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The current orthodoxy is that home is the best and preferred place of death for most people. Kristian Pollock questions these assumptions and calls for greater attention to improving the experience of dying in hospital and elsewhere

Background Research is fundamental to improving the quality of health care. The need for regulation of research is clear. However, the bureaucratic complexity of research governance has raised concerns that the regulatory mechanisms intended to protect participants now threaten to undermine or stifle the research enterprise, especially as this relates to sensitive topics and hard to reach groups. Discussion Much criticism of research governance has focused on long delays in obtaining ethical approvals, restrictions imposed on study conduct, and the inappropriateness of evaluating qualitative studies within the methodological and risk assessment frameworks applied to biomedical and clinical research. Less attention has been given to the different epistemologies underlying biomedical and qualitative investigation. The bioethical framework underpinning current regulatory structures is fundamentally at odds with the practice of emergent, negotiated micro-ethics required in qualitative research. The complex and shifting nature of real world settings delivers unanticipated ethical issues and (occasionally) genuine dilemmas which go beyond easy or formulaic ‘procedural’ resolution. This is not to say that qualitative studies are ‘unethical’ but that their ethical nature can only be safeguarded through the practice of ‘micro-ethics’ based on the judgement and integrity of researchers in the field. Summary This paper considers the implications of contrasting ethical paradigms for the conduct of qualitative research and the value of ‘empirical ethics’ as a means of liberating qualitative (and other) research from an outmoded and unduly restrictive research governance framework based on abstract prinicipalism, divorced from real world contexts and values.

Narratives of recovery from mental health distress have played a central role in the establishment of the recovery paradigm within mental health policy and practice. As use of recovery narratives increases within services, it is critical to understand how they have been characterised, and what may be missing from their characterisation thus far. The aim of this review was to synthesise published typologies in order to develop a conceptual framework characterising mental health recovery narratives. A systematic review was conducted of published literature on the characteristics of mental health recovery narratives. Narrative synthesis involved identifying characteristics and organising them into dimensions and types; and subgroup analysis based on study quality, narrator involvement in analysis, diagnosis of psychosis and experience of trauma. The synthesis was informed by consultation with a Lived Experience Advisory Panel and an academic panel. The review protocol was pre-registered (Prospero CRD42018090188). 8951 titles, 366 abstracts and 121 full-text articles published January 2000-July 2018 were screened, of which 45 studies analysing 629 recovery narratives were included. A conceptual framework of mental health recovery narratives was developed, comprising nine dimensions (Genre; Positioning; Emotional Tone; Relationship with Recovery; Trajectory; Use of Turning Points; Narrative Sequence; Protagonists; and Use of Metaphors), each containing between two and six types. Subgroup analysis indicated all dimensions were present across most subgroups, with Turning Points particularly evident in trauma-related studies. Recovery narratives are diverse and multidimensional. They may be non-linear and reject coherence. To a greater extent than illness narratives, they incorporate social, political and rights aspects. Approaches to supporting development of recovery narratives should expand rather than reduce available choices. Research into the narratives of more diverse populations is needed. The review supports trauma-informed approaches, and highlights the need to understand and support post-traumatic growth for people experiencing mental health issues.

BackgroundThe prescribing of injectable end-of-life anticipatory medications ahead of possible need is recommended practice. The financial costs of anticipatory medication remain unknown.AimsTo identify the prescription, usage and wastage costs of anticipatory medications dispensed to patients living at home and in residential care.DesignRetrospective observational study using general practitioner and community nursing records.Data CollectionData were collected from eleven general practitioner practices using the records of the last 30 most recent deaths per practice. Patients were aged 18+ and died between 2017–2019 from any cause except trauma, sudden death or suicide.AnalysisAnticipatory medications were prescribed to 167/329 patients, of which 164 were included in the analysis. Costs were analysed at both patient-level and drug-level using univariate and multivariate quantitative analysis.ResultsMedian anticipatory prescription cost was £43.17 (IQR: £38.98-£60.47, range £8.76 to £229.82). Median administration prescription cost was £2.16 (IQR: £0.00-£12.09, range £0.00 to £83.14). Median wastage was £41.47 (IQR: £29.15-£54.33, range £0.00 to £195.36). Prescription, usage and wastage costs were significantly higher for patients prescribed an anticipatory syringe driver. There were wide variations in the wastage costs of individual drugs; Haloperidol and Cyclizine contributed 49% of the total wastage costs.ConclusionThe prescription and wastage costs of anticipatory medications are higher than previously estimated but remain modest. Usage of prescriptions is lower than previously expected. There may be scope to reduce the quantity of drug vials that are routinely prescribed without adversely affecting care; prospective clinical trials are needed to explore this possibility.

