Tackling the escalating burden of care in Uganda: a qualitative exploration of the challenges experienced by family carers of patients with chronic non-communicable diseases.

BACKGROUND: Family carers face challenges that could significantly affect their health and the health of those they care for. However, these challenges are not well documented in low-income settings, including Uganda. We explored the challenges of caring for someone with chronic non-communicable disease (NCD) in Uganda. METHODS: We conducted a qualitative exploratory study at Hospice Africa, Uganda (an urban setting) and Hampton Health Center (a rural setting) in Uganda in February and March 2021. Family carers (n = 44) were recruited using snowball and purposive sampling techniques. Data were collected using focus group discussions and in-depth interviews, gathering family carer perspectives of (a) their caring role (b) their support needs, and (c) attitudes of the wider community. In total, four focus group discussions and 10 individual interviews were completed. RESULTS: The average age of carers was 46 years old. The majority of family care was provided by female relatives, who also experienced intersectional disadvantages relating to economic opportunities and employment. Family carers carried a huge burden of care, experiencing significant challenges that affected their physical health, and material and emotional well-being. These challenges also affected the quality of care of the patients for whom they cared. Carers struggled to provide for the basic needs of the patient including the provision of medication and transport to health facilities. Carers received no formal training and limited support to carry out the caring role. They reported that they had little understanding of the patient's illness, or how best to provide care. CONCLUSIONS: As NCDs continue to rise globally, the role of family caregivers is becoming more prominent. The need to support carers is an urgent concern. Family carer needs should be prioritised in policy and resource allocation. The need for a carer's toolkit of resources, and the enhancement of community support, have been identified.

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.

Freely Available Virtual Reality Experiences as Tools to Support Mental Health Therapy: a Systematic Scoping Review and Consensus Based Interdisciplinary Analysis.

The primary purpose of this article is to review the potential therapeutic value of freely available VR content as an addition to the practitioners 'toolkit'. Research has shown that virtual reality (VR) may be useful to extend existing guided imagery-based practices found in traditional mental health therapy. However, the use of VR technology within routine mental health practice remains low, despite recent reductions in equipment costs. A systematic scoping review and interdisciplinary analysis of freely available VR experiences was performed across two popular online databases (SteamVR and Oculus.com). A total of 1785 experiences were retrieved and screened for relevance with 46 meeting the inclusion criteria. VR content was then reviewed for potential therapeutic value by an interdisciplinary panel with experience across a number of therapeutic interventions including cognitive behavioural therapy, Rogerian counselling, mindfulness-based therapies. and family therapy. Eleven (22%) of the 50 freely available VR experiences were reported to have therapeutic potential as tools to support routine mental health therapy. These included support with the following mental health issues-low mood, social anxiety, stress reduction and fear of heights. Guidance of a qualified mental health practitioner was recommended in all cases to maximise the benefit of the VR experiences retrieved. While the quality is variable, freely available VR experiences may contain valuable content that could support mental health therapy. This includes as a homework activity or as an initial setting for case formulation and behavioural experiments.

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.

Trauma Informed Child Welfare Systems-A Rapid Evidence Review.

Trauma informed care (TIC) is a whole system organisational change process which emerged from the seminal Adverse Childhood Experiences (ACE) study, establishing a strong graded relationship between the number of childhood adversities experienced and a range of negative outcomes across multiple domains over the life course. To date, there has been no systematic review of organisation-wide implementation initiatives in the child welfare system. As part of a wider cross-system rapid evidence review of the trauma-informed implementation literature using systematic search, screening and review procedures, twenty-one papers reporting on trauma-informed implementation in the child welfare system at state/regional and organisational/agency levels were identified. This paper presents a narrative synthesis of the various implementation strategies and components used across child welfare initiatives, with associated evidence of effectiveness. Training was the TIC implementation component most frequently evaluated with all studies reporting positive impact on staff knowledge, skills and/or confidence. The development of trauma-informed screening processes, and evidence-based treatments/trauma focused services, where evaluated, all produced positive results. Whilst weaknesses in study design often limited generalisability, there was preliminary evidence for the efficacy of trauma-informed approaches in improving the mental and emotional well-being of children served by community-based child welfare services, as well as their potential for reducing caregiver stress and improving placement stability.

An evaluation of mental health service provision in Northern Ireland.

Although Northern Ireland has high levels of mental health problems, there has been a relative lack of systematic research on mental health services that can provide an evidence base for legal, policy, and service developments. This article aims to provide a review of the central issues relating to mental health service provision in Northern Ireland, and to gather the perceptions of different stakeholders of these services. The study utilised in-depth qualitative interviews, focus groups, and an online survey to collect data from respondents throughout the region. This method involved the completion of semistructured interviews with significant mental health commissioners and senior managers, and with service-users and their key workers. Focus groups sessions were also completed with mental health professionals, service-users, and carers. Data collection occurred between December 2014 and June 2015. Thematic analysis was used to identify key issues. The findings identified that considerable progress had been made not only in the development of mental health services in the last decade, but also highlighted the significant limitations in current services. Most notably, strengths in provision included the transition from long-stay hospital care to community-based services and person-centred approaches. The researchers identified the need to improve funding, address problems with fragmentation, and gaps in service provision. Based on these findings, the authors consider the implications for practice and policy relating to the human and organisational aspects of service development. In particular, services should be developed focusing on a recovery ethos and on person-centred and relationship-based approaches. The needs of carers should additionally be considered and programmes developed to tackle stigma.

A qualitative evaluation of the provision of bereavement care accessed by service users living in a Health and Social Care Trust area in Northern Ireland.

Within the health and social care sector in the United Kingdom, the management of death and bereavement has become increasingly challenging. This service evaluation sought to explore the bereavement care offered to individuals living in one Health and Social Care Trust catchment area of Northern Ireland. Qualitative interviews were conducted with key government and voluntary agency staff. The findings indicated that much of the bereavement provision is based on the interest and initiative of individual staff members, with few processes to assess the level of bereavement care needed and those best skilled to provide it. Recommendations are made for a bereavement care strategy that outlines a bereavement needs assessment process, identifying the scope of interventions and protocols for practice.