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儿童囊性纤维化自我护理发展任务达成的专业人员期望调查

Survey of professionals' expectations of developmental task achievement of cystic fibrosis self-care in children.

作者信息

Patton Susana R, Graham Julie L, Holsclaw Douglas, Varlotta Laurie

机构信息

Division of Child Behavioral Health, University of Michigan Health System and C.S. Mott Children's Hospital, Ann Arbor, Michigan 48109-0318, USA.

出版信息

Pediatr Pulmonol. 2005 Aug;40(2):135-40. doi: 10.1002/ppul.20262.

Abstract

We surveyed 174 professionals with at least 6 months of experience working with children and adolescents with cystic fibrosis (CF), to obtain estimates of ages at which 50% of children with CF may be able to perform each of 44 self-care behaviors related to the treatment of CF. Respondents were 63 physicians, 36 nurses, 24 dietitians, 18 respiratory therapists, 17 nurse practitioners, 10 social workers, and 4 psychologists, who had a mean of 11.4 years (SD = 7.5) of experience working with pediatric patients with CF. Mean age estimates for self-care behaviors ranged from 5.5-13.9 years. For each item, responses varied among respondents, as reflected by a mean standard deviation of 2.75 years for all behaviors. Analyses of concordance suggested a high level of agreement among respondents for the order of mastery of specific skills related to diet and enzymes use only. To date, there are no empirically defined age estimates for when children with CF may be able to perform specific self-care behaviors involved in the management of CF. This survey is the first step in generating age estimates for self-care independence in CF. Future research should conduct an objective assessment of children's CF knowledge and skill in performing these behaviors, and compare these findings to the age estimates offered in this study.

摘要

我们对174名至少有6个月治疗囊性纤维化(CF)儿童和青少年经验的专业人员进行了调查,以估计50%的CF儿童能够进行与CF治疗相关的44种自我护理行为中每项行为的年龄。受访者包括63名医生、36名护士、24名营养师、18名呼吸治疗师、17名执业护士、10名社会工作者和4名心理学家,他们治疗CF儿科患者的平均经验为11.4年(标准差=7.5)。自我护理行为的平均年龄估计范围为5.5至13.9岁。对于每个项目,受访者的回答各不相同,所有行为的平均标准差为2.75年就反映了这一点。一致性分析表明,受访者之间仅在与饮食和酶使用相关的特定技能掌握顺序上达成了高度一致。迄今为止,尚无关于CF儿童何时能够进行CF管理中涉及的特定自我护理行为的实证确定的年龄估计。本次调查是得出CF自我护理独立性年龄估计的第一步。未来的研究应该对儿童在进行这些行为时的CF知识和技能进行客观评估,并将这些结果与本研究中提供的年龄估计进行比较。

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