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.