that children and young people with disabilities can participate in research in a meaningful way and that researchers conduct studies ethically. Implications for practice This paper has clear implications for research and nursing practice in terms of communicating with children and young people with disabilities, enabling them to express their views and participate in decisions about their lives.

Supported decision making: a review of the international literature.

Supported decision making (SDM) refers to the process of supporting people, whose decision making ability may be impaired, to make decisions and so promote autonomy and prevent the need for substitute decision making. There have been developments in SDM but mainly in the areas of intellectual disabilities and end-of-life care rather than in mental health. The main aim of this review was to provide an overview of the available evidence relevant to SDM and so facilitate discussion of how this aspect of law, policy and practice may be further developed in mental health services. The method used for this review was a Rapid Evidence Assessment which involved: developing appropriate search strategies; searching relevant databases and grey literature; then assessing, including and reviewing relevant studies. Included studies were grouped into four main themes: studies reporting stakeholders' views on SDM; studies identifying barriers to the implementation of SDM; studies highlighting ways to improve implementation; and studies on the impact of SDM. The available evidence on implementation and impact, identified by this review, is limited but there are important rights-based, effectiveness and pragmatic arguments for further developing and researching SDM for people with mental health problems.