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Organization of pediatric palliative care in oncology: preferences and experiences of bereaved parents

Straathof, L.A. (2014) Organization of pediatric palliative care in oncology: preferences and experiences of bereaved parents.

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Abstract:Relevant standards of the organization of pediatric palliative care (PPC) in the Netherlands are the “Dutch guideline palliative care for children” and “IMPaCCT”. Our objective was to determine which organizational aspects of Dutch PPC need attention according to bereaved parents. To this end we investigated how much parents value the elements of palliative care as well as the accessibility of these elements. A questionnaire was developed to assess the importance of the organizational elements of PPC and the way in which care was actually organized. Parents assessed the entire palliative care of their child with a score of 7.2 out of ten (SD, 2.1). In twenty of 37 aspects, more than 25% of the parents noted that they had no access to that aspect while they valued it as important. For five of these aspects, more than 50% of the parents noted that they had no access to that aspect while they valued it as important. Parents highly value all organizational aspects of PPC as described in the Dutch and European standards. Families had not received all aspects of PPC even though parents recognized them as important. Parent’s need for information is the most striking topic that needs further attention.
Item Type:Essay (Master)
Clients:
VOKK, Nieuwegein, The Netherlands
Faculty:BMS: Behavioural, Management and Social Sciences
Subject:44 medicine, 85 business administration, organizational science
Programme:Health Sciences MSc (66851)
Link to this item:http://purl.utwente.nl/essays/64716
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