What do we want to know?
Some individuals experience abnormally persistent and intense symptoms of grief that significantly interfere with daily functioning and increase the risk of adverse health outcomes. This condition has been described using terms such as complicated grief, prolonged grief and Prolonged Grief Disorder (PGD).
Our aim was to systematically scope and map the research evidence on grief, bereavement and PGD. We sought to identify the availability of evidence from systematic reviews on the following issues:
- the extent and nature of PGD;
- risk factors for PGD;
- grief and bereavement experiences including the needs of bereaved people and the barriers to accessing grief services;
- the effectiveness of interventions for preventing or treating PGD.
We also sought to identify primary studies reporting on the types of bereavement support services that are available in the UK.
Who wants to know?
This review was commissioned by the National Institute for Health Research Policy Research Programme for the Department of Health and Social Care. Its findings will be of primary interest to policy makers, practitioners, and researchers.
What did we find?
We identified 212 relevant systematic reviews, 96 review protocols and 16 primary studies. The largest group of reviews (n=103) and protocols (n=44) explored individuals’ grief and bereavement experiences. This encompassed reviews that addressed one or more of the following issues: the use of formal or informal sources of support; barriers to accessing support; equity related to grief/bereavement and the use of services; coping with grief; post bereavement needs; or views about the factors that facilitate or impair the grieving process. The second largest group of reviews and protocols focused on the effectiveness of grief-related interventions (80 reviews and 38 protocols). We identified 42 reviews and 14 protocols addressing risk and protective factors for prolonged grief. We also identified 37 reviews and six protocols that examined the relationship between specific factors and outcomes such as the severity or intensity of grief and individuals’ adjustment after bereavement rather than focusing on prolonged grief specifically. Another group of reviews (n=22) and protocols (n=12) focused on the extent and nature of prolonged grief amongst various groups of bereaved people. Fifty-five out of the 212 reviews and 17 out of the 96 protocols focused on two or more issues of interest. Many reviews and protocols also focused on specific populations, causes or types of death or deaths in specific settings. The 16 primary studies reported on one or more of the following issues: type of support provided by organisations (n=11); the availability of services (n=9); staff views about provision (n=6); service delivery issues (n=5); barriers to accessing services (n=2); and the socioeconomic costs of bereavement (n=1).
What are the conclusions?
Issues related to grief and bereavement, including PGD, have been extensively researched. However, we identified key evidence gaps, particularly in relation to experiences and needs of the most marginalised and disadvantaged communities; the cost-effectiveness of interventions, and interventions for addressing social, organisational, or structural-level factors that can impair the grieving process and potentially increase the risk of PGD.
How did we get these results?
We searched 12 databases and the websites of 18 organisations. We extracted key characteristics from included reviews, protocols and primary studies which allowed us to produce a high-level descriptive summary detailing the extent and nature of the current evidence base. We also created an interactive map of the evidence, which displays our findings visually and enables users to view the bibliographical details of included reviews and primary studies.