Social participation in the promoting activity, independence and stability in early dementia (PrAISED), a home-based therapy intervention for people living with dementia: a realist evaluation.

BACKGROUND: Interventions promoting social activity may reduce behavioural psychological symptoms and improve quality of life in people living with dementia. This study aimed to identify social benefits for participants living with dementia in the context of Promoting Activity, Independence and Stability in Early Dementia (PrAISED), an exercise intervention programme promoting physical activity and independence in participants living with dementia in England. METHODS: This was a multi-method realist evaluation undertaking secondary analysis of data collected during the PrAISED process evaluation, including qualitative interviews with participants with dementia, caregivers and therapists, personal notes of researchers, and video recordings of therapy sessions. The study consisted of four phases: (1) Setting operational definition of social outcomes in PrAISED; (2) Developing Context, Mechanisms, Outcome (CMO) configurations; (3) Testing and refining CMOs; and (4) Synthesising definitive CMOs into a middle range theory. RESULTS: Two CMOs were identified. (1) When therapists were able to make therapy sessions engaging and had the caregivers' support, the participants experienced therapy sessions as an opportunity to achieve goals in areas they were interested in. They also found the sessions enjoyable. This all led to the participants being highly engaged in their social interactions with the therapists. (2) When the participants realised that they were gaining benefits and progress through the PrAISED intervention, such as increased balance, this boosted their confidence in physical ability. It might also reduce caregivers' risk-aversion/gatekeeping attitude, which in turn would lead to participants' increased participation in social activities. CONCLUSION: The PrAISED intervention supported social participation in participants living with dementia. Under certain circumstances, home-based therapy interventions can be beneficial for social health (regardless of physical health gains). Given the limitations of currently available outcome measures to assess social participation, qualitative methods should be used to explore social health outcomes.

'Beyond the Reach of Palliative Care': A Qualitative Study of Patient and Public Experiences and Anticipation of Death and Dying.

The demands and costs of health care resulting from increasingly ageing populations have become a major public health issue in the United Kingdom and other industrially developed nations. Concern with cost containment and shortage of resources has prompted a progressive shift in responsibility from state provision of care to individual patients and their families, and from the institutional setting of the hospital to the domestic home. Under the guise of choice and patient centredness, end-of-life care is framed within a discourse of the 'good death': free from distress and discomfort and accompanied by significant others in the preferred place, usually assumed to be home. The promotion of the 'good death' as a technical accomplishment enabled by pre-emptive discussion and advance care planning has sidelined recognition of the nature and significance of the pain and suffering involved in the experience of dying. There has been little research into the disparity between policy and professional assumptions and the lived reality of end of life. In this paper, we present findings from a qualitative study of how terminally ill patients, bereaved family members, and members of the public understand, anticipate, and experience death and dying. These findings contribute to an important and timely critique of the normative idealisation of death and dying in health policy and practice, and the need to attend closely to the real-world experiences of patients and the public as a prerequisite for identifying and remedying widespread shortcomings in end-of-life care.

The ideal and the real: Patient and bereaved family caregiver perspectives on the significance of place of death.

Home has become established as the preferred place of death within health policy and practice in the UK and internationally. However, growing awareness of the structured inequalities underpinning end-of-life care and the challenges for family members undertaking care at home raise questions about the nature of patient and public preferences and priorities regarding place of death and the feasibility of home management of the complex care needs at the end-of-life. This paper presents findings from a qualitative study of 12 patients' and 34 bereaved family caregivers' perspectives and priorities regarding place of death. Participants expressed complex and nuanced accounts in which place of death was not afforded an overarching priority. The study findings point to public pragmatism and flexibility in relation to place of death, and the misalignment of current policy with public priorities that are predominantly for comfort and companionship at the end-of-life, regardless of place.

Talking about death and dying: Findings from deliberative discussion groups with members of the public.

Talking about death and dying is promoted in UK health policy and practice, from a perception that to do so encourages people to plan for their end of life and so increase their likelihood of experiencing a good death. This encouragement occurs alongside a belief that members of the public are reluctant to talk about death, although surveys suggest this is not the case. This paper describes findings from a research study in which people participated in deliberative discussion groups during which they talked about a range of topics related to death, including talking about death, the good death, choice and planning and compassionate communities. Here we report what they had to say in relation to talking about death and dying. We identified three themes: 1. The difference between talking about death as an abstract concept and confronting the certainty of death, 2. how death and dying presents issues for planning and responsibility, and 3. approaches to normalising death within society. For our participants, planning was considered most appropriate in relation to wills and funerals, while dying was considered too unpredictable to be easy to plan for; they had complex ideas about the value of talking about death and dying.

