“The worst has already happened”: communicating sensitively with bereaved survey participants

ISSUE: The National Care Experience Programme asks people about their experiences of health and social care services, including maternity bereavement and end-of-life care. The surveys aim to identify areas of good experience, as well as areas requiring improvement. Implementing surveys on sensitive topics involves a duty of care to participants to ensure the highest ethical standards and sensitive communication with bereaved parents and relatives. DESCRIPTION OF THE PROBLEM: Under General Data Protection Regulation, there is an obligation to be transparent with people in the event that they are invited to participate in a survey. This must be balanced with sensitive and respectful communication with those who have experienced a loss. The mode of contact and timing of surveys requires careful consideration. RESULTS: Bereaved parents and relatives, support organisations and subject matter experts were engaged with extensively to inform the National End of Life Survey and National Maternity Bereavement Experience Survey, including the mode of contact with eligible parents and relatives and the timing of surveys. A detailed communications plan was developed to share information across social media platforms, radio and relevant websites. Communication about the survey balanced key messages on the aims, methods and eligibility criteria with a sensitive and time-appropriate delivery. LESSONS: Both surveys asked about the lived experiences of significant, traumatic life events. Participation had the potential to place an emotional burden on participants, who had to relive their experiences of loss. In order to limit the potential harm, bereaved parents and relatives were involved in all stages of the survey development process. Information on support services was included with all survey invitations and documentation. Strong response rates highlight a willingness amongst bereaved parents and families to share their experiences to inform improvements to care.