以充電喘息營支持身障者家庭之研究－ 以天使心家族社會福利基金會為例

Abstract

隨著國際上《身心障礙者權利公約》的倡議與國內法化，身心障礙家庭（愛奇兒家庭）喘息與支持需求的議題近年來漸受到社會重視，然而諸多的服務提供偏向單一對象的支持與協助，較少能為整個愛奇兒家庭及所有成員提供全面與實質的喘息與家庭支持服務。本研究以天使心家族社會福利基金會的『充電喘息營方案』為例，深度探討該方案發展建構的歷程與核心要素，以及此方案對愛奇兒家庭的具體喘息與支持成效。研究方法採質性研究法輔以文件分析、參與式觀察、省思日誌等多元資料，並透過焦點團體訪談與深度個別訪談蒐集9位參與者的經驗，歸納此方案對愛奇兒家庭的滿意情形和具體支持成效。研究結果顯示： 一、方案的建構：著重四大範疇的家庭支持服務提供，包含（一）愛奇兒的專業托顧、（二）照顧者的實質喘息、（三）父母的增能課程、及（四）手足的心理健康陪伴，屬複合型的綜合式家庭支持方案。 二、方案設計七大核心要素為：（一）創造認識理解接納友好氛圍、（二）形塑天使心家族團體認同、（三）提供家長喘息與增能課程、（四）提供愛奇兒臨托關懷與照顧、（五）提供手足喘息與陪伴課程、（六）營造領航家長與志工良性互動經驗、（七）創造遊戲式喘息與合作互動經驗。 三、營會內容設計包含九大核心活動：（一） 迎賓活動、（二）相見歡、（三）開場舞、（四）臨托照顧、（五）手足課程、（六）家長課程、（七）晚會、（八）花絮回顧、（九）晨禱，每個活動皆對應不同家庭支持意涵。 四、方案四大特色為：（一）結合專業心理諮商基礎的模組化課程設計與活動安排、（二）跨專業團隊的合作貢獻與協力實施、（三）兼顧多元角色的家庭支持需求與喘息增能服務、（四）領航家長志工理論化的課程設計與制度化的培訓、（五）多元且逐層進階的支持服務選擇與持續追蹤關懷。 五、方案參與滿意度分析顯示：愛奇兒家庭參加完充電喘息營後，在（一）接納自我、（二）家庭功能與復原力、（三）社會連結與支持、（四）滋養與依附等四大調查表題項皆獲得不同程度的提升。六、喘息營的七大具體支持成效包含：（一）促進父母正向自我接納與身分認同，以嶄新眼光看待愛奇兒、（二）緩解手足身分認同矛盾，懷抱深刻的理解勇敢追尋自己的人生、（三）創造喘息與充電情境，發展並累積多元壓力調適管道與技能、（四）增進家庭成員正向溝通與互動，促發親密關係修復與互愛互諒、（五）提升看見自他需求的覺察力，家庭互動從孤軍奮戰邁向相互支援、（六）創造愛奇兒家庭連結社群資源、開展社交互動、累積社會資本的機會、（七）體現父母先走出來，再看見生命價值，進而促發融合的社會倡議。研究者並於文末提出本研究之限制及針對愛奇兒家庭支持與未來研究的相關建議。

With the global advocacy of the"Convention on the Rights of Persons with Disabilities（CRPD）" and its legalization domestically, issues related to the respite and support needs of families with children with disabilities have gained increasing societal attention in recent years. However, many service providers tend to focus on supporting and assisting individual members, providing limited comprehensive and substantive respite and family support services for the entire special family. This study takes the "Recharge Respite CampProgram" of the Angel Heart Family Social Welfare Foundation as an example, delving into the development process and core elements of the program, as well as its specific respite and support effects on special families. The research methodology employs qualitative research supplemented by document analysis, participatory observation, reflective journals, and gathers experiences from 9 participants through focus group interviews and in-depth individual interviews, summarizing the satisfaction and specific support effects of the program on special families.The research findings reveal:A.Program Construction： Emphasizing the provision of family support services in four major areas, including （a） professional care for special children, （b） tangible respite for caregivers, （c） capacity-building courses for parents, and （d） psychological companionship for siblings, constituting a comprehensive and integrated family support program.B.Design of Camp Content： Involves nine core activities, each corresponding to different family support implications, including （a） welcome activities, （b） social gatherings, （c） opening dances, （d） temporary care, （e） sibling courses, （f） parental courses, （g） evening events, （h） highlights review, and （i） morning prayers.C.Four Features of the Program： （a） Modular course design and activity arrangement based on professional psychological counseling, （b） collaborative contribution and implementation by a multidisciplinary team, （c） addressing the diverse support needs and respite empowerment services for multiple roles, （d） theoretical course design and systematic training for guiding parent volunteers, and （e） diverse and progressively advanced support service options with continuous tracking and care.D.Program Participation Satisfaction： Analysis of special families, after participating in the Recharge Respite Camp, experienced varying degrees of improvement in （a） self-acceptance, （b） family function and resilience, （c） social connections and support, and （d） nourishment and attachment, according to four major survey items.E.Seven Specific Support Effects of the Camp： （a） promoting positive self-acceptance and identity recognition for parents, viewing special children with a new perspective, （b） alleviating sibling identity conflicts, embracing a profound understanding and bravely pursuing their own lives, （c） creating respite and recharging scenarios, developing and accumulating diverse stress adaptation channels and skills, （d） enhancing positive communication and interaction among family members, prompting intimacy repair and mutual love and forgiveness, （e） increasing awareness of recognizing the needs of oneself and others, transitioning from solitary struggles to mutual support in family interactions, （f） creating a community resource net for special families, initiating social interaction, and accumulating opportunities for social capital, and （g） embodying parents stepping out first, realizing the values of special children’s life, and consequently promoting inclusive social advocacy.The researcher concludes the study by outlining its limitations and offering relevant suggestions for future research on supporting special families.