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Research question: How do you people with schizophrenia and their carers live with a diagnosis of schizophrenia? Research aim: To gain a greater understanding of the meaning and experience of schizophrenia. The objective of this phenomenological study was to explore the lived experience of schizophrenia. Sample: Self-selected sample of 35 participants (22 people with schizophrenia and 13 carers) recruited from the local community. . Data collection: 33 unstructured audiotaped interviews conducted in participants¿ own homes. In addition some participants completed diaries. Interviews were conducted in two stages: in stage one 10 participants were interviewed, transcripts were analysed and probes were fine tuned and in stage two these probes were used in the remaining interviews. Data analysis: Verbatim transcripts were analysed using the coding paradigm proposed by Strauss (1987), in conjunction with Burnard¿s (1991) 14 stage model of analysis. Inductive coding was used and respondent validation was completed. Findings: Stress was described as a major cause of schizophrenia. Some participants with schizophrenia described moving on in their lives, a factor associated with having a positive self-concept. Other participants with schizophrenia reported feeling stopped in their lives, which was associated with acceptance of the diagnosis, and having a negative self-concept. The most severe problems they reported were social and psychological. Male and female participants with schizophrenia were treated differently. Some participants with schizophrenia sought support while others chose isolation. Mental health nursing care was reported as coercive and disempowering. Carers described conflict within families, carer burden, and stress. Those who had been caregiving for longer appeared to have adapted and now experienced less stress and burden than others. Younger carers and carers who have been caregiving for a shorter time and were less willing to accept the caregiving role, reported more burden and stress. Conclusions: These findings suggest that a positive self-concept may be necessary to move on after the diagnosis of schizophrenia. The inability to move on may be a result of a negative self-concept or disempowering care. There was no partnership and no shared understanding of schizophrenia, or of care, between these participants with schizophrenia and nurses, or between these participants with schizophrenia and their carers, or between carers and nurses. Many of the participants¿ self-identified needs were not met. A new attitude displaying reluctance about a caregiving role may be emerging.

It has been estimated that by the year 2014 there will be a 12 per cent increase in the number of adults with at least one chronic illness condition (Carrier, 2009). The turn to caring for those with a chronic illness at home has resulted in carers having an increased risk of developing health problems (Ohman & Soderberg, 2004). As such there is a need to understand how families manage and cope with illness at home. This study has examined the effect chronic illness had on not only the woman with illness, but also the immediate family closely involved with her care. Additionally the study has sought to address the effect chronic illness had on the ¿self¿ and ¿identity¿ of these three women and to determine what extent and impact the illness process had on the relationships within this family. The study used open-ended biographic narrative interviews to elicit data. The research revealed that each woman experienced change and loss to both ¿self¿ and ¿identity¿ albeit in different ways. Interestingly and of significance is the way these women in their narrative accounts revisited their past lives in implicating and accounting for the present and the future (Freeman 2010). It was discovered that the past history and past relationships of these women affected how they each responded to illness and each other in their present circumstances.

Yes / To evaluate a 24/7, nurse led telephone and video-consultation support service for patients thought to be in the last year of life in Bradford, Airedale, Wharfedale and Craven. Method: Activity and other data recorded at the time of calls were analysed. Interviews with 13 participants captured patients and carers perspectives. Results: Between April 1st 2014 and March 31st 2015, 4648 patients were registered on the Gold Line. 42% had a non-cancer diagnosis and 46% were not known to specialist palliative care services. The median time on the caseload was 49 days (range 1-504 days). 4533 telephone calls and 573 video consultations were received from 1813 individuals. 39% of the 5106 calls were resolved by Gold Line team without referral to other services. 69% of calls were made outside normal working hours. Interviews with patients and carers reported experiences of support and reassurance and the importance of practical advice. Conclusion: A nurse led, 24/7 telephone and video consultation service can provide valuable support for patients identified to be in the last year of life and their cares. The line enabled them to feel supported and remain in their place of residence, reducing avoidable hospital admissions and use of other services. Providing this service may encourage health care professionals to identify patients approaching the last year of life, widening support offered to this group of patients beyond those known to specialist palliative care services. / Health Foundation adn Shared Purpose

Yes / Family carers report high levels of decisional conflict when deciding whether their relative with dementia can continue to be cared for in their own home. We tested, in a feasibility randomised controlled trial, the first decision aid (the DECIDE manual) aiming to reduce such conflict. Twenty family carers received the DECIDE intervention, and 21 received usual treatment. The intervention group had reduced decisional conflict compared with controls (mean difference −11.96, 95% confidence interval −20.10 to −3.83, P=0.005). All carers receiving the intervention completed and valued it, despite some still reporting difficulties with family conflict and problems negotiating services. Declaration of interest None. Copyright and usage © The Royal College of Psychiatrists 2017. This is an open access article distributed under the terms of the Creative Commons Non-Commercial, No Derivatives (CC BY-NC-ND) license.

