罕見疾病男孩母親之心路歷程

The Experiences and Adaptation Process of a Mother Who Raises a Child with Rare Disorder

林靖婷(JING-TING LIN)

指導教授 ： 李宜娟博士

朝陽科技大學/人文暨社會學院/幼兒保育系/碩士(2014年)

摘要

本研究採用敘事研究法，深入探究一位國內尚無此病例而無法命名的罕見疾病兼多重障礙孩童母親的心路歷程。研究者欲探究罕見疾病孩童母親的心理調適階段，並從中找尋其影響因素。此外研究者也欲探討罕見疾病孩童母親與家庭互動情形及社會支持系統之關連性。
為深入瞭解及蒐集完整資料，本研究訪談所有家中成員包括罕見疾病孩童之母親、父親、妹妹、特教班之教保員，並安排三次家庭成員互動之觀察。相關之文件資料如疾病診斷書、電視媒體和報紙的相關報導與個人生活影片也一併蒐集之。
本研究經資料收集、分析後所得之研究結果如下：
一、本研究個案罕病兒母親之心理調適階段：罕病兒母親在孩子零至二歲時期歷經震驚期、焦慮沮喪期、慌亂無助期、身心倦怠期、面對接受期及孤立逃避期等六個時期；孩子三至十二歲期間歷經希望期及穩定發展期。最初的兩年是罕病兒母親最心力交瘁，最需要幫助的時候。
二、影響個案罕病兒母親之心理調適因素包括「罕病兒病況逐漸穩定」、「家庭成員重新建立互動關係」及「社會支持系統」等三大類因素，其中以家庭成員之支持為最關鍵之因素。
三、罕病兒母親獲致之內在社會支持如個人特質和宗教信仰；外在社會支持如醫療幫助、社會補助、家庭成員鼓勵、參與病友團體、教育補助等。罕病兒母親在孩子零至四歲時最需要的是醫療幫助；四歲以後則更需要家庭及病友團體的支持。
研究者期望將本研究結果提供給相關單位以及有類似個案之家庭參考之，並呼籲社會大眾能多加關懷，並接納與支持這些罕病兒，讓他們也可以快樂的成長，認真的生活。

關鍵字

社會支持系統 ； 家庭互動 ； 心路歷程 ； 罕見疾病

並列摘要

The qualitative study is aimed to understand the experiences and the adaptive process regarding a mother of a child with rare disease. The researcher wants to explore the psychological adjustment stage that the mother of a child with rare disease had gone through, and the influencing factors. In addition, the researcher also wants to explore the relationship and the interaction among the family members. How the social supporting system worked was discussed, too.
To better understand and gather complete information, the researcher interviewed all family members including the mother, father, sister, special education staff of Kyobo and observed how the family members interact with each other. Documents such as diagnosis, television reports, newspaper stories, and personal life movies were collected.

Through data collection and analysis, the results obtained of this case study were as follows:
1. The psychological adjustment stage of this case study, a mother of a child with rare disease, includes: during the child’s 0-2 years of age, the mother experienced six phases, namely shocked period, anxious depressed period, panic helpless period, body mind fatigued period, confronting accept period, isolated escape period; during the child’s 3-12 years of age, the mother experienced expectant period, and stable development period. The first two years was the most physically and mentally exhausted period to the mother, and it was also a period requiring most help.

2. Psychological adjustment factors affecting this mother include three factors as follows: “the status of the RDC or rare-disease child gradually stabilized”, “re-establishment of the interactive relationship between family members”, and “social support system.” Among them, the support from family members is the most crucial factor.

3. RDC mother obtained inherent social support, such as
personal traits and religion, and external social support, such as medical assistance, social assistance, encouragement from family members, participation in patient groups, education grants. What the mother needed most during RDC’s 0-4 years old was medical help; however, after 4, the mother needed more support from family members and patient groups.

The researcher hopes the findings, as a useful reference, to be provided to the relevant units and those families that have similar cases and appeals to the public for paying more care to, and accepting and supporting their rare-disease children, so they can grow up happily and live earnestly.

並列關鍵字

family interaction ； psychosocial process ； RDC: rare-disease child, rare disease ； social support systems

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罕見疾病基金會(2000年