The Study of Psychosocial Impact on Obligated Carrier of Child with Thalassemia
Date Issued
2006
Date
2006
Author(s)
Chen, Hung-Chin
DOI
zh-TW
Abstract
This research intended to study the psychosocial impact and influence on parents of β-thalassemia major. A cross-sectional survey was used with parents of β-thalassemia children as study subjects, through the member of Taiwan Thalassemia Association, Taiwan Caring Thalassemia Association and Kaohsiung Caring Thalassemia Association.
The questionnaire is composed of demographic data of β-thalassemia children and their parents, health status and psychological adaptation of children, physical and psychological adaptation of parents and family. The data was collected by telephone interview from Oct 6th to Dec 12th in 2005, and 48 valid questionnaires were collected.
The following findings were resulted:
1.In the parental family, most of fathers felt helpless and sad when first informed of their children’ diagnosis; whereas 12.5% expressed they did not have too much
negative feeling. It was evident that mothers had the emotions such as sorrow, scare, helplessness and hard to accept when they were informed. In the single-parent family, though parent had many the negative mood when first informed of their children’diagnosis, but they all expressed they would not give up the child.
2.In the parental family, 6 variables were found to influence father’adaptation to the disease, which were religious belief, age of children, number of sick children, complications, hospitalization for complications and children’adaptation. Among them, religious belief and children’adaptation were predictors of father’adaptation with a favorable variance of 40.2%. Three factors were found to influence mother’s adaptation: complications, hospitalization for complications and children’s adaptation, among which children’s adaptation and hospitalization for complications were shown to be the predictors with a favorable variance of 51%.
3.In the parental family, no variables were found to influence family adaptation of father, which indicated further research should be done to study on important influential factors failed to be considered here. Three variables were found to influence family adaptation of mothers, which were family financial status, time of diagnosis and psychological adaptation of children. Psychological adaptation of children was predicted to influence family adaptation of mother with a favorable variance of 26%.
4.In the parental family, remarkable difference can be found statistically about psychological and physical adaptation condition between father and mother. Comparison of parents’family adaptation, no evident differences could be found in family adaptation between father and mother.
The findings of this research can be useful for front line nursing staff to provide appropriate consultation and nursing information to Thalassemia children and their parents, in order to help the parents’ adaptation and establish better parentage, further to ensure the professional skills and quality of nursing.
Subjects
海洋性貧血
責任帶因者
體染色體隱性遺傳疾病
Thalassemia
psychosocial impact
obligated carrier
recessive genetic disorder
Type
other
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