Housing transitions and quality of life: Aging adults with intellectual disability and their parents
Ministry of Science and Technology
National Yang-Ming University
Institute of Health and Welfare Policy, National Yang-Ming University
住宅轉銜、老年遷移、雙老家庭、老人、智障、 社會照護、健康照護、 不平等、生活品質
moving in old age, housing transitions, older people, intellectual disability, quality of life, inequality, long-term care
關鍵字: 住宅轉銜、老年遷移、雙老家庭、老人、智障、 社會照護、健康照護、 不平等、生活品質 研究背景與目的：本兩年期 研究目的在探討中老年智障者及其同住老年父母（簡稱雙老家庭）照護需求、服務使用、老年遷移決策過程、住宅轉銜模式、遷移經驗與生活品質，並與台灣一般老人比較。 研究方法：第一階段以質性方法深度訪談及Clapham (2005, 2010) “housing pathways” 模式探討新竹市30位中老年智障者(≥40歲 )及其同住老年父母（30個雙老家庭）健康失能、照護需求、服務使用、社會因素、住家主觀看法、遷移、住宅轉銜和生活福祉的關係。第二階段依質性研究發現，發展標準化問卷，普查新竹市161個及花蓮縣76個雙老家庭，檢視同住「雙老家庭」健康、社會因素和住宅轉銜模式和生活品質關係; 以及 深度訪談花蓮30個雙老家庭。第三階段，以質性研究法及“housing pathways”模式探討30名一般中老年人（≥55歲）住宅轉銜因素和福祉，和前述中老年智障者及其老年父母質性研究結果比較。 研究結果： (1)30名新竹雙老家庭質性訪談發現 發現「雙老」家庭也可能是兩代「三老」家庭，老年衰弱父母及中老年智障者，由中老年手足照顧；多數中老年智障者及其老年父母未使用社會服務。智障者照顧轉銜和父母老年遷移綁在一起，前者途徑形式為「有規劃」和「未規劃」；後者為「不想搬」與「有搬遷」計畫；兩者途徑形式受家庭經濟與家庭互動關係，及父母個人自主性、對傳統照顧文化與房舍認同所影響；已經或可能接手照顧雙老的中老年手足的經濟狀況與照顧文化認同，必須納入考量。父母與手足個人傳統照顧文化認同、經濟及家庭互動關係，大過於失能程度與正式支持系統的影響。 (已經發表：周月清、李婉萍、王文娟。(2018)。兩代「三老」家庭照顧轉銜與老年遷移：老年父母、中老年智障者與手足。臺大社工學刊，37, 99-149。) (2) 60名新竹及花蓮質性訪談及237兩縣市之調查訪問 （詳見2018年發表在英國老人學會國際研討會Manchester，如附件)。 質性研究發現多數選擇在地老化而非老年搬遷。調查的量性資料有61.6% 的老年父母選擇與智障子女在地老化，另外的38.4%：沒有智障子女自己在地老化、搬去與其他非障礙子女同住和安養院。邏輯是回歸分析發現，針對選擇與智障子女在地老化的顯著相關因素包括：居住房舍是自己的、滿意目前的居住社區，但獲得較低程度的社會支持。 (3) 30名一般中老年人質性訪談發現 一般老人訪談來源：（1）經過朋友介紹自己的家人、親友、教會及服務單位的長者; (2)弘道老人基金會介紹。受訪地區：台北、台中、南投、高雄、屏東、宜蘭、花蓮。居住型態：獨居、與外籍看護同住、與配偶同住、與子女同住（三代同堂）、住安養院。獨居者多數不想搬去安養院，有子女者子女偶會返家探視; 弘道基金會介紹之失能者有使用基金會居服;健康者若為弘道基金會介紹則會參加社區理事會辦的活動。和中老年智障者及有智障子女老人相同處，都不想搬去機構，對機構服務品質沒信心及認為住機構就是遭家人拋棄; 不同處有智障子女的老人不會獨居，至少與智障子女同住，智障子女也可能成為其身體失能後的照顧者; 但針對未來失能搬遷或居住安排計畫，有智障子女者則須考量智障子女的照顧轉銜，一般老人則只須考量自己的計畫即可。 結論： (1) 兩代「雙老」或「三老」家庭就地老化健康與社會照顧需求，亟待納入長照服務。 (2) 為支持中高齡智障者及其高齡父母就地老化，居住房舍及相關支持服務，當納入住宅與長照政策永續規劃。 (3) 無論失能與否及是否有障礙子女之老人，多數選擇就地老化;拓展普及性與可負擔的長照服務有其必要性，而社區理事會的長青服務，亦應納入這群中高齡智障者及其高齡父母。
Background: Little research has been conducted about care needs and housing transitions among old two-generation families that include aging (≥40) adults with intellectual disabilities (ID) and their older parents. A mixed methods approach and the “housing pathways” theory were employed to explore how moving in old age and care needs among these older individuals/families including the experiences comparison with general older people in Taiwan. Methods: First stage, 30 old two-generation families in Hsinchu City, 30 aging adults with ID and their older parents, were invited to participate in our in-depth interview to explore care and moving in old age among these families. Theoretical framework of “housing pathways” was employed as the starting point of the analysis. Based on the findings of the qualitative study, standardized questionnaires was developed to collect quantitative data and to investigate the relationships among the dimensions of housing pathways, and the choices of moving in old age among these older individuals/families. Second stage, 161 older two-generation families from Hsinchu City and 76 from Hualien County were invited and completed a face-to-face interview survey at their homes. Furthermore, another 30 two-generation families from Hualien County were invited and participated in the in-depth interview. Third stage, in order to compare the aging adults with ID and their older parents with old people from the general population, 