Chando Shingisai, Young Christian, Craig Jonathan C, Gunasekera Hasantha, Tong Allison
Kids Research Institute, The Children's Hospital at Westmead, Westmead, Sydney, NSW, 2145, Australia.
Sydney School of Public Health, The University of Sydney, Sydney, NSW, 2006, Australia.
Eur J Pediatr. 2016 Oct;175(10):1295-305. doi: 10.1007/s00431-016-2779-6. Epub 2016 Sep 10.
This study aims to describe parental experiences and perspectives of caring for a child with otitis media. We conducted a systematic review of qualitative studies on parental perspectives on caring for a child with otitis media. We searched electronic databases to July 2015. Seventeen studies involving 284 participants from six countries were included. We identified seven themes: diminishing competency (guilt over failure to identify symptoms, helpless and despairing, fear of complications, disempowered and dismissed); disrupting life schedules (disturbing sleep, interfering with work, burden on family); social isolation (stigma and judgement, sick consciousness); threatening normal development (delaying growth milestones, impairing interpersonal skills, impeding education); taking ownership (recognising symptoms, diagnostic closure, working the system, protecting against physical trauma, contingency planning); valuing support (needing respite, depending on community, clinician validation); and cherishing health (relief with treatment success, inspiring resilience).
The additional medical responsibilities and anxieties of parents caring for a child with otitis media, often discounted by clinicians, can be disempowering and disruptive. Chronicity can raise doubt about treatment efficacy and parental competency, and fears regarding their child's development. Care that fosters parental confidence and addresses their concerns about the child's development may improve treatment outcomes for children with otitis media.
• Otitis media is a leading cause of conductive hearing loss in children. • Parental perception of the treatment burden of otitis media can potentially affect their confidence and ability to care for their child. What is New: • We identified five themes to reflect parental perspectives: diminishing competency, disrupting life schedules, social isolation, threatening normal development, taking ownership, valuing support, and cherishing health. • Parents may perceive caring for a child with otitis media as disempowering and disruptive and with reoccurrence doubt treatment efficacy and their parental competency and develop fears regarding their child's development.
本研究旨在描述父母照顾中耳炎患儿的经历和观点。我们对关于父母照顾中耳炎患儿观点的定性研究进行了系统综述。我们检索了截至2015年7月的电子数据库。纳入了17项研究，涉及来自6个国家的284名参与者。我们确定了7个主题：能力下降（因未能识别症状而内疚、无助和绝望、对并发症的恐惧、感到无力和被忽视）；打乱生活日程（干扰睡眠、影响工作、给家庭带来负担）；社会孤立（耻辱感和评判、患病意识）；威胁正常发育（延迟生长里程碑、损害人际交往能力、妨碍教育）；承担责任（识别症状、诊断明确、熟悉医疗系统、防止身体创伤、制定应急计划）；重视支持（需要喘息机会、依赖社区、临床医生认可）；珍视健康（治疗成功带来的宽慰、激发恢复力）。
照顾中耳炎患儿的父母所承担的额外医疗责任和焦虑，往往被临床医生忽视，这可能会削弱他们的能力并造成干扰。疾病的慢性化会引发对治疗效果和父母能力的怀疑，以及对孩子发育的担忧。能够增强父母信心并解决他们对孩子发育担忧的护理，可能会改善中耳炎患儿的治疗效果。
• 中耳炎是儿童传导性听力损失的主要原因。• 父母对中耳炎治疗负担的认知可能会影响他们照顾孩子的信心和能力。新发现：• 我们确定了五个主题来反映父母的观点：能力下降、打乱生活日程、社会孤立、威胁正常发育、承担责任、重视支持和珍视健康。• 父母可能会觉得照顾中耳炎患儿会让他们感到无力和受到干扰，并且随着病情复发，会怀疑治疗效果和自己为人父母的能力，并对孩子的发育产生担忧。
