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There has been considerable discussion about the benefits of health and social care integration over the last decade but less research on the purpose and effectiveness of carer and user involvement in service changes and service evaluation. The paper aims to report the findings of a study of two learning disabilities services in Wales that undertook co-location in a children development centre.

The study investigated whether carers of children with learning disabilities had any knowledge of organisational changes that occurred as a result of co-locating services. The study used a mixed method approach. The authors conducted semi-structured interviews with all parental representatives on the service planning groups and then asked local staff to facilitate a survey to parents of children with learning disabilities in their area.

Carers in both locations were mainly unaware of any changes, unless they were personally involved in service changes through advocacy or parental support groups. Carer responses mainly reflected national debates, such as service cuts, rather than the local context. Whilst there was significant support for co-location in general, parental views differed considerably on the merits of service changes depending on the needs of their own child.

These results caution against assuming a simple pathway from parental views of local services to defining service needs to plan new services. The authors argue that parents lack sufficient knowledge of organisational changes to make an informed decision on whether these changes would bring about service improvements. Implications for research and professional practice are spelled out.

Background: historical assumptions and knowledge about personality disorders (PDs) have inhibited efforts to improve PD services. Public and patient involvement in research has become a requirement of UK health services research. The potential for people with personal experiences of PD to ‘coproduce’ research knowledge as a means to transform PD services is largely unexplored.Objectives: to consider the extent to which research teams on two recent projects have ‘coproduced’ knowledge about PD, and the potential impact of coproduction on research findings and service delivery.Setting: two qualitative research projects were conducted by teams comprising conventional academic, clinical, service user and carer researchers. Reflective writing by researchers was analysed thematically to explore research objectives.Findings: researchers reported that their high expectations of research coproduction were mostly met, that findings would have been different without involvement of service user and carer researchers, and that the research would have wider credibility because of their involvement.Conclusions: coproduction is characterised by enabling perspectives from outside the conventional clinical‐academic health research team to inform the research decision‐making process, and by self‐conscious reflection to make explicit how findings are shaped as a result. The potential to improve PD services by coproducing knowledge was demonstrated.

In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in research is underexplored. The purpose of this paper is to explore carers’ views and experiences of involvement in research and development (R&D) work.

A qualitative study was conducted, consisting of 12 individual interviews with carers from different local Swedish carer organizations.

Core findings included carers’ discussions of the perceived challenges and benefits of their involvement in research, both generally and more specifically, in the context of their involvement in the development of a national carer strategy.

Limitations included the relative lack of male carer participants and the convenience sample.

Authentic carer involvement in research demands a high level of engagement from researchers during the entire research process. The provided CRAC framework, with reference to the themes community, reciprocity, advocacy and circumstantiality, may help researchers to understand and interpret carer involvement in research and provide the prerequisites for their involvement.

There is a dearth of studies that systematically examine carer involvement in research. This paper attempts to redress this gap by providing a nuanced analysis of carer involvement in R&D work from the perspective of carers themselves.

Drawing partly on her own experience, Joanna Fox seeks to unpack the expertise that service users bring to the design and delivery of mental health services. Service user involvement cannot be imposed by policy diktat from above, she argues. Rather, it must be nurtured at the grass roots, by allowing service users to take control over their own lives, and their care and treatment.

This paper describes an ongoing process of engagement with carers of people with intellectual disabilities currently being monitored by an out of area service for both carers of people placed both in area and out of area within a local Mental Health Learning Disabilities team in South London.

Using a series of consultation events, carers were asked to participate in a free dialogue which focussed on everyday issues for carers. This included financial implications of caring, knowledge of care pathways/systems in care, carer's needs and expectations and the support they currently receive.

This paper highlighted a number of issues and concerns that carers face in their daily lives when supporting one or more people. These include lack of recognition, financial difficulties, lack of training and support.

This project offered a valuable insight into current carer perceptions and will help develop further discussion and promote greater engagement by services and mutual understanding with this often neglected group.