Mental health recovery narratives are stories of recovery from mental health problems. Narratives may impact in helpful and harmful ways on those who receive them. The objective of this paper is to develop a change model identifying the range of possible impacts and how they occur. Semi-structured interviews were conducted with adults with experience of mental health problems and recovery (n = 77). Participants were asked to share a mental health recovery narrative and to describe the impact of other people's recovery narratives on their own recovery. A change model was generated through iterative thematic analysis of transcripts. Change is initiated when a recipient develops a connection to a narrator or to the events descripted in their narrative. Change is mediated by the recipient recognising experiences shared with the narrator, noticing the achievements or difficulties of the narrator, learning how recovery happens, or experiencing emotional release. Helpful outcomes of receiving recovery narratives are connectedness, validation, hope, empowerment, appreciation, reference shift and stigma reduction. Harmful outcomes are a sense of inadequacy, disconnection, pessimism and burden. Impact is positively moderated by the perceived authenticity of the narrative, and can be reduced if the recipient is experiencing a crisis. Interventions that incorporate the use of recovery narratives, such as peer support, anti-stigma campaigns and bibliotherapy, can use the change model to maximise benefit and minimise harms from narratives. Interventions should incorporate a diverse range of narratives available through different mediums to enable a range of recipients to connect with and benefit from this material. Service providers using recovery narratives should preserve authenticity so as to maximise impact, for example by avoiding excessive editing.

Institutional injustice refers to structures that create disparities in resources, opportunities and representation. Marginalised people experience institutional injustice, inequalities and discrimination through intersecting personal characteristics and social circumstances. This study aimed to investigate sources of institutional injustice and their effects on marginalised people with experience of mental health problems. Semi-structured interviews were conducted with 77 individuals from marginalised groups with experience of mental health problems, including psychosis, Black, Asian and minority ethnic (BAME) populations, complex needs and lived experience as a work requirement. These were analysed inductively enabling sensitising concepts to emerge. Three processes of institutional injustice were identified: not being believed because of social status and personal backgrounds; not being heard where narratives did not align with dominant discourses, and not being acknowledged where aspects of identity were disregarded. Harmful outcomes included disengagement from formal institutions through fear and mistrust, tensions and reduced affiliation with informal institutions when trying to consolidate new ways of being, and damaging impacts on mental health and wellbeing through multiple oppression. Institutional injustice perpetuates health inequalities and marginalised status. Master status, arising from dominant discourses and heuristic bias, overshadow the narratives and experiences of marginalised people. Cultural competency has the potential to improve heuristic availability through social understandings of narrative and experience, whilst coproduction and narrative development through approaches such as communities of practice might offer meaningful avenues for authentic expression.

Background This study explores with patients, carers and health care professionals if, when and how Advance Care Planning conversations about patients’ preferences for place of care (and death) were facilitated and documented. Methods The study adopted an exploratory case study design using qualitative interviews, across five services delivering palliative care to cancer and non-cancer patients within an urban and rural English region. The study recruited 18 cases made up of patients (N = 18; 10 men; 8 women; median age 75); nominated relatives (N = 11; 7 women; 4 men; median age 65) and healthcare professionals (N = 15) caring for the patient. Data collection included: 18 initial interviews (nine separate interviews with patients and 9 joint interviews with patients and relatives) and follow up interviews in 6 cases (involving a total of 5 patients and 5 relatives) within one year of the first interview. Five group interviews were conducted with 15 healthcare professionals; 8 of whom also participated in follow up interviews to review their involvement with patients in our study. Results Patients demonstrated varying degrees of reticence, evasion or reluctance to initiate any conversations about end of life care preferences. Most assumed that staff would initiate such conversations, while staff were often hesitant to do so. Staff-identified barriers included the perceived risks of taking away hope and issues of timing. Staff were often guided by cues from the patient or by intuition about when to initiate these discussions. Conclusions This study provides insights into the complexities surrounding the initiation of Advance Care Planning involving conversations about end of life care preferences with patients who are identified as having palliative care needs, in particular in relation to the risks inherent in the process of having conversations where mortality must be acknowledged. Future research is needed to examine how to develop interventions to help initiate conversations to develop person centred plans to manage the end of life.

