The perspective of being a family caregiver of a patient treated for oesophageal cancer : problems and needs

Abstract

There is a need to put family caregivers on the cancer survivorship research agenda. Research among family caregivers of patients treated for oesophageal cancer is sparse. However, it has been indicated that they are at an increased risk of emotional distress in terms of anxiety and depression. To better understand the family caregivers’ situation there were two main aims of this thesis; 1) to explore the family caregivers’ experiences at one and two years after the patients’ surgery (study I-II) and 2) to investigate which factors impact the family caregivers’ health-related quality of life (HRQL) (study III-IV).

Study I: This qualitative study used material from a Swedish nationwide and prospective cohort including patients surgically treated for oesophageal cancer and their closest family caregivers. Family caregivers received a questionnaire-kit one year after the patients’ surgical treatment. For this study, the responses to one open-ended question “Is there anything else you would like to share?” were analysed by using thematic analysis. In total, 112 responses from family caregivers to the open-ended question were included. The analysis rendered three themes: Discontinued support from healthcare – family caregivers had a positive experience during treatment, however, after the patients’ discharge from hospital, the family caregivers felt fully responsible for the patients’ care; A changed life – this was experienced as an unprepared situation that changed life by the time of the patients’ diagnosis. Family caregivers felt that they lost their identity and that nothing will ever be the same again; Psychological distress – this was experienced as a feeling of being alone. Now, the patient was the one that mattered and the family caregivers expressed a feeling of being invisible.

Study II: This qualitative study was conducted among family caregivers of patients surgically treated for oesophageal cancer in Sweden in 2018. Thirteen telephone interviews were held in 2020, two years after the patients’ surgery. An abductive approach was used for the analysis, starting with an inductive approach using thematic analysis, and thereafter, a deductive approach to interpret the findings in relation to the conceptual model “The Cancer Family Caregiving Experience”. The study found that the family caregivers suffered from many stress factors. The most prominent stress factors were distress regarding fear of tumour recurrence, worry about the future and the patients’ nutritional status. Family caregivers also experienced a transition from family member to caregiver. Many psychosocial aspects in this transition were highlighted during the disease trajectory.

Study III and IV: Study III and IV used data on HRQL (RAND-36 and QLQ-C30) from a Swedish nationwide and prospective cohort of patients surgically treated for oesophageal cancer and their closest family caregivers. Factors being investigated in study III were family caregivers’ characteristics (age, gender, education level) and patients related factors (tumour stage, complications, weight loss and comorbidities). In study IV, patients overall HRQL was used to find out whether it affected family caregivers’ HRQL. Linear regression models were used for measuring mean score differences (MSD) in study III and the regression coefficients (β) in study IV. In study III, 257 family caregivers were included. Family caregivers ≥65 years reported a lower physical function (MSD=-8.4; p=0.001) but a higher level of energy (MSD=9.2; p=0.002). Those with a higher education level had less pain (MSD=11.2; p=0.01) and better physical function (MSD=9.1; p=0.006). Regarding patient-related factors, postoperative complications were negatively associated with family caregivers’ physical function (MSD=- 6.0; p=0.01) and pain (MSD=-7.9; p=0.01). No associations were found for patients’ tumour stage and comorbidities. In study IV, 275 patients and paired family caregivers were included. Patients reported a mean HRQL summary score of 81.4, which indicates reductions in functions and burdensome symptoms. Lowest HRQL scores were reported among family caregivers for pain (69.2±26.0) and energy/fatigue (65.1±20.4). A 10-point change in the patients’ summary score corresponded to a 7-point change for family caregivers’ emotional role function (β=7.0; 95% CI: 3.6-10.3). No clinically relevant associations were found for patients’ HRQL and the other subscales of RAND-36.

In conclusion, these studies suggest that family caregivers of patients treated for oesophageal cancer may struggle with the psychosocial consequences of a changed situation in life which, in turn, has an impact on their psychological health and social context. Moreover, their HRQL is affected by the patient’s cancer diagnosis and its treatments. It is of great importance to further investigate aspects of HRQL among family caregivers in order to predict the risk of poor HRQL. In addition, improved supportive interventions are needed for family caregivers during the whole disease trajectory of the patient.