What factors are associated with informal carers' psychological morbidity during end-of-life home care? A systematic review and thematic synthesis of observational quantitative studies.

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.

Family carers are central in supporting patients nearing end of life. However, their own mental health may often suffer as a result. It is important to understand what makes carers' mental health better or worse, to support them appropriately and help them stay in good health. To synthesise what is known about what can affect carers' mental health during end-of-life caregiving. We identified research literature (1 January 2009­24 November 2019) that looked at factors that may make carers' mental health better or worse when supporting someone nearing end of life. We focused on adult carers of adult patients cared for at home. Researchers worked with the help of a carer Review Advisory Panel to group similar factors into themes. This report presents research that used numerical measurements (for instance, surveys) to investigate factors related to carers' mental health. Findings from 63 studies were grouped into seven themes: (1) How the patient was: worse patient mental health and quality of life related to worse carer mental health. (2) How much caregiving affected carers' lives: greater impact, burden and feeling tasks were difficult related to worse mental health. (3) Relationships: good relationships between family members and between carer and patient seemed important for carer mental health. (4) Finance: having insufficient resources may affect carers' mental health. (5) Carers' internal processes (carers' thoughts and feelings): feeling confident and prepared for caregiving related to better mental health. (6) Support: carers' mental health seemed related to support given by family and friends and to getting sufficient, satisfactory support from formal services. (7) Background factors: older carers seemed generally to have better mental health, and female carers worse mental health overall. Factors that may affect carers' mental health are many and varied. We therefore need a broad strategy to help carers stay in good mental health during caregiving.

Understanding what affects psychological morbidity in informal carers when providing care at home for patients at the end of life: a systematic qualitative evidence synthesis.

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.

Being a carer for a family member or friend at the end of their life can have an impact on the carer's mental health. This includes depression, anxiety, stress and feeling overwhelmed. If carers feel unable to cope, they may be less able to look after their relative or friend. The mental health of carers must be a priority to help them feel better, cope, and support patients. This review summarises information from research into things that carers say are important for their mental health, to help us understand how we may be able to maintain or improve carers' mental health. We worked with six carers in a Review Advisory Panel to search for studies on carers' experience published between 1 January 2009 and 24 November 2019 and identify common themes from identified studies. Themes were put into a table of themes and subthemes, assessed by the carers, and compared with other literature to identify factors that caused carers to have poor mental health, and ways to help carers feel better. We found six themes that indicate how caring for those at the end of life can affect mental health. These include: the impact of the patient condition and seeing the patient decline; the impact of caring responsibilities; carers' relationship with the patient; finances; carers' feelings and experiences such as lack of control or confidence when caring; and support from other family, friends and health-care professionals. Strategies to improve mental health were linked to the final two themes, including how to manage carers' views and experiences of their situation and how to gain appropriate support. This study describes factors that lead to poor mental health and ways to improve mental health when caring for someone at the end of life. Further work is needed to use this information to inform policy and service delivery.

Involving carer advisors in evidence synthesis to improve carers' mental health during end-of-life home care: co-production during COVID-19 remote working.

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.

Family carers are crucial in supporting people nearing the end of life, but their own mental health may often suffer as a consequence. This project summarised what is known about what makes carers' mental health better or worse. Researchers worked with a carer Review Advisory Panel to ensure that project findings were understandable and useful to carers. To report key findings on what made the teamwork between researchers and carers successful; to help improve teamwork in other projects; and to present carers' own recommendations on how to improve their mental health. Nine Review Advisory Panel meetings were held which included four to five carers, a lay Chair and three researchers. Important early preparation included getting to know each other and agreeing how to work together. Key meeting principles were: (1) bringing carer voices to the fore by having a majority of carers and an experienced carer as Chair; (2) highlighting the value placed on meetings by having several researchers attend, including the project lead; (3) flexibility to include carers' own agenda and project changes; and (4) appropriate and prompt carer payment. Meetings had to adapt to online working due to COVID-19. Carers moved from being advisors to taking more initiative and producing their own carer recommendations, which became a main project output. Written reflections by carers and researchers indicated that successful teamwork arose from a shared sense of purpose and gains, mutual commitment and respect, and bridging between researcher and carer perspectives through training, communication, negotiation and compromise. Early preparation helped the group adapt to the challenges of online working. Carer representation on other project committees could have been improved. Project principles enabled good researcher­carer teamwork and produced valuable carer recommendations, but need proper investment in time and resources. Online working can be successful, but needs good face-to-face preparation.

Contributors are representative, as long as they agree: How confirmation logic overrides effort to achieve synthesis in applied health research.

