Christine Rowland

Background: Family carers provide crucial support to patients nearing end of life. This can affect carers’ own mental health negatively. It is important to understand what factors may affect carers’ mental health and convey this information to stakeholders who can effect change. We conducted reviews of the qualitative, observational and intervention carer literature and worked with carer advisors and other stakeholders to make findings useful and accessible. Aim of the synopsis: To provide a synopsis of (1) project methods, (2) findings and implications from the evidence syntheses, (3) outcomes of our carer Review Advisory Panel collaboration and (4) feedback from wider stakeholder consultation. Method: Searches of MEDLINE, Cumulative Index to Nursing and Allied Health Literature, PsycInfo, Social Sciences Citation Index, EMBASE, Cochrane Central Register of Controlled Trials and Database of Abstracts of Reviews of Effects 1 January 2009–24 November 2019. Studies included adult family carers for adult patients at the end of life cared for at home, considering any factor related to carer mental health. Collaboration with the Review Advisory Panel over nine meetings helped map review findings into a framework, shape their presentation and create Review Advisory Panel recommendations. Four workshops, two discussion groups and a survey with stakeholders (carers/patients, practitioners and policy-makers/commissioners) informed output formats and suggested actions. Results: Thirty-one qualitative, 60 observational, 12 intervention and 3 mixed-methods studies were identified. Factors associated with carer mental health were: (1) patient condition, mainly psychological symptoms and quality of life; (2) impact of caring responsibilities, mainly life changes, workload and carer burden; (3) relationships, particularly carer–patient; (4) finances, whether sufficient; (5) internal processes, particularly self-efficacy; (6) support, particularly adequacy and quality; and (7) contextual factors, mainly age and gender. The Review Advisory Panel comprised five carers and a carer chair. They created recommendations for supporting carers based on syntheses findings, including: awareness raising for carers and practitioners; a road map to help carers navigate caregiving; bespoke carer support through carer assessment; assessment of patient’s actual rather than ‘managed’ needs; co-ordinated care through a single contact point; addressing basic practical needs. Other key recommendations included holistic, co-ordinated patient care and cover of basic carer financial needs. Thirty-six stakeholders participated in workshops and discussion groups and 43 in the survey, to review synthesis findings and Review Advisory Panel recommendations. Stakeholders generally valued the qualitative evidence and recommendations over the quantitative evidence, although all outputs resonated with them. There was little consensus regarding where responsibility for carers may lie, pointing to a need for bespoke carer support roles. Some issues may require systemic-level changes. Limitations: Findings are from Organisation for Economic Co-operation and Development country English-language publications on adult carers and patients within home care, and carer advisors and stakeholders were based in the United Kingdom, which may limit the transferability of findings. Conclusions: Findings provide some clear indicators of factors affecting carer mental health and recommendations. Improvements may require investment in bespoke carer support roles (e.g. carer support nurses) and systemic change (e.g. improving carer identification and assessment, and financial security). Given the enormous contribution carers make to health and social care, they deserve such investment to support them in their work. Funding: This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number 18/01/01.

Introduction Informal caregivers are essential in supporting end-of-life patients at home but are often ill-prepared for the carer role. There is growing interest in the development of tools to assess caregiver support needs and a recognised need for a greater focus on addressing inequities in end-of-life care. We plan to undertake a scoping review of available literature to (1) identify and describe tools developed to assess the support needs of informal caregivers in end-of-life care; (2) report on any inequities and under-represented groups in tool development and use. Methods and analysis The review will conform to best practice methodological guidance (Joanna Briggs Institute) for scoping reviews. The search strategy will target published and unpublished studies using any methodology, which reports on developing or using tools or measures to assess informal carer support needs in end-of-life/palliative care settings. The following databases will be searched: MEDLINE, CINAHL, PsycINFO, Web of Science, ASSIA and Proquest. Both title/abstract screening and full-text assessment will be undertaken to ensure eligibility. Searches will be conducted between May and December 2024. We will extract data relating to (1) tools/measures identified, and outcome measures used to assess these; (2) participant characteristics. Extracted data will be tabulated with accompanying narrative description to address the review objectives. Data will be extracted and write-up will be completed between January and May 2025. Ethics and dissemination This scoping review will provide an overview of the tools developed to identify and assess informal caregiver support needs in palliative and end-of-life care. The identification of any inequities will increase awareness of potentially underserved groups and contexts within the current literature, highlighting how future research and resource can be more equitably focused and implemented in a way that does not further embed disparity. Findings will be made publicly available through the Open Science Framework and disseminated through a peer-reviewed publication. As a scoping review of available literature, this work does not require ethical approval.

