Purpose: Children with Complex Health Conditions (CCHC) require prolonged, specialized, and multidisciplinary care, often demanding prolonged hospitalizations. In this context, mothers generally assume the role of primary caregivers, facing emotional, physical and social overload. However, their experiences during hospitalization remain little explored. This study aimed to understand the experiences and needs of mothers caring for CCHC during hospitalization.
Design and methods: This qualitative study used an inductive approach based on the Straussian Grounded Theory principles. Data collection took place between September 2024 and March 2025, through individual, in-person, semi-structured interviews, conducted with mothers of CCHC admitted to a Brazilian university hospital. Data analysis followed the constant comparison method, occurring simultaneously with collection, enabling the construction of categories and conceptual refinement.
Results: Sixteen mothers aged between 23 and 46 years (34.75 ± 7.55) were recruited. Data analysis generated the core category "Care experiences: balancing between light and shadow" around which three categories are anchored: 1) Dealing with the complexity of the disease and hospitalization; 2) Barriers to care dynamics during hospitalization; and 3) Enablers of care for children with complex health conditions.
Conclusions: The analysis of maternal experiences highlights the urgent need for care practices based on family-centered care models that recognize mothers as protagonists in the care process.
Practice implications: Findings support the implementation of institutional protocols that ensure effective communication, continuous support and qualification of professionals to promote a welcoming, safe and humanized environment, reducing the emotional and structural vulnerabilities faced by mothers who care for CCHC.
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