思覺失調症患者家屬陪伴患者回歸社區其生命經驗之敘事研究

Narrative Exploration of Family Members’Experiences in Supporting Schizophrenia Patients’Reintegration into the Community

思覺失調症患者其家屬陪伴患者復原過程中，因疾病特性經歷許多考驗並同時發展出其因應方式。研究者以家屬主觀經驗出發，理解思覺失調症其家屬陪伴患者經歷發病、住院，到回歸社區其歷程感受，以及如何因應歷程中之困境。本研究以質性研究進行，邀請四位年齡介於33至73歲間、陪伴患病家人找到工作，且同住之家屬，參與研究。研究者以半結構深度訪談蒐集資料，並以敘事分析「整體—內容」模式作為資料分析方法。研究結果顯示思覺失調症其家屬陪病經驗之特色為：一、生命的衝擊促使陪伴者承接家庭責任的開啟；二、事實主導思考轉向內在動力陪伴，卡住的生命得以流動轉向。再者，思覺失調症之家屬在陪病經驗中的困境因應與調適包含：一、從初期情感上獨自承受與壓抑，到中後期主動找尋資源與出口；二、從被動遵循醫囑的事實導向，到主動且更彈性地面對陪病過程。最終，研究者依據研究歷程與結果討論，提出本研究之限制與建議。

According to the latest statistics from the Ministry of Health and Welfare (Taiwan) (2021), the majority of individuals with mental disorders continue to live with their family members, making the family a primary pillar of support for these individuals. Reintegrating individuals with schizophrenia into the community remains a challenge. According to Fitryasari et al. (2018), family members of individuals with schizophrenia face difficulties associated with the disease itself and struggle with time constraints, financial burden, societal pressures, and the emotional and physical toll from taking care of their loved one with schizophrenia. Traditionally, researchers have considered such caregiving to be a negative experience for the caregiver. However, more recent studies have challenged this assumption. Caregivers have been reported to develop unique coping mechanisms throughout their caregiving experience to meet the requirements of caregiving, resulting in positive experiences and even the discovery of new meaning in life. This adaptive process and its acknowledgment serve to empower caregivers (Gater et al., 2014; Yang & Tung, 2015). This study was conducted to explore the perspectives and experiences of family members of individuals with schizophrenia to determine how they responded to hospitalization, community reintegration, and the disease itself, throughout different stages of onset, as well as their feelings, thoughts, and responses regarding various challenges in this journey. This study aimed to provide valuable insights for caregivers who may have feelings of frustration associated with caregiving and to determine whether narrative sharing can aid in the recognition of underappreciated yet powerful values among family members.
In this qualitative study, four family members aged 33–73 living with employed individuals with schizophrenia were included. Women outnumbered men (ratio: 3:1). All family members were engaged in home-based care and regular medical checkups, and they all had previous work experiences, with two of them currently employed. A formal interview protocol was formulated to obtain a comprehensive understanding of two primary dimensions: (1) the caregiving experiences of family members across different stages of schizophrenia and (2) the difficulties faced by these family members and their coping mechanisms. A narrative analysis approach involving a macrostructure, microcontent model, supplemented by Labov’s narrative structure analysis, was used for data analysis. This analytical approach retained the sequential order of the participants’narrative units, enhancing the integrity of narrative flow (Tsai et al., 2014).
Participant experiences were used as a case study to illustrate the individual’s narrative life story of living with employed individuals with schizophrenia. A cross-case analysis revealed several stages involved in the process of living with an individual with schizophrenia. The first stage involves nervousness and response to the disease. At this stage, the caregiver experiences the symptoms of the disease alone, often relying on religion for spiritual support, and they attempt to address and modify the unusual behaviors of their family member with schizophrenia. The second stage involves the caregiver using their rationality to deal with the situation. At this stage, the caregiver employs rational thinking in their decision-making process while seeking professional medical interventions to alleviate their emotional distress. The third stage involves active learning and information seeking. At this stage, the caregiver follows a proactive approach to acquiring knowledge regarding the symptoms of schizophrenia, reduce self-repression, gain support through social interactions, and actively seek social resources; these are done to induce changes in the internal and external environment, to monitor the patient’s medical condition, to overcome challenges and move forward, to adopt appropriate standards of dealing life events, and to help patients learn how to be responsible. Generally, shifts in personal perspectives reveal new meanings. Therefore, accompanying individuals with schizophrenia throughout their journey enables caregivers to continually learn and adapt .
Distinct patterns were observed in the caregiving experiences of family members supporting individuals with schizophrenia during their reintegration into the community. With schizophrenia serving as a catalyst for increased responsibility, the caregiving journey began with family members experiencing a major influence on their lives and emotional states, triggered by the initial shock of the disease. This period was marked by high emotional tension, with feelings of helplessness, hopelessness, guilt, and anxiety (Liu & Lin, 2017). Shifting from a fact-oriented perspective to an inner motivational drive enabled caregivers to redirect their life trajectories. A deeper understanding of schizophrenia can enable family members to adapt with greater flexibility to their caregiving roles (Amagai et al., 2016). Throughout their caregiving journey, family members tended to develop the following adaptation strategies and coping mechanisms. The first mechanism was to transition from isolation to seeking support. Initially, caregivers may choose to endure and repress their emotions in isolation. However, over time, they started to proactively seek resources and support. Social support is linked to positive outcomes among caregivers of individuals with schizophrenia (Balaban et al., 2017; Morton et al., 2015). The second mechanism was to adopt an active and flexible approach to caregiving. During the caregiving process, caregivers tended to shift from passive adherence to medical advice to active and flexible engagement. In this process, acceptance served as a key cognitive coping strategy, which involved accepting the inherent unfairness of the caregiving scenario and recognizing the impossibility of returning to a previous state (Azman et al., 2017; Zegwaard et al., 2013).
This study has the following implications for research and practice. When a family member has schizophrenia, providing a stable medical intervention and gaining a comprehensive understanding of schizophrenia during the early stages of the disease are essential. Encouraging family members to focus on improving their patient’s conditions may also alleviate feelings of self-blame and guilt associated with hospitalizing their loved ones. In addition, actively acquiring knowledge regarding schizophrenia may provide family members with a greater sense of control throughout the caregiving process and help them gradually accept the disease and modify their negative perceptions of it. Spirituality provides family members with a sense of solace. It enables them to express and mitigate the negative emotions experienced during the caregiving process. Establishing resource-based connections highlights the proactive role that family members must play in seeking and establishing social support networks. These networks not only provide immediate support but also potentially serve as resources for individuals with schizophrenia to engage with others and secure employment upon their reintegration into the community.
In terms of research limitations, the recruitment criteria for the participants presented several challenges. Given that relatively few employed individuals have schizophrenia, and considering the willingness of their family members to overcome stigma and share their experiences, this study encountered limitations in terms of the number of participants. These limitations were further compounded by the age and kinship differences between the participants, in addition to the presence of only one male participant. Consequently, the research data may not have been as rich or diverse as it ought to have been, potentially hindering a comprehensive understanding of the process through which family members support individuals with schizophrenia during their reintegration into the community. Future research may benefit from specifying the relationship between patients and their family members and should examine the severity of the disease while considering variables such as age, gender, and disease stage. This approach may yield a more holistic view of the experiences of family members assisting in the reintegration of individuals with schizophrenia into the community.