Parental experiences of the liminal period of a child’s fatal illness

• Published in: Health (London, England : 1997) England : 1997), 2023-07, Vol.27 (4), p.439-457
• Main Authors: Janusz, Bernadetta, Walkiewicz, Maciej
• Format: Article
• Language: English
• Subjects: Adaptation, Psychological; Ambiguity; Bereavement; Child; Child mortality; Children; Death & dying; Grounded Theory; Humans; Illnesses; Liminality; Narration; Narratives; Parents & parenting; Parents - psychology; Physician-Patient Relations; Professional-Family Relations
• ISSN: 1363-4593; 1461-7196
• DOI: 10.1177/13634593211046850

The article offers a description of parents’ experiences of their child’s ultimately fatal illness as it unfolds over the successive stages of medical treatment, in the context of the liminality theory. The parents (N = 23) were interviewed 1–4 years after their child’s death. The research method involved conducting narrative interviews with parents in order to obtain a spontaneous narration of the child’s illness as it unfolded. The grounded theory approach, including the narrative and performative aspects of such parental utterances, was applied as the main research strategy. The results provide insight into the main areas and processes of common parental experiences, such as the pervasive sense of becoming trapped in timelessness and ambiguity. Further states reported by parents included oscillating between a distancing stance and involvement, and a dualistic relationship with medical staff and the medical system: between alignment and disharmony. The study indicates the importance of treating delivery of such a diagnosis as a process rather than as a one-time event. The sense of ambiguity is treated as a kind of necessary parental coping mechanism, whilst the sense of timelessness gives parents a unique sense of time in which they do not have to think about the child’s potentially imminent death.