Bowden Michael R, Stormon Michael, Hardikar Winita, Ee Looi C, Krishnan Usha, Carmody Diana, Jermyn Vicki, Lee Mee-Mee, O'Loughlin Edward V, Sawyer Janine, Beyerle Kathe, Lemberg Daniel A, Day Andrew S, Paul Campbell, Hazell Philip
*Departments of Psychological Medicine †Gastroenterology ‡Department of Gastroenterology and Clinical Nutrition §Queensland Paediatric Gastroenterology, Hepatology, and Nutrition Service, Royal Children's Hospital, Melbourne ¶Social Work, Children's Hospital, Westmead, Sydney ||Department of Gastroenterology, Sydney Children's Hospital, Randwick, Australia #Department of Paediatrics, University of Otago, Christchurch, New Zealand **Department of Psychiatry, University of Melbourne, Melbourne ††Discipline of Psychiatry, Sydney Medical School, Sydney, Australia.
J Pediatr Gastroenterol Nutr. 2015 Jun;60(6):717-22. doi: 10.1097/MPG.0000000000000742.
Parenting stress, problems in family functioning, and lack of fathers' engagement in treatment are associated with poor quality of life in children with chronic illnesses. The aim of the present study was to examine these characteristics in families of infants with serious liver disease in Australia, to inform the provision of mental health care for these families.
From September 2009 to May 2013, 42 parents of infants recently diagnosed as having serious liver disease (defined as liver disease that may require transplantation in the future) completed questionnaires about family function, impact of the infant's illness on the family, parent stress symptoms, and fathers' engagement in the care of the child. Participants were recruited from 4 metropolitan children's hospitals in Australia.
Parents reported psychological symptoms at similar rates to normative populations. Their reports of family functioning were significantly below mean scores in previously published populations with a medically ill family member (population mean 1.89; mothers mean 1.59; fathers mean 1.61, P < 0.001). Disruption to family roles was significantly correlated with psychological symptoms for mothers (r = 0.48, P < 0.01) and fathers (r = 0.31, P < 0.05). Greater helpfulness of fathers was correlated with lower depression in mothers (r = -0.35, P < 0.05), and fathers' anxiety was correlated with their increased engagement (r = 0.40, P < 0.01).
When parents report the presence of psychological symptoms, symptoms are likely to be present in both parents and are associated with difficulties adjusting to disrupted family roles. Father engagement may be protective of mothers' mental health.
育儿压力、家庭功能问题以及父亲参与治疗不足与慢性病患儿的生活质量低下有关。本研究旨在调查澳大利亚患有严重肝病婴儿家庭的这些特征，为这些家庭提供心理健康护理提供依据。
2009年9月至2013年5月，42名最近被诊断患有严重肝病（定义为未来可能需要进行肝移植的肝病）婴儿的父母完成了关于家庭功能、婴儿疾病对家庭的影响、父母压力症状以及父亲参与孩子护理情况的问卷调查。参与者从澳大利亚4家大都市儿童医院招募。
父母报告的心理症状发生率与正常人群相似。他们对家庭功能的报告显著低于此前发表的有一名家庭成员患有疾病的人群的平均得分（人群平均分为1.89；母亲平均分为1.59；父亲平均分为1.61，P<0.001）。家庭角色的混乱与母亲（r=0.48，P<0.01）和父亲（r=0.31，P<0.05）的心理症状显著相关。父亲给予更多帮助与母亲较低的抑郁水平相关（r=-0.35，P<0.05），父亲的焦虑与他们更多的参与度相关（r=0.40，P<0.01）。
当父母报告存在心理症状时，父母双方可能都有症状，并且这些症状与难以适应家庭角色的混乱有关。父亲的参与可能对母亲的心理健康有保护作用。
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