Self-efficacy of advanced cancer patients for participation in treatment-related decision-making in six European countries: the ACTION study.

PURPOSE: Many patients prefer an active role in making decisions about their care and treatment, but participating in such decision-making is challenging. The aim of this study was to explore whether patient-reported outcomes (quality of life and patient satisfaction), patients' coping strategies, and sociodemographic and clinical characteristics were associated with self-efficacy for participation in decision-making among patients with advanced cancer. METHODS: We used baseline data from the ACTION trial of patients with advanced colorectal or lung cancer from six European countries, including scores on the decision-making participation self-efficacy (DEPS) scale, EORTC QLQ-C15-PAL questionnaire, and the EORTC IN-PATSAT32 questionnaire. Multivariable linear regression analyses were used to examine associations with self-efficacy scores. RESULTS: The sample included 660 patients with a mean age of 66 years (SD 10). Patients had a mean score of 73 (SD 24) for self-efficacy. Problem-focused coping (B 1.41 (95% CI 0.77 to 2.06)), better quality of life (B 2.34 (95% CI 0.89 to 3.80)), and more patient satisfaction (B 7.59 (95% CI 5.61 to 9.56)) were associated with a higher level of self-efficacy. Patients in the Netherlands had a higher level of self-efficacy than patients in Belgium ((B 7.85 (95% CI 2.28 to 13.42)), whereas Italian patients had a lower level ((B -7.50 (95% CI -13.04 to -1.96)) than those in Belgium. CONCLUSION: Coping style, quality of life, and patient satisfaction with care were associated with self-efficacy for participation in decision-making among patients with advanced cancer. These factors are important to consider for healthcare professionals when supporting patients in decision-making processes.

The facilitators and barriers to improving functional activity and wellbeing in people with dementia: a qualitative study from the process evaluation of Promoting Activity, Independence and Stability in Early Dementia (PrAISED).

BACKGROUND: The PRomoting Activity, Independence and Stability in Early Dementia (PrAISED) study delivered an exercise and functional activity programme to participants living with dementia. A Randomised Controlled Trial showed no measurable benefits in activities of daily living, physical activity or quality of life. OBJECTIVE: To explore participants' responses to PrAISED and explain why an intervention that might be expected to have produced measurable health gains did not do so. METHODS: A process evaluation using qualitative methods, comprising interviews and researcher notes. SETTING: Data were collected in participants' homes or remotely by telephone or videoconferencing. SAMPLE: A total of 88 interviews were conducted with 44 participants living with dementia (n = 32 intervention group; n = 12 control group) and 39 caregivers. A total of 69 interviews were conducted with 26 therapists. RESULTS: Participants valued the intervention as proactively addressing health issues that were of concern to them, and as a source of social contact, interaction, information and advice. Facilitators to achieving positive outcomes included perceiving progress towards desired goals, positive expectations, therapists' skills and rapport with participants, and caregiver support. Barriers included: cognitive impairment, which prevented independent engagement and carry-over between sessions; chronic physical health problems and intercurrent acute illness and injury; 'tapering' (progressively infrequent supervision intended to help develop habits and independent activity); and the COVID-19 pandemic. CONCLUSIONS: Self-directed interventions may not be appropriate in the context of dementia, even in the mild stages of the condition. Dementia-specific factors affected outcomes including caregiver support, rapport with therapists, availability of supervision, motivational factors and the limitations of remote delivery. The effects of cognitive impairment, multimorbidity and frailty overwhelmed any positive impact of the intervention. Maintenance of functional ability is valued, but in the face of inevitable progression of disease, other less tangible outcomes become important, challenging how we frame 'health gain' and trial outcomes.

The financial costs of anticipatory prescribing: A retrospective observational study of prescribed, administered and wasted medications using community clinical records.

