Department of Social Sciences and Humanities, Poznan University of Medical Sciences, Poznań, Poland.
Department of Organization and Management in Health Care, Poznan University of Medical Sciences, Poznań, Poland.
Epilepsy Behav. 2023 May;142:109193. doi: 10.1016/j.yebeh.2023.109193. Epub 2023 Apr 5.
Since the psychosocial implications of Dravet syndrome (DS) are much more serious and far-reaching than in other types of epilepsy, caring for a DS child seriously affects the entire family. This study describes the emotional experiences of family caregivers of DS children and evaluates the way caregiving affects their perceived quality of life.
An anonymous, self-administered online questionnaire was sent to family caregivers of DS children through the online patient advocacy organization the Association for People with Severe Refractory Epilepsy DRAVET.PL. It focussed on the psychosocial impact of caregiving for DS children, the perceived burden of caregiving, caregivers' emotional experiences and feelings related to caregiving, and the impact of DS on the perceived quality of life.
Caregivers stressed that caring for a DS child is associated with a significant psychosocial and emotional burden that affects the entire family. Although most caregivers reported that it was the child's health problems and behavioral and psychological disorders that were the most challenging aspects of caregiving, they were also burdened by the lack of emotional support. As caregivers were profoundly engaged in caregiving, they experienced a variety of distressing emotions, including feelings of helplessness, anxiety and fear, anticipated grief, depression, and impulsivity. Many caregivers also reported that their children's disease disrupted their relationships with their spouses, family, and healthy children. As caregivers reported experiencing role overload, physical fatigue, and mental exhaustion, they stressed the extent to which caregiving for DS children impaired their quality of life, their social and professional life, and was a source of financial burden.
As this study identified specific burden domains affecting DS caregivers' well-being family carers often need special attention, support, and help. To alleviate the humanistic burden of DS carers a bio-psychosocial approach focusing on physical, mental, and psychosocial interventions should include both DS children and their caregivers.
由于德拉维特综合征（DS）的心理社会影响比其他类型的癫痫更为严重和深远，因此照顾 DS 患儿会严重影响整个家庭。本研究描述了 DS 患儿家庭照顾者的情感体验，并评估了照顾对他们感知生活质量的影响。
通过在线患者倡导组织“严重难治性癫痫协会 DRAVET.PL”，向 DS 患儿的家庭照顾者发送了一份匿名的、自我管理的在线问卷。它主要关注照顾 DS 患儿的心理社会影响、照顾负担、照顾者的情感体验和与照顾相关的感受，以及 DS 对感知生活质量的影响。
照顾者强调，照顾 DS 患儿会带来重大的心理社会和情感负担，影响整个家庭。尽管大多数照顾者报告说，儿童的健康问题和行为及心理障碍是照顾的最具挑战性方面，但他们也因缺乏情感支持而感到负担沉重。由于照顾者全身心地投入到照顾中，他们经历了各种痛苦的情绪，包括无助感、焦虑和恐惧、预期悲伤、抑郁和冲动。许多照顾者还报告说，他们孩子的疾病破坏了他们与配偶、家人和健康孩子的关系。由于照顾者报告经历了角色过载、身体疲劳和精神疲惫，他们强调了照顾 DS 患儿对他们的生活质量、社会和职业生活的影响，以及对他们经济负担的影响。
正如本研究确定的影响 DS 照顾者幸福感的特定负担领域，家庭照顾者通常需要特别关注、支持和帮助。为了减轻 DS 照顾者的人文负担，一种注重身体、心理和心理社会干预的生物-心理-社会方法应同时包括 DS 儿童及其照顾者。
