Dealing with chemotherapy-related symptoms at home: a qualitative study in adult patients with cancer

Abstract

Given that chemotherapy treatments are done mostly in an outpatient setting, patients with cancer must deal with treatment-related symptoms mainly at home. Evidence suggests that they often feel left alone or unprepared to do so. This qualitative study explores how patients deal with chemotherapy-related symptoms in their home, which factors and ideas influence their self-management and what role professional caregivers play. One-off, semi-structured interviews were held with 28 adult patients with cancer being treated with chemotherapy. Using a Grounded Theory approach, we cyclically collected and analysed data to come to a thorough understanding of the major conceptual themes and their interconnections. Dealing with chemotherapy-related symptoms involves a process of experiencing and learning how side effects unfold over time and how to deal with them. Patients express very personal symptom experiences and symptom-management styles, which are shaped by personal factors (e.g. coping with cancer and cancer treatment, perceived level of control) and environmental factors (e.g. professionals' attitude, information resources). Improving symptom self-management support requires active exploration of the personal symptom experience and symptom-management style. Professional care should be tailored to the patient's perspective and should address personal and environmental determinants of their behaviour.

The effects of an integrated supportive care intervention on quality of life outcomes in outpatients with breast and gynecologic cancer undergoing chemotherapy: Results from a randomized controlled trial

“…All CIM interventions had been standardized for the patient diary, 22 so that patients could follow the CIM instructions at home and take care of their symptoms themselves. 41 Preliminary results from the accompanying process evaluation 42 confirm that patients were highly interested to continue applying the CIM interventions after positive experiences and wished to sustain them. Patients underlined how important it was for them to act autonomously and get back to normal as early as possible.…”

“…Previous research has indicated that psycho‐educative interventions are most successful for cancer patients and survivors if these are administered during or at the end of a strenuous treatment phase, so that their needs to strengthen their competencies, self‐efficacy, and health behaviors can be early addressed, which is in line with the current findings. All CIM interventions had been standardized for the patient diary, so that patients could follow the CIM instructions at home and take care of their symptoms themselves . Preliminary results from the accompanying process evaluation confirm that patients were highly interested to continue applying the CIM interventions after positive experiences and wished to sustain them.…”

Experiences of caregivers with spouses receiving chemotherapy for colorectal cancer and their expectations from nursing services

“…To offer them more effective support, in-depth interviews which allow them to express their feelings and needs should be performed. [20] There have been very few studies about colorectal cancers and caregiving processes for colorectal cancer patients. There are studies about experiences of caregivers.…”

Patient and caregiver perspectives on decision support for symptom and quality of life management during cancer treatment: Implications for eHealth

“…Patients with cancer often undergo complex treatments. Responsibility for monitoring side effects has shifted to patients and their caregivers, who are often unprepared to self‐manage at home . In our study, patients often waited until their symptoms were so severe that some patients considered stopping treatment in part because they were not entirely sure when to call their clinicians.…”