Background: Family carers are central in supporting patients nearing end of life. As a consequence, they often suffer detrimental impacts on their own mental health. Understanding what factors may affect carers’ mental health is important in developing strategies to maintain their psychological well-being during caregiving. Aim: To conduct a systematic review and thematic evidence synthesis of factors related to carers’ mental health during end-of-life caregiving. Method: Searches of MEDLINE, CINAHL, PsychINFO, Social Sciences Citation Index, EMBASE, Cochrane Central Register of Controlled Trials and Database of Abstracts of Reviews of Effects 1 January 2009–24 November 2019. We included observational quantitative studies focusing on adult informal/family carers for adult patients at end of life cared for at home considering any factor related to carer mental health (anxiety, depression, distress and quality of life) pre-bereavement. Newcastle–Ottawa Quality Assessment Scale was used. Thematic analysis with box score presentation, and meta-analysis were done where data permitted. Results: Findings from 63 included studies underpinned seven emergent themes. Patient condition (31 studies): worse patient psychological symptoms and quality of life were generally associated with worse carer mental health. Patient depression was associated with higher depression in carers (standardised mean difference = 0.59, 95% confidence interval 0.32 to 0.87, I² = 77%). Patients’ other symptoms and functional impairment may relate to carer mental health, but findings were unclear. Impact of caring responsibilities (14 studies): impact on carers’ lives, task difficulty and general burden had clear associations with worse carer mental health. Relationships (8 studies): family dynamics and the quality of the carer–patient relationship may be important for carer mental health and are worthy of further investigation. Finance (6 studies): insufficient resources may relate to carers’ mental health and warrant further study. Carers’ psychological processes (13 studies): self-efficacy and preparedness were related to better mental health. However, findings regarding coping strategies were mixed. Support (18 studies): informal support given by family and friends may relate to better carer mental health, but evidence on formal support is limited. Having unmet needs was related to worse mental health, while satisfaction with care was related to better mental health. Contextual factors (16 studies): older age was generally associated with better carer mental health and being female was associated with worse mental health. Limitations: Studies were mainly cross-sectional (56) rather than longitudinal (7) which raises questions about the likely causal direction of relationships. One-third of studies had samples < 100, so many had limited statistical power to identify existing relationships. Conclusions and future work: Future work must adopt a comprehensive approach to improving carers’ mental health because factors relating to carer mental health cover a broad spectrum. The literature on this topic is diverse and difficult to summarise, and the field would benefit from a clearer direction of enquiry guided by explanatory models. Future research should (1) further investigate quality of relationships and finances; (2) better define factors under investigation; (3) establish, through quantitative causal analyses, why factors might relate to mental health; and (4) utilise longitudinal designs more to aid understanding of likely causal direction of associations. Study registration: This study is registered as PROSPERO registration 2019 CRD42019130279 at https://www.crd.york.ac.uk/prospero/. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme HSDR 18/01/01 and is published in full in Health and Social Care Delivery Research. See the NIHR Funding and Awards website for further award information.

