b-eph_thesis_-_julius_kesler_1.pdf
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… 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 … parents could pay for medications. 24 As mentioned above, transportation is also a practical need that parents need help with. Not only to receive a diagnosis, but also to bring your child to school, leisure activities, or hospitals for treatment or check-ups, transportation is sometimes required. The Netherlands have different centres of expertise for rare diseases across the country. While this ensures that parents and patients have the best care centred in one place, instead of different centres with mediocre knowledge, this can result in a centre of expertise in the north of the Netherlands, while living in the south. Resulting in a 3-hour drive for every check-up. In the study of van Scheppingen et al. (2008) parents mentioned that the organisational aspects of care were exhausting and time- consuming. Parents have stated in the study of Monterosso and Kristjanson (2008) that they felt relieved when …