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一项针对囊性纤维化患儿照料者的家长赋权干预措施的有效性:一项随机对照试验。

The Effectiveness of a Parent Empowerment Intervention for Caregivers of Children with Cystic Fibrosis: A Randomized Controlled Trial.

作者信息

Donmez Hatice, Tas Arslan Fatma

机构信息

College of Health Science, Karamanoğlu Mehmetbey University, Karaman, Turkey.

Faculty of Nursing, Selçuk University, Konya, Turkey.

出版信息

Compr Child Adolesc Nurs. 2024 Dec;47(4):267-283. doi: 10.1080/24694193.2024.2411986. Epub 2024 Oct 9.

Abstract

This paper focused on the effectiveness of a parent empowerment intervention based on nursing education (PEINE). This study examined whether the intervention improved the quality of life of children with cystic fibrosis (CF) and improved their caregivers learn about the disease and develop problem-solving and coping skills. This randomized-controlled trial used a pretest-posttest parallel-group research design. The sample consisted of 48 parents (caregivers) of children with CF. Participants were randomly assigned to an intervention ( = 24) and a control group ( = 24). The intervention group received PEINE and standard care and treatment for ten weeks. The control group received standard care and treatment. Data were collected using a Disease Information Survey (DIS), the Ways of Coping Inventory (WCI), the Problem-Solving Inventory (PSI), and the Cystic Fibrosis Questionnaire (CFQ-R). After the intervention, the intervention group DIS scores (d: 1,627 [CI: 0.934,2.305], had more correct answers than the control group. Nursing interventions were effective ( < .001). There was no significant difference in the mean pretest-posttest PSI scores (d: 0.378 [CI: -0.221-0.972], posttest WCI scores (d: 0.239 [CI:-0.356-0.831]) between the intervention and control groups (>.05). There was a significant difference in the mean posttest CFQ-R scores between the intervention and control groups (d: 1.363 [CI: l.698, 2.015]);( < .001). PEINE increased the intervention group participants develop disease-management skills. However, the increase in their PSI and WCI scores was statistically insignificant. PEINE also increased the quality of life of children with CF. Parents of children followed in pediatric pulmonary diseases participated in the study. Parents were informed during outpatient clinic visits. After the first meeting, the children and parents who voluntarily agreed to participate in the research were contacted by phone. The outpatient nurse assisted in communicating with children and parents.

摘要

本文聚焦于基于护理教育的家长赋权干预措施(PEINE)的有效性。本研究考察了该干预措施是否改善了囊性纤维化(CF)患儿的生活质量,以及是否提高了其照顾者对该疾病的了解程度,并培养了他们解决问题和应对的技能。这项随机对照试验采用了前测-后测平行组研究设计。样本包括48名CF患儿的家长(照顾者)。参与者被随机分配到干预组(n = 24)和对照组(n = 24)。干预组接受为期十周的PEINE以及标准护理和治疗。对照组接受标准护理和治疗。数据通过疾病信息调查(DIS)、应对方式量表(WCI)、问题解决量表(PSI)和囊性纤维化问卷(CFQ-R)进行收集。干预后,干预组的DIS得分(d:1.627 [CI:0.934, 2.305])比对照组有更多正确答案。护理干预措施是有效的(p <.001)。干预组和对照组在前测-后测PSI得分均值(d:0.378 [CI:-0.221 - 0.972])、后测WCI得分均值(d:0.239 [CI:-0.356 - 0.831])上无显著差异(p >.05)。干预组和对照组在后测CFQ-R得分均值上存在显著差异(d:1.363 [CI:1.698, 2.015]);(p <.001)。PEINE提高了干预组参与者的疾病管理技能。然而,他们的PSI和WCI得分的提高在统计学上不显著。PEINE还提高了CF患儿的生活质量。参与儿科肺病随访的患儿家长参与了该研究。家长们在门诊就诊时被告知相关信息。第一次会面后,通过电话联系了自愿同意参与研究的患儿和家长。门诊护士协助与患儿和家长进行沟通。

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