地中海贫血患儿父母心理社会状况调查

Psychosocial Status of Parents of Thalassemic Children

目的 了解地中海贫血患儿父母心理社会健康状况。方法 采用晤谈方式 ,结合自编“地中海贫血患儿父母调查问卷表”和“临床症状自评量表 (SCL - 90 )”对 3组地中海贫血患儿父母 2 12例 ,其中轻型贫血组4 6对父母 ,92人 ;中间型贫血组 35对父母 ,70人 ;重型贫血组 2 5对父母 ,5 0人。进行调查 ,并将其SCL - 90的评定结果与健康儿童父母对照组比较。结果 132例 (6 2 .3% )缺乏本病基本知识 ,对贫血现象存在许多误解 ;189例(89.2 % )担心患病子女的生长发育受影响 ,甚至会过早夭折 ;176例 (83.0 % )对子女患病表示内疚、自责 ;12 6例(5 9.4 % )不愿公开病情 ,害怕受到社会歧视 ;重型贫血组 30例 (6 0 .0 % )父母工作深受影响 ,4 8例 (96 .0 % )缺乏足够经济支持 ,治疗信心不足。与对照组比较 ,SCL - 90总均分及焦虑和抑郁两因子分值在 3组中均明显升高 (P <0 .0 5 ) ;另外 ,在重型组除偏执和精神病症因子外 ,大部分因子分值升高 ,其中以总均分及躯体化、强迫症状、人际关系、敌对、恐怖等因子明显高于另外两组 (P <0 .0 5 )。

Objective To study the psychosocial status of the parents of children with thalassemia. Methods One hundred and six couples whose children had thalassemia (212 cases) were interviewed, including 46 couples of thalassemia minor children (Group 1), 35 couples of thalassemia intermedia children (Group 2), 25 couples of thalassemia major children (Group 3). The parents' psychosocial status was assessed by SCL 90 (a self evaluated table on the clinical psychological syndrome) and questionnaire specifically prepared for parents of children with thalassemia. Forty eight couples (96 cases) of healthy children were used as controls. Results Of the 212 parents, 132 ( 62.3% ) had little information about thalassemia and some even had a misconception about this disorder; 189 ( 89.2% ) had apprehension about their children's poor growth development, and even had misgivings of a short life span; 176 ( 83.0% ) had a guilty conscience about their children's condition; 126 ( 59.4% ) avoided talking about their children's illness with their friends and relatives for fear that their children would not be accepted socially. Of the 50 parents whose children had major thalassemia, 30 ( 60.0% ) considered that their children's illness affected their work adversely; 48 ( 96.0% ) lacked confidence in the treatment of thalassemia because of poor economic support. Compared with the controls, the general symptomatic index and subscale scores on depression and anxiety in SCL 90 were higher in the three experimental groups (P< 0.05 ). The general symptomatic index and the scores of most SCL 90 subscales including somatization, obsessive compulsive, interpersonal sensitivity, hostility and panic were higher in Group 3 than those in Group 1 and Group 2 (P< 0.05 ). Conclusions Parents of children with thalassemia are likely to be affected psychologically in various ways.