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期待之变:精神分裂症患者家庭的压力考察

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精神分裂症患者家庭的压力研究多集中于照顾负担主导的静态压力分析,但该疾病的长期性与复杂性带来了家庭压力的不断变化,因此,基于动态过程视角研究精神分裂症患者家庭的压力十分必要.本研究以14户精神分裂症患者家庭为例,基于精神分裂症的四阶段模型,开展深度访谈和参与式观察,分析该类家庭的压力阶段性表征与生成机制.研究结果表明,精神分裂症患者家庭的压力主要表现为病源性压力和角色性压力,在不同康复阶段,这两类压力分别或共同处于显性状态,从而影响家庭的压力体验.进一步分析发现,社会文化所形塑的家庭生活期待与疾病所影响的家庭现实情景之间的张力是家庭压力生成机制的关键.家庭有两个核心期待贯穿康复历程始终:摆脱疾病困扰的健康期待和实现"成人"的角色期待.家庭在现实情境中遭遇的期待之变构成了家庭压力的动态变迁.由此,社会工作者在开展精神分裂症患者家庭服务时,可通过家庭期待调整和情景行动增能来协助家庭应对压力,从而激发此类家庭的主体性.
The Change of Expectations:A Study on Family Stress in the Process of Recovery from Schizophrenia
As the primary caregiver and the pivotal agency to the social welfare system,families play an essential role in facilitating personal recovery from schizophrenia. However,inadequate comprehension of stress experienced by families during the process of recovery often leads to unwarranted blame being placed on them. Consequently,the institutional and structural factors influencing recovery remain obscured amidst these unfounded accusations. This study aims to explore family stress in the process of recovery from schizophrenia through a qualitative method. The utilization of a dynamic-process based perspective distinguishes this study from traditional stress research in schizophrenic families,which predominately focuses on the static stress analysis conceptualized with caregiver burdens. The application of the four-stage model of schizophrenia to 14 families with affected members revealed two distinct types of stress experienced by these families. One type is disease-related stress,which encompasses financial difficulties,time and energy constraints,stigma,and social interaction challenges arising from the treatment of the illness. The other type is role-related stress,which arises from difficulties fulfilling social roles and maintaining family stability. In different stages of the recovery,the two types of stress may be separately or together exhibited explicitly,thereby influencing the experience of family stress. In the initial stage of overwhelmed by the disability,families experience heightened explicit role-related family stress,often associated with early signs of illness onset as these occurrences are unexpected by families. In the second stage of struggling with disability,families experience significant disease-related stress due to the burdens of time and energy investment,financial strain,and conflicts within the family. Meanwhile,families also experience implicit role stress,manifesting the difficulties in maintaining previous roles. In the third stage of living with the disability,the stress associated with role expectations takes on a new trajectory. Families expect the patient to maintain previous social roles and develop new age-appropriate social roles. Unfortunately,the intertwining of the two types of stress compels families to re-calibrate their expectations regarding both health and social aspects. Families come to acknowledge that their previous aspirations are unattainable,and adjusting these expectations can serve as a means to alleviate their stress. In the last stage of living beyond the disability,maintaining the status quo emerges as the primary objective for families,while the impact of illness on familial dynamics diminishes. Families gradually master the skills to control the disease,and their stress of maintaining their role becomes explicit.The generation mechanism of stress in these families is intricately intertwined with their expectations and the realities they face. Families encounter the disease with preconceived expectations shaped by social culture. After the occurrence of schizophrenia,when individuals find it challenging to meet these expectations in real-life situations no matter how hard they try,they will experience stress. This whole set of pre-existing cognition and expectations stems from society's shaping of families. Thus,family expectations manifest a whole set of social and cultural institutions internalized within the families. Regardless of whether families explicitly express their expectations,they implicitly adhere to the social and cultural norms to promote family development. The reality of a family encompasses both actual events that occur and the actions taken by the family to cope with these events. The event of encountering schizophrenia is a reality for the family. Simultaneously,the coping actions undertaken by the family based on their abilities and resources further construct their current reality. Researchers have found that families with a member diagnosed schizophrenia have two core expectations. One is the hope to overcome the challenges posed by the illness and achieve a state of well-being,while the other is to fulfill their role as"adults". The reality for these families is twofold. On one hand,they constantly experience recurrent episodes of illness and face social exclusion when trying to fit into age-appropriate societal roles;on the other hand,they continuously strive to meet their inherent expectations for health and adult roles using available social resources and coping mechanisms. As a result,families undergo both disease-related stress and role-related pressure throughout the recovery process. Family expectations more effectively mediate the relationship between individuals and society. The crucial role of expectations in generating familial stress lies in their abrupt shift when confronted with real-life scenarios. By constructing a mechanism for family stress generation based on the tension between expectations and reality,this approach addresses previous shortcomings regarding insufficient consideration of social contexts within stress-generation hypotheses while surpassing limitations associated with internal interpretations of how stress forms. Consequently,families experience both stress related to the disease and stress associated with their roles throughout the recovery process. Compared to the three factors of stress generation-stressors,coping resources,and cognitive appraisal-family expectations effectively bridge the gap between individuals and society.In summary,when confronted with reality,the transformation of family expectations constitutes the alteration of family stress. Therefore,as mentioned above,social work can effectively support families in managing the stress during mental disorder rehabilitation through two distinct approaches:adjusting family expectations to reflect the social shaping of family life and empowering situational actions to extend social connectedness and enhance family agency. Re-framing community-based rehabilitation services for mental disorders from a family stress perspective allows social workers to transcend the narrow focus on illness. By incorporating family expectations and realistic scenarios,this approach establishes a mechanism for generating family stress,providing social workers with a versatile strategy for adaptive service interventions.

师艺萌、高万红

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云南大学民族学与社会学学院

云南大学民族学与社会学学院社会工作系 昆明 650091

家庭压力 精神分裂 社区康复 社会工作

国家社会科学基金一般项目

19BSH174

2024

社会工作
江西省民政厅

社会工作

CHSSCD
影响因子:0.643
ISSN:1672-4828
年,卷(期):2024.(2)
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