Assessing the Comprehensive Training Needs of Informal Caregivers of Cancer Patients: A Qualitative Study

Abstract

Introduction: The increasing demand for cancer services is projected to overwhelm the cancer care system, leading to a potential shortfall in human resource capacity. Informal caregivers (unpaid family/friend caregivers of cancer patients) provide a significant amount of care to patients and the cancer care system could not cope without them. The aim of this study was to analyze the needs of informal caregivers (CGs) through interviews with cancer patients and CGs, and to assess the content and utility of a comprehensive caregiver training course. Methods: Cancer patients and CGs were recruited from an academic cancer centre to elicit their thoughts and perceptions of cancer CG education needs through a qualitative, phenomenological design using semi-structured interviews and a curriculum review activity. Results: Six patients and seven CGs were interviewed. Patients averaged 53.8 years of age and CGs averaged 53.1 years. Caregiver participants reported that they were unprepared for their caregiving role. Depending on the severity of the disease, CGs reported significant emotional strain. Most participants wanted more practical information, and all expressed the desire for greater social support for CGs. While there were differences in terms of desired modality (e.g., online, in-person), support for greater CG education was strong. Discussion: CGs experience a significant learning curve and receive little to no direct training or education to help them acquire the knowledge and skills they need to support a cancer patient. This is especially challenging for new CGs, for whom emotional and informational needs are particularly acute. Participants shared a great deal of endorsement for a comprehensive training course for new CGs. Given the multiple demands on their time, some participants suggested that consideration be made to establish synchronous classes. Participants held that having the course take place (online or in-person) at a specific time, on a specific date could help CGs prioritize their learning. Participants also endorsed the idea of “required” learning because even though CGs may recognize that a course could be beneficial, some may lack the motivation to participate unless it was “prescribed” to them by a healthcare provider.

Keywords

• cancer
• caregivers
• education
• experience
• relationships