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

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Abstract

Purpose

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.

Methods

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.

Results

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.

Conclusions

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.

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Author information

Authors and Affiliations

  1. Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Medical Department, Division of Hematology and Oncology, Campus Benjamin Franklin, Berlin, Germany

    Martina Preisler & Anne Letsch

  2. Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Institute of Medical Psychology, Campus Mitte, Berlin, Germany

    Silke Heuse & Friederike Kendel

  3. Centre for Community Research Learning and Action, Wilfrid Laurier University, Waterloo, Canada

    Manuel Riemer

Authors
  1. Martina Preisler
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  2. Silke Heuse
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  3. Manuel Riemer
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  4. Friederike Kendel
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  5. Anne Letsch
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Corresponding author

Correspondence to Martina Preisler.

Ethics declarations

The study was approved by the Research Ethics Committee of Charité University medicine, Germany (No. EA1/079/14).

Conflict of interest

The authors declare that they have no conflicts of interest.

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Preisler, M., Heuse, S., Riemer, M. et al. Early integration of palliative cancer care: patients’ and caregivers’ challenges, treatment preferences, and knowledge of illness and treatment throughout the cancer trajectory. Support Care Cancer 26, 921–931 (2018). https://doi.org/10.1007/s00520-017-3911-5

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  • DOI: https://doi.org/10.1007/s00520-017-3911-5

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