研究生: |
林照程 Lin, Chao-Chen |
---|---|
論文名稱: |
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 A Study on Supporting Families of Individuals with Disabilities through Respite Care: A Case Study of Angel Heart Family Social Welfare Foundation |
指導教授: |
胡心慈
Hu, Shin-Tzu |
口試委員: |
賴念華
Lai, Nien-Hwa 趙本強 Chao, Pen-Chiang 胡心慈 Hu, Shin-Tzu |
口試日期: | 2024/01/23 |
學位類別: |
碩士 Master |
系所名稱: |
特殊教育學系 Department of Special Education |
論文出版年: | 2024 |
畢業學年度: | 112 |
語文別: | 中文 |
論文頁數: | 112 |
中文關鍵詞: | 身心障礙者 、充電喘息營 、愛奇兒家庭支持 、增權賦能 |
英文關鍵詞: | Persons with disabilities, Recharge Respite Camp, Special Children and family support, Empowerment |
研究方法: | 參與觀察法 、 文件分析法 、 深度訪談法 、 焦點團體法 |
DOI URL: | http://doi.org/10.6345/NTNU202400338 |
論文種類: | 學術論文 |
相關次數: | 點閱:115 下載:42 |
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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 Camp Program" 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.
王大明、楊德政(2016)。領隊工作價值觀與家庭支持對工作滿意度支影響。觀光旅遊研究學刊,11(1),43-58。
李雅敏(2005)。身心障礙者家庭之復原力。臺東特教,21,8-15。
呂全發、黃娟娟(2015)。銀髮族休閒運動餐與、家庭支持與幸福感關係之研究。彰化師大體育學報,14,15-26。
周月清(2001)。家庭社會工作︰理論與方法。五南。
周純玉(2009):從心出發-自閉兒母親參與家長團體的歷程之探討(未出版碩士論文)。國立屏東教育大學特殊教育學系。
吳稟琦(2014)。身心障礙兒家長之照顧壓力與喘息經驗—以天使心家族暑期喘息營為例(未出版碩士論文)。國立臺北教育大學。
邱美華(2016)。焦點解決團體諮商應用於「家庭支持團體」模式之探討。東方學報,36,235-249。httpsdoi.org10.29421JTDU.201603_(36).0015
洪文卿(2003)。特殊教育資源及支持服務系統。南投文教,27,26-29頁。
胡慧嫈、許素彬(2011)。家庭支持功能與身心障礙者就業因素之研究。臺中市政府勞工局。
陳怡君(2001)。喘息服務之評估研究—以臺北市為例(未出版碩士論文)。臺北醫學院公共衛生學研究所。
張麗春(2004)。賦權概念分析。護理雜誌,51(2),84-90。
陳進吉(2004)台北市發展遲緩兒童家庭支持及家庭需求調查之研究(未出版碩士論文)。中國文化大學。
許素彬、張耐、王文瑛(2006):身心障礙幼兒家長支持團體運作之研究與評估:以領航父母為例。臺大社會工作學刊,13,1-40。
張美雲、林宏熾(2007): 發展遲緩兒童家庭社會支持與賦權增能之相關研究,特殊教育學報,26,55-84。
張艾寧(2007)。影響社區成年智障者及其家庭使用福利服務之相關因素探討-以新竹市為例(未出版碩士論文)。東吳大學社會工作學系。
陳芬婷、邱啟潤(2015)。喘息服務方案對家庭照顧者之效益。護理暨健康照護研究,11(1),53−63。[Chen, F., & Chiou,C. J. (2015). The benefits of respite care programs for family caregivers. Journal of Nursing and Healthcare Research,11(1), 53−63.] doi:10.6225/JNHR.11.1.53
