Challenges in self-management of persons living with advanced cancer: An exploratory, in-depth interview study

Hanna Noorlandt, Rik Stoevelaar, Sophie van Dongen, Muzeyyen Arslan, Nancy Luu, Leonieke Kranenburg, Erica Witkamp, Carin van der Rijt, Kate Lorig, Agnes van der Heide, Judith Rietjens*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

2 Citations (Scopus)
65 Downloads (Pure)


Objective: To obtain insight in self-management challenges of persons with advanced cancer and factors that influence their self-management. Methods: Exploratory study among persons with advanced cancer. We conducted in-depth interviews and performed an inductive thematic analysis, using open, axial and selective coding. Results: We interviewed 33 persons with advanced cancer. Four self-management challenges were identified: (1) Dealing with physical and psychological symptoms and problems. (2) Navigating the illness trajectory, including management of clinical appointments and treatment regimens, end-of-life planning life and ‘maintaining normality’. (3) Managing relations with healthcare professionals, including contributing experiential knowledge to medical decision-making. (4) Navigating changes in the social environment. Some participants responded proactively to these challenges, for example, by actively searching for information to obtain an extensive understanding of their illness and (re)scheduling medical appointments for a better fit in their agenda. Self-management strategies seemed to be influenced by patients' personality, life history, moment in the illness trajectory and the social environment. Conclusion: Self-management challenges of persons with advanced cancer are based largely outside the professional care setting. Self-management strategies in response to these challenges are typically aimed at maintaining a normal life. Self-management support should be tailored to patients' needs and part of trustful partnerships with patients and relatives.

Original languageEnglish
Article numbere13638
JournalEuropean Journal of Cancer Care
Issue number6
Early online date21 Jun 2022
Publication statusPublished - Nov 2022

Bibliographical note

Funding Information:
This research was funded by the Dutch Research Council (NWO), Innovational Research Incentives Scheme Vidi (Grant 91717386).

Publisher Copyright:
© 2022 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.


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