BACKGROUND: The prescribing of injectable end-of-life anticipatory medications ahead of possible need is recommended best practice. The financial costs of these medications have been little studied. AIM: To identify the costs of anticipatory medications prescribed, used and not used for patients approaching the end-of-life at home and in residential care. DESIGN: Retrospective observational study using general practitioner and community nursing clinical records. SETTING/PARTICIPANTS: Data were collected from eleven general practitioner practices using the records of the 30 most recent deaths per practice. Patients were aged 18+ and died between 2017 and 2019 from any cause except trauma, sudden death or suicide. RESULTS: Anticipatory medications were prescribed to 167/329 patients, of which 164 were included in the analysis. Costs (GBP) were analysed both at patient-level and drug-level. Median anticipatory prescription cost was £43.17 (IQR: £38.98-£60.47, range £8.76-£229.82). Median administered (used) drug cost was £2.16 (IQR: £0.00-£12.09, range £0.00-£83.14). Median unused (wasted) drug cost was £41.47 (IQR: £29.15-£54.33, range £0.00-£195.36). Prescription, administered and unused costs were significantly higher for the 59 patients prescribed an anticipatory syringe driver. There were wide variations in the unused costs of individual drugs; Haloperidol and Cyclizine contributed 49% of total unused costs. CONCLUSION: The costs of prescribed and unused anticipatory medications were higher than previously reported but remain modest. Usage of prescriptions was lower than previously documented. There may be scope to reduce the quantity of vials that are routinely prescribed without adversely affecting care; further research is needed to investigate this possibility.

Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning.

BACKGROUND: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. AIM: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. DESIGN: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. SETTING/PARTICIPANTS: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. RESULTS: Patients with a good performance status were underrepresented in the intervention group (p< 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p< 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). CONCLUSIONS: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established.

Impacts of an advance care planning intervention on close relationships.

OBJECTIVES: To examine how an advance care planning (ACP) intervention based on structured conversations impacts the relationship between patients with advanced cancer and their nominated Personal Representatives (PRs). METHODS: Within the ACTION research project, a qualitative study was carried out in 4 countries (Italy, United Kingdom, the Netherlands, and Slovenia) to explore the lived experience of engagement with the ACTION Respecting Choices® ACP intervention from the perspectives of patients and their PRs. A phenomenological approach was undertaken. RESULTS: Our findings show that taking part in the ACTION ACP intervention provides a communicative space for patients and their PRs to share their understanding and concerns about the illness and its consequences. In some cases, this may strengthen relationships by realigning patients' and PRs' understanding and expectations and affirming their mutual commitment and support. SIGNIFICANCE OF RESULTS: The most significant consequence of the ACP process in our study was the deepening of mutual understanding and relationship between some patients and PRs and the enhancement of their sense of mutuality and connectedness in the present. However, being a relational intervention, ACP may raise some challenging and distressing issues. The interpersonal dynamics of the discussion require skilled and careful professional facilitation.

Simultaneously reassuring and unsettling: a longitudinal qualitative study of community anticipatory medication prescribing for older patients.

BACKGROUND: The prescription of injectable anticipatory medications is widely accepted by clinicians to be key in facilitating effective last-days-of-life symptom control. Community end-of-life care and admission avoidance is particularly strongly advocated for older patients. However, patient and informal caregiver views and experiences of anticipatory medication have been little studied to date. OBJECTIVE: To understand older patients', informal caregivers' and clinicians' views and experiences of the prescribing and use of anticipatory medications. DESIGN: Qualitative study. SETTING: Patients' homes and residential care homes. PARTICIPANTS: Purposive sample of six older patients, nine informal caregivers and six clinicians. METHODS: Multi-perspective, longitudinal interview study based on 11 patient cases. Semi-structured interviews (n = 28) were analysed thematically. RESULTS: Three themes were identified: (i) living in the present whilst making plans: anticipatory medications were used by clinicians as a practical tool in planning for uncertainty, while patients and informal caregivers tried to concentrate on living in the present; (ii) anticipation of dying: it was rare for patients and informal caregivers to discuss explicitly the process and experience of dying with clinicians; and (iii) accessing timely care: the use of anticipatory medications generally helped symptom control. However, informal caregivers reported difficulties in persuading nurses to administer them to patients. CONCLUSIONS: Anticipatory medications are simultaneously reassuring and a source of unease to older patients and their informal caregivers. Prescriptions need careful discussion and tailoring to their preferences and experience. Nurses' decisions to administer medication should consider informal caregivers' insights into patient distress, especially when patients can no longer communicate their needs.

Unwelcome memento mori or best clinical practice? Community end of life anticipatory medication prescribing practice: A mixed methods observational study.

