父母在先天性心脏病方面所经历的压力不同：儿科重症监护建议。
Mothers and Fathers Experience Stress of Congenital Heart Disease Differently: Recommendations for Pediatric Critical Care.
机构信息
Nemours Cardiac Center, Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE.
Division of Behavioral Health, Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE.
出版信息
Pediatr Crit Care Med. 2018 Jul;19(7):626-634. doi: 10.1097/PCC.0000000000001528.
OBJECTIVE
To inform pediatric critical care practice by examining how mothers and fathers experience the stress of caring for a young child with congenital heart disease and use hospital and community supports.
DESIGN
Qualitative study of mothers and fathers of young children with congenital heart disease.
SETTING
Tertiary care pediatric hospital in the Mid-Atlantic region of the United States.
SUBJECTS
Thirty-four parents (20 mothers, 14 fathers) from diverse backgrounds whose child previously underwent cardiac surgery during infancy.
INTERVENTIONS
Subjects participated in semi-structured, individual interviews about their experiences and psychosocial needs at the time of congenital heart disease diagnosis, surgical admission, and discharge to home after surgery. Qualitative interview data were coded, and consistent themes related to emotional states, stressors, and supports were identified.
MEASUREMENTS AND MAIN RESULTS
Fathers experience and respond to the stressors and demands of congenital heart disease in unique ways. Fathers often described stress from not being able to protect their child from congenital heart disease and the associated surgeries/pain and from difficulties balancing employment with support for their partner and care of their congenital heart disease child in the hospital. Fathers were more likely than mothers to discuss support from the work environment (coworkers/managers, flexible scheduling, helpful distraction) and were less likely to describe the use of hospital-based resources or congenital heart disease peer-to-peer supports.
CONCLUSIONS
This study highlights the importance of understanding the paternal experience and tailoring interventions to the unique needs of both mothers and fathers. Opportunities for critical care practice change to promote the mental health of mothers and fathers following a diagnosis of congenital heart disease are discussed.
目的
通过研究母亲和父亲如何体验照顾患有先天性心脏病的幼儿的压力以及如何利用医院和社区支持，为儿科重症监护实践提供信息。
设计
对患有先天性心脏病的幼儿的母亲和父亲进行定性研究。
地点
美国中大西洋地区的一家三级护理儿科医院。
研究对象
34 名父母（20 名母亲，14 名父亲），来自不同背景，其孩子以前在婴儿期接受过心脏手术。
干预措施
受试者参加了关于他们在先天性心脏病诊断、手术入院和手术后出院回家时的经历和社会心理需求的半结构化、个人访谈。对定性访谈数据进行了编码，并确定了与情绪状态、压力源和支持相关的一致主题。
测量和主要结果
父亲以独特的方式体验和应对先天性心脏病的压力源和需求。父亲经常描述由于无法保护孩子免受先天性心脏病和相关手术/疼痛的影响，以及在平衡工作与支持伴侣和在医院照顾先天性心脏病孩子方面的困难而感到的压力。与母亲相比，父亲更有可能讨论工作环境（同事/经理、灵活的工作安排、有益的分心）提供的支持，而不太可能描述利用医院资源或先天性心脏病同伴支持的情况。
结论
本研究强调了理解父亲体验的重要性，并根据母亲和父亲的独特需求调整干预措施。讨论了为先天性心脏病诊断后母亲和父亲的心理健康促进而改变重症监护实践的机会。
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