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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.

Currently there is no research that explores professionals’ perspectives in supporting carers of a person with an intellectual disability during their relatives admission to a specialist in-patient setting. The purpose of this paper is to report the findings from the second stage of a study that explored the experiences of family carers whose relative was admitted to a specialist National Health Service assessment and treatment unit (ATU) in Wales, UK (James, 2016).

Aim: to obtain the views of professionals in relation to what they consider are the barriers and facilitators to addressing some of the experiences discussed by carers. Methods: nine professionals working in intellectual disability-specific services participated in four semi-structured interviews and one focus group (n=5) and the data were analysed using a descriptive thematic analysis process.

Three major themes were developed to represent what professionals identified as a number of individual, organisational and practical facilitators and barriers to the provision of support to carers at this time. Professionals recognised the important role they have in developing relationships with carers during the admission. Key to this relationship is effective communication, collaboration, involvement and the need to be consistently open and honest.

The small sample size could be said to be a weakness and unrepresentative and practice of other professionals. However, what professionals reported had similarities to the findings from other related research. Importantly, the findings have a practical significance in that they can be used to raise awareness and be used to inform the development of future research and practice. The sample could also be criticised for not having representation from a wider range of professionals from across the multi-disciplinary team. However, a strength of the sample is that it did have representation from three different professional disciplines with different roles and responsibilities.

Currently there is very limited research exploring the experiences of professionals in respect of supporting carers during the admission of a relative to a specialist in-patient setting. Professionals demonstrated an understanding of the impact that the additional needs and admission of their relative to an ATU could have on carers. Accordingly, they were able to recognise the important role that they, and other professionals, play in developing relationships as part of providing support to them during this time. Key to these relationships was effective communication and in particular the need to be consistently open and honest.

The findings from this study illustrate a gap between the rhetoric of policy, legislation and carer strategies, and practice of valuing and respecting the role that carers. Of particular concern is that some of the relationships that carers have had with professionals have threatened rather than positively endorsed and augmented their role and identity. These engagements with professionals therefore have had a profound effect on the way in which they have understood their value as a carer and their own sense of self. Significantly, the actions and behaviours of professionals play a key role in shaping carers views of themselves and their identity.

Currently there is no research that has explored the views of professionals in respect of support and relationships with carers at this time. The synthesis of findings from stage one of this study with professionals’ perspectives of resulted in the identification of similarities and differences in experiences as well as facilitators and barriers to support provision. In so doing, it has given clear application of the studies findings to practice. This study therefore provides an original contribution to the understanding of this area of carer experience, from the perspectives of professionals and adds to the wider literature exploring the family carer experience.

Three separate focus groups were conducted to compare the views of service users, carers and specialist health professionals on community services for adults with psychosis and learning disabilities. Participants were asked which staff, treatments or interventions and methods of working or style of service organisation make a significant contribution to helping people with psychosis and learning disabilities. Although there were few direct contradictions or conflicts between the three groups, the priorities of service users, carers and professionals often differed. Development of community services for adults with psychosis and learning disabilities should incorporate the views of service users and their carers as well as clinicians.

We describe the results of a qualitative study that explored the knowledge and views 20 adults with learning disabilities and their carers had of medication prescribed for behaviour problems. We found that the adults with mild and moderate learning disabilities can provide sensible, consistent and valuable information about their thoughts and experiences of medication prescribed when questions are asked in an open‐ended format. We also found that few people with learning disabilities were fully informed about their treatment. Nevertheless, the prescribing of such medication emerged as a positive experience, in keeping with the wishes of the majority of participants interviewed who expressed satisfaction with the medication based on perceived benefit. For the minority of participants who expressed dissatisfaction with medication, the reasons related mainly to their perceived lack of role in the treatment decision, their experience of adverse effects, a perceived lack of efficacy and a ‘desire to lead a normal life’. Alternatives to medication were discussed by both adults with learning disabilities and their carers, and the relevance of these findings to clinical practice is addressed in the paper.

I describe the development of a group in North London that aimed to increase the involvement of carers in the development and monitoring of mental health services across the borough. I enabled the carers to evaluate their experiences of the group using a participatory action research model. The evaluation was divided into two phases. Phase 1 focused on how the carers developed effective processes to facilitate the individuals in the group to represent not only their experiences but those of the collective. I describe how a critical incident facilitated this discussion and how the carers used the action research cycle to enable this change. Phase 2 enabled the group to reflect on their experiences of the group's impact upon them. The carers identified the following main themes of their experience of the group: shared experience of mental health stigma; empowerment and increased confidence; increased knowledge to enable them to care for themselves and their loved one more effectively, although this was tinged with a sense of frustration. In this process, I reflect on the vision that I had for Carers Against Stigma (CAS) as a user researcher and practitioner working with carers. I discuss the potential conflict that I faced as a practitioner and researcher initiating a carer‐led group. The theoretical implications of the individual service representative representing the views of the collective are discussed, and their needs for access and support to be involved in research and service evaluation are identified.

