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Parent participation in social healthcare for children with an intellectual and/or physical disability at the age of 0-18

Hanken, J. (2019) Parent participation in social healthcare for children with an intellectual and/or physical disability at the age of 0-18.

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Abstract:Background: The approach of the healthcare system in the Netherlands has changed over the years. The vision changed from “decisions are made by the healthcare professional” to “self-management of the patient”. The aim of this approach is that the patient contributes to achieve a higher quality, safety, and efficiency of healthcare. However, not all patients can take this responsibility on their own in which case it could be done by a legal representative. Aim: The aim of this paper is treble. First, to explore which elements of family-centered care are rated badly by parents of intellectual and/or physical disabled children at the age of 0 to 18 years old in social healthcare and whether the variation in these scores could be explained by patient characteristics. At last, to investigate which improvements parents of intellectual and/or physical disabled children at the age of 0 to 18 years old in social healthcare suggest for the bad scoring elements of family-centered care. Method: The approach of this study was a mixed method. For the quantitative part of the study a questionnaire was used and for the qualitative part two semi-structured focus group interviews were carried out. For the questionnaire and the interviews was the measure of processes of care (MPOC) used, which includes five subjects of parent participation. Results: Parents were the least satisfied with the subject of the MPOC ‘providing general information’ and were the most satisfied with the subject ‘respectful and supportive care’. Two patient characteristics influenced the scores given by parents: 1. the number of disciplines of care involved in the care process, 2. how often parents had contact by phone or email with the personal mentor. Some improvements parents had experienced are: they want to be better informed about dates of activities and/or meetings, requests of allowance, and specific information about therapy. Conclusion: There are already a lot of possibilities for parents to participate in the care process of their child in social healthcare. However, not all parents do know these possibilities because they have to ask for it by themselves. Parents all had their own preferences concerning their participation in the care process of their child. Therefore, by parents it is seen as an added value that the personal mentor asks for the preferences of each individual parent and mention the possibilities of the location concerning parent participation at the start of the care process. Further research is needed to prove if the current possibilities offered by the location to parents is the best.
Item Type:Essay (Master)
Clients:
Cosis, Meppel
Faculty:TNW: Science and Technology
Subject:70 social sciences in general
Programme:Health Sciences MSc (66851)
Keywords:Parent participation, Family-centered care, Patient-centered care, MPOC-20, Intellectual and/or physical disabled children, Social healthcare
Link to this item:http://purl.utwente.nl/essays/78650
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