Zeytinoğlu Senem, Davey Maureen P, Crerand Canice, Fisher Kathleen
Department of Couple and Family Therapy, College of Nursing and Health Professions.
Department of Couple and Family Therapy, Drexel University.
Fam Syst Health. 2016 Jun;34(2):150-8. doi: 10.1037/fsh0000198. Epub 2016 Apr 21.
Cleft lip and/or palate (CL/P) affects not just the child born with the condition but also the child's parents. Prior research has been primarily cross-sectional, quantitative, and focused on mothers' emotional, social, and care experiences. Fathers' experiences have been neglected despite the important role fathers have in their child's well-being and development. The purpose of this study was to examine how the timing of a child's diagnosis (prenatal vs. postnatal) affects how fathers cope and adapt.
We conducted a descriptive qualitative study with a convenience sample of 17 fathers and used thematic content analysis to code the interviews. The sample included 10 fathers who received a prenatal diagnosis and 7 who received a postnatal diagnosis.
The following 4 major themes emerged: (a) first hearing the diagnosis, (b) taking care of a baby with cleft, (c) future concerns, and (d) reflections. Course of treatment, feeding, and social stigma were reported as major sources of stress for all fathers.
All fathers should be routinely assessed by CL/P treatment teams and included in support services. Some fathers whose babies were diagnosed at birth experienced self-blame, suggesting the importance of screening this group of fathers for distress at birth. Findings underscore the importance of family centered approaches to care that include both mothers and fathers in treatment planning, interventions, and future research. (PsycINFO Database Record
唇腭裂（CL/P）不仅会影响患有该疾病的儿童，还会对孩子的父母产生影响。先前的研究主要是横断面研究、定量研究，且侧重于母亲的情感、社会和护理经历。尽管父亲在孩子的幸福和发展中起着重要作用，但他们的经历却被忽视了。本研究的目的是探讨孩子诊断时间（产前与产后）如何影响父亲的应对和适应方式。
我们对17位父亲的便利样本进行了描述性定性研究，并使用主题内容分析法对访谈进行编码。样本包括10位接受产前诊断的父亲和7位接受产后诊断的父亲。
出现了以下4个主要主题：（a）首次听到诊断结果，（b）照顾唇腭裂婴儿，（c）对未来的担忧，以及（d）反思。治疗过程、喂养和社会耻辱感被报告为所有父亲压力的主要来源。
唇腭裂治疗团队应对所有父亲进行常规评估，并让他们参与支持服务。一些孩子在出生时被诊断出唇腭裂的父亲会自责，这表明筛查这组父亲在孩子出生时的痛苦情绪很重要。研究结果强调了以家庭为中心的护理方法的重要性，即在治疗计划、干预措施和未来研究中纳入母亲和父亲。（PsycINFO数据库记录
