Transforming Practice with Older People through an Ethic of Care.

This article explores the relevance of deliberative practices framed by feminist care ethics to social work practice with older people. It draws on two connected projects which brought together older people: practitioners and academics. The first was a participatory research project in which the significance of care to well-being in old age emerged. The second was a knowledge exchange project which generated learning resources for social care practice based on the research findings of the first project. Here we analyse selected transcripts of recordings from meetings of both projects to consider the ways that discussions about lived experiences and everyday lives demonstrate care through this dialogue. Using this analysis, we propose that care ethics can be useful in transforming relationships between older people and those working with them through the creation of hybrid spaces in which 'care-full deliberation' can happen. We argue that such reflective spaces can enable transformative dialogue about care and its importance to older people and offer a counterbalance to the procedurally driven environments in which much social work practice takes place and can support practice more attuned to the circumstances and concerns of older people.

Service user led organisations in mental health today.

BACKGROUND: Since 1990, health policy in England has stressed the importance of user involvement in shaping and delivering services. AIMS: To explore mental health service user-led organisations (ULOs) in England, as they interact with decision-makers to bring about change desired by them with a focus on institutional norms behaviour and specialised knowledge impacting service users' relationships with services. METHOD: An ethnography of five ULOs in two provider organisations (NHS Trusts) including observing their meetings and interactions with decision-makers, conducting in-depth interviews and collecting reflective diaries kept by two members of each group. RESULTS: During the study, one group ceased to operate. This was a group which refused to adopt the institutional rules and norms of managerial discourse. The other four groups survived by navigating the changing environment which existed at the time of the study, although often at some cost. Themes of autonomy and leadership were also identified. CONCLUSION: The current environment is one of the organisational complexity and change and the place of ULOs is an ambiguous one as they strive to maintain autonomy whilst at the same time being an acceptable voice to managers.

Information and care: A relational approach.

This article explores how the provision of information about dementia impacts on carers and the caring relationships in which they are involved. Narrative interviews were undertaken with 25 carers who had undertaken the Alzheimer's Society - run Carer Information and Support Programme in one of seven sites across London and the South East. Thematic analysis identified two major themes relating to the impact of information on carer and caring relationships ('understanding and care' and 'emotional impact of information'), and another theme relating to the context within which the information was provided and shared ('relational practices in information-giving and receiving'). Findings suggest that while information, particularly in the form of new knowledge about how dementia progresses, helps to improve understanding and increase confidence, competence and a sense of security and achievement in caring practices, it can also confound and complicate caring practices in ways that reflect and reinforce previously difficult relationships. Providing information in the context of carers' support was important for most participants but others were less able to benefit from this, especially where they felt unrecognised or where the timing of information felt inappropriate to their needs. Our analysis complements and extends previous scholarship emphasising the relational nature of care by showing how information can both enhance and complicate care relationships, depending on both specific care contexts and on how carers experience the context of information provision.

Service user governors in mental health foundation trusts: accountability or business as usual?

CONTEXT: National Health Foundation Trusts present opportunities for individual mental health service users to be active in the governance of trusts. This is one of a range of mechanisms for patient and public involvement and one which promotes an individual rather than collective approach to involvement. OBJECTIVE: Within the context of a broader study of the impact of service user involvement in mental health services, the objective of this article was to explore the experience of service user governors in foundation trusts and their capacity to hold boards to account. DESIGN, SETTING AND PARTICIPANTS: The Council of Governors in three foundation trusts were observed for a year. Focus groups with service user governors were undertaken in each trust. RESULTS: Service users had different expectations and understandings of the role and approached it in different ways. Key themes that emerged concerned: the role of a governor, conduct and content of meetings, agenda setting, relationships and representation. DISCUSSION AND CONCLUSIONS: The experiences of mental health service user governors need to be understood within the complex environment of patient and public involvement in general and of mental health service user involvement in particular. The dislocation of the service user governor role from other forms of service user activity and involvement result in confusion about how notions of holding a trust to account and representation of other service users can be addressed within a boundaried institutional environment.

Service user involvement: impact and participation: a survey of service user and staff perspectives.