The purpose of this paper is to provide a brief overview of the literature to date which has focused on co-production within mental healthcare in the UK, including service user and carer involvement and collaboration.

The paper presents key outcomes from studies which have explicitly attempted to introduce co-produced care in addition to specific tools designed to encourage co-production within mental health services. The paper debates the cultural and ideological shift required for staff, service users and family members to undertake co-produced care and outlines challenges ahead with respect to service redesign and new roles in practice.

Informal carers (family and friends) are recognised as a fundamental resource for mental health service provision, as well as a rich source of expertise through experience, yet their views are rarely solicited by mental health professionals or taken into account during decision making. This issue is considered alongside new policy recommendations which advocate the development of co-produced services and care.

Despite the launch of a number of initiatives designed to build on peer experience and support, there has been a lack of attention on the differing dynamic which remains evident between healthcare professionals and people using mental health services. Co-production sheds a light on the blurring of roles, trust and shared endeavour (Slay and Stephens, 2013) but, despite an increase in peer recovery workers across England, there has been little research or service development designed to focus explicitly on this particular dynamic.

Despite these challenges, coproduction in mental healthcare represents a real opportunity for the skills and experience of family members to be taken into account and could provide a mechanism to achieve the “triangle of care” with input, recognition and respect given to all (service users, carers, professionals) whose lives are touched by mental distress. However, lack of attention in relation to carer perspectives, expertise and potential involvement could undermine the potential for coproduction to act as a vehicle to encourage person-centred care which accounts for social in addition to clinical factors.

The families of people with severe and enduring mental illness assume a major responsibility for the provision of care and support to their relatives over extended time periods (Rose et al., 2004). Involving carers in discussions about care planning could help to provide a wider picture about the impact of mental health difficulties, beyond symptom reduction. The “co-production of care” reflects a desire to work meaningfully and fully with service users and carers. However, to date, little work has been undertaken in order to coproduce services through the “triangle of care” with carers bringing their own skills, resources and expertise.

This paper debates the current involvement of carers across mental healthcare and debates whether co-production could be a vehicle to utilise carer expertise, enhance quality and satisfaction with mental healthcare. The critique of current work highlights the danger of increasing expectations on service providers to undertake work aligned to key initiatives (shared decision-making, person-centred care, co-production), that have common underpinning principles but, in the absence of practical guidance, could be addressed in isolation rather than as an integrated approach within a “triangle of care”.

Carers of people with eating disorders (EDs) experience high levels of burden which can lead to clinical levels of depression and anxiety, high levels of expressed emotion and can lead to a non-conducive environment to support recovery. The Maudsley Method skills-based workshops can empower carers to support people with ED to move towards recovery, reduce carer burden and high levels of distress. The paper aims to discuss these issues.

Adaptations have been made to the Maudsley Method skills based workshops to include evidence based approaches from cognitive remediation therapy; mindfulness and acceptance commitment therapy. The adapted workshops were assessed via a pilot study with ten carers of people with ED using a mixed method design. The Experience of Caregiving Inventory and SF-36 were used to assess aspects of caregiving and carer wellbeing, respectively pre and post intervention. Thematic analysis was used to evaluate carers’ views on the intervention.

Results indicated that carers reduced their level of burden particularly in their experience of stigma, dependency and loss. Furthermore, positive aspects of the relationship with the person with the ED improved. Thematic analysis was used to obtain feedback from carers of the workshops. Qualitative data identified that carers improved their self-awareness, understanding of ED and the techniques they could use, and increased their social support.

Further research is required to compare the original workshops with this adapted intervention.

Although this is a pilot study, the results suggest that further evidence based interventions could be added to the Maudsley Method approach to support carers.

The aim of this evaluation was to carry out an evaluation of the Just Checking activity monitoring system, which supports people with dementia in their own homes. The study was carried out with Warwickshire County Council's social services, and a number of their service users. The system was installed in the homes of six people with dementia, and used by their family carers and care professionals, whose experiences were gathered in semi‐structured interviews. In total 15 people took part in interviews, including two of the people with dementia.The system gave family carers and professionals a better insight into the activities of the person with dementia, and how they were managing in their own homes. The majority of users were surprised at the consistency of the daily pattern of activity of the person with dementia and, as a result, their view of the capabilities of the person changed. The data from the system reassured family carers and proved a useful assessment tool for professionals on which to plan care.Contrary to expectations, the monitoring system gave people with dementia more control of their lives by providing a means by which they could communicate their capabilities in their home environment.

The development of a national strategy for carers underlines the importance of making the connections between all the different policies which impinge on carers. This needs to be mirrored at a local level, where there are some moves to embed support to carers within mainstream health and social services. However, achieving positive change for carers' needs not only more coherence about carers' relationship with the whole system of care, but also better ways of monitoring services.