Caregivers' perceptions of pediatric chronic complex diseases during hospitalization: Unpredictability, faith,...

Chronic childhood illness is an experience marked by ongoing challenges, the effects of which extend to the emotional sphere of caregivers. This study aimed to understand the meanings attributed by caregivers to their children's illness during pediatric hospitalization, based on listening to their experiences and subjective perceptions.

This was a qualitative, exploratory study conducted with 24 caregivers of children with complex chronic conditions admitted to the pediatric ward of a public university hospital. Data were obtained through semi-structured interviews and analyzed using Bardin's content analysis technique.

Five central categories emerged from the analysis of the narratives: (1) the unpredictability of the disease and powerlessness in the face of the unknown; (2) spirituality as a pillar of coping, highlighting the role of religiosity in coping; (3) the support network as an element of emotional support; (4) the child as a source of strength and meaning, highlighting the construction of an emotional bond and admiration for the children; and (5) the path to be followed in the construction of palliative care with these families. The discourses revealed feelings of fear, overload, and insecurity.

The results highlight the complexity of the caregiving experience in chronic contexts, with an emphasis on the emotional and spiritual dimensions of the suffering experienced.

The findings underscore the need to integrate emotional and spiritual support into routine care, acknowledging faith as a coping mechanism. Healthcare teams should establish clear and compassionate communication regarding palliative care from early stages.