Invisible patients in rare diseases: parental experiences with the healthcare and social services for children with rare diseases. A mixed method study
Jan Domaradzki,
Dariusz Walkowiak
Abstract:This study explores the experiences of Polish caregivers of children with rare disease (CRD) with health care and social services for CRD. A mixed-methods approach was employed, using an open-ended questionnaire with a convenience sample. Quantitative data presented through descriptive statistics, were complemented by thematic analysis applied to qualitative responses. Responses from 925 caregivers of 1002 children with CRD revealed that the duration of the diagnostic journey varied, spanning from 0 to 18 year… Show more
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