居家安寧照顧中的家：家屬照顧者照顧處境經驗探究

本研究探究居家安寧對家屬照顧者的意義、照顧者與他人的關係如何開展及家的特殊性之照顧處境經驗。研究採用半結構式訪談，以東部某醫療院居家安寧療護服務區域為研究田野，蒐集六位家屬照顧者訪談資料，每位受訪者接受二次訪談，受訪者性別為二女四男，年齡介於45至75歲之間。透過現象學心理學方法進行資料分析，以瞭解家屬照顧者置身所在。研究結果提出三個面向處境經驗，包含居家安寧照顧中的居家經驗、居家安寧照顧中的倫理關係、居家安寧照顧中的家屋意義，進而探討醫療場域與居家安寧共同性與殊異性。研究發現居家安寧的家庭體驗在疾病的影響下，照顧者可能依循醫療的規範行事，亦可能投入當下「無目的」居家時間，在與病者彼此陪伴下感到安適；而家庭關聯的家屬、鄰里、看護等關係中的關懷，帶出柔適照顧的可能。同時，家屋的歷史痕跡、情感連結和歸返之地的意涵，使居家安寧場域的病者與照顧者得以開展倫理療遇關係。

The home-based palliative care modus vivendi aims to facilitate the patients and their families to feel“at home.”Unlike the perspective of the“power domination in the medical regime,”home palliative care focuses on the ethical relationship, besides the bio-psycho-social model, in the aspects of care. The caregiver and the patient living at home are involved in the state of“situatedness”experience, which can be described as a particular life involvement wherein one is situated such that things appear in certain manners. It meant the holistic situation of the self and the other. This study aims to understand the caring situatedness of family members as caregivers in home palliative care and tries to disclose the sense of home-likeness through the caring relationship. It explores the situated experiences of family caregivers in home-based hospice, specifically focusing on (1) the meaning of home-based hospice for caregivers, (2) the relationships caregivers have with the patient, other family members, and informal caregivers, and (3) the differences between home care and hospital care.
We applied participatory observation and in-depth interviews to collect data. Six family caregivers (four males and two females, aged 45 to 75) who had agreed to participate and were interviewed twice were recruited from a home-based palliative care service in eastern Taiwan. Interviews were recorded, transcribed, and analyzed using a phenomenological psychology method. It involved six steps: data collection, empathic immersion, meaning units, constituent themes, situated structure, and general structure. The results revealed three themes: (1) Caregivers’experiences of living at home. (2) The ethical relationships caregivers have with others. (3) The meaning of home in caring for patients. We found that compared with other medical models, medical assistance is still crucial in the field of home palliative care. However, the medical gaze generated standardized and absolute normative boundaries as in the medical field. In the home environment, the boundaries are relatively fuzzy. This fuzziness does not refer to disorderly chaos but rather to logic that is different from the medical bureaucratic field. The fuzzy boundary of the relationship in home palliative care allows for ethical acts crossing the normative role provisions. Caregivers and their families engage in reciprocal care, and caregivers may even provide emotional support to other family members. In contrast, patients are often treated as objects in the medical field, and the doctor-patient relationship is strictly professional. The fuzziness of the boundary in the home environment of palliative care provides the possibility of deep emotional development and flexible care. The home triggers memories of family members’interactions, prompts exploration of self-experience, and roots people in the world. In the unique context of home-based palliative care, the home domain’s features open up the possibility of healing, not only for the patient but also for the caregiver.
The healing in the field of“home”is unfolded on multiple levels. This study explores the experiences of home-based palliative caregivers, where the care crosses ethical norms. Caregivers are pulled between ethical norms and experiences of crossing ethical boundaries. During the home care process, the caregivers have experienced conflicts between ethical norms and family member relationships. Some caregivers follow the“should be”of the ethical norms, and some choose to go beyond the ethical norms and demonstrate the ethical act to denote the care-as-worry meaning. Care-as-worry cannot be legislated, managed, or controlled. Only by remaining sensitive to our unique responsibility can we insert into our ethical practices the lifeblood of caring, in all its various modalities, that our vocations require. The unique domain of home, including the neighborhood and cultural characteristics, collectively support the action of home-based palliative care. The non-blood relational ethical experience can be carried out in this care process. Caregivers, as well as the neighborhood, may establish a companionship that exists in the local phenomenon. The findings highlight the importance of companionship from family members, neighbors, and other informal caregivers in supporting caregivers and patients. In home-based palliative care, the whole family and medical personnel collectively face the unknown situation of illness and devote themselves to care. The interconnectedness of people in the home domain prompts the possibility of ethical and effective healing for both patients and caregivers. Ethical caring is the cornerstone of relational understanding towards human subjectivity rather than medical positivism. In this way, it echoed the humanistic clinical approach to ethical relationships, not first to deal with the cause of the“suffering of others,”but face-to-face encountering the responsibility of“suffering for others.”