BACKGROUND: Anticipatory medications are injectable drugs prescribed ahead of possible need for administration if distressing symptoms arise in the final days of life. Little is known about how they are prescribed in primary care. AIM: To investigate the frequency, timing and recorded circumstances of anticipatory medications prescribing for patients living at home and in residential care. DESIGN: Retrospective mixed methods observational study using General Practitioner and community nursing clinical records. SETTING/PARTICIPANTS: 329 deceased adult patients registered with Eleven General Practitioner practices and two associated community nursing services in two English counties (30 most recent deaths per practice). Patients died from any cause except trauma, sudden death or suicide, between 4 March 2017 and 25 September 2019. RESULTS: Anticipatory medications were prescribed for 167/329 (50.8%) of the deceased patients, between 0 and 1212 days before death (median 17 days). The likelihood of prescribing was significantly higher for patients with a recorded preferred place of death (odds ratio [OR] 34; 95% CI 15-77; p < 0.001) and specialist palliative care involvement (OR 7; 95% CI 3-19; p < 0.001). For 66.5% of patients (111/167) anticipatory medications were recorded as being prescribed as part of a single end-of-life planning intervention. CONCLUSION: The variability in the timing of prescriptions highlights the challenges in diagnosing the end-of-life phase and the potential risks of prescribing far in advance of possible need. Patient and family views and experiences of anticipatory medication care, and their preferences for involvement in prescribing decision-making, warrant urgent investigation.

Communication strategies and persuasion as core components of shared decision-making for children with life-limiting conditions: A multiple case study.

BACKGROUND: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes. AIM: To explore the communication strategies used in shared decision-making for children with life-limiting conditions. DESIGN: A longitudinal, qualitative, multiple-case study. Cases were centred around the child and parent/carer(s). Most cases also included professionals or extended family members. Data from interviews, observations and medical notes were re-storied for each case into a narrative case summary. These were subject to comparative thematic analysis using NVivo11. SETTING/PARTICIPANTS: Eleven cases recruited from three tertiary hospitals in England. 23 participants were interviewed (46 interviews). Cases were followed for up to 12 months between December 2015 and January 2017. 72 observations were conducted and the medical notes of nine children reviewed. FINDINGS: Strategies present during shared decision-making were underpinned by moral work. Professionals presented options they believed were in the child's best interests, emphasising their preference. Options were often presented in advance of being necessary to prevent harm, therefore professionals permitted delay to treatment. Persuasion was utilised over time when professionals felt the treatment was becoming more urgent and when families felt it would not promote the child's psychosocial wellbeing. CONCLUSIONS: Communication strategies in shared decision-making are underpinned by moral work. Professionals should be aware of the models of shared decision-making which include such communication strategies. Open discussions regarding individuals' moral reasoning may assist the process of shared decision-making.

How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial.

OBJECTIVE: Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. METHODS: In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster-randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question. RESULTS: Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post-ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. CONCLUSION: Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice.

'Maybe I Shouldn't Talk': The Role of Power in the Telling of Mental Health Recovery Stories.

Mental health 'recovery narratives' are increasingly used within teaching, learning and practice environments. The mainstreaming of their use has been critiqued by scholars and activists as a co-option of lived experience for organisational purposes. But how people report their experiences of telling their stories has not been investigated at scale. We present accounts from 71 people with lived experience of multiple inequalities of telling their stories in formal and informal settings. A reflexive thematic analysis was conducted within a critical constructivist approach. Our overarching finding was that questions of power were central to all accounts. Four themes were identified: (1) Challenging the status quo; (2) Risky consequences; (3) Producing 'acceptable' stories; (4) Untellable stories. We discuss how the concept of narrative power foregrounds inequalities in settings within which recovery stories are invited and co-constructed, and conclude that power imbalances complicate the seemingly benign act of telling stories of lived experience.

'It's Not Like in the Films': Bereaved People's Experiences of the Deathbed Vigil.

This paper explores how people enact and experience the deathbed vigil when someone close to them is dying. It draws on qualitative interviews with 34 bereaved people carried out as part of a wider study exploring public perceptions of death and dying. Participants were aware of the expectation that they would attend the deathbed and did their best to do so. Findings are reported using four themes: gathering, enacting the deathbed vigil, experiencing the deathbed vigil and moment of death. Participants' experiences varied. Some families kept vigil as a group, while others established a shift system or waited alone. Activities at the bedside included reading to the dying person, talking amongst themselves, sharing memories, saying goodbye. The covid-19 pandemic highlighted families' wish to accompany their dying relatives.

Functional impairment, symptom severity, and overall quality of life in patients with advanced lung or colorectal cancer in six European countries: baseline findings from the ACTION study.

