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

賴念華; 李御儂; 羅子琦; 蕭雅雯

doi:10.6172/BSE.202003_45(1).0001

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P1 - 32

社会科学 > 教育学

DOI： 10.6172/BSE

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台湾身心障碍者母亲在不同时间点之困境与服务需求初探

Challenges, Needs, and Service Expectations of Mothers of Children with Disabilities

赖念华(Nien-Hwa Lai) ；李御侬(Yu-Nung Lee) ；罗子琦(Tzu-Chi Lo) ；萧雅雯(Ya-Wen Hsiao)

特殊教育研究学刊； 45 卷 1 期 (2020 / 03 / 31) ， P1 - 32

繁体中文 DOI： 10.6172/BSE.202003_45(1).0001

本土文化脉络；身心障碍者；身心障碍家庭；服务期待；障碍者母亲需求； Children with special needs ； families of people with disabilities ； indigenous cultural context ； needs of mothers of people with disabilities ； people with disabilities ； service expectations

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摘要 │ 参考文献 (98) │ 被引用文献 (6) │ 国际计量

摘要〈TOP〉

并列摘要〈TOP〉

Purpose: Focusing on the indigenous context in Taiwan, this study aimed to update current knowledge on the family life of mothers of children with disabilities. The difficulties encountered by these female caregivers over the lifespan of their children as well as their needs and service expectations were investigated. Methods: Five focus group interviews were conducted with 15 female caregivers who resided in the urban areas of Northern Taiwan to collect data on their caregiving experiences. Qualitative analysis founded in grounded theory was performed on the transcribed data. Results/Findings: On the basis of the chronological development of children with disabilities, the researchers categorized the difficulties and needs delineated by the caregivers into two groups: ＂stage-specific＂ and the ＂life-long.＂ In particular, across the lifespan of children with disabilities, the stage-specific group identified four stages of life development as well as respective difficulties and needs. During the diagnostic stage, the caregivers experienced difficulties in managing complex and unutterable emotions and intrafamilial stresses, and they required understanding and support from their significant others. During the early intervention and rehabilitation stage, the caregivers struggled between their careers and families, spousal conflicts, social isolation, and an overwhelming demand to care for both children with disabilities and their healthy siblings; therefore, they required ample respite care, parenting education, and spousal alliance. During the schooling stage, the caregivers experienced difficulty in adapting to the education system and confronting the identities of both their children with disabilities and their healthy siblings, who began exhibiting a stronger self-concept. The caregivers consequently expected more support from their partners and fellow caregivers as well as a well-rounded education system. During the placement stage, they worried about their children's ability to live independently and the quality and outlook of placement services, while perceiving the demand to readjust their relationships with their partners and children with disabilities. Thus, in addition to the needs in quality placement institutes, they had to learn and relinquish their caregiver roles, attempt to embrace their own lives again, and reconnect with their partners. Regarding the life-long group, the difficulties experienced by the caregivers across their children's lifespan included social stigmatization, rough attitude of professionals, and bureaucracy in the medical and social welfare systems. In response, the needs and expectations in this category included understanding the support of professionals, mutual support from peer parents, and consolidated case management with one-stop services. Conclusions/Implications: These research findings elucidate the culture-sensitive discussions and suggestions on promoting the rights of female caregivers and destigmatization of disabilities. Furthermore, the transferability of the findings are outlined in the research limitations.

参考文献 ( 98 ) 〈TOP〉

利翠珊, Tsui-Shan(2005)。身心障碍儿童家庭中夫妻的压力、付出与恩情。中华心理卫生学刊，18(2)，25-54。
连结：
利翠珊, Tsui-Shan,张妤玥, Yu-Yueh,邓皓引, Hao-Ying(2014)。育儿阶段夫妻工作家庭压力调适：系统界限的定位与转变。中华心理卫生学刊，27(1)，37-72。
连结：
林玲伊, Ling-Yi(2009)。前驱研究：台湾的青少年和成年人自闭症家庭之照顾者负荷及自闭症终身议题。身心障碍研究季刊，7(4)，291-311。
连结：
唐宜桢, I-Chen,陈心怡, Hsin-Yi,吴慧菁, Hui-Ching,郑诗蓉, Shih-Rong,高艺洳, Yi-Ru(2009)。身心障碍污名认知与污名主观经验－以精神疾病患者及脊髓损伤者为例。身心障碍研究季刊，7(4)，230-244。
连结：
陈依煜, Yi-Yu,连盈如, Yin-Ju(2015)。大学生精神病去污名教育介入成效初探。中华心理卫生学刊，28(3)，421-447。
连结：

被引用文献 ( 6 ) 〈TOP〉

国际计量

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