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Professional activity, gender and disease-related emotions: The impact on parents' experiences in caring for children with phenylketonuria
INTRODUCTION: Clinical management of rare diseases often fails to acknowledge the challenges faced by caregivers. Whilst management of phenylketonuria (PKU) may not be considered as dire as other conditions, most studies primarily concentrate on clinical issues, dietary adherence, or the quality of...
Autores principales: | , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Elsevier
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10368909/ https://www.ncbi.nlm.nih.gov/pubmed/37502286 http://dx.doi.org/10.1016/j.ymgmr.2023.100992 |