Aims
Family caregivers regularly attend cancer consultations and provide emotional support, contribute information, and may be involved in decision-making (DM). There is limited extant literature which has examined family involvement in cancer consultations. This qualitative study aimed to explore patient, family and oncology health professional attitudes and experiences regarding family involvement.
Methods
Interviews were conducted with 30 patients, 34 family caregivers, 10 nurses and 11 oncologists examining attitudes and experiences. Recruitment continued until thematic saturation was reached. Interviews were analysed using framework analysis and 10 primary themes were identified.
Results
Results highlighted that health professionals, patients, and family caregivers typically held positive attitudes towards family involvement, and highlighted an array of family behaviours and roles both inside (e.g. information gathering and provision, emotional support, patient advocacy) and outside (e.g. pre-consultation preparation, family liaison, decision-making sounding board) of the consultation. Some roles were felt to be more helpful (e.g. informational/emotional support) than others (e.g. dominating behaviours), and preferences for the nature and extent of family involvement varied widely. Whilst appreciating family involvement and noting the impact of cancer on the family, most participants believed the patient should remain the priority within the consultation and retain authority over decisions. Interviews revealed perceived benefits (e.g. support, improved recall, reduced patient burden) and a number of challenges (e.g. dysfunctional family dynamics, conflicting treatment wishes, reduction of patient privacy) of family involvement.
Conclusion
Family involvement in cancer consultations can be helpful but challenging. Whilst participants held primarily positive views towards family caregivers, a number of challenges were described and opportunities were noted to potentially to maximise positive family contributions and ensure family caregivers are adequately supported. Greater understanding of the actual behaviours of family caregivers and family-relevant behaviours of oncologists and patients is needed.