Illum Niels Ove, Bonderup Mette, Gradel Kim Oren
Hans Christian Andersen Children's Hospital, Division of Child Neurology, Odense University Hospital, Odense, Denmark.
Odense Municipality, Special Counselling Unit, Odense, Denmark.
Clin Med Insights Pediatr. 2018 Jun 27;12:1179556518784948. doi: 10.1177/1179556518784948. eCollection 2018.
To assess parents' ability to express their concerns and hopes for the future in their children with disability and assess their children's disability as well as to analyse these data for consistency.
Parents of 162 children with spina bifida, spinal muscular atrophy, muscular disorders, cerebral palsy, visual impairment, hearing impairment, mental disability, or disability following brain tumours were asked to freely express their concerns and hopes for the future and to assess disability in their own children by employing a set of 26 International Classification of Functioning, Disability and Health, Children and Youth Version (ICF-CY) body function (b) codes and activity and participation (d) codes. A grounded theory approach was employed to systematize parents' expressions of concerns and hopes; then, parents scored qualifiers on a 5-step qualitative Likert scale. Parents assessed their children's disability in the same way using the ICF-CY 5-step qualifier scale.
Altogether, 119 parents freely expressed their concerns and hopes, and 101 of them also assessed their children's disability using the 26 ICF-CY codes. A total of 475 expressions of concern and hopes (issues) were expressed and categorized into 34 areas of concern and hopes (subsections). The most frequently mentioned issues were education; understanding, goodwill, and communication between parents; and community support. Qualitative data on both 5-step qualifier scales showed good reliability. Rasch analysis maps on concerns and hopes for children as well as on the ICF-CY assessment demonstrated good alignment and a clinically relevant progression from the least to the most disabled children.
Parents can express valid and reliable data on their concerns and hopes for the future and can reliably assess disability in their own children.
评估父母表达对残疾子女未来担忧与期望的能力，评估其子女的残疾状况，并分析这些数据的一致性。
邀请162名患有脊柱裂、脊髓性肌萎缩症、肌肉疾病、脑瘫、视力障碍、听力障碍、智力残疾或脑瘤后残疾的儿童的父母，让他们自由表达对未来的担忧与期望，并使用一套26项《国际功能、残疾和健康分类》儿童与青少年版（ICF-CY）身体功能（b）编码及活动与参与（d）编码来评估自己孩子的残疾情况。采用扎根理论方法将父母对担忧与期望的表达进行系统化整理；然后，父母按照5级定性李克特量表对限定词进行评分。父母使用ICF-CY 5级限定词量表以同样方式评估孩子的残疾情况。
共有119名父母自由表达了他们的担忧与期望，其中101名还使用26项ICF-CY编码评估了孩子的残疾情况。总共表达了475条担忧与期望（问题），并归类为34个担忧与期望领域（子类别）。最常提及的问题是教育；父母之间的理解、善意和沟通；以及社区支持。两个5级限定词量表的定性数据均显示出良好的可靠性。关于对孩子担忧与期望以及ICF-CY评估的拉施分析图谱显示出良好的一致性，以及从残疾程度最轻到最重的儿童之间具有临床相关性的进展。
父母能够就他们对未来的担忧与期望表达有效且可靠的数据，并且能够可靠地评估自己孩子的残疾情况。
