Mutual Support Between Patients and Family Caregivers in Palliative Care

Abstract

Background: Palliative care is an interdisciplinary care approach to improve quality of life and alleviate symptom distress for people living with life-limiting conditions and their families. A systematic review conducted by the author found a lack of evidence on how the patient and family caregiver in palliative care reciprocate in the provision of support to one another. This study sought to identify processes of mutual support between patients and family caregivers in palliative care, what facilitates and/or restricts mutual support between them, and how mutual support impacts on how both engage in the decision-making process pertaining to care.

Methods: A qualitative study using grounded theory methodology was conducted with 15 patients with advanced illness (cancer n=14, neurodegenerative n=1) and 21 family caregivers. Participants were purposively and theoretically sampled from a large regional specialist palliative care service. Data collection comprised 30 semi-structured interviews focused on the topic. Interviews were digitally recorded, transcribed, and then member checked with participants. The data were analysed using grounded theory coding procedures and memos were recorded to aid the analysis.

Findings: Mutual support comprised two main forms - direct and indirect. Direct mutual support occurred when patients and family caregivers reciprocated by providing similar types of support to one another and which manifested as emotional support. Indirect mutual support occurred when patients reciprocated by providing emotional support to the family caregiver in lieu of other supports they felt no longer able to provide. Mutually supportive behaviours comprised mutual disclosure, open communication, overt expression of affection and gratitude, remaining positive for one another, seeking to maintain normalcy for one another, providing counsel to each other, adapting to the challenges of life-limiting illness together, and making decisions about palliative care together. Mutual support was underpinned by mutual concern which could result in mutual concealment of distress and care preferences. Facilitators of mutual support included the family caregiver feeling competent in a caregiving role, patients and family caregivers having had a close relationship prior to the patient's illness, having trust in one another, both feeling they had some control and choice in their relationship, being intuitive about each other's needs, and having support from formal healthcare services and the wider family. Barriers to mutual support included prior conflict between the patient and family caregiver, the absence of wider family support for the family caregiver, conflict within the wider family, and bereavement experienced by both the patient and family caregiver. Patients reciprocated family caregiver support by involving them in decision-making about their care. Family caregivers who felt they assumed caregiving by choice tended to be directly involved in decision-making. Family caregivers who felt obliged to care indicated they had limited choice in a caregiving role and reported difficulty communicating with the patient in the decision-making process for care.

Conclusions: Multiple micro (i.e., relationship based) factors impact on the patient and family caregiver capacity to support one another in palliative care. Mutual support between patients and family caregivers in palliative care can function in the context of both obligation and choice. The findings serve to inform the development of psycho-social interventions for patients and family caregivers in palliative care where the focus is on facilitating both the patient and family caregiver in the decision-making process for care.