居家照顧處境中的「我們」： 家庭照顧者與被照顧者的生命經驗和互為關係探究

Abstract

在臺灣的長期照顧計畫推行下，居家照顧成為核心的在地性策略，以期提供被照顧者舒適的照護環境以保有其自尊與自主性，並透過資源連結降低家庭照顧者的負擔。然而，照顧並非僅是個別壓力適應的歷程，更關乎到居家中的「我們」如何在如此與脆弱遭逢的存在性處境中，面對曾經熟悉的家變得陌異，而需要重構整體的生活意義，調頻與他人的關係互動。為此，本研究旨在探究居家照顧處境中家庭照顧者與被照顧者的生命經驗與互為關係，以理解其如何在居家生活中透過照顧實踐與病共活的存在性現象，亦深化省思「家」和「照顧」的意涵。研究方法採取現象學心理學之質性研究取徑，藉由半結構式的深度訪談，並以田野筆記增補，訪談4組家庭，共6位家庭照顧者與3位被照顧者，期間歷時一年，總計訪談29次。資料分析分為「照顧經驗主體」與「家人關係互動」的層次，並分別以Moustakas（1994）及van Manen（2014）的現象學分析方法，呈現家庭照顧者與被照顧者作為不同主體的生命經驗以及其在家庭中所共構的互為關係現象。研究結果發現，不同家庭照顧者的生命經驗中揭示出以下其所普遍共享的存在結構：（一）「脆弱性」的翻轉是照顧的現身；（二）在常人世俗中載浮載沈的「家」；（三）「未來」是不願到來的時間。不同被照顧者的生命經驗中則揭示出以下普遍共享的存在結構：（一）過去作為我「曾是」的肯定；（二）從「我能」到「能」的對立；（三）世俗的瓦解，面向「生命」的倫理。而對於家庭照顧者與被照顧者在家庭中的互為關係現象，則發現：（一）照顧的背反，在差錯中在場的牽掛；（二）匯聚於家，不對稱的生命時間；（三）共在的間距，「域外」安居的可能。由此，「家」作為在日常性中可能敞開「域外空間」的倫理未定域，不應以恆定性與功能性的需求介入，而需要對生活世界的傾聽。當我們能夠打破照顧者與被照顧者為健康／失能的對立關係時，才能返回居家現場的真實所在。本研究建議以存在性的照護，而非醫療道德，作為走入居家臨床現場的基本邏輯，開闢契合在地的多樣思考和介入策略。

In Taiwan, the implementation of the long-term care plan has underscored home care as a pivotal local strategy aimed at providing a supportive environment where care recipients can maintain their dignity and autonomy. This plan also seeks to alleviate the burden on family caregivers through enhanced resource accessibility. However, caregiving transcends individual stress adaptation; it profoundly influences how the "we" within the home encounter the existential situation of vulnerability, reconfiguring the meaning of life and interactions with others. This study aims to explore the lived experiences and intersubjective relations between family caregivers and care recipients in home care, to understand the existential phenomenon of living with illness through care, and to deepen the reflection on the meanings of "home" and "care." Adopting a qualitative research approach grounded in phenomenological psychology, semi-structured in-depth interviews supplemented by field notes were conducted with four families, comprising six family caregivers and three care recipients, over a year, totaling 29 interviews. Data analysis focused on "subjectivity in care experiences" and "interactions in family relationships," employing both Moustakas’ (1994) and van Manen’s (2014) phenomenological analysis methods to present the lived experiences and intersubjective relations of family caregivers and care recipients in the home care situation. The study findings reveal that the lived experiences of different family caregivers commonly manifest the following structural themes: (1) the inversion of "vulnerability" as the embodiment of care; (2) the fluctuating nature of "home" amidst the ordinary world; (3) the undesired arrival of "future" time. The lived experiences of different care recipients, on the other hand, commonly reveal the following structural themes: (1) the affirmation of the past as "once was I"; (2) the opposition from "I can" to "can"; (3) the dissolution of the ordinary world towards the ethics of "life." Regarding the intersubjective relations between family caregivers and care recipients, it was found that: (1) the paradox of care and the relationality of the family; (2) convergence at home and asymmetric lived times; (3) the distance of co-existence and the possibility of "extra-ordinary" dwelling. Hence, the "home" as an ethical indeterminate field opening to extra-ordinary space within the ordinary world should not be intervened with functional needs but rather requires listening to the lifeworld. Only when we break the dichotomy of caregiver and care recipient as healthy/disabled can we return to the authenticity of home care. This study suggests adopting existential care, rather than medical care, as the fundamental logic for entering the situation of home care, thereby creating diverse intervention strategies that fit the local context.