Early integration of palliative cancer care: patients’ and caregivers’ challenges, treatment preferences, and knowledge of illness and treatment throughout the cancer trajectory

Martina Preisler, Silke Heuse, Manuel Riemer, Friederike Kendel, Anne Letsch

Early integration of palliative care (EIPC) into oncology is beneficial for cancer patients and their caregivers. Best practice models of EIPC throughout the course of cancer treatment aim to support patients and caregivers in meeting their individual needs. So far, we know little about whether EIPC offers should be phase-specific or patient-centered. This study investigated patients' and caregivers' needs considering individual challenges, treatment preferences, and knowledge over the cancer trajectory. Semi-structured qualitative interviews and pre-interview questionnaires were conducted with 11 cancer patients and 9 caregivers. A modified grounded theory approach was used to analyze the interview data applying thematic analysis and reflective principles by using MAXQDA. Our data showed no clearly distinct pattern of illness-phase-specific needs of patients and caregivers. Support needs were dependent on the significance and interpretation of events by patients and caregivers. Mastering challenges was highly individual and influenced by personal and contextual factors. Our results showed that subjective theories of illness significantly influenced experience, information requirements, treatment preferences, and the feeling of patients and caregivers "to be in good hands." The physician-patient relationship was of central relevance and has a major gatekeeper function for EIPC. Access to the medical care system, resources, and information appeared to be based on chance. For optimal EIPC, it is necessary to improve structural conditions such as more structured information about resources and procedures. Subjective theories of illness need to be continuously considered by practitioners in order to recognize the individual need for support.