Systematic review on family functioning in families of children with rare diseases

Abstract: The present study is a systematic review of the research on family functioning in families who have a child with a rare disease. The research was carried out using the databases Pubmed, EBSCO, and Google Scholar, following PRISMA guidelines. After applying the inclusion and exclusion criteria to the 460 articles initially found, a total of 49 articles made up the final sample. The following topics regarding family functioning were identified: impact of diagnosis; caregiver’s role and responsibilities; family functioning; impact on the emotional sphere; effects on marital and social life; coping strategies; family, and care and health system. The results of this study may provide justification for considering factors associated with family functioning when diagnosing a rare disease and deciding on treatment.

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Bibliographic Details
Main Authors: Assalone, Florencia, Ortega, Javiera, Vázquez, Natalia, Vázquez, Victoria
Other Authors: 0000-0003-0056-9806
Format: Artículo biblioteca
Language:eng
Published: Consejo General de la Psicología de España 2024
Subjects:FAMILIA, ENFERMEDADES POCO FRECUENTES, CUIDADORES, IMPACTO PSICOLÓGICO,
Online Access:https://repositorio.uca.edu.ar/handle/123456789/17793
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