BACKGROUND: People with advanced cancer often suffer from various symptoms, which can arise from the cancer itself and its treatment, the illness experience, and/or co-morbid conditions. Important patient-reported outcomes such as functional status, symptom severity, and quality of life (QoL) might differ between countries, as countries vary with regard to contextual factors such as their healthcare system. PURPOSE: To assess self-reported emotional functioning, physical functioning, symptoms, and overall QoL in patients with advanced lung or colorectal cancer from six European countries, particularly in relation to their country of residence. METHODS: We used baseline patient data from the ACTION trial, including socio-demographic and clinical data as well as patient-reported data regarding functioning, symptoms, and overall QoL (EORTC QLQ-C15-PAL). RESULTS: Data from 1117 patients (55% lung cancer stage III/IV, 45% colorectal cancer stage IV) were used. The highest (worst) average symptom score was found for fatigue. We found similarities but also important differences in the outcomes across countries. The best scores (the highest for emotional functioning and QoL, the lowest for symptoms) were reported by Dutch and Danish patients. Belgian patients reported relatively low emotional functioning. CONCLUSION: The optimization of functioning, symptom relief, and overall QoL should be important objectives of healthcare professionals who take care of patients with advanced cancer. There are similarities, but also substantial differences across countries in functional status, symptoms, and overall QoL. Policymakers should take these differences into account and invest in offering health care catered to the needs of their population.

The 'work' of managing medications when someone is seriously ill and dying at home: A longitudinal qualitative case study of patient and family perspectives'.

BACKGROUND: Managing medications can impose difficulties for patients and families which may intensify towards the end of life. Family caregivers are often assumed to be willing and able to support patients with medications, yet little is known about the challenges they experience or how they cope with these. AIM: To explore patient and family caregivers' views of managing medications when someone is seriously ill and dying at home. DESIGN: A qualitative design underpinned by a social constructionist perspective involving interviews with bereaved family caregivers, patients and current family caregivers. A thematic analysis was undertaken. SETTING/PARTICIPANTS: Two English counties. Data reported in this paper were generated across two data sets using: (1) Interviews with bereaved family caregivers (n = 21) of patients who had been cared for at home during the last 6 months of life. (2) Interviews (n = 43) included within longitudinal family focused case studies (n = 20) with patients and current family caregivers followed-up over 4 months. RESULTS: The 'work of managing medications' was identified as a central theme across the two data sets, with further subthemes of practical, physical, emotional and knowledge-based work. These are discussed by drawing together ideas of illness work, and how the management of medications can substantially add to the burden placed on patients and families. CONCLUSIONS: It is essential to consider the limits of what it is reasonable to ask patients and families to do, especially when fatigued, distressed and under pressure. Focus should be on improving support via greater professional understanding of the work needed to manage medications at home.

Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial.

BACKGROUND: Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce. METHODS AND FINDINGS: To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0-3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients' age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients' quality of life did not differ between intervention and control groups (T-score -1.8 versus -0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals. CONCLUSIONS: Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed. TRIAL REGISTRATION: ISRCTN registry ISRCTN63110516.

Adding to the knowledge on Patient and Public Involvement: Reflections from an experience of co-research with carers of people with dementia.

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.

Not the story you want? Assessing the fit of a conceptual framework characterising mental health recovery narratives.

PURPOSE: Narratives of recovery have been central to the development of the recovery approach in mental health. However, there has been a lack of clarity around definitions. A recent conceptual framework characterised recovery narratives based on a systematic review and narrative synthesis of existing literature, but was based on a limited sample. The aims of this study were to assess the relevance of the framework to the narratives of more diverse populations, and to develop a refined typology intended to inform narrative-based research, practice and intervention development. METHOD: 77 narrative interviews were conducted with respondents from four under-researched mental health sub-populations across England. Deductive and inductive analysis was used to assess the relevance of the dimensions and types of the preliminary typology to the interview narratives. RESULTS: Five or more dimensions were identifiable within 97% of narratives. The preliminary typology was refined to include new definitions and types. The typology was found not to be relevant to two narratives, whose narrators expressed a preference for non-verbal communication. These are presented as case studies to define the limits of the typology. CONCLUSION: The refined typology, based on the largest study to date of recovery narratives, provides a defensible theoretical base for clinical and research use with a range of clinical populations. Implications for practice include ensuring a heterogeneous selection of narratives as resources to support recovery, and developing new approaches to supporting non-verbal narrative construction.