Background: Family carers play a central role in supporting people at the end of life, but often suffer detrimental impacts on their own mental health as a result. This project conducted evidence synthesis of research into factors that may affect carers’ mental health to help identify ways of maintaining their mental health. It worked closely with a carer Review Advisory Panel to help ensure the findings made sense and were communicated meaningfully from the carers’ perspective. Aim: To present: (1) principles and components that facilitated successful patient and public involvement in an evidence synthesis project to help inform patient and public involvement in similar projects; (2) recommendations for carer support that were instigated and produced by the Review Advisory Panel. Process and principles: Nine Review Advisory Panel meetings including four to five carers, a lay Chair and three researchers were held. Solid ‘groundwork’ was invested in recruitment and relationship-building prior to meetings, and it was ensured that there was agreement of how to work together and clarification of expectations at the first meeting. Key meeting principles were: having a majority of carers, and a Chair with both carer and patient and public involvement experience, to ensure carer voices remained at the fore substantial researcher representation, including the project lead, to highlight the value placed on Review Advisory Panel meetings flexibility to follow carers’ agendas, enabling ‘space to talk’ and ‘space to change’ appropriate and prompt carer payment, again emphasising patient and public involvement value to the project. Added general principles were: ongoing training, ample funded time for Review Advisory Panel preparation and ongoing communication outside meetings. COVID moved all meetings online after the first meeting, but the principles were maintained. Outputs: The project saw an evolution from patient and public involvement consultation to co-production. The main patient and public involvement output was recommendations for supporting carers based on project findings, instigated and produced by the Review Advisory Panel. Reflection on successful components and challenges: Five carers (including the Chair) and six researchers responded to questions by e-mail. Analysis by one researcher, aided by two other researchers, was then reviewed by all participants and revised. Both carers and researchers felt the components that made the patient and public involvement work were: (1) a shared sense of purpose of and gains from the Review Advisory Panel; (2) personal gains; (3) mutual commitment and respect; and (4) bridging between academic and lay perspectives, through investment in training, ensuring carers were able to meaningfully comment, and continuous negotiation and compromise. Challenges were that the COVID-induced move from face-to-face to online meetings reduced informality, flexibility, personal connection and non-verbal communication. However, earlier groundwork facilitated group resilience to these challenges. Patient and public involvement representation on the wider Research Management Group proved less successful, flagging the importance of negotiating and defining patient and public involvement roles at all project levels. Conclusion: The patient and public involvement principles employed, including meeting composition and chairing, and flexibility to follow carers’ agendas, appeared to facilitate the evolution from consultation to co-production of carer recommendations, but require further testing. Preconditions for successful remote working should be further investigated, as the different advantages of face-to-face and virtual meetings may be combined through hybrid working. The iterative and responsive working required for genuine co-production may require more flexible patient and public involvement funding models. Study registration: This study is registered as PROSPERO registration 2019 CRD42019130279 at https://www.crd.york.ac.uk/prospero/. Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (grant 18/01/01) and will be published in full in Health and Social Care Delivery Research. See the NIHR Journals Library website for further project information.

Background: Informal carers are central in supporting patients at the end of life, but this has substantial negative impacts on carers’ own mental health. When carers are unable to cope, this may affect their ability to support the patient and increase the likelihood of patient hospital admissions. Further, demographic changes mean demands for care at and before end of life are increasing and existing services will struggle to meet these demands. It is important to recognise carers as a vital resource and prevent adverse health outcomes from caregiving (and thereby limit their consequences). Large individual variation in the level of psychological morbidity from end-of-life caregiving suggests there is scope for interventions to improve carer mental health if we can understand the underlying factors. Objectives: This meta-synthesis of qualitative studies aims to identify factors reported by carers as important to their mental health. Data sources: Searches of MEDLINE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Social Science Citation Index, EMBASE, Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effects, and Cochrane Qualitative Reviews 1 January 2009 to 24 November 2019 for empirical publications from Organization for Economic Cooperation and Development countries in English/Scandinavian on factors affecting adult carer mental health during end-of-life caregiving in home settings. Review methods: Systematic qualitative meta-synthesis in collaboration with a Public Patient Involvement carer Review Advisory Panel, included thematic synthesis, followed by a best-fit framework synthesis, informed by principles of meta-ethnography. Critical Appraisal Skills Programme Qualitative Studies Checklist was used. Results: Thirty-three eligible studies identified six themes encompassing factors perceived by carers to affect their mental health during end-of-life caregiving. These were: (1) the patient condition (including patient decline); (2) impact of caring responsibilities (including exhaustion, lack of time for own needs, isolation); (3) relationships (including quality of the patient–carer relationship); (4) finances (including financial concerns, impact on work); (5) carers’ internal processes (including loss of autonomy, lack of confidence, coping strategies); and (6) support (including lack of informal support, inadequacies in formal support information and care provision, limited collaboration, disjointed care). Reported strategies to improve mental health were linked to the final two themes, with suggestions on how to manage carers’ internal processes and build appropriate support. Findings correspond with literature 1998–2008, indicating consistency in factors affecting carers and adding validity to findings. Limitations: The review was limited to caregiving in the home setting and studies from Organization for Economic Cooperation and Development countries published in English and Scandinavian. Identified papers predominantly considered carers of people with cancer, with little research into ethnic-minority perspectives. The review may therefore not fully encompass factors affecting carers of people with longer-term conditions, or those within other care settings, countries and population groups. Conclusions and future work: A wide range of both internal and contextual factors may lead to psychological morbidity when caring for someone at the end of life. Future work within practice therefore requires a broad-based rather than narrow approach to sustaining and improving carer mental health. Future work within research requires collaboration between researchers and stakeholders within policy, commissioning, practice and carer organisations to develop solutions and assess their effectiveness. Further, researchers need to develop better models for factors affecting carer mental health and their interaction, to build a stronger evidence base and better guide interventions. Study registration: This study is registered as PROSPERO CRD42019130279. Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number HSDR 18/01/01 and will be published in full in Health and Social Care Delivery Research. See the NIHR Journals Library website for further project information.

