The psychosocial experiences of head and neck cancer caregivers following (chemo)radiotherapy: A systematic qualitative review and narrative synthesis

Abstract

ObjectiveOropharyngeal cancer, a type of head and neck cancer (HNC), the incidence of which is increasing, often affects younger patients than traditional HNC, having distinct psychosocial consequences. Treatment side effects mean many rely on informal caregivers following (chemo)radiotherapy. The purpose of this review was to describe current understanding of the psychosocial experiences of these caregivers in the post‐treatment phase.MethodsA systematic search for relevant studies between January 2010 and October 2022 in three electronic databases (CINAHL, MEDLINE and PsycINFO) was followed by citation searching. Inclusion criteria were developed to ensure studies explored caregivers' experiences during the post‐treatment phase following oropharyngeal cancer (chemo)radiotherapy. Thematic analysis informed by the ‘Cancer Family Caregiving Experience Model’, identified stressors, appraisals and responses. Themes evolved through the synthesis of recurrent concepts across the studies and a narrative of psychosocial experiences and their impact upon caregiver well‐being was developed.ResultsFifteen HNC papers which included exploration of the psychosocial experiences of oropharyngeal cancer caregivers following (chemo)radiotherapy were selected. Findings were synthesised to develop five themes: an emotional struggle, supporting nutrition, altered lifestyles, changes within relationships and support needs.ConclusionsThe completion of (chemo)radiotherapy signalled a transition for these caregivers as they undertook burdensome responsibilities. Experiences indicated that preparation for the role, assessment of needs, and targeted support is required. Additionally, caregivers' recognition by healthcare professionals as caring partners could help moderate this demanding experience.