先天性心臟病童家庭之心理適應初探研究

Abstract

研究背景與目的： 先天性心臟病為兒童常見的先天性疾病之一，其種類繁多。近年來因全民健保的幫助、醫學的進步…等緣故，病童生命得以延長，病童的年齡現以青少年及青年層級居多，父母們擔憂其成長過程中的心理狀態及所需適應社會環境調節的部分也因此與以往有所不同。本研究希望以時間縱向來瞭解先天性心臟病童家庭的心理適應。 研究目的為（1）探討父母陪伴心臟病童個案過程之心理適應及調適歷程、（2）瞭解父母教養心臟病童個案的因應策略、(3)進行父母兩者之間的心理適應過程之差異比較、(4)瞭解先天性心臟病童成長歷程的心理調適狀況。 研究方法： 採實地參與觀察及深度訪談的方式進行資料收集。以滾雪球方式立意選樣挑選樣本，自2013年10月至2017年6月，共訪談先天性心臟病童家長九名，六名女性、三名男性。受訪的先天性心臟病童共計三名，一男二女，年齡分別為15、19及26歲。教育程度則分別為：國中、高中及大學。最後由研究者閱讀訪談錄音的逐字稿，再加以分析重要研究主題。 研究結果： (1)先天性心臟病童家長的悲苦來自：工作型態的改變及多重心理壓力。(2)先天性心臟病童父親的心理適應歷程較容易被忽略。(3)疾病並非僅有負面的失去；病童家長的透過親職韌性及家庭復原力得到了喜樂。(4)先天性心臟病童在疾病、父母、手足、同儕、老師、學校及社會層面均面臨心理適應的課題。(5)先天性心臟病童及家長透過充權及社區韌性獲得心理適應上的協助。 結論： 目前先天性心臟病童家庭仍缺乏、未被滿足的需求有： (1)教導家長如何讓病童瞭解自己罹患的疾病：怎麼告知？孩子怎麼接受？(2)學校及學校老師學習如何以不粗糙的方式在學校及班級中告訴其他孩子病童的狀況及處理相關的事件：沒有足夠的管道學習。(3)提升社會大眾對先天性心臟病的認知：社會大眾因對疾病、障礙的認知不足，而對病童感到懼怕甚至歧視。 上述亦可擴及於家有不同於先天性心臟病障礙別孩子的父母親及家庭的。無論障礙別為何，大家一樣面臨著這些磨難。 建議政府及相關單位投入精力研擬如何提升及促進這些未被滿足的需求面。不單單是為了先天性心臟病家庭，各個家有不同障礙別家族成員的家庭都面臨著這樣的困苦。以公共衛生的觀點而言，建構及營造友善環境應為國家政策。因心理健康是每個國民都應擁有的基本人權，包括弱勢群體等，故維護心理健康是國家社會的責任。

Background and objectives: Congenital heart disease is one of the most common illnesses in the congenital deformity. With advances in medical technology and improvement in medical care, survival rates of children with congenital heart disease (CHD) have improved. Thus children with CHD can usually survive into older ages. In this study, we try to comprehend the families’ psychological adaptation of children with CHD in their life history. The objectives of this study are explorations on (1) parents’ psychological adaptation with child’s CHD, (2) comprehension the response strategies of parents to raise the children with CHD, (3) comparing the differences in psychological adaptation between fathers and mothers and (4) try to understand the psychological adjustment of the growth from the children with CHD. Methods: Data were collected by in-depth interviews. By means of snowball sampling and purposive sampling, 6 mothers, 3 fathers, 2 teenagers and 1 adult were selected and interviewed during October 2013 to June 2017. The interview data were verbatim transcribed and main themes embedded in the participants’ narratives and conversations were extracted. Results: (1) The parents feel the sadness and painstaking by changing jobs and multiple psychological stresses. (2) Fathers’ psychological adaptation is easier to overlook. (3) The parents gained happiness through parenting and family resilience. (4) The children with CHD are facing the psychological adaptation in many ways, like the disease, parents, siblings, classmates, teachers, schools and society. (5) The parents and the children gained some help on psychological adaptation through empowerment and community resilience. Conclusions: There are some unsatisfied needs for the families with CHD. (1) How to tell the children about the disease. The parents need to counseled the way and the methods. (2) The teachers need to learn the appropriate way to introduce the children with CHD to others. They may not have enough experience to dial with some fragile situations. Learning how to handle some situations to the children with CHD appropriately is required. (3) The general public needs to promote the awareness of CHD. Some people are afraid of the illness and acting biasedly because they don’t know the disease well enough. The aforementioned statements could also be duplicated to the families with other diseases. No matter what the diseases are, these could cause the difficulties and afflictions to everyone. We suggest the government to do more efforts on these unsatisfied demand. It’s not only for the families with CHD children but also for the families with other diseases. In public health, the construction of a friendly environment for patients and their family should be one of the national policy. Mental health is the basic human rights that everyone should have, including the disadvantaged groups. The importance of mental health and wellness for individuals with mental health problems are the main issues for the country and society.