Experiences and Support Needs of Parents of Children with Strabismus: A Family Systems Theory Perspective

斜视儿童父母的经历和支持需求:基于家庭系统理论的视角

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Abstract

OBJECTIVE: This study aimed to explore the experiences and needs of parents of children with strabismus through the lens of family systems theory, to guide the development of targeted interventions. METHODS: A total of 12 parents of children, aged 4-11 years, with strabismus were selected through purposive sampling between January and February 2025. There were 2 cases with esotropia and 10 with exotropia. Data were collected through semi-structured interviews, utilizing a descriptive phenomenological approach. The Colaizzi phenomenological seven-step analysis method was employed to systematically summarize, analyze, and refine themes from the data. RESULTS: Four main themes and twelve sub-themes were identified in the analysis. The primary themes included: (1) emotional distress, which included anxiety, worry, confusion, guilt, embarrassment, and helplessness; (2) adjustment and coping strategies encompassing division of labor, cooperation, and active responses; (3) multiple challenges encountered, such as parent-child conflict, alienation, familial friction, divergence among family members, inconsistent information, and financial burden; and (4) multifaceted needs, including the need for disease-related knowledge, access to medical resources, and emotional support. CONCLUSION: Parents of children with strabismus experience significant emotional distress and encounter various challenges, while also developing resilience and adopting coping strategies. Despite these efforts, a lack of adequate knowledge, medical resources, and emotional support persists. It is essential for healthcare professionals to address the emotional well-being of these parents, recognize their positive experiences, and promote proactive coping strategies. Additionally, collaboration among healthcare providers, families and community resources is crucial to delivering comprehensive support and enhancing the overall quality of care.

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