雙重老化智能障礙者家庭照顧經驗初探

Phenomena of Care Experiences of Two-generation-elderly Families with Adults with Intellectual Disabilities

陳伶珠(Ling-Chu Chen)

《台灣高齡服務管理學刊》 1卷1期 (2011/04) Pp. 138-165

https://doi.org/10.29745/JSCSM.201104.0005

摘要

隨著醫療科技與公共衛生的進步，國內外文獻均指出智能障礙者平均餘命延長，智障者有很大機會邁入老年階段，他們的主要照顧者大多數也面臨個人老化的問題，因而引發研究社群對智障者及其照顧者雙重老化議題的關注。本研究運用現象學質性探究方法了解老化智能障礙者的主要照顧者照顧經驗脈絡。研究參與者為7位主要照顧者，與智障者關係以父母為主，另有1位手足、1 位配偶，年齡49-83歲，研究參與者照顧的智障者有女性4人、男性3人，年齡43-48歲。研究結果依據照顧者關注的面向歸納照顧經驗主軸有三：日常生活照顧、健康照顧、老年與終極照顧，貫穿三個主軸的照顧經驗本質是「無止境的擔憂」。研究結果凸顯提供老化智障者與其主照顧者支持服務的重要性。研究發現與建議：從照顧者的角度認識獨特及正向的照顧經驗、運用照顧管理舒緩老年照顧者負荷、針對個別化需求提供社區式的長期照顧服務、支持雙重老化智障者家庭的政策與專業知識技術仍待發a展。

關鍵字

老化 ； 智能障礙者 ； 雙重老化家庭 ； 照顧經驗

並列摘要

As medical science and public health advanced, documents have pointed out that the average life expectation of adults with intellectual disabilities (ID) is extended. Adults with ID can survive into old age as same as their counterparts. Most of their caregivers are ageing and suffering their own ageing problems. The agenda of two-generation-elderly families caused researchers' attentions. This study applied phenomenological qualitative research method to inquire the care experiences of families with adults with ID. Participants are 7 caregivers, 5 old parents, 1 sibling, and 1 spouse, aged from 49 to 83. Their family members with ID are 4 female and 3 male, aged from 43 to 48. Results include 3 main axis: daily life care, health care, and old age and end of life care. The essence of their care experiences is ”endless worries”. Findings highlight the importance of providing support services to families with adults with ID. The researcher suggests: recognize caregivers’ unique and positive care experiences via their own perspectives, apply care management to ease the caregivers' burdens, develop community-based long-term care services to fit their individualized demands, and cumulate policy debate and professional knowledge and skills to work with families with adults with ID.

並列關鍵字

aging ； intellectual disability ； two-generation-elderly family ； care experiences