The Stress of Families With the Rare Disorder
Child
The main goal of this
research is:
1. To understand the situation among a child with rare
disorder, his family and the support system .
2. To discuss the pressure situation of the rare
disease family.
3. To discuss the relationship of the pressure between
the family's individual , family and supporting system
of the rare disorder sick child.
The mainly construction of my research is base on the family system theory to go on, with three
respects of
the rare disorder child’s situation, family and support
system to establish construction of this research and t
o discuss it in this three respects.
This research is the quantification research and adopt
personal tool of?uThe family pressure of the rare
disease sick child?Invinvestigation paper to collect
information, and until now got 131 of 256 the issue samples of Prader-Willi Syndrome Association, Tuberous Sclerosis
Complex Association and Williams syndrome Association and then after
arrangement with data analysis in computer of SPSS12.0 for Windows.
The findings are :
1.
The
influence of child's situation and family factors on the Stress of families
with the rare disorder child is limited.Only
diagnosis diseases,exact eat
medicine ,professional, caregiver's age,the attitude
of the diseases.
2.
The
conditions of the families's Stress are the main
effects on the rare disease family are support system's spouse, parents and grandparents,sisters , labor ,
doctor and nursing members.