Background: Family carers are central in supporting patients nearing the end of life, but this often has an impact on their own mental health. Understanding what factors may affect carers’ mental health is important in developing strategies to maintain mental health, through identifying carers at risk who may need added monitoring and support or developing interventions to change modifiable factors. Reviews of the qualitative, observational and intervention literature were conducted to address this. Aims: (1) to review trials of carer interventions to improve our understanding of factors related to carer mental health identified in earlier qualitative and observational reviews; (2) to synthesise the evidence from our qualitative, observational and intervention reviews on factors related to carers’ mental health during end-of-life caregiving. Method: We carried out searches of MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO^® (American Psychological Association, Washington, DC, USA), Social Sciences Citation Index, EMBASE, Cochrane Central Register of Controlled Trials (CENTRAL) and Database of Abstracts of Reviews of Effects (DARE) from 1 January 2009 to 24 November 2019. We included studies into adult informal/family carers for adult patients at the end of life cared for at home that considered any factor related to carer mental health (anxiety, depression, distress, quality of life) pre bereavement. The quality appraisal used Critical Appraisal Skills Programme (CASP) checklists and the Newcastle–Ottawa Scale. The qualitative review analysis developed themes that then provided a framework for the quantitative review analyses. Findings from all three reviews were mapped onto a single framework, informed by a carer Review Advisory Panel. Results: A total of 31 qualitative, 60 observational, 12 intervention and 3 mixed-methods studies were identified. Factors associated with carer mental health were as follows: (1) patient condition, particularly psychological symptoms and quality of life; (2) impact of caring responsibilities, particularly life changes, workload and carer burden; (3) relationships, particularly with the patient; (4) finances, whether sufficient or not; (5) internal processes, particularly self-efficacy; (6) support, particularly adequacy and quality of support; (7) contextual factors, particularly age and gender. The three types of literature were reflected in most themes and yielded similar or complementary results, adding validity to findings. Only observational studies investigated contextual factors. Intervention studies focused on modifiable factors, but added little evidence on the causal direction between factors and mental health owing to design and analysis limitations. Relationships and finance received little attention overall. There was limited research into ethnicity, race or culture. Quantitative research missed some factors highlighted by carers in qualitative studies (e.g. quality aspects of formal support), and focused more on ‘self-management’ within internal processes (emphasised less by carers). Limitations: Findings are from Organisation for Economic Co-operation and Development (OECD) country English-language publications on adult carers and patients in the home setting and limited to these contexts. Literature heterogeneity (study focus, objectives, methods, variables, measures) hindered meta-synthesis. Conclusions: Future work requires broad stakeholder engagement to address the diverse range of factors associated with carers’ mental health. Project findings will be disseminated accordingly. Future research needs more (1) work on defining and measuring concepts; (2) longitudinal design, repeated measurement and path analysis, to move beyond evidence of association towards an understanding of causal relationships; (3) focus on factors that matter to carers rather than what is easily measured or manipulated; and (4) investigation of relationships, finance, ethnicity, race and culture. Study registration: This study is registered as PROSPERO CRD42019130279. Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in Health and Social Care Delivery Research. See the NIHR Journals Library website for further project information.

