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家长对儿科炎症性肠病患儿健康和家庭功能的看法。

Parents' views of their child's health and family function in paediatric inflammatory bowel disease.

机构信息

Department of Paediatrics, The Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden.

出版信息

Acta Paediatr. 2010 Apr;99(4):612-7. doi: 10.1111/j.1651-2227.2009.01651.x. Epub 2010 Jan 5.

Abstract

AIM

The aim of this study was to explore parents' views and agreement of their child's current and future health, as well as the family's functioning in daily life with inflammatory bowel disease (IBD).

METHODS

In this study, 119 parents (65 mothers and 54 fathers) of 66 adolescents (11-16 years) with IBD completed a questionnaire regarding their views of their child's IBD and health-related behaviour.

RESULTS

The majority of the parents held a positive view of their child's current health status. However, the parents voiced a range of worries about their children's future health and life situation such as fear about the side effects of medication, concerns for future schooling, social life and employment options. Within the families, the parental pairs had more similar views about their child's current health status than about their future health. Factors that affected the parents' views consisted of cohabitation status, i.e. parents not living together, and severe disease course, both correlated with a more negative view of the child's current health and family functioning.

CONCLUSION

The majority of the parents in this study had a largely positive view of their child's current health status, but they expressed concerns about their child's future health. Knowledge about parents' thoughts may be of importance for healthcare teams supporting families with IBD.

摘要

目的

本研究旨在探讨父母对其子女当前和未来健康状况的看法和认同,以及在患有炎症性肠病(IBD)的日常生活中家庭的功能。

方法

在这项研究中,119 名患有 IBD 的青少年(11-16 岁)的父母(65 名母亲和 54 名父亲)完成了一份关于他们对孩子 IBD 和与健康相关行为的看法的问卷。

结果

大多数父母对孩子当前的健康状况持积极看法。然而,父母对孩子未来的健康和生活状况表示担忧,例如对药物副作用的担忧、对未来学业、社交生活和就业选择的担忧。在家庭中,父母对孩子当前的健康状况比未来的健康状况有更多相似的看法。影响父母观点的因素包括同居状况,即父母不住在一起,以及严重的疾病过程,这两者都与对孩子当前健康和家庭功能的更负面看法相关。

结论

在这项研究中,大多数父母对孩子的当前健康状况持积极看法,但他们对孩子的未来健康表示担忧。了解父母的想法可能对支持 IBD 家庭的医疗保健团队很重要。

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