The experiences of caregivers of individuals with head and neck cancer: a qualitative study

Abstract

Study background

Head and neck cancer (HNC) is a devastating disease. Approximately 20 million people were diagnosed with cancer worldwide in 2022, which is expected to become 35 million by 2050. HNC treatments are often complex, and their associated side effects can result in substantial functional challenges and visible changes for patients. Depending on individual circumstances, recovery from the treatment side effects can last weeks to months or even longer. These patients require considerable care, and caregiving tasks can be challenging for the caregivers. To date, little is known about the experiences of the informal caregivers of individuals with HNC around the world, including Australia, to identify their support needs.

Methods

This study was guided by qualitative interpretive inquiry. The research setting was a metropolitan tertiary hospital in New South Wales (NSW), Australia. Fifteen participants were recruited for this study from 2020 to 2022. Semi-structured individual interviews were conducted via telephone with 15 caregivers. The interviews were analysed using a thematic analysis.

Findings

Becoming a caregiver for someone with HNC was a life-changing responsibility, and this transition was emotionally and psychosocially challenging, making caregiving one of the most difficult roles participants had ever assumed. The participants experienced changes in their daily lives as they adjusted to new roles and responsibilities. Those changes included psychosocial impacts, relationship changes and disruptions to their daily routines. The participants acted as coaches in providing care for HNC patients. The caregiving role involved providing emotional, social and financial support; facilitating communication between patients and others; and monitoring patients’ symptoms and overall well-being. Many participants in this study gained a sense of purpose in managing familiar and unfamiliar care needs when caring for the person with HNC.