Power, empowerment, and person-centred care: using ethnography to examine the everyday practice of unregistered dementia care staff.

The social positioning and treatment of persons with dementia reflects dominant biomedical discourses of progressive and inevitable loss of insight, capacity, and personality. Proponents of person-centred care, by contrast, suggest that such loss can be mitigated within environments that preserve rather than undermine personhood. In formal organisational settings, person-centred approaches place particular responsibility on 'empowered' direct-care staff to translate these principles into practice. These staff provide the majority of hands-on care, but with limited training, recognition, or remuneration. Working within a Foucauldian understanding of power, this paper examines the complex ways that dementia care staff engage with their own 'dis/empowerment' in everyday practice. The findings, which are drawn from ethnographic studies of three National Health Service (NHS) wards and one private care home in England, are presented as a narrative exploration of carers' general experience of powerlessness, their inversion of this marginalised subject positioning, and the related possibilities for action. The paper concludes with a discussion of how Foucault's understanding of power may help define and enhance efforts to empower direct-care staff to provide person-centred care in formal dementia care settings.

A mixed-method investigation of patient monitoring and enhanced feedback in routine practice: Barriers and facilitators.

OBJECTIVE: To investigate the barriers and facilitators of an effective implementation of an outcome monitoring and feedback system in a UK National Health Service psychological therapy service. METHOD: An outcome monitoring system was introduced in two services. Enhanced feedback was given to therapists after session 4. Qualitative and quantitative methods were used, including questionnaires for therapists and patients. Thematic analysis was carried out on written and verbal feedback from therapists. Analysis of patient outcomes for 202 episodes of therapy was compared with benchmark data of 136 episodes of therapy for which feedback was not given to therapists. RESULTS: Themes influencing the feasibility and acceptability of the feedback system were the extent to which therapists integrated the measures and feedback into the therapy, availability of administrative support, information technology, and complexity of the service. There were low levels of therapist actions resulting from the feedback, including discussing the feedback in supervision and with patients. CONCLUSIONS: The findings support the feasibility and acceptability of setting up a routine system in a complex service, but a number of challenges and barriers have to be overcome and therapist differences are apparent. More research on implementation and effectiveness is needed in diverse clinical settings.

Communication with children about sickle cell disease: A qualitative study of parent experience.

OBJECTIVES: This study aimed to explore how parents communicate with children affected by sickle cell disease, a condition associated with social and cultural complexities that pose risks to open parent-child communication. DESIGN: A contextualist approach informed the qualitative exploration of parent experience using an individual interview design. METHODS: Twelve semi-structured interviews were conducted with parents whose child had a diagnosis of sickle cell disease. Interviews were audio-recorded, transcribed verbatim, and analysed using inductive thematic analysis. RESULTS: Parental communication was aimed at educating and protecting children from the physical and emotional effects of SCD in an age appropriate way. Parents commonly described avoidant communication and a small number described using this as a more predominant approach. This appeared to relate to fears about SCD, stigma, and uncertainty about how to best to respond. CONCLUSIONS: As a known mediator of child outcomes, communication offers a promising target for intervention. The findings of this study suggest that parents of children with SCD are likely to benefit from formal support to adapt their communication to their child's needs. Parenting interventions should, in future, include the SCD parent population as a specific group to benefit child outcomes. Statement of contribution What is already known on this subject? Talking openly with children who have genetic conditions is known to promote acceptance and adjustment to illness. Sickle cell disease (SCD) is a genetic condition that is surrounded by various sociocultural issues that may act as barriers to parent-child communication. For example, it is condition that affects only Black and Minority Ethnic (BME) groups and is associated with longstanding stigma within BME communities due to the hereditary nature of the disease. What does this study add? It adds a unique focus on communication in the SCD parent population (previous work has tended to study this group alongside parents of various other genetic conditions). The findings provide a rich insight into parent experience of communication with children about SCD. It reveals that many parents find it difficult to talk openly with children and often avoid sensitive issues such as inheritance, physical limitations, and risk of death which has important implications for child coping and adjustment. It is therefore recommended that health care services are designed to support parents with communication about SCD with their child.

A short report on knowledge exchange through research-based theatre: 'inside out of mind'.

The short report describes the development from page to stage of a work of theatre based on an ethnographic study. The originating research focused on the work of health care assistants (nurse's aides) whose direct impact on the quality of life of highly dependent people is often overlooked. The research followed hospital personnel on wards specialising in the 'challenging behaviour' associated with dementia in central England. Conventional research outputs failed to engage the health care assistants themselves, so we turned to theatre to remedy this. The development of the field notes into theatre was characterised by the artistic freedom given to the playwright, in contrast to more data-led approaches to theatre making. The account of the process of creating the play, Inside Out of Mind, is followed a description of how the work was received by specialist and general audiences totalling 2000+. The discussion seeks to locate the whole enterprise in relation to the field of research-based theatre and explores how the production and its associated learning events relate to definitions of research-based theatre in the light of recent attempts to encapsulate this broad and diverse methodology.