Background and Aims: Over the past three decades, complex care
and treatment has 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 that parents face when
managing treatment and care of their child with cancer to ensure
optimal parent support and prior to further expansion of home-based
parent caregiving. The aim of this study was to explore the experiences
of children and adolescents with cancer and their parents in managing different care tasks. It is the first study of the research project
’INTravenous AntiCancer Treatment for children and adolescents at
Home (INTACTatHome)’, that aims to develop and test an intervention
of home-based intravenous anti-cancer treatment.
Methods: An ethnographic fieldwork comprising participant observation and semi-structured interviewing was conducted from July 2020
to December 2020 at the hospital and in the homes of the families.
A purposeful maximum variation sampling strategy was applied, and
13 families participated in the fieldwork (13 children and adolescents
and 15 parents). Teen of these families were interviewed (five children
and adolescents and 16 parents). Data was analyzed using qualitative
thematic analysis.
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’.
Conclusions: This study contributes to a deeper understanding of the
varying experiences of parents in managing different care tasks for
a child or adolescent with cancer. It underscores the need to establish clear expectations for parents as caregivers throughout the cancer
treatment trajectory. This perspective is crucial when developing and
implementing future home-based care services.