澳大利亚家庭的信息需求生活与部突症:一个定性研究
Amanda J Osborn1, Rachel M Roberts1, Diana S Dorstyn1
1School of Psychology, University of Adelaide, Adelaide, SA, Australia.
概括
澳大利亚父母的孩子与关节缩需要更多的及时和可访问的信息,关于治疗和支持. 卫生系统往往没有提供足够的细节,这给那些终身患有这种疾病的家庭带来了挑战.
科学领域:
- 儿科手术 儿科手术
- 遗传学 是一个遗传学.
- 公共卫生 公共卫生
背景情况:
- 头骨突症是一种影响头骨发育的终身疾病.
- 澳大利亚家族的信息需求与关节缩症并没有很好地理解.
- 早期诊断和干预对于管理关突症至关重要.
研究的目的:
- 探索澳大利亚父母的信息需求,他们的孩子被诊断为非综合征或综合征性关节痛.
- 发现澳大利亚医疗保健系统中信息提供方面的差距.
- 了解父母在获取有关骨突症的可靠信息方面的挑战.
主要方法:
- 进行了21次在线叙事采访,采访了被诊断患有骨突症的儿童 (4个月至20岁) 的父母.
- 利用反射主题分析来分析采访成绩单.
- 开发了反映家长经验和信息需求的主题.
主要成果:
- 父母报告说,他们没有得到足够的信息,特别是关于住院的实用性,手术程序和治疗结果.
- 对于与他人讨论孩子的病情的指导存在重大需求.
- 家庭面临着难以获得可靠的,特定于位置的关于治疗选择和预后信息的困难.
结论:
- 儿童的父母需要更全面和可访问的信息.
- 全球的医疗保健提供者可以从了解父母的信息需求中获益.
- 开发和传播及时,易于获取的信息资源对于支持受影响家庭至关重要.
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