title: The complexities of recruiting bereaved family members into a research study in the critical care environment: a discussion paper.
abstract: Research on the effects of stressful events on human health and wellbeing has progressed in recent years. One such stress, bereavement, is considered one of life's greatest stresses, requiring significant readjustment. The Cardiovascular Risk in Bereavement study (CARBER) investigated in detail cardiovascular risk factors during the first weeks following the death of a partner or adult child in the critical care environment. The purpose of this paper is to explore the once held perception that the bereaved population should not be involved in research, using an actual illustrative project. The paper specifically focuses on the challenges regarding acceptability and feasibility of recruitment of recently bereaved individuals from the critical care environment. The question of whether bereaved individuals have capacity to consent to involvement in research immediately after loss is considered. The appropriateness of asking newly bereaved individuals to participate in research immediately after the death of their relative is also discussed. The work of the research team demonstrates that early recruitment of bereaved family members into a research project is feasible and acceptable to participants, especially when a multidisciplinary collaborative approach is employed and a personal mode of recruitment used.
authors.affiliation: Royal North Shore Hospital, Sydney, Australia. Electronic address: victoria.whitfield@health.nsw.gov.au.
authors.forename: Victoria
authors.initials: V
authors.lastname: Whitfield
authors.affiliation: Royal North Shore Hospital, Sydney, Australia.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Havyatt
authors.affiliation: Royal North Shore Hospital, Sydney, Australia; University of Sydney, Australia.
authors.forename: Thomas
authors.initials: T
authors.lastname: Buckley
authors.affiliation: Royal North Shore Hospital, Sydney, Australia; University of Sydney, Australia.
authors.forename: Roger
authors.initials: R
authors.lastname: Bartrop
authors.affiliation: Royal North Shore Hospital, Sydney, Australia.
authors.forename: Sharon
authors.initials: S
authors.lastname: McKinley
authors.affiliation: Royal North Shore Hospital, Sydney, Australia.
authors.forename: Diane
authors.initials: D
authors.lastname: Roche
authors.affiliation: Royal North Shore Hospital, Sydney, Australia.
authors.forename: Monica
authors.initials: M
authors.lastname: Spinaze
authors.affiliation: St Vincents Hospital, Sydney, Australia.
authors.forename: Margaret
authors.initials: M
authors.lastname: Bramwell
authors.affiliation: Royal North Shore Hospital, Sydney, Australia; University of Sydney, Australia.
authors.forename: Geoffrey
authors.initials: G
authors.lastname: Tofler
mesh_terms: D054058:Acute Coronary Syndrome / Q000209:etiology*; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001293:Attitude to Death; D001601:Bereavement; D003422:Critical Care; D016757:Death, Sudden, Cardiac / Q000209:etiology*; D032984:Ethics, Research; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D035842:Research Subjects / Q000523:psychology*; D012307:Risk Factors
keywords: Bereavement; Critical care; Ethics; Recruitment; Research