University of Manchester, Manchester, United Kingdom.
Qual Health Res. 2012 Mar;22(3):346-59. doi: 10.1177/1049732311421178. Epub 2011 Sep 2.
Little is known about the experiences of parents caring for a child through long-term treatment for cleft lip and/or cleft palate. We conducted in-depth interviews with 35 parents with children between the ages of 20 weeks and 21 years to explore experiences across the treatment program. We analyzed the data using a constructivist grounded theory approach and present in detail in this article one subcategory from the analysis: managing emotions. Throughout childhood and adolescence, parents experienced conflicting emotions about their child's impairment, uncertainty about cleft treatment, and stigmatizing attitudes. Although parents attempted to manage emotional tensions by pursuing cleft treatments, the interventions could themselves be a source of conflict for them. We suggest that routine assessment of parents' emotional and social well-being should be included in cleft treatment programs, and access to psychosocial support made available.
人们对父母照顾唇腭裂患儿接受长期治疗的经历知之甚少。我们对 35 名父母进行了深入访谈，这些父母的孩子年龄在 20 周到 21 岁之间，旨在探讨整个治疗过程中的经历。我们使用建构主义扎根理论方法对数据进行了分析，并在本文中详细介绍了分析的一个子类别：管理情绪。在儿童期和青春期，父母对孩子的残疾、对唇腭裂治疗的不确定性以及对污名化的态度感到矛盾。尽管父母试图通过接受唇腭裂治疗来管理情绪紧张，但这些干预措施本身也可能成为他们冲突的来源。我们建议在唇腭裂治疗方案中纳入对父母情绪和社会福祉的常规评估，并提供获得社会心理支持的途径。
