A 'normal' life: a qualitative study exploring parents' experiences of everyday life with a child diagnosed with atopic dermatitis and atopic comorbidities.

IF 1.9 3区 医学 Q3 HEALTH CARE SCIENCES & SERVICES
Gitte Færk, Elisabeth Søndergaard, Lone Skov, Kirsten Skamstrup Hansen, Susanne Reventlow
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Abstract

Introduction: Atopic dermatitis (AD) and related atopic diseases are among the chronic health conditions that are becoming more common in children. Children with AD may develop atopic comorbidities, which makes it more difficult to manage treatment and necessitates more precautions in the child's everyday life. The parents of chronically ill children play a key role as the children's primary carers. This article explores the experiences of parents with the everyday tasks related to their children's illnesses.

Methods: Face-to-face interviews in the Capital Region of Denmark, with eleven families with children, aged between one and five years, with AD and at least one atopic comorbidity (food allergy, allergic rhinoconjunctivitis or asthma).

Results: We argue that, aside from the immediate tasks directly linked to the child's treatments, there are numerous other types of tasks, both inside and outside the home, that emerge when a family adjusts to living with a child with AD and atopic comorbidities. We present three major strategies that parents use to protect their child: risk avoidance, pursuing a normal childhood, and good parenting. These strategies are closely related to the parents' wish to give their child as normal a childhood as possible.

Conclusion: Based on the findings, we suggest that healthcare professionals, beside the medical examination and treatment, are sensitive and attentive towards the large amounts of invisible work that parents of children with AD and atopic comorbidities accomplish and maintain awareness that parents may downplay the workload. Knowing the patients as persons can help facilitate and strength a trusting relationship.

一个“正常”的生活:一个质性研究探索父母的日常生活经验与孩子诊断为特应性皮炎和特应性合并症。
引言:特应性皮炎(AD)和相关的特应性疾病是儿童中越来越常见的慢性健康状况之一。患有阿尔茨海默病的儿童可能会出现特应性合并症,这使得治疗更加困难,需要在儿童的日常生活中采取更多的预防措施。慢性病儿童的父母作为儿童的主要照顾者发挥着关键作用。这篇文章探讨了父母与孩子的疾病有关的日常任务的经验。方法:在丹麦首都地区对11个家庭进行面对面访谈,这些家庭的儿童年龄在1至5岁之间,患有AD并至少有一种特应性合并症(食物过敏、过敏性鼻结膜炎或哮喘)。结果:我们认为,除了与孩子的治疗直接相关的即时任务外,当一个家庭适应与患有AD和特应性合并症的孩子一起生活时,还会出现许多其他类型的任务,包括家庭内外。我们提出了三种主要的策略,父母用来保护他们的孩子:风险规避,追求一个正常的童年,和良好的养育。这些策略与父母希望给孩子一个尽可能正常的童年的愿望密切相关。结论:基于研究结果,我们建议医疗保健专业人员除了医学检查和治疗外,还应敏感和关注患有AD和特应性合并症的儿童的父母所完成的大量无形工作,并保持父母可能低估工作量的意识。把病人当作人来对待,有助于促进和加强信任关系。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
3.20
自引率
19.00%
发文量
47
审稿时长
>12 weeks
期刊介绍: Scandinavian Journal of Primary Health Care is an international online open access journal publishing articles with relevance to general practice and primary health care. Focusing on the continuous professional development in family medicine the journal addresses clinical, epidemiological and humanistic topics in relation to the daily clinical practice. Scandinavian Journal of Primary Health Care is owned by the members of the National Colleges of General Practice in the five Nordic countries through the Nordic Federation of General Practice (NFGP). The journal includes original research on topics related to general practice and family medicine, and publishes both quantitative and qualitative original research, editorials, discussion and analysis papers and reviews to facilitate continuing professional development in family medicine. The journal''s topics range broadly and include: • Clinical family medicine • Epidemiological research • Qualitative research • Health services research.
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