Peer-reviewed article

The Child's Voice in Paediatric Oncology: An Interpretative Phenomenological Analysis of the Child's Lived Experience of Parenting in Hospital-At-Home.

Kirakosyan V, Miler C, Mallard A, Péré B, Chrétien I et al. · 1 Jun 2026

Abstract

Background Hospital-at-home (HaH) is becoming more widely available to children with cancer, providing care in a familiar environment while upholding medical safety and quality. Little is known, however, about how these children experience their parents' caregiving in the context of HaH, how they perceive and interpret parental roles, what they require in daily care, and how they communicate these needs. Methods Seven children aged 7 to 12 years undergoing home-based cancer treatment were interviewed using interpretative phenomenological analysis (IPA). These interviews, conducted via telephone, were open-ended and exploratory, allowing the children to express their experiences freely. Results One major theme-'the child's voice'-emerged, encompassing two interrelated sub-themes: (1) parental presence as a condition of care; and (2) the strategies children use to express their voice. Parental presence was described as essential for emotional security, predictability and meaning, serving as both a psychological anchor and a temporal organiser in the child's daily life. The children expressed their voice through multiple forms-verbal, gestural, symptom-focused or silent-revealing their active participation in care and their capacity to preserve relational and emotional continuity within the family setting. Conclusions Children with cancer perceive HaH as more than a transfer of hospital treatment; they experience it as a shared relational experience built on parental presence and mutual understanding. Recognising and supporting the child's voice in its various forms is vital for ensuring that HaH becomes not only a site for medical care but also a meaningful space for living. Relevance to clinical practice Our findings highlight the need for healthcare teams to take into account the variety of children's voices and grant them a real place in HaH. They are not simply recipients of care, but also active participants in the care relationship, capable of expressing their needs, emotions, and expectations in their own way. Patient or public contribution No patient or public contribution.