梁詠欣。(2018)。身心障礙者家長領袖成長之心路歷程(未出版碩士論文)。國立臺灣師範大學特殊教育學系。
莊堯安(2017)。愛奇兒手足在兒童階段之需求與服務期待—以天使心家族社會福利基金會為例(未出版碩士論文)。臺北市立大學。
財團法人天使心家族社會福利基金會 (2023)。2023年領航家長培力實驗計畫。作者。
郭凡箐(2021)。家庭支持對腦性麻痺者學習經驗之個案研究(未出版碩士論文)。國立屏東大學特殊教育學系。
黃志雄(2003)。特殊兒童家庭支持與家長參與。特教園丁,19(2),8-15。
黃俐婷(2004)。家庭支持的結構與功能分析。社區發展季刊,105,367-380
張英熙(2013):從失落到接納:特殊兒童家長心理支持團體實務。心理。
張宇傑(2017)。愛奇兒手足在青少年階段之需求與服務期待—以天使心基金會為例(未出版碩士論文)。臺北市立大學。
鈕文英(2017)。質性研究方法與論文寫作。雙葉書廊。
曾聖文(2020)。「代」我走一條「平凡」的路: 一個偏遠地區隔代教養者照顧心智障礙孫女的成功個案研究(未出版碩士論文)。國立臺灣師範大學特殊教育學系。
葉瓊華(2001)。在家教育學生家庭生活素質之研究。特殊教育學報,15,337-373。
趙明玲 (2002)。照顧家中長期重度腦性麻痺兒的母親之壓力源及因應行為, 德育學報,18,81-92。
鄭秀容(2005)。居家失智老人家屬照顧者照顧負荷及照顧需求(未出版碩士論文)。中山醫學大學護理研究所。
劉芷瑩(2006)。發展遲緩兒童非自願性家庭親職功能提昇方案之初探(未出版碩士論文)。國立臺中教育大學早期療育研究所。
劉凱(2015)。「家長支持家長」的在地實踐—陪伴障礙幼兒家長的行動研究(未出版博士論文)。國立臺灣師範大學。
蔡敦浩、劉育忠、王慧蘭(2011):敘說探究的第一堂課。鼎茂。
盧妍伶(2014)。家庭結構與兒童幸福感。臺灣社區工作與社區研究學刊, 4(2), 95-125。
徐敏、劉萌容(2021)。以家庭為中心專業團隊服務模式對早期療育之成效探討── 以南部某一區域醫院為例。特殊教育學報, 54,61-88。 DOI: 10.53106/207455832021120054003
賴念華、胡心慈(2016)。愛奇兒照顧者在不同時間點之需求與服務期待之調查研究—以天使心基金會為例(科技部補助專題研究計畫成果報告,MOST 103-2410-H-152-005-SSS)。科技部。
賴念華、李御儂、羅子琦、蕭雅雯(2020)。臺灣身心障礙者母親在不同時間點之困境與服務需求初探。特殊教育研究學刊,45 (1),1-32。
謝秀芬(2008)。家庭服務概念與發展。載於謝秀芬、王行、王舒芸、李庚霈、傅從喜、鄭瑞隆(主編),家庭支持服務(4-27 )。國立空中大學。
謝依臻(2020)。遇見後天家人:參與支持團體的心智障礙者成年一般手足之壓力調適探究(未出版碩士論文)。國立臺灣師範大學。https://doi.org/10.6345/NTNU202000892
蕭瑞麟(2011):不用數字的研究。培生。
Aniol, K., Mullins, L. L., Page, M. C., Boyd, M. L., & Chaney, J. M. (2004). The relationship between respite care and child abuse po-tential in parents of children with developmental disabilities: A pre-liminary report. Journal of Developmental & Physical Disabilities, 16(3), 273-285.
Bass, D. (1996). Family support across programs and populations. In G. Singer, L. Powers, & A. Olson (Eds.), Redefining family sup-port (. 39-56). Paul H. Brookes.
Bogdan, R.C. and Biklen, S. K. (2007). Qualitative research for edu-cation: An introduction to theory and methods. 5th Edition, Allyn & Bacon.
