Vukkadala Neelaysh, Giridhar Sonya B P, Okumura Megumi J, Chan Dylan K
School of Medicine, University of California, San Francisco, CA, USA.
Department of Otolaryngology-Head and Neck Surgery, Stanford University, Stanford, CA, USA.
J Pediatr Rehabil Med. 2019;12(1):11-20. doi: 10.3233/PRM-170528.
To identify key determinants of the quality of life of caregivers of infants and toddlers (< 3 years) who are deaf/hard-of-hearing (DHH).
We conducted focus groups with providers for children who are DHH as well as interviews with hearing parents of infants and toddlers who are DHH. A multi-step qualitative analysis on interview data using grounded theory was performed, and an iterative analysis to investigate codes to characterize specific topics in caring for deaf infants and toddlers was conducted.
Four focus groups (n= 33) and six semi-structured interviews (n= 7) were conducted. The major theoretical code found was the "Search for Equilibrium" in parenting which arose from the three main categories of the caregiver role/experience: (1) being a parent - modifying parenting style as a result of their child's hearing loss, (2) being a mediator - modulating and filtering interactions between their child and their child's environment, and (3) being a navigator - managing the logistics of the medical and educational system.
For hearing parents, the diagnosis of hearing loss requires changes in multiple domains of parenting. Support in each of these areas is critical for parents to restore a sense of equilibrium that is central to their quality of life. This framework provides a way to categorize parent experiences and may act as a template for focused interventions in the three identified domains.
确定患有失聪/听力障碍（DHH）的婴幼儿（<3岁）照料者生活质量的关键决定因素。
我们与为患有DHH的儿童提供服务的人员进行了焦点小组讨论，并对患有DHH的婴幼儿的听力正常的父母进行了访谈。使用扎根理论对访谈数据进行了多步骤定性分析，并进行了迭代分析，以研究用于描述照料失聪婴幼儿特定主题的编码。
进行了四个焦点小组讨论（n = 33）和六次半结构化访谈（n = 7）。发现的主要理论编码是育儿中的“寻求平衡”，它源于照料者角色/经历的三个主要类别：（1）作为父母——因孩子听力损失而改变育儿方式；（2）作为调解人——调节和过滤孩子与其环境之间的互动；（3）作为导航者——管理医疗和教育系统的后勤工作。
对于听力正常的父母而言，听力损失的诊断需要在育儿的多个领域进行改变。在这些领域中的每一个领域提供支持对于父母恢复对其生活质量至关重要的平衡感至关重要。该框架提供了一种对父母经历进行分类的方法，并可作为在三个已确定领域进行有针对性干预的模板。
