海洋性貧血責任帶因者心理社會衝擊之研究

Abstract

本研究旨在了解重度β型海洋性貧血父母的心理社會衝擊及其影響因素。本研究採橫斷式研究，透過國內分屬北、中及南部之台灣海洋性貧血協會、社團法人台灣關懷地中海貧血協會與社團法人高雄市關懷海洋性貧血協會取得會員名冊，以患孩父母（雙親家庭與單親家庭）為主要研究對象；問卷內容分成五大部分，包括海洋性貧血患孩父母之基本屬性與患孩的基本屬性、患孩的健康狀況、患孩的心理適應、患孩父母親的身心適應情形與家庭適應狀況。正式施測時間為94年10月6日至12月10日，以電話訪談的方式進行資料收集，共回收有效問卷48份。 獲得下列研究結果： 一、在雙親家庭中，患孩父母親初知孩子診斷時有無助、悲傷、害怕、與不能接受等情緒反應，但也有12.5%的父親表示他們並沒有太多的負面感受。在單親家庭中，雖然患孩父母亦有許多負面感受，但所有的單親家庭患孩父母皆表示不會放棄患孩。 二、在雙親家庭中，影響患孩父親身心適應情況的變項為「有無宗教信仰」、「患孩年齡」、「患孩個數」、「有無患有其他合併症」、「是否曾因合併症而住院」、「患孩的心理適應」等六項，其中「有無宗教信仰」與「患孩的心理適應」為影響患孩父親身心適應情況具預測力，可解釋的變異量為40.2%。 影響患孩母親身心適應情況的變項為「有無患有其他合併症」、「是否曾因合併症而住院」、「患孩的心理適應」等三項，其中「是否曾因合併症而住院」與「患孩的心理適應」為影響患孩母親身心適應具預測力，可解釋的變異量為51%。 三、在雙親家庭中，影響患孩父親家庭適應狀況的變項在本研究中並未發現，表示尚有許多重要的影響因子未被考慮到，有待未來的研究可進一步探討。影響患孩母親家庭適應狀況的變項為「家庭經濟狀況」、「診斷時間」、「患孩的心理適應」等三項，其中「患孩的心理適應」為影響母親家庭適應狀況具預測力，可解釋的變異量為26%。 四、在雙親家庭中，患孩父親及患孩母親在身心適應情形得分上，達統計顯著差異。在雙親家庭中，比較父母親的家庭適應狀況，則無顯著的差異。 根據本研究結果可使面對患孩及其父母的第一線護理人員，協助提供適當的諮詢服務與疾病照護的相關訊息，以幫助父母親的適應與親子關係的建立，更進一步提升護理人員之專業能力與護理品質。

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.