Hassink E A, Brugman-Boezeman A T, Robbroeckx L M, Rieu P N, van Kuyk E M, Wels P M, Festen C
Department of Pediatric Surgery, University Hospital Nijmegen, Nijmegen, The Netherlands.
Pediatr Surg Int. 1998 Jul;13(5-6):377-83. doi: 10.1007/s003830050344.
Parents play a crucial role in the life of a child suffering from an anorectal malformation (ARM), since their guidance contributes to the degree to which the child learns to cope with his or her disability. We investigated whether they experience stress in parenting such a child and also attempted to identify somatic or behavioral characteristics in the child that influence the stress of parenting. The parents of 109 children (69 males, 40 females; median age 5.9 years, range 1-18 years) with an ARM (58 low, 10 intermediate, 41 high) were studied. The Nijmegen Questionnaire on Child-rearing Situations (NQCS) was used to investigate the existing parenting situation. Behavioral characteristics of the children were studied by means of the Child Behaviour Checklist (CBCL) and the Teacher Report Form (TRF). In a semi-structured interview, we investigated how parents experienced the implications of the disability in everyday life with their child. Our study showed that as far as the perception of parenting stress is concerned, parents of children with an ARM do not differ from those with healthy primary-school children. Within the group of parents with ARM-afflicted children, the parents of older, incontinent children experienced relatively more stress, especially when the child concerned was male. With regard to the children's behavior, the parents and teachers under investigation did not report a higher than normal incidence of deviant behavior. However, when individual parents observed difficult behavior in their child, they found it harder to deal with than the incontinence for feces. Regarding the implications of the disorder for their everyday lives, parents were concerned and indicated a need for specific counselling. We conclude that having a child with a somatic affliction, in this case an ARM, does not automatically imply that the parents experience child-rearing problems. However, certain groups of parents are more at risk, i.e., parents with older, incontinent sons and parents with children exhibiting behavioral problems. In addition, our study shows that parents do have difficulties in coping with the implications of the disorder and express a need for support. We feel that patient care can be improved if aid is tailored to these specific problems.
父母在患有肛门直肠畸形（ARM）的孩子的生活中起着至关重要的作用，因为他们的引导有助于孩子学会应对自身残疾的程度。我们调查了他们在养育这样一个孩子时是否会感到压力，还试图确定孩子身上影响养育压力的躯体或行为特征。对109名患有ARM（58例低位、10例中位、41例高位）的儿童（69名男性，40名女性；中位年龄5.9岁，范围1 - 18岁）的父母进行了研究。使用奈梅亨育儿情况问卷（NQCS）来调查现有的养育情况。通过儿童行为检查表（CBCL）和教师报告表（TRF）来研究儿童的行为特征。在一次半结构化访谈中，我们调查了父母如何体验残疾对他们与孩子日常生活的影响。我们的研究表明，就养育压力的感知而言，患有ARM的孩子的父母与健康小学生的父母没有差异。在患有ARM的孩子的父母群体中，年龄较大且大小便失禁的孩子的父母经历的压力相对更大，尤其是当相关孩子为男性时。关于孩子的行为，接受调查的父母和教师并未报告异常行为的发生率高于正常水平。然而，当个别父母观察到孩子有难处理的行为时，他们发现这种情况比孩子大便失禁更难应对。关于该疾病对他们日常生活的影响，父母表示担忧并表示需要特定的咨询。我们得出结论，有一个患有躯体疾病（在这种情况下为ARM）的孩子并不必然意味着父母会遇到养育问题。然而，某些父母群体面临的风险更大，即年龄较大且大小便失禁的儿子的父母以及孩子有行为问题的父母。此外，我们的研究表明，父母在应对该疾病的影响方面确实存在困难，并表示需要支持。我们认为，如果针对这些特定问题提供帮助，患者护理可以得到改善。
