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Re-Defining the Family Biography When a Child Suffers from a Life-Limiting Illness: Insights from Mothers and Siblings

Author

Listed:
  • Ana Patrícia Hilário

    (Centro Interdisciplinar de Ciências Sociais, Universidade de Évora (CICS.NOVA.UÉvora), Évora, Portugal)

  • Fábio Rafael Augusto

    (Instituto de Ciências Sociais, Universidade de Lisboa, Lisboa, Portugal)

Abstract

This study intends to move beyond the parent–child dichotomy to study the experience of chronic illness within the family setting by also focusing on young siblings. The study will mobilize the accounts of both mothers and siblings of children with a life-limiting illness to understand the biographical impact of a critical situation. Seven siblings and five mothers participated in the research. In-depth interviews and interviews using the ‘draw-write and tell’ technique were conducted. The biographical experiences presented in this article are shaped by several factors within the context of personal circumstances, namely of social relationships and interconnectedness. We propose the concept of ‘mother-sibling-biographical disruption’: both mothers and siblings of children with a life-limiting illness had to redefine themselves. The study intends to offer insights into the sociology of health and illness by extending current research on family experiences of having a child with a life-limiting illness, in particular of sibling relationships.

Suggested Citation

  • Ana Patrícia Hilário & Fábio Rafael Augusto, 2025. "Re-Defining the Family Biography When a Child Suffers from a Life-Limiting Illness: Insights from Mothers and Siblings," Sociological Research Online, , vol. 30(4), pages 942-959, December.
    • Handle: RePEc:sae:socres:v:30:y:2025:i:4:p:942-959
    DOI: 10.1177/13607804241301377
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    References listed on IDEAS

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    1. Rasmussen, Pernille Skovbo & Pedersen, Inge Kryger & Pagsberg, Anne Katrine, 2020. "Biographical disruption or cohesion?: How parents deal with their child's autism diagnosis," Social Science & Medicine, Elsevier, vol. 244(C).
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