TY - ABST

T1 - AMBIGUOUS EXPECTATIONS OF PARENT CAREGIVING FOR THE CHILD AND ADOLESCENT WITH CANCER AT HOSPITAL AND AT HOME - AN ETHNOGRAPHIC STUDY

AU - Roug, Louise

AU - Wahlberg, Ayo

AU - Jarden, Mary

AU - Hjalgrim, Lisa

AU - Hansson, Helena

PY - 2022/11

Y1 - 2022/11

N2 - Background and Aims: Over the past three decades, complex careand treatment has increasingly become the responsibility of parentsas home-based care providers; yet little is known about parents’ caregiving experiences when considering the variety of care tasks. It isimperative to gain insight into the challenges that parents face whenmanaging treatment and care of their child with cancer to ensureoptimal parent support and prior to further expansion of home-basedparent caregiving. The aim of this study was to explore the experiencesof 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 atHome (INTACTatHome)’, that aims to develop and test an interventionof home-based intravenous anti-cancer treatment.Methods: An ethnographic fieldwork comprising participant observation and semi-structured interviewing was conducted from July 2020to December 2020 at the hospital and in the homes of the families.A purposeful maximum variation sampling strategy was applied, and13 families participated in the fieldwork (13 children and adolescentsand 15 parents). Teen of these families were interviewed (five childrenand adolescents and 16 parents). Data was analyzed using qualitativethematic 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 overarchingtheme: ‘Ambiguous expectations of parent caregiving’.Conclusions: This study contributes to a deeper understanding of thevarying experiences of parents in managing different care tasks fora child or adolescent with cancer. It underscores the need to establish clear expectations for parents as caregivers throughout the cancertreatment trajectory. This perspective is crucial when developing andimplementing future home-based care services.

AB - Background and Aims: Over the past three decades, complex careand treatment has increasingly become the responsibility of parentsas home-based care providers; yet little is known about parents’ caregiving experiences when considering the variety of care tasks. It isimperative to gain insight into the challenges that parents face whenmanaging treatment and care of their child with cancer to ensureoptimal parent support and prior to further expansion of home-basedparent caregiving. The aim of this study was to explore the experiencesof 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 atHome (INTACTatHome)’, that aims to develop and test an interventionof home-based intravenous anti-cancer treatment.Methods: An ethnographic fieldwork comprising participant observation and semi-structured interviewing was conducted from July 2020to December 2020 at the hospital and in the homes of the families.A purposeful maximum variation sampling strategy was applied, and13 families participated in the fieldwork (13 children and adolescentsand 15 parents). Teen of these families were interviewed (five childrenand adolescents and 16 parents). Data was analyzed using qualitativethematic 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 overarchingtheme: ‘Ambiguous expectations of parent caregiving’.Conclusions: This study contributes to a deeper understanding of thevarying experiences of parents in managing different care tasks fora child or adolescent with cancer. It underscores the need to establish clear expectations for parents as caregivers throughout the cancertreatment trajectory. This perspective is crucial when developing andimplementing future home-based care services.

U2 - 10.1002/pbc.30032

DO - 10.1002/pbc.30032

M3 - Conference abstract in journal

VL - 69

SP - S560-S561

JO - Medical and Pediatric Oncology. Supplement

JF - Medical and Pediatric Oncology. Supplement

SN - 0740-8226

IS - S5

ER -