Park Jisun, Bang Kyung-Sook
Head Nurse, Seoul National University Hospital, Seoul, Korea.
Professor, College of Nursing, Research Institute of Nursing Science, Seoul National University, Seoul, Korea.
Child Health Nurs Res. 2021 Jan;27(1):75-85. doi: 10.4094/chnr.2021.27.1.75. Epub 2021 Jan 31.
The symptoms and impairments caused by cerebral palsy usually require long-term treatment, resulting in a substantial burden on the family of affected children. This study explored the experiences of fathers with prematurely-born children with cerebral palsy, with a focus on how such experiences influenced their families.
A qualitative case study method was used. Nine subjects were recruited from April 2018 to June 2019 at one hospital, and each was interviewed three times by a neonatal nurse.
Five core experiences of fathers were identified: regret for an insufficient initial response, confronting my child born as a premature baby, the position of being a dad who can't do anything, the process of treatment like a tunnel with no exit, and a father's getting meaning in life through children. These stories covered an individual's timeline and family interactions.
Our findings suggest that fathers of prematurely-born children tend to suppress their emotions; therefore, a novel intervention program to encourage fathers' emotional expression and to support healthier interactions with their families is needed. Moreover, our findings could contribute basic information for the construction of a community-based support system to aid families, including prematurely-born children and other persons with impairments.
脑瘫所引发的症状和损伤通常需要长期治疗，给患病儿童的家庭带来了沉重负担。本研究探讨了早产脑瘫患儿父亲的经历，重点关注这些经历如何影响他们的家庭。
采用定性案例研究方法。2018年4月至2019年6月期间，在一家医院招募了9名受试者，由一名新生儿护士对每人进行了三次访谈。
确定了父亲的五种核心经历：对最初反应不足的懊悔、面对早产的孩子、作为无能为力的父亲的处境、如无出口隧道般的治疗过程，以及父亲通过孩子获得生活意义。这些故事涵盖了个人的时间线和家庭互动。
我们的研究结果表明，早产孩子的父亲往往会压抑自己的情绪；因此，需要一个新的干预项目来鼓励父亲表达情绪，并支持他们与家人进行更健康的互动。此外，我们的研究结果可为构建社区支持系统提供基础信息，以帮助包括早产儿童和其他残障人士在内的家庭。
