Systematic Review on Family Functioning in Families of Children With Rare Diseases

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...

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Published inPapeles del psicólogo Vol. 45; no. 1; pp. 39 - 47
Main Authors Ortega, Javiera, Vázquez, Natalia, Assalone, Florencia, Vázquez, Victoria
Format Journal Article
LanguageEnglish
Published Spanish Psychological Association (Colegio Oficial de Psicólogos) 01.01.2024
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Summary: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.
ISSN:0214-7823
0214-7823
DOI:10.23923/pap.psicol.3031