Yes / This qualitative study was designed to understand the impact of social distancing measures on people with dementia and carers living in the community in England and Wales during a period of social restrictions before the COVID-19 vaccination roll-out. We conducted 12 semi-structured interviews with people with dementia aged 50-88 years, living alone or with a partner, and 10 carers aged 61-78 years, all living with the person with dementia. Three of the interviews were with dyads. Participants were recruited during November and December 2020. We used framework analysis to identify themes and elicit suggestions for potential solutions. We identified three interrelated themes. People with dementia experienced a fear of decline in capabilities or mood and attempted to mitigate this. Carers noticed changes in the person with dementia and increased caring responsibilities, and for some, a change in the relationship. Subsequently, reduced confidence in capabilities to navigate a new and hostile environment created a cyclical dilemma of re-engaging where an inability to access usual activities made things worse. People with dementia and carers experienced neglect and being alone in their struggle, alongside feeling socially excluded during the pandemic, and there was little optimism associated with the upcoming vaccine programme. People found their own solutions to reduce the effects of isolation by keeping busy and being socially active, and practising skills deemed to help reduce the progression of dementia. This and some limited local public initiatives for the general public facilitated feelings of social inclusion. This study adds understanding to existing evidence about the longer-term experience of social isolation several months into the pandemic. It highlights the importance of health and community groups and suggests how services can find ways to support, include, and interact with people with dementia and carers during and after social restrictions. / Economic and Social Research Council. Grant Numbers: ES/V004964/1, L001853, V004964. National Institute for Health and Care Research. Grant Number: ES/L001853/2. Department of Health. UK Research and Innovation. Health and Care Research Wales

Yes / Objectives: A novel model of resilience was tested in caregivers of people with mild-to-moderate dementia and was extended to explore whether including self-efficacy, optimism, and self-esteem improved its predictive value. Design: Cross-sectional. Setting: Data from the IDEAL cohort were used. Participants: The study comprised 1222 caregivers of people with dementia. Measurements: A composite resilience score was calculated from five measures. Multivariable regressions were used to investigate factors associated with resilience. Results: Greater resilience was associated with being older, being male, and caregiving for older people with dementia. Greater resilience was also observed when people with dementia had fewer functional difficulties and/or fewer neuropsychiatric symptoms, there was a stronger dyadic relationship, and the caregiver had fewer social restrictions, less neuroticism, and greater perceived competence. Surprisingly, caregiver self-efficacy, optimism, and self-esteem were unrelated to resilience. Conclusion: Caregivers of people with mild-to-moderate dementia generally scored well for resilience. Resilience was associated with both the personal characteristics of caregivers and level of care need among people with dementia. Future work is needed to determine whether the caregivers in this cohort appeared resilient because the care recipients had relatively low care needs and consequently placed fewer demands on caregiver well-being than would be the case where dementia is more advanced. / Economic and Social Research Council (ESRC) and the National Institute for Health and Care Research (NIHR) through grant ES/L001853/2. Alzheimer's Society, grant number 348, AS-PR2-16-001.

Yes / The increasing heterogeneity of the population of older people is reflected in an increasing number of people with dementia and carers drawn from minority ethnic groups. Data from the IDEAL study are used to compare indices of 'living well' among people with dementia and carers from ethnic minority groups with matched white peers. We used an exploratory cross-sectional case-control design to compare 'living well' for people with dementia and carers from minority ethnic and white groups. Measures for both groups were quality of life, life satisfaction, wellbeing, loneliness, and social isolation and, for carers, stress, relationship quality, role captivity and caring competence. The sample of people with dementia consisted of 20 minority ethnic and 60 white participants and for carers 15 and 45 respectively. People with dementia from minority ethnic groups had poorer quality of life (-4.74, 95% CI: -7.98 to -1.50) and higher loneliness (1.72, 95% CI: 0.78-2.66) whilst minority ethnic carers had higher stress (8.17, 95% CI: 1.72-14.63) and role captivity (2.00, 95% CI: 0.43-3.57) and lower relationship quality (-9.86, 95% CI: -14.24 to -5.48) than their white peers. Our exploratory study suggests that people with dementia from minority ethnic groups experience lower quality of life and carers experience higher stress and role captivity and lower relationship quality than their white peers. Confirmatory research with larger samples is required to facilitate analysis of the experiences of specific minority ethnic groups and examine the factors contributing to these disadvantages. / Economic and Social Research Council. National Institute for Health and Care Research. Grant Number: ES/L001853/2

This thesis explored the lives of carers of disabled people, and the research process itself within the collaborative framework of a support group. It used as its data sources an extensive review of the literature, interview transcripts and fieldnotes from carers, participants from the local service system, and the records of meetings and activities of the Group over 5 years. The study highlights the way public discourse on deinstitutionalisation has so captured our consciousness on care of disabled people that the personal reality of care in the family home has been effectively lost. It traces the disordering discourses of disablement and their link with constructions of caring. The personal reality of care and the isolating nature of this union of caring and disablement was the primary research focus. This may be characterised by social loss, and a lifestyle bound up with disablement which involves a search for a supportive or caring culture. The isolation and exclusion of carers occurs behind the screens of apparently caring institutions such as marriage, family, community and the service system. In the search for a caring cuture carers find their lives bound up with that of state and service systems which offer some hope of a supportive response. Instead they invariably find that the culture is an alien one. The research informed attempts of the Group to explore improved forms of caring culture, and more relevant public policy approaches. The study attempted to bridge the gap between the process of knowledge construction and discourse, and the material experience of carers / Doctor of Philosophy (PhD)