A Seat Around the Table: Participatory Data Analysis With People Living With Dementia.

The involvement of "people with experience" in research has developed considerably in the last decade. However, involvement as co-analysts at the point of data analysis and synthesis has received very little attention-in particular, there is very little work that involves people living with dementia as co-analysts. In this qualitative secondary data analysis project, we (a) analyzed data through two theoretical lenses: Douglas's cultural theory of risk and Tronto's Ethic of Care, and (b) analyzed data in workshops with people living with dementia. The design involved cycles of presenting, interpreting, representing and reinterpreting the data, and findings between multiple stakeholders. We explore ways of involving people with experience as co-analysts and explore the role of reflexivity, multiple voicing, literary styling, and performance in participatory data analysis.

Indirect payments: when the Mental Capacity Act interacts with the personalisation agenda.

This paper reports findings from a study that aimed to explore how practitioners were bringing together the demands of the personalisation agenda, in particular the offer of direct payments (DPs), with the Mental Capacity Act, and to investigate current practices of offering and administering indirect payments for people who lack capacity to consent to them, including the use of 'suitable person' proxies under the new regulations (DH, 2009). The study adopted a qualitative interview-based design; participants were social work practitioners (67) and recipients of 'indirect' payments (18) in six local authorities in England in 2011-2012. The paper reports on five key decision-making points in the indirect payments process: the decision to take on an indirect payment, the assessment of mental capacity, the identification of a suitable person, the establishment of the care recipient's best interests and the decisions about how to execute the indirect payment. We found that practitioners and suitable people had different experiences of the system, although in both cases, there was overarching support for the benefits of enabling people who lack capacity to consent to a DP to receive their social care funding in the form of an 'indirect' payment via a proxy suitable person.

Beginning to explore the experience of managing a direct payment for someone with dementia: The perspectives of suitable people and adult social care practitioners.

Following legal improvements made around mental capacity together with the Health and Social Care Act, it is now possible for a direct payment to be paid to a 'Suitable Person' to manage on someone's behalf to purchase directly care and support services. People with dementia are a key group affected by this change in England of adult social care. We interviewed nine social care practitioners and seven Suitable People for people with dementia across five English local authorities to begin to examine their experiences of this new method of social care provision. Findings from thematic analyses suggest positive outcomes and multiple beneficiaries, but some challenges: potentially inappropriate processes, support planning, divergence in attitudes towards care and support outcomes. Implications for practice include obfuscation of recipients' and Suitable People's best interests and supporting practitioners to explore fully clients' aspirations for care and support.

Ethics of assertive outreach (assertive community treatment teams).

PURPOSE OF REVIEW: Assertive outreach, also known as assertive community treatment, is a well established service model in several countries for people with severe and enduring mental health problems who do no engage with psychiatric services. However, it has been criticized for being coercive and paternalistic. The present review considers a number of recent contributions to the debate concerning the ethics of assertive outreach. RECENT FINDINGS: Assertive outreach brings into sharp focus a number of ethical issues that affect most mental health services, but it also generates new ones, primarily whether delivery of a service to people who are refusing it and are not legally bound to accept it can be justified. Several authors have grappled with these issues, mainly through using traditional principles of ethical treatment based on professional values, and this paper reviews such attempts at resolving those dilemmas. In so doing, it reveals the limitations of such approaches. SUMMARY: In conclusion, the present review suggests an alternative ethical basis for supporting delivery of assertive outreach services to a reluctant client group, which focuses more on the client's values and areas of assistance with which they express genuine appreciation and satisfaction.

Best interests decisions: professional practices in health and social care.

This paper reports on data collected in 2011 from a national study about the operation of the best interests principle, a key feature of the Mental Capacity Act (MCA) 2005 for England and Wales. The objective was to provide a picture of current professional practices in best interests decision-making. Four contrasting sample sites were selected, in which National Health Service trusts, social care and other organisations were recruited to participate. A multimethod design was followed, including an online survey with 385 participants, followed by qualitative research through a telephone survey of 68 participants, and face-to-face semi-structured interviews following up 25 best interests cases, with different perspectives on the process in 12 of those cases. The current paper reports only on the qualitative findings. The findings indicate that the MCA was successful in providing a structure for these practitioners, and that the five principles of the MCA were in general adhered to. A variety of perceived risks led to best interests processes being undertaken, and a typical scenario was for a period of hospitalisation or ill health to trigger a best interests decision process about a social care and or a life decision. The study supported previous research in finding the notion of capacity the most difficult aspect of the MCA, and it provides evidence of some specific capacity assessment practices, including problematic ones relating to 'insight'. Best interests decisions were often made by consensus, with practitioners taking on different roles within the process. Meetings played a key part, but other ways of involving people lacking capacity and significant others were also important. It was recommended that the issues highlighted in this research could be clarified further in the Code of Practice, or within risk guidance.