Children with a rare congenital genetic disorder: a systematic review of parent experiences

Charlotte von der Lippe, Ingrid Neteland & Kristin Billaud Feragen
Abstract Background Caring for a child with a chronic disease may be demanding and stressful. When a child has a rare condition, the impact of care on parents is amplified due to the rarity of the diagnosis. In order to address the lack of generalized and synthesized knowledge regarding parents’ experiences of having a child with a rare genetic disorder, and give a holistic picture of these experiences, a systematic review of the available qualitative...
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