Objective Family caregivers play an essential role in end-of-life care but suffer considerable impact on their own health. A better understanding of main factors related to carers’ health is important to inform interventions. The purpose of the study was to test for the first time the potential impact of a comprehensive set of observable variables on carer health during end-of-life caregiving within a population-based carer sample. Design National retrospective, cross-sectional, 4-month post-bereavement postal census survey of family carers of people who died from cancer. Setting and participants Relatives who registered a death from cancer during a 2-week period in England were identified from death certificates by the Office of National Statistics; response rate was 1504/5271 (28.5%). Outcome measures Carers’ mental health was measured through General Health Questionnaire (GHQ)-12; general health was measured through EuroQoL EQ-Visual Analogue Scale (EQ-5D VAS). Methods Survey questions to measure potential variables associated with carer health were based on past research and covered patients’ symptoms and functioning; caregiving activities and hours; informal and formal help received; work hours, other caregiving, volunteering; changes to work, income and expenditure; sleep and relaxation; and demographic variables. Bivariate analyses and ordinary least square regression were performed to investigate these variables’ relationship with outcomes. Results Patients’ psychological symptoms and functioning, caregiving hours, female gender and self-sought formal help related to worse mental health. General practitioner and social care input and relaxation related to better mental health. Patients’ psychological symptoms, caregiving hours and female gender were associated with worse general health, and older age, employment and relaxation were associated with better general health. Conclusions Improvements in carers’ health overall may be made by focusing on potential impacts of patients’ psychological symptoms on carers, facilitating respite and relaxation, and paying particular attention to factors affecting female carers.

Introduction: We revisited the global concept of subjective quality of life (QoL) as assessed by the WHOQOL-BREF to investigate whether it could be elaborated into a conceptually more comprehensive instrument with good psychometric properties. Responding to a growing need for shorter QoL measures with broader social, spiritual and environmental contents, facets from WHOQOL international modules were examined for potential integration into the new WHOQOL-Combi. Method: Adults over 65 years, diagnosed with one or more chronic diseases (n = 2833), completed 41 WHOQOL items during the CLASSIC survey; each item represented a WHOQOL facet. This pool of specific QoL facets contained 24 from the WHOQOL-BREF (excluding general items), and 17 from recent international WHOQOL short-form modules, selected for their generic properties. Rasch modelling reduced the final item pool when assessing the WHOQOL-Combi’s conceptual structure. Comparisons are made with the WHOQOL-BREF. Results: Modelling confirmed the tenability of a 36-item solution scored as a five-domain profile, comprised of 24 WHOQOL-BREF facets and 12 new facets from modules. Social and psychological domains were strengthened by three facets, spiritual QoL by five, and physical QoL by one. The WHOQOL-Combi showed sound model fit, excellent internal consistency (α = .95), and scores discriminated between socio-demographic categories. Concurrent validity with the EQ-5D-5L was confirmed for physical and psychological domains. Performance was similar to the WHOQOL-BREF. Conclusion: The WHOQOL-Combi offers a contemporary, comprehensive, integrated, multi-dimensional subjective QoL instrument with enhanced evaluations of social, spiritual, psychological and physical QoL. Acceptable to older people, future research should evaluate younger age groups and other cultures.

The NHS routinely evaluates the quality of life of patients receiving hip or knee replacement surgery using patient-reported outcome measures (PROMs), but some hospital completion rates are only 30%, restricting data usefulness. Statistics limit insights into how and why data are missing, so qualitative methods were used to explore this issue. Observation periods preceded semistructured interviews with 34 preoperative patients attending an orthopedic outpatient clinic. Interview themes covered: completion time/timing, orientation, setting, measures, and practicalities. Triangulated against observations, pragmatic barriers, and facilitators were considered. Refined themes included completion conditions, patient support, and national delivery. Simple improvements (e.g., quiet zone) could improve completion rates and reducing missing data. Reorganizing preoperative leaflets and their systematic distribution via standardized procedures could reassure patients, enhancing PROMs acceptance, while reducing inquiries and subsequent staff burden. Findings have implications for interpreting national statistics. They indicate that further debate about mandating preoperative PROMs is due.