Managing relational autonomy in interactions: People with intellectual disabilities.

BACKGROUND: This article is about interactions that occur when someone with intellectual disabilities is engaged in everyday activities with a personal assistant (PA) or a support worker. METHOD: We examine the detail of nine hours of naturally occurring video-recorded interactions, to explore how "relational autonomy" is done in practice. Nine people with ID and seven staff took part in the research, which took place in England from 2016-17. RESULTS: We selected six extracts to illustrate different types of joint decision-making. Informed by inclusive research with a drama group of people with intellectual disabilities, we focus on the ways in which (a) future plans are discussed; (b) choices are offered during an activity; (c) people reflect on their decisions. CONCLUSION: The article concludes with discussion about the teaching and learning content of choice-making, on relational autonomy, and the practice learning for PAs, support workers and for people with intellectual disabilities.

The Meaning of 'choice and control' for People with Intellectual Disabilities who are Planning their Social Care and Support.

BACKGROUND: This paper questions consumerist assumptions in current English social care policy and aims to look behind the processes of personalization to interrogate what 'choice and control' means in the lives of a diverse group of people with intellectual disabilities. METHODS: Data were from multiple interviews and direct practice recordings with nine people using personal budgets and were analysed using an interpretative approach. RESULTS: Identity, other people and personal budget processes were all important for choice and control. People needed to build confidence in themselves as decision-makers, both through peer support and through joint decisions with trusted others. CONCLUSIONS: Practitioners need to take into account the spectrum of ways in which people may make decisions. Action needs to be taken both at the micro level of support interactions and at the macro level, with a clearer articulation of independent living in policy and strategy for people with intellectual disabilities.

At sea with disability! Transformative learning in medical undergraduates voyaging with disabled sailors.

CONTEXT: Attitudinal objectives are difficult to formulate, teach and assess; yet good attitudes are fundamental to good practice. For instance, studies highlight negative attitudes to disability in the medical student community that contrast with the self-conceptions of disabled persons. This study was designed to better understand attitudinal learning, inadequately addressed by contemporary programmes, through the application of Mezirow's 'transformative learning theory' (TLT) to a novel educational intervention. METHODS: Participating students went to sea, for voyages of 5-7 days, in tall ships operated by the Jubilee Sailing Trust. Each student was buddied with another sailor living with disability. Disabilities included cerebral palsy, loss of sight, loss of limbs and paraplegia. Students recorded their experiences using audio diaries, written logs, formal voyage reports and art work and in post-voyage seminars. The data were analysed using interpretive phenomenological analysis, and the results are considered under five themes suggested by Mezirow. RESULTS: Sixteen students were recruited, with four students sailing on each of four separate voyages. Each student recorded audio-diary entries, which had a total duration of between 10 and 212 minutes. For seven of the 16 students, the five key elements of TLT were demonstrable, suggesting that transformative learning, as described by Mezirow, was occurring. Drawing on diverse qualitative data, insights into different aspects of this transformation are provided. CONCLUSIONS: TLT can be used to characterise, and thus design, educational interventions to meet attitudinal learning objectives. Students can be helped to discover their less helpful frames of reference. In safe environments these frames can be challenged and subjected to personal and communal reflection. Drawing on audio diaries and other evidence, and in answer to critiques of contemporary medical teaching on disability, we demonstrate such transformation in students 'at sea with disability', highlighting elements that could potentially be transferred to the mainstream curriculum.

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.

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.

Third-party turns and shared knowledge: Supports and challenges to disabled people in social care and research settings.

Adopting a conversation analysis (CA) perspective, this paper explores data which include disabled people in three-party contexts, where the institutional goal is to focus on the wishes, voice and agency of the disabled person. It explores 274 occasions where a third party self-selects for a turn, during social care planning meetings and research interviews. Five broad action patterns are discussed, showing how third parties used their epistemic closeness to the disabled person in order to (1) clarify, (2) respond, (3) prompt, (4) expand and (5) challenge. The sequential consequence of these turns depended on how they were heard and taken up by other parties in the talk. The vast majority of third-party turns could be glossed as supportive to the disabled person. Third parties displayed their sensitivity towards the precise moment that they were 'needed' in the talk. Occasionally, there were challenges and counterinformings done by the third party, which could be analysed as 'epistemic traps'. These moments signaled tensions between the best interests of the disabled person and the imperative to foreground their voice.

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.

In search of a national approach to professional supervision for mental health and addiction nurses: The New Zealand experience.

A competent nursing workforce is crucial for recovery of mental health and addiction service users. Professional supervision is central to facilitating this competency. This article reports on research that scoped the current provision of professional supervision then explores possibilities for developing a standardised national approach to professional supervision for mental health and addiction nurses in New Zealand. The study involved telephone and mail surveys with nurse leaders and current supervisors from district health boards and non-government organisations. The findings indicated that the majority of those canvassed were supportive of a nationally endorsed approach. Standardisation was seen as a means of assisting in the monitoring and quality refinement of the content and provision of professional supervision, and the training of supervisors. It was also recommended that to be successful, a national approach must incorporate partnerships with significant stakeholders in the sector, including service users and Maori.

'Did you solve it yourself?': Evaluation of self narratives of discrimination by people with 'learning difficulties'.

Narratives about personal experience are shaped by the interactional context, and people are required to tell their own stories in a variety of social contexts. For people with 'learning difficulties', veracity is a particular and paradoxical problem. New policies and strategies require them to take part in public debates, while they are traditionally judged to be incompetent to be witnesses to the 'truth'. Presenting data from an inclusive research project, this paper analyses some of the micro strategies by which people with 'learning difficulties' create their own research interviews by asking questions, telling stories and evaluating their own narratives about discrimination. The interplay of different levels of identity in the data and the concept of interactional rights were found to be useful analytical tools. By doing research and speaking up for themselves, people with 'learning difficulties' can collaborate to take on new situational identities; in this context, this paper shows precisely how they evaluate their own narratives to focus on various aspects of their own more permanent identity. Practical conclusions are drawn, both for people with 'learning difficulties' and for their interlocutors, challenging assumptions of blanket incompetence.