Ambiguous Expectations of Parent Caregiving for the Child and Adolescent With Cancer at the Hospital and at Home—An Ethnographic Study

Abstract

Background: Over the past three decades, complex care and treatment have increasingly become the responsibility of parents as home-based care providers, yet little is known about parents’ caregiving experiences when considering the variety of care tasks. It is imperative to gain insight into the challenges parents face when managing treatment and care of their child with cancer to ensure optimal parental support and prior to further expansion of home-based parent caregiving. This study aimed to explore the experiences of children and adolescents with cancer, who had received treatment through a portable infusion pump, and their parents in managing different care tasks. It is the first study and forms the basis of the research project INTACTatHome, that develops and tests interventions of home-based intravenous anti-cancer treatment. Methods: Ethnographic fieldwork comprising participant observation and semi-structured interviewing analyzed using qualitative thematic analysis. Thirteen families participated in the study. Results: Three main themes were identified: (1) being a “mini-nurse”; (2) dividing care; and (3) managing anxiety and fear, each based on separate sub-themes. These themes were bound together by an overarching theme: “Ambiguous expectations of parent caregiving.” Discussion: This study contributes to a deeper understanding of the varying experiences of children and adolescents and their parents in managing different care tasks for a child or adolescent with cancer. It underscores the need to establish clear expectations of parents as caregivers throughout the cancer treatment trajectory. This perspective is crucial when developing and implementing future home-based care services.