Meaning-making amid existential uncertainty: A hermeneutic phenomenological study of parents of children with trisomy 18

<title>Abstract</title> <p>Advances in medical care have transformed the management of trisomy 18 while posing increasingly complex ethical and psychosocial challenges for parents. This study aimed to explore and interpret the lived experiences of parents of children with trisomy 18. Semi-structured interviews were conducted with 25 parents of children with trisomy 18. Data were analyzed using a hermeneutic phenomenological approach based on van Manen’s “Phenomenology of Practice.” Three themes emerged: (1) Existential uncertainty about the child’s future, (2) Ambivalence between social isolation and recognition of the child, and (3) Living a meaningful life through the child’s enduring presence. Although parents experienced profound existential distress, interactions with their children enabled them to reexamine the values that mattered most and reconstruct their identities. These findings suggest that parents’ experiences cannot be understood solely in terms of suffering. Meaningful parent–child interactions fostered ongoing meaning-making that was not constrained by the child’s lifespan and continued beyond the child’s death, providing new insights for family-centered care.</p>