对罕见病儿童生活的定性研究。

IF 1.8 4区 医学 Q2 PEDIATRICS
Niamh Buckle, Yvonne Rogers, Doris O'Toole, Sandra McNulty, Thilo Kroll, Lisa Gibbs, Suja Somanadhan
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引用次数: 0

摘要

背景:罕见病包括各种使人衰弱、有时危及生命的疾病,这些疾病只影响一小部分人,对公共卫生构成重大挑战。尽管罕见病十分罕见,但约有 70% 的罕见病影响着儿童,然而有关儿童罕见病经历的研究却十分有限。本研究旨在深入了解罕见病患儿面临的日常挑战:我们对 11 名被诊断患有各种罕见病的儿童和青少年(7-16 岁)进行了一对一的半结构式访谈,访谈对象是从爱尔兰的一家三级儿科医疗机构有目的地抽取的。我们对访谈记录进行了分析,并归纳出了主题:结果:确定了两个主题:结果:我们确定了两个主题:"对罕见病的认识和理解 "和 "融入与感到与众不同"。这些主题出现在家庭、医院、学校和社会等不同环境中,以说明罕见病对参与者日常生活的影响。我们建立了一个概念框架,以说明儿童的知识、经验和情感如何塑造他们在罕见病环境中的身份:我们的分析表明,参与者的归属感和他们对自己与众不同的认识之间存在着复杂的相互作用,并受到罕见病症或疾病的表现和要求的影响。他们身份的这种双重性在社会环境中最为明显,因为在社会环境中,参与者感受到罕见病对他们的影响最大。了解这种相互作用有助于了解罕见病儿童所面临的独特社会挑战。提高对这些疾病的认识可以减轻这些儿童的社会挑战,为罕见病患者营造一个更具包容性的社会。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

A qualitative exploration of children's lives with rare diseases

A qualitative exploration of children's lives with rare diseases

Background

Rare diseases encompass a diverse group of debilitating and sometimes life-threatening conditions that affect a small percentage of the population, posing a significant public health challenge. Despite their rarity, around 70% of these diseases afflict children, yet limited research has focused on their experiences. This study aimed to gain insights into the day-to-day challenges children living with rare diseases face.

Methods

We conducted semistructured one-to-one interviews with 11 children and young people (7–16 years) diagnosed with a range of rare diseases, purposively sampled from a tertiary pediatric healthcare setting in Ireland. We analyzed the interview transcripts, and themes were devised inductively.

Results

Two themes were identified: “Knowledge and Understanding of Rare Diseases” and “Fitting in Versus Feeling Different.” These themes emerged across various settings—the home, hospital, school, and social environments—to illustrate the impact of rare diseases on the participants' daily lives. A conceptual framework was developed to illustrate how the children's knowledge, experiences, and emotions shape their identity in a rare disease context.

Conclusions

Our analysis revealed a complex interplay between the participants' sense of belonging and their awareness of being different, influenced by the manifestations and demands of their rare conditions or illnesses. This duality in their identity was most pronounced in social settings, where the participants felt the most significant impact of their rare diseases. Understanding this interplay sheds light on the unique social challenges children with rare medical conditions face. Raising awareness about these conditions could mitigate these children's social challenges, fostering a more inclusive society for those with rare diseases.

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来源期刊
CiteScore
3.40
自引率
5.30%
发文量
136
审稿时长
4-8 weeks
期刊介绍: Child: care, health and development is an international, peer-reviewed journal which publishes papers dealing with all aspects of the health and development of children and young people. We aim to attract quantitative and qualitative research papers relevant to people from all disciplines working in child health. We welcome studies which examine the effects of social and environmental factors on health and development as well as those dealing with clinical issues, the organization of services and health policy. We particularly encourage the submission of studies related to those who are disadvantaged by physical, developmental, emotional and social problems. The journal also aims to collate important research findings and to provide a forum for discussion of global child health issues.
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