24 What information should hospices collect relating to the implementation of bereavement services? Results from a delphi survey

Background A recent Marie Curie funded study identified two core outcomes for evaluating the impact of bereavement support on adult service users in adult palliative care. This project involved a systematic review, consensus days and a two round Delphi Survey with expert stakeholders (Harrop et al. 2018). Whilst the primary focus of the study was on establishing stakeholder agreement on service user outcomes, discussions that took place during the first consensus day also identified interest in what implementation and demographic data should be collected. The DELPHI questionnaire directed at researchers and service providers therefore also included a section around service implementation. Methods Researcher and Service Provider respondents to the Delphi Survey were asked to rate the importance of recording information about: how the service was implemented; users’ sociodemographic information; unintended negative impacts and costs and value for money. The respondents answered a five-point Likert scale. Answers were grouped into categories of low and high importance. Low importance included ‘Not-important’, ‘Slightly important’ and ‘Moderately important’ answers. The high importance category comprised the answers ‘Important’ and ‘Very important’. Results A total of 106 participants were classified as service providers. Over 80% of service providers thought it important or very important to collect information about: Accessibility of service/intervention (94%), details around the service provided/intervention (88%), knowledge and competency of staff/volunteers (93%), supportive relationships (83%), unintended negative impact of the service (83%) and users’ satisfaction with the service (93%). Opinion was more divided around the importance of collecting information around value for money and the environment. In terms of user demographics respondents felt that it was very important or important to collect information about relationship to the deceased (86%) and caring role (81%), whereas they thought that collating information around age, gender, religion, ethnicity and socio-economic status was not paramount. Conclusions Whilst a large percentage of respondents agree on the importance of collecting certain information, opinion is quite divided on other items, in particular socio-demographic data. This needs to be investigated further because some of this information is important to assess issues of equity of access to bereavement services. Future work should define the minimum dataset of information which should be routinely collected by hospices.