Drawing partly on personal experience, the author of this article seeks to unpack the expertise that service users bring to the design and delivery of mental health services. Service user involvement cannot be imposed by policy diktat from above, she argues. Rather, it must be nurtured at the grass roots, by allowing service users to take control over their own lives, and their care and treatment.

This paper aims to describe the challenges and rewards of service user and carer involvement in clinical psychology training as experienced in one training centre.

After outlining the major challenges of involvement in higher education and in clinical psychology training, the paper describes the work carried out by the authors. Members of the service user and carer advisory group Salomons Advisory Group of Experts by Experience (SAGE) recount their experiences of working with them in clinical psychology and Increasing Access to Psychological Therapies (IAPT) training. The challenges of inclusion and specific approaches that are used to work with these are explored.

Members of SAGE have experienced their contributions to the work in positive ways. However, inclusion in this context requires everyone involved to fully acknowledge the social and historical barriers in order to work together to overcome them.

Some of the approaches to meeting the challenges of inclusion in doctoral level clinical training may be applicable in other places.

In the authors' experience, true inclusion means openness to the authoritative voices of people not normally viewed as educators. A parallel question is the degree to which professionals feel safe to admit to service user experience or to draw upon other aspects of their personhood while working professionally. This may be crucial for successful partnership.

The authors are still on this journey of inclusion, and hope that by sharing some of their experiences of its complexities that they may help illuminate some elements of others' journeys.

The purpose of this paper is to assess the impact of a mental health carers’ research reference group on mental health research in the Heart of England region.

The methodology was a co-produced participatory evaluation, and the research was co-produced by the group. The design involved a literature review of carers’ involvement in UK mental health research, and collection of secondary data (group records) and primary data from researchers, group members, and facilitators. Analysis was initially thematic, then synthesised.

The group’s work had a positive impact on researchers and group members, and to some extent on mental health research and networks more widely. No negative impact was identified.

The researchers were not able to contact or include everyone who had been involved with the group. Some of those who did not give input may have felt less positive about the group than those who did respond. Co-production does not signify equality. Evaluation inevitably involves bias.

The conclusion is that mental health carers have a unique and positive contribution to make to mental health research, and have the right to be involved in such research in a non-tokenistic way. This has practical implications for mental health and mental health research services.

This is the first mental health carer-controlled evaluation of a mental health carer research reference group. Mental health carers conducted the research and wrote this paper, giving a perspective rarely found in the literature. This has value for people working in, studying, and researching mental health, and for other mental health carers.

The purpose of this paper is to summarise findings of a review of service user and carer involvement in safeguarding and recommendations for good practice.

The study involved a review of selected literature and a consultation exercise with experts in the field of adult safeguarding and telephone interviews with 13 Adult Safeguarding Leads across England and Wales.

Service users value rights, independence, choice and support. Adult Safeguarding policy sets out an expectation of service user involvement in the process and expects agencies to balance rights to self‐determination with properly managed risk. In practice, agencies tend to be risk‐averse and service users often do not feel involved in their safeguarding processes. Processes such as collaborative risk enablement, training and capacity building, working with BME groups and evaluation of involvement help. Good practice examples of involvement in Safeguarding Boards or local forums, developing new methods of user feedback and community involvement were found. Recommendations include more involvement of service users in research, more effective forms of involvement of groups who may be more excluded, shared responsibility for risk, and more training in rights legislation.

The paper offers recommendations for good practice in improving involvement in adult safeguarding, which is a requirement and an essential component of delivering good services to vulnerable adults.

Service user involvement in health and social care is now widespread, but there is little knowledge of how to involve the most vulnerable service users who are in need of protection, or how to balance risk and empowerment. This paper addresses the dilemmas facing Adult Protection staff, summarises the experience of practitioners based on the first decade of adult safeguarding work and sets out guidance for improving practice.

This article reports the findings of a national survey of the consultation of people with learning difficulties by social services departments in the development of adult protection procedures and guidelines. The survey also considered the consultation of other service users, carers and family, and staff. Despite the rhetoric of user involvement in adult protection literature, low levels of consultation for people with learning difficulties were found.