Résumé :
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Disability and Health Journal has published a study identifying the supportive care needs of parents with a child with rare diseases, irrespective of condition. The authors conducted a scoping study of 29 studies, examining the research literature related to the supportive care needs of parents. They then used the Supportive Care Needs Framework (SCNF) as the structure and, and compared the literature identified needs with the seven domains outlined in the SCNF. Most commonly cited needs in these studies were social needs, followed by informational needs and emotional needs, with the most common parental needs overall being information about their child’s disease, emotional stress, guilt and uncertainty about their child’s future health care needs, parents own caring responsibilities and the need for more general support. The authors also found that using the SCNF for parents of a child with a rare disease is challenging as some needs fitted well, while other do not. The authors conclude that there is an urgent to develop of a revised parental SNCF, specifically addressing the supportive care needs of parents of children with rare diseases, irrespective of the condition. (Résumé Orphanews 21/04/2015)
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