The end is just the beginning: Involving bereaved next of kin in qualitative research

ABSTRACT

Introduction: Almost half the UK population die in hospital and more than two thirds of these are aged 75 years or more.1 Older people make up an increasing proportion of patients admitted to critical care and often have poorer outcomes, especially in the context of COVID-19.2 Loved ones are an essential support network for older patients but their ability to provide support was compromised by visiting restrictions during COVID-19. Little is known about the experiences of older patients in ICU and there is limited literature on the experiences of bereaved relatives.3 Bereaved relatives may be the only way to access the experiences of patients who do not survive, but there are a number of barriers to including bereaved relatives in research. Researchers may feel inhibited from imposing what might be seen as an additional burden on families during the aftermath of a bereavement. The ongoing ESCAlation of the eLderly (age >65years) to criTical carE with COVID-19) (ESCALATE) study includes semi-structured interviews with bereaved loved ones as well as patients and NoK of survivors in the UK. Objectives: To describe successful involvement of bereaved next of kin in critical care-based research Methods: This qualitative research uses semi-structured interviews and thematic analysis. Patient and public involvement from an intensive-care focused charity and local palliative care team advice was sought in order to develop recruitment strategies such as detailed, sympathetically worded participant information packs.4 In keeping with the literature,5 the window for recruitment and interview was approximately one year following bereavement. Following ethical approval, participants were recruited via postal invitations with follow up telephone calls if no response after a minimum of one week. Results: Recruitment was limited by only 40% of bereaved NoK (next of kin) having postal addresses recorded on the hospital systems. 9 /40 bereaved NoK contacted by letter responded and as well as completing a questionnaire, consented to be interview. A further 5/11 contacted by follow-up telephone call agreed to participate (consistent with response rates for patients and NoK of survivors). All of the interviewed bereaved participants completed the interview according to the interview topic guide, with each interview lasting around 45 minutes. More than half were female, and three quarters were Black, Asian or Minority Ethnic. Bereaved relatives were keen to share their experience and some even volunteered additional information with the interviewers, such as resources they had created for their local community and personal diaries. Participants reported that they were happy to be interviewed if it would help others in a similar position. Conclusion: Bereaved relatives of critical care patients are willing to engage in qualitative research. Recruitment is challenging due to practical constraints, but we suggest could be improved through meticulous documentation of contact details and involvement of bereavement services in research. By seeking the views of bereaved loved ones, we can improve care for critically unwell patients at end of life.