INTRODUCTION: The paradox of representation in public involvement in research is well recognized, whereby public contributors are seen as either too naïve to meaningfully contribute or too knowledgeable to represent 'the average patient'. Given the underlying assumption that expertise undermines contributions made, more expert contributors who have significant experience in research can be a primary target of criticism. We conducted a secondary analysis of a case of expert involvement and a case of lived experience, to examine how representation was discussed in each. METHODS: We analysed a case of a Lived Experience Advisory Panel (LEAP) chosen for direct personal experience of a topic and a case of an expert Patient and Public Involvement (PPI) panel. Secondary analysis was of multiple qualitative data sources, including interviews with the LEAP contributors and researchers, Panel evaluation data and documentary analysis of researcher reports of Panel impacts. Analysis was undertaken collaboratively by the author team of contributors and researchers. RESULTS: Data both from interviews with researchers and reported observations by the Panel indicated that representation was a concern for researchers in both cases. Consistent with previous research, this challenge was deployed in response to contributors requesting changes to researcher plans. However, we also observed that when contributor input could be used to support research activity, it was described unequivocally as representative of 'the patient view'. We describe this as researchers holding a confirmation logic. By contrast, contributor accounts enacted a synthesis logic, which emphasized multiplicity of viewpoints and active dialogue. These logics are incompatible in practice, with the confirmation logic constraining the potential for the synthesis logic to be achieved. CONCLUSION: Researchers tend to enact a confirmation logic that seeks a monophonic patient voice to legitimize decisions. Contributors are therefore limited in their ability to realize a synthesis logic that would actively blend different types of knowledge. These different logics hold different implications regarding representation, with the synthesis logic emphasizing diversity and negotiation, as opposed to the current system in which 'being representative' is a quality attributed to contributors by researchers. PATIENT OR PUBLIC CONTRIBUTION: Patient contributors are study coauthors, partners in analysis and reporting.

Participatory codesign of patient involvement in a Learning Health System: How can data-driven care be patient-driven care?

BACKGROUND: A Learning Health System (LHS) is a model of how routinely collected health data can be used to improve care, creating 'virtuous cycles' between data and improvement. This requires the active involvement of health service stakeholders, including patients themselves. However, to date, research has explored the acceptability of being 'data donors' rather than considering patients as active contributors. The study aimed to understand how patients should be actively involved in an LHS. DESIGN: Ten participatory codesign workshops were conducted with eight experienced public contributors using visual, collective and iterative methods. This led contributors to challenge and revise not only the idea of an LHS but also revise the study aims and outputs. RESULTS: The contributors proposed three exemplar roles for patients in patient-driven LHS, which aligned with the idea of three forms of transparency: informational, participatory and accountability. 'Epistemic injustice' was considered a useful concept to express the risks of an LHS that did not provide active roles to patients (testimonial injustice) and that neglected their experience through collecting data that did not reflect the complexity of their lives (hermeneutic injustice). DISCUSSION: Patient involvement in an LHS should be 'with and by' patients, not 'about or for'. This requires systems to actively work with and respond to patient feedback, as demonstrated within the study itself by the adaptive approach to responding to contributor questions, to work in partnership with patients to create a 'virtuous alliance' to achieve change. PATIENT OR PUBLIC CONTRIBUTION: Public contributors were active partners throughout, and co-authored the paper.

More than a method: trusting relationships, productive tensions, and two-way learning as mechanisms of authentic co-production.

BACKGROUND: Knowledge mobilisation requires the effective elicitation and blending of different types of knowledge or ways of knowing, to produce hybrid knowledge outputs that are valuable to both knowledge producers (researchers) and knowledge users (health care stakeholders). Patients and service users are a neglected user group, and there is a need for transparent reporting and critical review of methods used to co-produce knowledge with patients. This study aimed to explore the potential of participatory codesign methods as a mechanism of supporting knowledge sharing, and to evaluate this from the perspective of both researchers and patients. METHODS: A knowledge mobilisation research project using participatory codesign workshops to explore patient involvement in using health data to improve services. To evaluate involvement in the project, multiple qualitative data sources were collected throughout, including a survey informed by the Generic Learning Outcomes framework, an evaluation focus group, and field notes. Analysis was a collective dialogic reflection on project processes and impacts, including comparing and contrasting the key issues from the researcher and contributor perspectives. RESULTS: Authentic involvement was seen as the result of "space to talk" and "space to change". "Space to talk" refers to creating space for shared dialogue, including space for tension and disagreement, and recognising contributor and researcher expertise as equally valuable to the discussion. 'Space to change' refers to space to adapt in response to contributor feedback. These were partly facilitated by the use of codesign methods which emphasise visual and iterative working, but contributors emphasised that relational openness was more crucial, and that this needed to apply to the study overall (specifically, how contributors were reimbursed as a demonstration of how their input was valued) to build trust, not just to processes within the workshops. CONCLUSIONS: Specific methods used within involvement are only one component of effective involvement practice. The relationship between researcher and contributors, and particularly researcher willingness to change their approach in response to feedback, were considered most important by contributors. Productive tension was emphasised as a key mechanism in leading to genuinely hybrid outputs that combined contributor insight and experience with academic knowledge and understanding.

We conducted a study exploring how patients could be involved in improving services using health data. This paper reports on the evaluation of that study. We collected different kinds of feedback throughout, including a survey of impacts on contributors, a focus group to reflect on what worked well and what could be done better, and also sharing thoughts throughout the study itself. We analysed this feedback together, to make sure that both contributor and researcher perspectives were considered equally.We found that the successful co-production that happened during the study was the result of having 'space to talk' and 'space to change'. Space to talk that meant we all shared our views and recognised each other as experts bringing equally important knowledge. Space to change meant that we acted on the knowledge shared, to change both the study and to change how we worked together.We found that these themes occurred at multiple levels. They were partly achieved by the specific participatory codesign methods that were used, but equally or perhaps more important was the trusting relationship between the researcher and contributors, including openness to explore tensions. The wider systems that supported involvement, in this case the financial reimbursement for contributor time, were also as important to this as the things that happened within the study itself.We recommend that future work creates 'space to talk' and 'space to change', and reports openly on how both contributors and researchers are affected by this.