Patient and caregiver perspectives of an early integrated systemic sclerosis palliative care clinic: a qualitative study

Abstract Objectives Individuals with systemic sclerosis (SSc) and their caregivers have unmet palliative care needs, yet the role of palliative medicine in SSc is unclear. In this study, we aimed to explore patient and caregiver perspectives of a newly developed early, integrated SSc-specific Palliative Care Clinic. Methods All patients and caregivers who attended the SSc Palliative Care Clinic within the first six months of its implementation were invited to participate in a semi-structured phone interview. Interviews were audio-recorded, transcribed and analysed using reflexive thematic analysis. Results Six patient interviews, three caregiver interviews, and three patient-caregiver dyad interviews were performed. The SSc Palliative Care Clinic was valued and accepted by patients and caregivers. The experience of living with, and caring for, SSc was described in all interviews. Four further themes were identified, describing the experience of attending the SSc Palliative Care Clinic: the valued integrated structure of the clinic including the value of interdisciplinary care; respectful communication style of the physician that patients found non-judgemental, supportive and empathetic; the dichotomy of receiving palliative care that included the relief of discussing symptom burden and hope arising from active symptom management with distress from the term palliative; and diverging views of future care discussions. Conclusion The SSc Palliative Care Clinic was both accepted and valued by patients and caregivers. Findings highlighted the need for palliative care delivery to be sensitive and person-centred, with such care being observed to foster hope and optimism for both patients and their caregivers.