'Phase of Illness' in oncology patients receiving specialist palliative home care: a mixed methods study on phase-specific burden, needs and use of resources.

Background: Data on ‘Phase of Illness’ in specialist palliative home care are not available in Switzerland. Our aim was to investigate oncology patients’ and family caregivers’ experiences of burden, needs and corresponding resource use within each ‘Phase of Illness’ and therefore to obtain an in-depth description of the characteristics of each ‘Phase of Illness’. Methods: Convergent parallel mixed methods design. Quantitative study strand (91 adult oncology patients and 54 family caregivers): medical/sociodemographic characteristics, phase-specific symptoms, burden, needs, use of resources. Qualitative study strand: semi-structured interviews with 8 patients and 12 family caregivers; focus group interviews with 20 nurses. Data analysis: factorial ANOVA, repeated-measurement ANOVA, qualitative content analysis, joint display tables. Results: Our analysis revealed the following core themes and priorities for action of each ‘Phase of Illness’: “ambivalence” with the aim to “keep it under control” (stable), “anxiety and uncertainty” with the aim of “de-escalation” (unstable), “the tangible end of life” with the aim of “enduring” (deteriorating), “clarity” with the aim of “focusing on essentials” (terminal), and “finality” with the aim of “finding a conclusion” (bereavement). Conclusions: The findings highlight the vulnerability and complexity of the burden and needs of oncology patients and their families receiving specialist palliative home care in all phases. Particularly in the stable and the bereavement phases, care concepts and funding principles within specialist palliative home care must be ensured to address the psychosocial vulnerability of patients and family caregivers.