Invisible patients in rare diseases: parental experiences with the healthcare and social services fo...
Invisible patients in rare diseases: parental experiences with the healthcare and social services for children with rare diseases. A mixed method study
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Publisher
London: Nature Publishing Group UK
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Language
English
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Publisher
London: Nature Publishing Group UK
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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 q...
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Full title
Invisible patients in rare diseases: parental experiences with the healthcare and social services for children with rare diseases. A mixed method study
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TN_cdi_doaj_primary_oai_doaj_org_article_2f790290c61a4f2087035bb4365c6579
Permalink
https://devfeature-collection.sl.nsw.gov.au/record/TN_cdi_doaj_primary_oai_doaj_org_article_2f790290c61a4f2087035bb4365c6579
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ISSN
2045-2322
E-ISSN
2045-2322
DOI
10.1038/s41598-024-63962-4