30 older people (aged ≥55 and ≥65) without a child with ID in Taiwan taken part in the in-depth interview. Findings (1) The findings showed that an older two-generation family might include not only older parents and ageing offspring with ID, but also the ageing siblings of the ageing adults with ID. These ageing siblings were likely to be the carers of older and frail parents and ageing adults with ID. Families including older parents and ageing adults with ID rarely used services which are provided for people with disability and older people from formal systems. The parents’ care transition plan for ageing adults with ID and their own moving plan in old age were intersected, connecting parents\' and siblings\' individual, family and social contexts. Two types of pathways to both areas, namely care transition of ageing offspring with ID and older parents\' moving, were identified: “planned” vs. “not planned” and “not considering moving” vs. “considering moving”. The types of pathways of moving in old age and care transition among these families are related to individual parents’ autonomy and parents home identity and both parents\' and siblings’ cultural identity as well as with the relationship and financial conditions of both the original and siblings’ families. (2) Qualitative findings present that ageing in the old place was more popular than moving. Survey study showed that 61.6% of the parents who were interviewed would choose ageing in place with their ageing offspring with ID and another 38.4% participants would stay in the old place without their disabled children or move to the other children’s home/nursing home. Logistic regression analysis reveals that the parents who prefer ageing in place together with their offspring with ID were more likely to have house ownership and as well as have higher level of satisfaction with their life and current community, and these two variables were strongly related with each other and linked with their satisfaction with their housing and community identity. (For detail, see the paper presented at at the British Society of Gerontology (BSG)— 47th Annual Conference: Ageing in An Unequal World, July 4-6, 2018, Manchester, UK: Ageing in place together: Older parents and their ageing offspring with intellectual disabilities) (3) Similar to the older parents with an ageing child with ID, majority of older people without a child with ID reluctantly move to nursing home and rather age in place. Like large number of parents with an ageing child with ID, these general older people do not trust care quality of the residential services and feel that moving to nursing home means they are abandoned by adult children. General older people mostly live alone and have no further moving plan precisely. In contrast, the older parents of children with ID at least live with their aging son or daughter with ID and their accompanied disabled children might also become their carer in supporting daily activities. Conclusion (1) This study suggests that both the health and social care needs of these older two-generation families including older parents, ageing adults with ID and their ageing siblings should be considered a high priority by the long-term care scheme which is currently one of the main social policies in Taiwan. (2) In order to make ageing in place together for these families, housing and living support should be considered by current policies.