Bereavement support in Primary Care: a neglected, difficult and sensitive research area - Testing a novel recruitment method for recently bereaved people in the community

Problem

Bereavement is a common and stressful life-event. It can affect physical and mental health and increases demand for healthcare services. NICE guidelines state that “everyone should be given bereavement support according to their needs and preferences”. General practices are well positioned to provide universal low-level bereavement support and onward referral and already do so. However evidence based guidelines for bereavement support in primary care are lacking and practitioners are often unsure how to best support bereaved people, and support preferences of the bereaved in the context of primary care are unknown. These knowledge gaps prevent high quality of care and go back to shortcomings of the current primary care bereavement research, a neglected area. The few existing studies are often limited by recruitment biases, low participant numbers and recall bias.Aim of the Bereavement Support Study was it to assess the feasibility and acceptability of a novel recruitment method for recently bereaved people in the community.

Approach

In a novel recruitment approach, recently bereaved people were invited to take part in a questionnaire study when registering a death. Registry Officers handed out study packs (invitation card, reply slip, prepaid envelope and bereavement support leaflet), as appropriate. University research ethics approval was obtained.Over a 12 week period across Peterborough (single site) and Cambridgeshire (multi-site), Registry Officers distributed 1069 study packs.On receipt of reply slip, participants were sent further study information. This was followed after 6 weeks with a postal questionnaire concerning bereavement support, with freepost envelope and bereavement support services leaflet. Questionnaires could also be completed online. Non-responders were sent a reminder after 2 weeks. A subsample of Registry Officers (n=6) and bereaved people (n=13) were interviewed.

Findings

Between 25/07/2016 and 14/10/2016, 1726 deaths were registered and 1069 study packs were handed out.72 reply slips and 6 online questionnaires were returned (response rate 7%). Over 50% of reply slips were returned within a week of registering the death. The questionnaire response rate was 83% (60/72).Interviews highlighted that the bereaved and Registry Officers felt comfortable with the study approach: no distress was reported.

Consequences

Response rate was lower than anticipated and below levels seen in other bereavement studies (~20%). This may be related to timing so soon after the death. Despite our expectation that bereaved people might follow the study invitation later on -after the funeral, participation was highest within 1 week after death. Whilst a low response rate was achieved, novel data were obtained from early in bereavement and the recruitment method was found to be acceptable by all consulted participants. We conclude that a sensitive approach to the newly bereaved to participate in research can be appropriate.