BACKGROUND: Over the last 20 years governments around the world have promoted user involvement in an effort to improve the quality of health services. Despite the growing emphasis placed on user involvement in England, there is a paucity of recent studies looking at how service users and professionals perceive the outcomes of user involvement policies. This study aimed to examine the overall levels of participation in service user involvement in mental health services among professionals and service users and ascertain their views on the impact of involvement activity on various areas of service delivery. METHODS: A cross-sectional survey of service users and providers within community mental health services. The sampling was carried out across three mental health Trusts, two serving people living in inner-city areas and a third covering a mixed rural/urban population. A questionnaire with closed and open ended questions was used to gather the responses of service users and frontline professionals. As a mixed methods study, the analysis consisted of both quantitative and qualitative approaches. RESULTS: Three hundred and two service users responded to the survey with a response rate of 48%. One hundred and forty three frontline mental health professionals, 26.8% of those approached submitted questionnaires. Almost half of service users (N=138, 45.7%,) and healthcare professionals (N=143, 55.9%) reported having been involved in some form of user involvement activity. Although there were some differences in the responses of service users and frontline professionals, both groups reported that service user involvement was having a positive impact. CONCLUSIONS: The findings show that, within the three mental health trusts examined in this study, service user involvement has become widespread and is perceived by both staff and service users to be a good policy. The study had some important limitations. The questionnaire used was based on existing literature, however it was not subjected to psychometric testing. In addition, response rates were low, particularly among professionals. Despite the limitations, the findings are encouraging, offering important of insight into views and experiences of service users and healthcare staff. Further studies are needed to assess and investigate the topic on a national level.

New jobs old roles - working for prevention in a whole-system model of health and social care for older people.

The Partnerships for Older People Projects programme provided government funding for local and health authorities to pilot prevention and intervention services in partnership with the voluntary sector and older people between 2006 and 2009. This local evaluation of a pilot in southern England undertaken between 2007 and 2009 used a Theory of Change approach to gathering and reflecting on data with different groups involved in the delivery of this whole-system based model of prevention. The model was delivered in the same way in seven social services locality areas within a large county authority. The method of data gathering enabled structured reflection on the implementation, development and projected outcomes of the model and a consideration of the key learning of working in a whole-system way with partners and stakeholders. The whole-system model, although complex and challenging to implement, was considered overall to have been a success and provided significant learning for partners and stakeholders on the challenges and benefits of working across professional and sectoral boundaries. New posts were created as part of the model. Two of these, recruited to and managed by voluntary sector partners, were identified as 'new jobs', but echoed 'old roles' within community and voluntary sector based health and social care. The authors reflect on the parallels of these roles with previously existing roles and ways of working and reflect on how the whole-system approach of this particular pilot enabled these new jobs to develop in particularly appropriate and successful ways.

Social participation in health in Brazil and England: inclusion, representation and authority.

AIM: This article offers a brief description and analysis of public participation in health in Brazil and England in order to highlight different motivators and tensions within an acceptance of participation as official policy. SOURCES/METHODS: The article draws on a range of research in both countries and an analysis of official documents relating to participation. It is based on collaboration between researchers deriving from broad programmes of work on public participation in which the authors are involved. ARGUMENT: There is a tension between different principles underpinning collective public involvement in health both within and between countries. Different aspirations or claims have been made about what such participation will achieve and there are trade-offs between design principles that have consequences for issues such as who takes part and thus also for what can be achieved. The democratic origins of public participation are more evident in the Brazilian situation than in England, but there are still questions about the inclusivity of the practices through which this is achieved. The English picture is both more diverse and dynamic, but formal decision-making power of participatory forums is less than in Brazil. Whilst social justice claims for participation have been made in both countries, there is as yet limited evidence that these have been realized.

Achieving care and social justice for people with dementia.

This article draws on two studies that have used an ethic of care analysis to explore lay, nursing and social work care for people with dementia. It discusses the political as well as the practice application of ethic of care principles and highlights the necessity to understand both what people do and the meanings with which such practices are imbued in order to identify ;good care' and the relationship between this and social justice. Examples of care for people with dementia are discussed by reference to core principles of an ethic of care: attentiveness, responsibility, competence, responsiveness and trust. These illustrate the potential for the development of a shared language within which different disciplines, lay carers and people with dementia can communicate about how needs could best be met in complex and difficult circumstances.

Frail bodies, courageous voices: older people influencing community care.

Involving frail older users of health and social care services in decision making presents particular challenges for those committed to hearing the voices of service users. Age Concern Scotland initiated a project in Fife, the User Panels project, intended to enable older people who were unable to leave their homes without assistance to meet together to develop a collective voice expressing the needs and experiences of older service users. This paper reports on an evaluation of that project. It considers methodological questions posed by the evaluation of projects which aim to empower users, as well as discussing key findings from the evaluation. Older people were recruited through contacts in service agencies and other local organizations. The largest group was aged between 86 and 90 years and all were experiencing difficulties relating to poor health, physical frailty or disability. The project was based on a belief in the value of meeting together as a means through which people could develop the confidence to express their views. Those who became members of the panels valued this experience and reported intrinsic benefits related to the social contact, opportunities for learning and development of self-esteem. Evidence concerning enhanced capacity to exercise control over key aspects of their lives was less convincing. The work of the panels was generally well received by local social work and health agencies and had influenced local action in some areas. Responses to some issues raised by the panels generated a less positive response and the article considers reasons for this. The model is considered to demonstrate benefits both for the older people who become involved and for officials seeking to improve the sensitivity of services to the needs of older people.