Background Patients and caregivers in palliative care have capacity to support one another and cope with advanced illness. Joint adaptation to changing roles and mutual recognition of the challenges they face are reciprocal dimensions of support provision between patients and caregivers in palliative care.¹ However, few studies have explained how patients with advanced illness and caregivers are mutually supportive in palliative care. We aimed to identify processes of reciprocal support among patients and caregivers in palliative care.

Methods A qualitative study using the grounded theory method² was conducted with 15 patients and 21 caregivers recruited from a regional specialist palliative care service comprising two hospice sites. Sampling was purposive and theoretical. Data comprised a total of 30 semi-structured interviews using an interview schedule formulated for data collection. The data were analysed using grounded theory coding procedures and analytical memos were compiled to support the analysis.

Results Patient and caregiver reciprocal support manifested primarily in the form of emotional support. Caregivers provided emotional support to assist the patient cope with distress. Patients provided emotional support to alleviate caregiver strain, and particularly when they felt unable to reciprocate beyond emotional support. Patient and caregiver reciprocation in emotional support comprised mutual expression of affection and optimism, mutual disclosure about concerns, mutual effort to maintain constancy and normalcy, and mutual obligation to accommodate each other’s preferences for care. However, obligation to accommodate each other’s preferences resulted in patients and caregivers also concealing their distress from each other and in some cases, feeling constrained by one another when discussing treatment and care with healthcare professionals.

Conclusions Reciprocal support among patients and caregivers in specialist palliative care involves both disclosure and concealment. Healthcare professionals need to be alert to the impact of both disclosure and concealment in the decision-making process for treatment and care.

References

1. McCauley R, McQuillan R, Ryan K, et al. Mutual support between patients and family caregivers in palliative care: a systematic review and narrative synthesis. Palliat Med 2021;35:875–85.

2. Corbin J, Strauss A. Basics of qualitative research. Techniques and procedures for developing grounded theory (4th ed.). Thousand Oaks: Sage Publications, 2015.