The experiences of young people with chronic illness in New Zealand: A qualitative study.
The experiences of young people with chronic illness in New Zealand: A qualitative study.
复制标题
新西兰患有慢性病的年轻人的经历：一项定性研究。
DOI：
10.1111/cch.12696
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发表时间：
2019
期刊：
影响因子：
--
通讯作者：
R. Richards
中科院分区：
文献类型：
--
作者：
J. Sligo;B. Jones;Cheryl Davies;R. Egan;T. Ingham;B. Hancox;R. Richards
背景
大约10%的年轻人患有慢性疾病，他们的医疗保健需求与儿童或成人不同。大多数关于年轻人慢性病的研究都侧重于具体情况、年幼儿童的经历和父母的观点。这项研究探讨了患有两种非常不同的慢性病（哮喘和癌症）的年轻人的经历，以及他们对新西兰卫生系统对其需求的反应的看法。
方法
这是一个合作研究过程，其中八名患有哮喘或癌症的年轻合作研究人员与研究团队一起工作，制定协议，采访同行并协助分析。这一过程的挑战在文章中描述。来自新西兰两个城市地区的21名15至27岁的年轻人参加了关于他们医疗保健经历的半结构化开放式访谈。16名参与者为女性，5名为男性。其中11名参与者完成了癌症治疗（自诊断以来平均3.6年），10名患有哮喘。有目的的抽样意味着80%的哮喘参与者被确定为毛利人，其他参与者被确定为一系列其他种族群体。数据按主题编码，并咨询合作研究人员以得出最终结果。
结果
慢性病打乱了年轻人的生活轨迹，并对他们的人际关系产生重大影响。新西兰的卫生系统一般不能很好地满足这些年轻人的需要，但许多人遇到了为他们提供有效支助的杰出人士。一些土著与会者的经验表明，保健专业人员需要有效的文化能力培训。
结论
这项研究提供了对不同条件的年轻人如何体验卫生系统的见解。应与青年协商，并让他们积极参与决策，使卫生系统满足他们的各种需求。
BACKGROUND
Around 10% of young people suffer from chronic health conditions and their healthcare needs are different from those of children or adults. Most research about young people’s chronic illness focuses on specific conditions, younger children’s experience and on the perspectives of parents. This study explored the experiences of young people with two very different chronic conditions (asthma and cancer) and their perception of the New Zealand health system's response to their needs.
METHODS
This was a collaborative research process where eight young co-researchers who had asthma or cancer were employed to work alongside the research team to develop protocols, interview peers and assist with analysis. The challenges of this process are described in the article. Twenty-one young people between ages 15 and 27 from two urban areas of New Zealand participated in semi-structured open-ended interviews about their healthcare experiences. Sixteen participants are female and five male. Eleven of the participants had finished cancer treatment (with an average of 3.6 years since diagnosis) and ten had asthma. Purposeful sampling meant that 80% of the participants with asthma identified as Māori and the other participants identified with a range of other ethnic groups. Data was thematically coded and co-researchers were consulted to derive the ultimate findings.
RESULTS
Chronic illness disrupted the trajectory of young people’s lives and had significant effects on their relationships. The New Zealand health system generally did not respond well to the needs of these young people but many encountered extraordinary individuals who supported them effectively. The experiences of some indigenous participants indicates that health professionals require effective cultural competence training.
CONCLUSIONS
This study provides insights into how young people with very different conditions experience the health system. Young people should be consulted and actively included in decision-making about making health systems responsive to their diverse needs.
影响因子：
3.6
作者：
Rosenberg, Abby R.;Yi-Frazier, Joyce P.;McCauley, Elizabeth
通讯作者：
McCauley, Elizabeth