Brookman-Frazee, L. (2004). Using parent/clinical partnerships in parent education programs for children with autism. Journal of Posi-tive Behavior Intervention, 6(4), 195-213.
Bamm, E. L., & Rosenbaum, P. (2008). Family-centered theory: Ori-gins, development, barriers, and supports to implementation in reha-bilitation medicine. Archives of Physical Medicine and Rehabilitation, 89(8), 1618-1624. https://doi.org/10.1016/j.apmr.2007.12.034
Chan, J. B., & Sigafoos, J. (2000). A review of child and family char-acteristics related to the use of respite care in developmental disabil-ity services. Child & Youth Care Forum, 29(1), 27-37.
Delaney, L., & Finger, J. A. (1991). Family support programs and family literacy Overview of family support programs. Chicago: Family Resource Coalition.
Dunst, C., Trivette, C., & Jodry, W. (1997). Influences of social sup-port on children with disabilities and their families. In M. J. Gural-nick (Ed.), Effectiveness of early intervention, 99-522. Baltimore: Brookes.
Dunst, C. J., Boyd, K., Trivette, C. M., & Hamby, D. W. (2002). Fam-ily-oriented program models and professional helpgiving practices. Family Relations, 51(3), 221-229. https://doi.org/10.1111/ j.1741-3729.2002.00221.x
Dodds, R. L., & Singer, G. H. S. (2017). Parent-to-parent support providers: How recruits are identified. Journal of Applied Research in Intellectual Disabilities, 31, 435–444. https://doi.org/10.1111/ jar.12422
Freedman, R. I. & Boyer, N. C. (2000). The power to choose:supports for families caring for individuals with developmental disa-bilities. Health & Social Work, 25(1), 59-68.
Gowen, J. W., Christy, D. S., & Sparling, J. (1993). Informational needs of parents of young children with special needs. Journal of Early Intervention, 17(2), 194-210.
Guralnick, M. J. (2005). An overview of the developmental systems model for early intervention. In M. J. Guralnick (Ed.), The devel-opmental systems approach to early intervention,. 3-28., Paul H. Brookes.
Heller, T., Miller, A. B., & Hsieh, K. (1999). Impact of a consumer-directed family support program on adults with developmental disa-bilities and their family caregivers. Family Relations, 48(4), 419-427. doi: 10.2307/585250
Kieffer, C. (1984).Citizen empowerment: A developmental perspective. Prevention in Human Services, 3, 9-36.
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Sage.
La Fountain, R. M., & Garner, N. E. (1996). Solution-focused coun-seling group: The results are in . Journal for Specialists in Group Work, 21, 128-143
Marcenko, M., & Meyers, J. (1994). How families of children with se-vere disabilities choose to allocate a cash subsidy. The Journal of Mental Health Administration, 21(3), 253-261. doi: 10.1007/BF02521332
Robbins, V., Johnston, J., Barnett, H., Hobstetter, W., Kutash, K., Duch-nowski, A. J., & Annis, S. (2008). Parent to parent: A synthesis of the emerging literature. University of South Florida, The Louis de la Parte Florida Mental Health Institute, Department of Child & Family Studies.
Santelli , B., Poyadue , F. S. & Young , J. L. (2001). The parent to parent : Handbook-connecting families of children with special needs. Brookes Allyn & Bacon.
Trivette, C., Dunst, C., & Hamby, D. (1996). Factors associated with preceived control appraisals in a family-centered early intervention program. Journal of Early Intervention, 20(2), 165-178
Trute, B., & Hiebert-Murphy, D. (2002). Family adjustment to child-hood developmental disability: A measure of parent appraisal of fam-ily impacts. Journal of pediatric psychology, 27(3), 271-280.
Turnbull, A., Turnbull, R., Erwin, E. Jasoda, L. C., & Shogren, K. A(2013). 七個建立有效合作及互信關係的原則(葛竹婷,譯)。華騰。(原著出版於 2010)。