Below are two summaries of the work we are doing.

The first is a ‘plain English summary’ and should be a fairly easy read.

The second summary uses more technical language and concepts. This version might be more useful to other researchers or anyone interested in seeing lots of detail.

 

1. Plain English Summary

The aim of the research is to help reduce poor psychological health (e.g. anxiety, depression) among family and friends (‘carers’) who care for patients at the end of life. We will do this by pulling together existing knowledge (‘review’) about the things (‘factors’) that may cause poor carer psychological health. We will then share that knowledge with other carers, health and social care practitioners, politicians, commissioners, and researchers (‘stakeholders’). Stakeholders will then be able to use the knowledge to improve outcomes for carers and patients.

 

Carers give invaluable care and support to people who are nearing end of life, and may spend an average of 70 hours a week on caregiving in the final months. This can take its toll on carers’ psychological health: most suffer anxiety, depression and stress at levels that give cause for concern. However, there are a number of factors that protect carers from, or make them more prone to, suffering worse psychological health during end of life caregiving. These factors may relate to their background situation (say, work commitments) or individual ability to cope (say, how prepared they are for caregiving). Pulling together and sharing a better understanding of these factors can help us reduce poor psychological health among carers. This probably does not need new, costly interventions. A lot of improvement is likely to be possible by earlier and better targeted use of existing resources if we have better guidance on who is more likely to be at risk, when and how.

 

We will therefore gather together, organise and summarise, for the first time, the research literature about factors related to poor psychological health for carers during end of life care. This will identify the factors and find out which ones are most important. We will put the findings into an overview. Carers will work with us to ensure we include all factors they think are relevant and that we summarise the findings in a way that they think makes sense.

 

We will work with practitioners, carers, policy makers, commissioners and researchers to identify the overview content that is relevant to each stakeholder group. We will present the overview using language and a format that is useful and accessible to them (for example, tailored executive summaries or leaflets). This will help each stakeholder group in different ways. For example, it may help: politicians to write legislation or allocate funding that can help carers; commissioners to identify what services may be most useful to different carers; or practitioners to identify warning signs to look out for and what may help; and help carers to look after their own health. Researchers would also be able to use the findings to fill gaps in our understanding and develop better interventions for carers.

 

We will, in particular, explore how our findings may be used by primary care practitioners to support carers, as it is these practitioners who are most likely to come into contact with carers at an early stage of caregiving. We will ask practitioners and carers how the findings could help early primary care assessment and support of carers that may be at risk of developing poor psychological health.

 

We will share the findings of the project through publications, presentations, webinars, and an online collection of project outputs and blogs. With participating stakeholders we will work out particular ways of sharing appropriate for each stakeholder group.

 

2.Technical summary

Research questions:

• What factors increase or decrease psychological morbidity in informal carers (family and friends) of patients at end of life?
• What are the most accessible and useful formats for communicating this evidence to stakeholders to help them better target efforts to reduce carer psychological morbidity?

 

Some 500,000 UK informal carers provide substantial care input for patients at the end of life (EOL) p.a., enabling care at home and reducing likelihood of acute hospital admissions. However, carers suffer high levels of clinically significant psychological morbidity with up to 83% of carers affected in the patient’s final three months. Psychological morbidity impacts negatively on carer coping, increases mental healthcare costs and affects the costs and quality of patient EOL care. Both external and internal factors affect carers’ likelihood of developing psychological morbidity, many of which could be ameliorated through existing health and social care provision through better informed investment and targeted, earlier support to those most likely to develop psychological morbidity. However, evidence relating to these factors has not been synthesised, and does not exist in an accessible format for key stakeholders.

 

Aim: to reduce psychological morbidity among EOL carers through:

(1) evidence-synthesis of factors affecting EOL carer psychological morbidity

(2) translation of synthesised findings into accessible, tailored information for key stakeholders to enable better targeted efforts to reduce carer psychological morbidity and its impacts

 

These two aims are mapped onto two Work Packages (WPs):

 

WP 1 (Month 1-15):

Comprehensive mixed-method literature review and synthesis, including

• Review of quantitative observational studies using box score and meta-analyses
• Review of qualitative studies using a thematic best-fit framework synthesis approach
• Review of interventions using pooled effect sizes and sub-group analyses
• Integration of review findings into a framework informed by stress models and carer perspectives using narrative, graphical and numerical display tools.

Carer (PPI) advisors and a carer co-analyst will inform the search strategy, qualitative thematic analysis and framework construction to ensure that outputs are relevant and accessible to carers.

 

WP2 (Month 9-18):

Stakeholder involvement to translate WP1 findings into bespoke information, priorities and procedures

• Evidence review stakeholder workshop (N=30) with policy makers, commissioners, researchers, practitioners, and carer representatives to assess relevance of findings to their respective spheres of influence (settings and systems) and identify the most important information and priorities for each
• Translation work with our Review Advisory Panel (N=10) to develop dissemination outputs and dissemination strategies appropriate for each stakeholder group.
• Focus groups with practitioners and carers (N=6x2) to explore how project outputs may be operationalised into primary/ community care procedures

 

The project will have impact by providing the first comprehensive evidence synthesis of factors affecting the psychological morbidity of carers and delivering it in accessible format to stakeholders best placed to act on it. Effective knowledge mobilisation will be aided by tailored outputs and dissemination, informed by stakeholders, as well as publication, presentations, and online/electronic communication.