Who is supporting the parents during their child's cancer treatment? A qualitative study through the lens of compassion

Camilla Littau Nielsen; Jane Clemensen; Michael Thude Callesen; Claus Sixtus Jensen; Anthony C Smith; Kristina Garne Holm

doi:10.1016/j.ejon.2024.102534

Who is supporting the parents during their child's cancer treatment? A qualitative study through the lens of compassion

Eur J Oncol Nurs. 2024 Feb 24:70:102534. doi: 10.1016/j.ejon.2024.102534. Online ahead of print.

Authors

Camilla Littau Nielsen¹, Jane Clemensen², Michael Thude Callesen³, Claus Sixtus Jensen⁴, Anthony C Smith⁵, Kristina Garne Holm⁶

Affiliations

¹ Hans Christian Andersen Children's Hospital, Odense University Hospital, Denmark; Department of Clinical Research, Faculty of Health Sciences, University of Southern Denmark, Denmark; Centre for Compassion in Healthcare, Department of Clinical Research, Department of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Denmark. Electronic address: Camilla.Littau.Nielsen@rsyd.dk.
² Hans Christian Andersen Children's Hospital, Odense University Hospital, Denmark; Department of Clinical Research, Faculty of Health Sciences, University of Southern Denmark, Denmark; Centre for Compassion in Healthcare, Department of Clinical Research, Department of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Denmark; Centre for Innovative Medical Technology, Odense University Hospital, University of Southern Denmark, Denmark; Centre for Online Health, The University of Queensland, Australia; Centre for Health Services Research, The University of Queensland, Australia.
³ Hans Christian Andersen Children's Hospital, Odense University Hospital, Denmark.
⁴ Research Centre for Emergency Medicine, Aarhus University Hospital, Denmark; Department of Clinical Medicine, Aarhus University, Denmark; Department of Paediatrics and Adolescent Medicine, Unit for Research and Development in Nursing for Children and Young People, Aarhus University Hospital, Denmark.
⁵ Centre for Innovative Medical Technology, Odense University Hospital, University of Southern Denmark, Denmark; Centre for Online Health, The University of Queensland, Australia; Centre for Health Services Research, The University of Queensland, Australia.
⁶ Hans Christian Andersen Children's Hospital, Odense University Hospital, Denmark; Department of Clinical Research, Faculty of Health Sciences, University of Southern Denmark, Denmark.

PMID: 38490044
DOI: 10.1016/j.ejon.2024.102534

Abstract

Purpose: Parents of children/adolescents with cancer are placed in a state of severe suffering due to serious concerns, fears, and radical daily life changes. Human support is an important source of support for successful coping. This study explored fundamental aspects of parents' daily, social, and personal life during their child's treatment to deepen our understanding of 'who' plays a significant role in supporting parents, and how, and to what extent this support is provided.

Methods: This qualitative study was undertaken in a compassion paradigm, designed and guided by Heidegger's and Gadamer's philosophy and compassionate methods. Data were generated through ethnographic observations (144 h), focus group interviews (n = 2), and individual/couple interviews (n = 16) at two Danish hospitals. Inductive content analysis was used to analyse data.

Results: Overall, support from peers, health professionals, and social networks constituted significant sources of support. Especially peers and health professionals had a continuous support role, which was fundamental for establishing interpersonal closeness and relieving suffering. Sharing responsibilities between parents and among social networks seemed to ease the emotional and practical burden. However, to ensure effectiveness, social networks must be available, outreach, and responsive to needs. Moreover, parents disclosed little self-awareness and resources and options for self-care due to a combination of lack of awareness, time, and space in the hospitals.

Conclusion: Safeguarding interpersonal and interparental understanding and closeness in parental care is essential. One way is building resilience and a broader human-to-human-based safety net around the family, including social networks and professional psychosocial support, advantageously using compassion.

Keywords: Childhood cancer; Compassion; Family care; Oncology care; Paediatric oncology; Parental care; Psychosocial care; Qualitative research.