Abstract

SANTOS, Jorge Henrique Correa dos; SOLA, Pamela Perina Braz; SANTOS, Manoel Antônio dos  and  OLIVEIRA-CARDOSO, Érika Arantes de. The lived experience of the caregiver of a child/adolescent facing a life-limiting illness. Vínculo [online]. 2022, vol.19, n.1, pp. 48-62. ISSN 1806-2490.  http://dx.doi.org/issn.19982-1492v19n1a6.

This qualitative study aimed to understand the lived experience of the caregiver of a child/adolescent facing a life-limiting illness. To this end, six parents of children and adolescents who were hospitalized, with varied diagnoses, mostly due to onco-hematological diseases, were interviewed. The data were collected through semi-structured interviews applied individually. The analysis showed that, upon receiving the diagnosis of a child's serious disease, there were predominant reactions of surprise, sadness, despair, and initial reluctance to accept the diagnosis. Feelings of fear, discomfort, and experiences of guilt permeated the parents' trajectory in their child's illness. Children and adolescents with life-limiting diagnoses require intensive treatment and high technological complexity. Hospitalization appears as an especially difficult time for parents, generating chronic fatigue, physical and emotional exhaustion. In the perception of parents, communication with professionals was satisfactory, being seen as a positive factor that contributes to ease the difficulties of facing critical situations. The father’s experience facing life limiting illness was considered a life changing factor. These results show the need for psychological support interventions to help parents and other family members to face the challenges encountered.

Keywords : Fathers; caregivers; child hospitalized; father child relations; physical illness (atitudes toward).

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