Post-traumatic growth, defined as positive psychological change experienced as a result of the struggle with challenging life circumstances, is under-researched in people with mental health problems. The aim of this study was to develop a conceptual framework for post-traumatic growth in the context of recovery for people with psychosis and other severe mental health problems. Qualitative thematic analysis of cross-sectional semi-structured interviews about personal experiences of mental health recovery. England. Participants were adults aged over 18 and: (1) living with psychosis and not using mental health services (n=21); (2) using mental health services and from black and minority ethnic communities (n=21); (3) underserved, operationalised as lesbian, gay, bisexual and transgender community or complex needs or rural community (n=19); or (4) employed in peer roles using their lived experience with others (n=16). The 77 participants comprised 42 (55%) female and 44 (57%) white British. Components of post-traumatic growth were present in 64 (83%) of recovery narratives. Six superordinate categories were identified, consistent with a view that post-traumatic growth involves learning about oneself (self-discovery) leading to a new sense of who one is (sense of self) and appreciation of life (life perspective). Observable positively valued changes comprise a greater focus on self-management (well-being) and more importance being attached to relationships (relationships) and spiritual or religious engagement (spirituality). Categories are non-ordered and individuals may start from any point in this process. Post-traumatic growth is often part of mental health recovery. Changes are compatible with research about growth following trauma, but with more emphasis on self-discovery, integration of illness-related experiences and active self-management of well-being. Trauma-related growth may be a preferable term for participants who identify as having experienced trauma. Trauma-informed mental healthcare could use the six identified categories as a basis for new approaches to supporting recovery. ISRCTN11152837.

Older adults with dementia are at a high risk of losing abilities and of accidental falls. Promoting Activity, Independence and Stability in Early Dementia (PrAISED) is a 12-month person-centred exercise and activity programme which aims to increase activity and independence whilst reducing falls in people with early dementia. In this patient group, as well as many others, poor adherence to exercise interventions can undermine treatment effectiveness. We aimed to explore patterns of barriers and facilitators influencing PrAISED participants' adherence to home-based strength and balance exercises. Participants were a subsample of 20 individuals with mild cognitive impairment or early dementia and their carer(s) taking part in the PrAISED programme. Participants (with the support of a carer where necessary) kept a daily exercise diary. Participants' adherence were categorised based upon reported number of times a week they undertook the PrAISED strength and balance exercises over a 4 month period (<3 times a week = low adherence, 3-4 = meeting adherence expectations, >5 = exceeding adherence expectations). Semi-structured interviews were conducted in month 4 of the PrAISED programme to explore barriers and facilitators to adherence. A mixture of deductive and inductive thematic analysis was employed with themes categorised using the Theoretical Domains Framework. Participants completed on average 98 minutes of home-based strength and balance exercises per week, 3.8 sessions per week, for an average of 24 minutes per session. Five participants were categorised as exceeding adherence expectations, 7 as meeting adherence expectations, and 8 as low adherers. Analysis of interview data based on self-reported adherence revealed six interacting themes: 1) routine, 2) practical and emotional support, 3) memory support, 4) purpose, 5) past experiences of sport and exercise, and 6) belief in and experience of benefits. Identifiable cognitive, psychological, and practical factors influence adherence to exercise, and should be addressed in future development of interventions with this population.

Background Patient and Public Involvement (PPI) in research ensures that publicly funded research reflects the priorities of the people who will be affected by its results. Co‐research, a branch of PPI, is equal partnership between academic researchers and members of the public, who steer and conduct research together. Objectives To propose a model for good practice in co‐researching with carers of people with dementia, by reporting and synthesizing the personal reflections of the academic and lay researchers around the methodological issues, benefits, and challenges of co‐research. Design An academic researcher and two lay researchers with lived experience of caring with someone with dementia collaborated in all stages of a qualitative research study, including development of the research protocol and topic guide, data collection, analysis and synthesis, and dissemination of findings. Throughout the study, the academic and lay researchers annotated reflections of their experience in personal diaries. Data from the diaries were synthesized and mapped out in a model for good practice in co‐research. Results Co‐research yielded benefits for all those involved and on research outputs. There were practicalities and challenges that required extra resources, in order to make the involvement of lay researchers meaningful and effective. Discussion The model for good practice illustrates overarching and stage‐specific guidelines, which can inform researchers and members of the public wishing to undertake good practice in co‐research.