“We got cancer”- A mixed methods study of quality of life and psychological distress in head and neck cancer patients and their families

Abstract

Background: A diagnosis of cancer and its subsequent treatment can have a profound impact on the quality of a person’s life, as well as on the lives of their partners and family members. While the role of families as a source of support is generally recognised, very little is known about the effect that a partners’ or family members’ distress levels may have on Head and Neck Cancer (HNC) patients’ quality of life (QoL). Aims: The aims of this thesis were; 1) to measure the levels of psychological distress of HNC patients and their partners and other family members; 2) explore the relationship between partner/family member psychological distress and patient QOL 3) to gain deeper understanding of the lived experiences of HNC couples, with specific focus on patients who had a partner with psychological distress before treatment. Method: This mixed methods longitudinal study recruited 90 newly diagnosed HNC patients and 74 caregivers (partners n=50, family members n=24) which were followed over a period of 6-12 months. They completed the hospital and anxiety scale (HADS) and the WHO Quality of Life-BREF (WHOQOL-BREF) questionnaires before treatment and at 6 months following diagnosis. The qualitative phase of the study was completed 12 months following diagnosis, where a subsample of three HNC couples were purposively selected and interviewed about their experiences of HNC. Results: There were three key findings within the present study. Firstly, psychological distress in caregivers, particularly partners was higher than in HNC patients. Secondly, HNC patients who had a caregiver with psychological distress showed lower QoL and finally, the qualitative study showed the negative impact of HNC on the patient-partner relationship. Conclusions: What this study has shown is the importance of the caregiver’s role in HNC, and how their psychological functioning has an effect on the patient’s functioning. If partners or family members are to become active agents of help for the patient, it is proposed they should first be prepared psychologically for the task.