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… unmet needs while caring for a child with a disease. While the supportive care needs of parents in the field of oncology have been researched, the field of rare diseases lacks scientific knowledge about the supportive care needs of parents. The aim of this thesis is firstly, to research the lack of supportive care needs of parents caring for a child with a rare disease and secondly, to examine the strategies towards supportive care needs, proposed in the rare disease national action plans drafted by … characteristics by Authors, Sample, Method, Findings/Conclusions, and Domains of P-SCNF (continued) Authors Sample Method Findings/Conclusions Domains of P-SCNF Pelentsov, Fielder, Laws & Esterman, 2016 301 parents with a child with a rare disease An online survey consisting of 45 questions about the perceived level of satisfaction with receiving care, experiences and needs of providing daily care, the impacts of disease on relationships, the emotional and psychological burdens of disease, and … child assuming the child would not understand it is about him. Parents often know better how to explain delicate information to their child and, according to Muskat, parents should always be given the choice and the opportunity to be the person that explains treatments, symptoms, or other sensitive information to their child. Pelentsov, Fielder, Laws et al. (2016) reported that friends and family of parents caring for a child with a rare disease had difficulties to relate to the problems the …