Sligo Judith, Jones Bernadette, Davies Cheryl, Egan Richard, Ingham Tristram, Hancox Robert J, Richards Rosalina
Department of Preventive and Social Medicine, University of Otago, Dunedin, New Zealand.
Department of Medicine, University of Otago, Wellington (UOW), Wellington, New Zealand.
Child Care Health Dev. 2019 Sep;45(5):660-669. doi: 10.1111/cch.12696. Epub 2019 Jul 15.
Around 10% of young people suffer from chronic health conditions, and their health care needs are different from those of children or adults. Most research about young people's chronic illness focuses on specific conditions, on 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.
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 semistructured open-ended interviews about their health care experiences. Sixteen participants were female, and five male. Eleven of the participants had finished cancer treatment (with an average of 3.6 years since diagnosis), and 10 had asthma. Purposeful sampling meant that 80% of the participants with asthma were identified as Māori and the other participants identified with a range of other ethnic groups. Data were thematically coded, and coresearchers were consulted to derive the ultimate findings.
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 indicate that health professionals require effective cultural competence training.
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.
约10%的年轻人患有慢性健康问题，他们的医疗保健需求与儿童或成年人不同。大多数关于年轻人慢性病的研究都集中在特定疾病、年幼儿童的经历以及家长的观点上。本研究探讨了患有两种截然不同慢性病（哮喘和癌症）的年轻人的经历，以及他们对新西兰医疗系统满足其需求情况的看法。
这是一个合作研究过程，八名患有哮喘或癌症的年轻共同研究者受雇与研究团队合作，制定方案、采访同龄人并协助分析。本文描述了这一过程中遇到的挑战。来自新西兰两个城市地区的21名年龄在15至27岁之间的年轻人参与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名男性。11名参与者已完成癌症治疗（自确诊以来平均3.6年），10名患有哮喘。目的抽样意味着80%的哮喘参与者被认定为毛利人，其他参与者则属于一系列其他种族群体。数据进行了主题编码，并咨询了共同研究者以得出最终结果。
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了重大影响。新西兰医疗系统总体上对这些年轻人的需求响应不佳，但许多人遇到了能有效支持他们的非凡个体。一些原住民参与者的经历表明，卫生专业人员需要有效的文化能力培训。
本研究深入了解了患有截然不同疾病的年轻人如何体验医疗系统。在使医疗系统响应他们的多样化需求方面，应征求年轻人的意见并让他们积极参与决策。
