Background
Bereavement support is a core part of palliative care. However, the evidence base is limited by a lack of consistency in the outcomes used to evaluate services and models of support, which makes it difficult to compare approaches. Core Outcome Sets (COS) represent the minimum that should be measured in research into specific conditions or services. The aim of this study was to use a stakeholders’ perspective to develop a COS for evaluating bereavement support for adults in adult palliative care settings.
Methods
A list of outcomes relevant to bereavement support was created following a systematic review of the quantitative and qualitative literature. At an expert workshop 21 stakeholders discussed their views on the most important outcomes and compared these to and critiqued the lists constructed from the review. These lists and discussions informed a two round international DELPHI survey (n =?240) designed to reach consensus on which outcomes/outcome dimensions should be included in the COS. To prioritise and validate the items emerging from the survey, participants at a subsequent consensus day ranked the relative importance of these items (n =?23). A final feedback exercise with these consensus day participants was conducted to confirm the selection of outcomes and dimensions.
Results
‘Ability to cope with grief’ and ‘Quality of life and mental wellbeing’ were selected as two core outcomes. Twenty-one different dimensions to explore when assessing these outcomes were also identified. The coping related dimensions have been categorised as: Negative and overwhelming grief; Communication and connectedness; Understanding, accepting and finding meaning in grief; Finding balance between grief and life going forwards; Accessing appropriate support. Those relating to quality of life and wellbeing have been categorised as; Participation in work and/or regular activities; Relationships and social functioning; Positive mental wellbeing and Negative mental and emotional state.
Conclusion
This COS outlines a more consistent way forward for bereavement researchers and practitioners, whilst also orientating towards public health and resilience-based approaches to bereavement care. Further work is planned to identify and develop measures which are specific to this core outcome set, and which will facilitate the future comparability of bereavement services and interventions.
Emily Harrop, Hannah Scott, Stephanie Sivell, Kathy Seddon, Jim Fitzgibbon, Fiona Morgan, Sara Pickett, Anthony Byrne, Annmarie Nelson & Mirella Longo
Disease Category: Other
Disease Name: N/A, Palliative care
Age Range: 0 - 100
Sex: Either
Nature of Intervention: Psychological & behavioural, Palliative
- Clinical experts
- Consumers (caregivers)
- Researchers
- COS for clinical trials or clinical research
- Systematic review of outcomes measured in trials
- COS for practice
- Consensus meeting
- Delphi process
- Systematic review
- Semi structured discussion
A list of outcomes relevant to bereavement support was created following a systematic review of the quantitative and qualitative literature. At an expert workshop 21 stakeholders discussed their views on the most important outcomes and compared these to and critiqued the lists constructed from the review. These lists and discussions informed a two round international DELPHI survey (n =?240) designed to reach consensus on which outcomes/outcome dimensions should be included in the COS. To prioritise and validate the items emerging from the survey, participants at a subsequent consensus day ranked the relative importance of these items (n =?23). A final feedback exercise with these consensus day participants was conducted to confirm the selection of outcomes and dimensions.