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Abstract
Objectives Patients with advanced illness and their family caregivers can be mutually supportive. However, what facilitates and/or restricts supportive relationships between patients and family caregivers in palliative care remains unclear. We aimed to identify key barriers to and facilitators of supportive relationships between people with advanced illness and family caregivers in specialist palliative care.
Methods A qualitative study using grounded theory methodology was conducted. Semistructured interviews were undertaken with 15 patients with advanced illness and 21 family caregivers purposively and theoretically sampled from a large regional specialist palliative care service. Verbatim transcripts were analysed in line with grounded theory coding procedures.
Results Mutual support was underpinned by mutual concern and understanding. Facilitators of supportive relationships included patients and family caregivers already having a close relationship, caregivers assuming caregiving duties by choice, caregivers feeling competent in a caregiving role, patients valuing caregiver efforts, availability of respite for the caregiver and direct support from healthcare professionals to help both patients and caregivers adjust to advanced illness. Barriers to supportive relationships included absence of support from the wider family, prior mutual conflict between the patient and caregiver, caregivers feeling constrained in their caregiving role and patient and caregiver distress induced by mutual loss.
Conclusions Multiple factors at both a micro (eg, relationship based) and mesolevel (eg, assistance from services) impact patient and family caregiver ability to support one another in specialist palliative care. Supportive relationships between patients and family caregivers are mediated by feelings pertaining to both control and loss.
- Cancer
- Bereavement
- Family management
- Supportive care
- Psychological care
- End of life care
Data availability statement
Data are available on reasonable request.
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Data availability statement
Data are available on reasonable request.
Footnotes
Twitter @rachelcmccauley, @Lucy_Selman, @foleyg31
Contributors GF designed the study and obtained funding as primary investigator to conduct the study. GF supervised the research. RMcCauley engaged directly with gatekeepers, recruited participants, undertook the interviews and analysed the data. GF assisted with interpretation of the data. The final narrative was refined by all authors. KR and RMcQuillan facilitated recruitment and advised on recruitment strategies. GF wrote the manuscript assisted by RMcCauley. KR, R McQuillan and LES made critical contributions to the manuscript. All authors reviewed, commented on and approved the final version. GF is the guarantor of this study.
Funding This study was funded by a Trinity College Dublin Provost’s Project Award.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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