Exploring family health, Support, Self-efficacy and Quality of Life during the cancer trajectory: A protocol for a longitudinal mixed methods multi-center cohort study

Abstract

Introduction A cancer diagnosis not only profoundly impacts individuals but also the very core of their families, reshaping their lives in many ways. However, there is a lack of focus on the well-being and health of the entire family across adult cancer research. This is concerning given that one-third of the Danish population will get a cancer diagnosis before the age of 75, suggesting that many Danes will become caregivers during their lifetime. In addition, identifying vulnerable families is challenging and the determinant factors for their vulnerability are unknown. Aims The principal aim of this study is to investigate family health during cancer treatment. This will be done by gathering information on various parameters such as perceived support, quality of life, and self-efficacy in patients with cancer and families across the cancer trajectory. Additionally, the study seeks to pinpoint particularly vulnerable families and investigate contributing factors to their vulnerability. Methods This mixed-methods study follows a sequential explanatory design, combining patient-reported outcomes in a longitudinal, prospective multicenter survey with interviews conducted with a nested sampling of the participants from the survey. A total of 240 patients diagnosed with prostate-, breast-, gastrointestinal-, and lymphoma cancer, and designated adult family caregivers will be recruited from six different sites for the survey. Variables such as family health, needs and perceived support, quality of life, self-efficacy, depression, stress, and resilience will be explored. Survey data will be collected at baseline, 3, 6, 12, and 18 months. The interviews (n = 12-15) will be conducted twice with patients and caregivers jointly; once during the treatment phase (3 months) and once after completion of treatment (12 months). Discussion This study will provide new insights into the unique needs and challenges of families navigating the complexities of cancer. Tracking their experiences longitudinally will deepen our understanding of the families' health and investigate determinant factors for vulnerability during the cancer journey. These insights can inform the development of targeted interventions and support services, ultimately improving the quality of care to vulnerable families facing cancer-related challenges. Trial Registration: ClinicalTrials.gov: NCT06433349 Protocol version 2.0