How bereaved families conceptualise good care and communication in intensive care in South Australia

Since 2018, DonateLife South Australia and the Royal Adelaide Hospital (RAH) have collaborated to deliver routine family follow-up after bereavement in the intensive care unit (ICU). This follow-up includes a telephone interview that invites bereaved family members to comment on the quality of care and communication experienced in the ICU. To identify bereaved families' experiences, including how they conceptualise good care and communication in intensive care, an analysis was conducted on all qualitative data collected during 118 interviews completed between 1 February 2018 and 30 May 2019. Reflexive thematic analysis was undertaken in an inductive and semantic way, with coding and theme generation being directed by the explicit content of the data, as conceptualised by Braun and Clarke. Initial codes were based on the interview questions, then additional codes were created during data analysis. Coding was informed by philosophical insights about concepts and the spirit of interpersonal engagement developed by Wittgenstein and Cordner, respectively. A concept map of the relationships observed between patterns of meaning in the data was created. Participants deeply appreciated staff providing them and their loved one with practical expressions of care and hospitality, however modest. These, along with staff sometimes crossing professional boundaries, expressed staff's spirit of engagement, which in turn helped to maintain the patient's dignity. Private space also helped to maintain the patient's dignity, and it helped family to have enough time to say goodbye. Family not feeling rushed and being informed about their loved one dying also helped family to have enough time to say goodbye. Being informed depended on the quality of doctors' communication. When family were not clearly informed, or had to wait long periods, they felt rushed and that they did not have enough time to say goodbye. Documents written to guide the assessment of intensive care comment on almost all of these matters, but the present study newly maps how they interact based on the extensive empirical evidence that it collected. Guidance documents should comment on giving staff scope to occasionally traverse a boundary, such as an institutional border or rule, to better support the patient and family, since families experience exceptionless practice insensitive to context as callous or disruptive of care.