疾風知勁草—身心障礙兒家庭韌性

Abstract

身心障礙兒家庭需承受醫療、教育、就業、環境與經濟等生活壓力。過往研究多由弱勢觀點探討身心障礙兒家庭的家庭壓力與生活適應，忽略家庭內在強化力量的重要性。本研究以家庭韌性觀點出發，期盼達成三項研究目的：

一、築構身心障礙兒家庭生命故事與家庭生活滿意度圖表，了解家庭韌性產生的背景及家庭生活滿意度的轉變。 二、探討身心障礙兒家庭韌性內涵，了解家庭成員與家庭具有的特性與能力。 三、探討身心障礙兒家庭處理壓力與因應困境的歷程。 透過本研究，期盼找出存在這些身心障礙兒家庭中的家庭韌性，鼓勵並幫助其他家庭，同樣也能發覺並運用這些能力來因應壓力與解決問題。

本研究定義家庭韌性（family resilience）為家庭具有的特性與能力，以及家庭藉著運用這些力量，能在不利的環境中，正向因應挑戰、維持家庭功能運作，並獲得正向適應的家庭韌性發展歷程。 透過質性研究方法，以立意取樣選取四個經濟不利的身心障礙兒家庭作為本研究參與者，訪談家庭主要照顧者的感受與看法。訪談次數不一，每位參與者共進行4-6次不等的訪談，總計訪談時間約12-16小時，並全程錄音轉譯為逐字稿再進行分析。為保護研究參與者隱私，並服膺本研究強調家庭強「勁」的力量，研究者擬以相近的同音字來為這些參與者命名，並融合這些研究參與者的家庭韌性特質，作為其匿名的代稱：錚競、依境、恬靚、崎徑。

本研究發現如下： 一、 家庭在逐夢、築夢、夢碎與圓夢的家庭生命歷程中，持續面對與處理壓力，展現家庭韌性，使得壓力事件對生活滿意度影響力逐漸降低，家庭功能維持穩定狀態 二、身心障礙兒家庭成員具有個性樂觀、能面對問題、能忍讓、有責任感的個人特質，能營造出具三項特質的家庭--互信互助的婚姻關係、穩定的家庭經濟狀況、有共同的家庭願景，並以這些個人及家庭特質面對挑戰。 三、 身心障礙兒家庭在面對障礙事實、障礙手冊、社會支持、照顧障礙兒、障礙兒與未來生活規劃的信念時，皆經過信念系統轉變的歷程。 四、身心障礙兒家庭的家庭組織模式轉變包括：彈性調整生活作息並分擔照顧責任、凝聚家人情感與共識、建立家庭儀式與作息，並妥善管理家庭資源，有效運用社會經濟資源。 五、身心障礙兒家庭溝通與問題解決過程轉變包括：家人溝通型態、家庭情感互動型態與家庭決策模式。 最後依據研究結果，分別對身心障礙兒家庭、社會福利機構與未來研究提出建議。

Families with handicapped children face a lot of pressure in medical treatments, education, employment, finances and everyday living. Prior research has focused on examining the pressures and adaptation within the families with handicapped children from the perspective of the disadvantaged. It has overlooked the need for strengthening the family. Using family resilience as the starting point, this research had three goals:

a. Construct a story and satisfaction diagram of families with handicapped children to understand how family resilience is developed and how satisfaction in family life changes. b. Investigate the contents of family resilience; to understand the characteristics and strengths of the family and its members. c. Investigate the experience of how families with handicapped children handle pressures.

This research aimed at discovering resilience within the families with handicapped children. The findings could encourage and help other families to apply these strengths to cope and solve problems.

This study defined family residence as the characteristics and strengths in a family and the experience of applying these strengths to remain functional in an adverse environment.

Through qualitative research and purposive sampling, the key caretakers of four financially disadvantaged families with handicapped children were interviewed for their feelings and views. The numbers of interviews varied from four to six times, totally twelve to sixteen hours. The entire process was recorded and transcribed for analysis. Pseudonyms were given to the subjects to protect their privacy and anonymity.

The key findings of the study were as follow: 1. Families that strove towards their dreams wrestled with challenges and demonstrated resilience to reduce the impact of pressure on family satisfaction. As a result, these families were able to continue to function with stability. 2. The families of optimistic and patient family members, coupled with a sense of responsibility, had three characteristics: marital relationship of mutual trust and assistance, stable financial situation, and a shared vision for the family. 3. Families with handicapped children all had experienced changes in their belief systems in the process of facing the realities of being certified as disabled, receiving social support, taking care of disabled children, and planning for the children’s future. 4. Areas of changes in the mode of organization of families with handicapped children included: adjustments of daily schedules and caretaking responsibilities, cohesion and common awareness within the family, establishment of family rituals, appropriate management of family resources, and effective use of social financial resources. 5. Changes in the process of solving problems in families with handicapped children included: mode of communication within the family, emotive interactions among family members, and mode of decision making within the family.

Based on the findings of the results, this thesis provided recommendations for families with handicapped children and social welfare organizations. It also proposed topics for future research.