Aims: Family carers often attend medical consultations and can be valuable members of a patient’s health care team, however they are often unsure of their role and censor their own concerns in consultations. Additionally, clinicians report some challenges of having family involved (e.g. conflicting patient-family treatment wishes). The aim of this systematic review was to assess the existing interventions for optimising effective family involvement in consultations and decisions.
Methods: Relevant studies published from 1950-2018 were identified via database searches (Medline, Scopus, CINAHL and PsycINFO). Studies were included if they described interventions directed at family carers aiming to improve communication with health professionals or involvement in consultations/decisions. Two authors assessed the eligibility and quality of the included articles.
Results: Of the 1267 titles retrieved, 11 studies were included in the final review, with the majority targeting carers of cancer patients. Two randomised controlled trials (RCTs) were identified: one reported a question prompt list (QPL) increased carers’ raising of questions/concerns in consultations; the other reported a nurse delivered telephone coaching intervention which reduced carers’ depression, compared to waitlist controls. Three studies were pre-test/post-test evaluations of in-person skills workshops, which reported increased carer self-efficacy and helpful in-consultation behaviours. A webinar was also found to increase carer self-efficacy. Four studies piloted tools (two checklists, a QPL and written communication guide), which were accepted by carers and reported to enhance their involvement in consultations, and one piloted telephone coaching, reporting improved carer confidence and decreased distress.
Conclusion: Interventions have been delivered across diverse formats, with positive behavioural and psychological outcomes reported. However, only two interventions have been rigorously tested in RCTs, and most focus on improving carer informational support only. Few studies adequately addressed carer involvement in decision-making, and other non-informational roles of carers in consultations (e.g. advocate, emotional support). Comprehensive evidence-based interventions are needed.