Abstract
Objective:to analyze narratives about the experience of hope of families in the context of pediatric chronic illness.Method:a narrative research using Family Systems Nursing as a conceptual framework. Three families of children and adolescents diagnosed with complex chronic illness participated in this study, totaling 10 participants. Data collection was developed using family photo-elicitation interviews. Family narratives were constructed and analyzed according to inductive thematic analysis with theoretical data triangulation.Results:the analytical theme - Waves of Family Hope in the Context of Pediatric Chronic Illness - is composed of four different types of hope: uncertain hope, caring hope, latent hope, and expectant hope. Movement through these hopes generates a driving energy and depends on a number of factors: support, information, searching for normality, and thoughts and comparisons.Conclusion:the results highlight the interaction and reciprocities of the members of the family unit, and the dynamics of hope, and illustrate the different types of hope and the factors that influence them. This study highlights the experience of hope as a family resource rather than just an individual resource, and supports health professionals in the planning of family care considering hope as an essential and dynamic family resource.
Highlights
In pediatrics, complex chronic health conditions include chronic illnesses and infectious diseases[1]
A: Adolescent A, a 15-yearold girl diagnosed with systemic lupus erythematosus which triggered chronic renal failure. She considered as family members her healthy 8-year-old brother, her mother, her father, and her maternal grandfather
The results showed the dynamics of family hope through the experience of different types of hope during the process of chronicity
Summary
Complex chronic health conditions include chronic illnesses and infectious diseases[1]. They are characterized by long duration and continuous care. There is no cure and children and adolescents need continuous health monitoring and support[1]. The diagnosis of a pediatric chronic illness impacts all family members, which alters family relationships and dynamics[2,3]. Families recognize that the disease requires changes in routine and responsibilities[6]. In this context, the family needs to adapt, and hope is one of the resources used in times of crisis[4,7,8]
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