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

Abstract

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.

A qualitative study on redefining normality in relatives of patients with advanced cancer

“…Interviewers also took field notes. Additional information on the research team and reflexivity of the original study is reported elsewhere 19 . After the interviews, participants completed a questionnaire on demographic characteristics (e.g., type of cancer, year of diagnosis, and current treatment).…”

“…The present explorative study is nested in a qualitative study in which in‐depth interviews were conducted with patients with advanced cancer and their relatives, to gain understanding of their challenges in self‐management 19 . Both studies adhere to the COREQ (COnsolidated criteria for REporting Qualitative research) Checklist for qualitative research 20 .…”

“…A daily routine provides a distraction from the disease and has a relieving effect 9 . Within striving for normality in the palliative context, patients and their relatives also try to appreciate life through “living in the moment.” 17–19 Living from day to day helps to focus on the actual moment and to not become overpowered by speculations about the future. Relatives find it hard to “achieve a balance […] to deal with their own lives and with their everyday life with the ill person, balancing between the old and the new life situations.” 20 By planning in the short term, relatives can maintain daily life, but constantly with some uncertainty, as everyday planning depends on the patient's health status 20–22 .…”

“…9 Within striving for normality in the palliative context, patients and their relatives also try to appreciate life through "living in the moment." [17][18][19] Living from day to day helps to focus on the actual moment and to not become overpowered by speculations about the future. Relatives find it hard to "achieve a balance […] to deal with their own lives and with their everyday life with the ill person, balancing between the old and the new life situations."…”

Timely integration of palliative care into cancer care

“…In addition to training and education of healthcare professionals to provide high-quality palliative care to patients with incurable cancer and their family caregivers, it also seems beneficial to equip patients and family caregivers themselves. In this issue, Noorlandt et al interviewed 33 patients with advanced cancer about their self-management challenges and showed that many of the challenges occur outside the professional care setting, underscoring the importance of broadening the scope beyond the care setting (Noorlandt et al, 2022). One of these challenges may be work-related.…”