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

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

本研究從台灣本土文化脈絡向內聚焦，以障礙家庭生命發展為縱軸，探究身心障礙者母親的生命經驗與服務期待，以補現有文獻之缺。研究以天使心家族基金會會員及同儕家長為研究對象，經五場焦點團體訪談十五位來自都會區之身心障礙者母親，發現其困境與服務需求可依身心障礙者生涯發展軸線切分為階段性與跨階段性兩類。階段性含（一）診斷期：困境為難以言喻的情緒、來自家人的壓力；需求是重要他人理解與支持；（二）早療復健期：困境為取捨職涯與家庭衝突、孤立無援心力交瘁、顧此失彼難為母職；需求有極需身心喘息服務、尋求親職衛教資訊、夫妻合力增進理解；（三）進入教育體系期：良莠不齊的教育環境、獨自教導障礙兒與健康手足的挑戰；需求有同儕與丈夫的支持、健全友善的教育環境；（四）離開教育體系期：困境為障礙兒獨立生活及安置的困難、與障礙兒和丈夫共處的窘境；需求有找回自我與重拾關係、優質且充足的安置機構。跨階段性困境為（1）社會汙名化的困窘、（2）缺乏溫度的專業人員、（3）醫療與社福系統的分歧；需求為（1）專業人員的理解與支持、（2）同儕家長間的互助扶持、（3）單一窗口的個管服務。研究者試從本土文化脈絡視角提出初步討論與建議：（一）受訪者以充足性與提升性需求為主：（1）母親自主意識提升、（2）社會倡議去污名化、（3）重視身心障礙者母親心理健康；（二）夫妻關係是母親的身心健康基礎；（三）同儕家長互助網絡之重要性。

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. 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. Implications: These research findings elucidate the culture-sensitive discussions and suggestions on promoting the rights of female caregivers and destigmatization of disabilities.