Parsons Suzanne, Thomson Wendy, Cresswell Katharine, Starling Bella, McDonagh Janet E
Public Programmes Team, Manchester University NHS Foundation Trust, Manchester, UK.
NIHR Manchester Biomedical Research Centre, Manchester University NHS Foundation Trust, Manchester, UK.
Pediatr Rheumatol Online J. 2018 May 24;16(1):35. doi: 10.1186/s12969-018-0251-z.
Involving people of all ages in health research is now widely advocated. To date, no studies have explored whether and how young people with chronic rheumatic conditions want to be involved in influencing health research. This study aimed to explore amongst young people with rheumatic conditions, 1) their experiences of research participation and involvement 2) their beliefs about research involvement and 3) beliefs about how young people's involvement should be organized in the future.
Focus groups discussions with young people aged 11-24 years with rheumatic conditions across the UK. Data was analysed using a qualitative Framework approach.
Thirteen focus groups were held involving 63 participants (45 F: 18 M, mean age 16, range 10 to 24 years) across the UK. All believed that young people had a right to be involved in influencing research and to be consulted by researchers. However, experience of research involvement varied greatly. For many, the current project was the first time they had been involved. Amongst those with experience of research involvement, awareness of what they had been involved in and why was often low. Those who had previously participated in research appeared more positive and confident about influencing research in the future. However, all felt that there were limited opportunities for them to be both research participants and to get involved in research as public contributors.
These findings suggest that there is an on-going need to both increase awareness of research involvement and participation of young people in rheumatology as well as amongst young people themselves.
目前广泛提倡让各年龄段的人参与健康研究。迄今为止，尚无研究探讨患有慢性风湿性疾病的年轻人是否以及如何希望参与影响健康研究。本研究旨在探究患有风湿性疾病的年轻人：1）他们参与研究的经历；2）他们对参与研究的看法；3）对未来如何组织年轻人参与研究的看法。
在英国对11至24岁患有风湿性疾病的年轻人进行焦点小组讨论。采用定性框架方法对数据进行分析。
在英国共举行了13次焦点小组讨论，有63名参与者（45名女性：18名男性，平均年龄16岁，年龄范围为10至24岁）。所有人都认为年轻人有权参与影响研究并接受研究人员的咨询。然而，参与研究的经历差异很大。对许多人来说，当前项目是他们首次参与。在有研究参与经历的人中，对自己参与的内容及原因的了解往往较少。那些曾参与过研究的人似乎对未来影响研究更为积极和自信。然而，所有人都觉得他们作为研究参与者以及作为公众贡献者参与研究的机会有限。
这些发现表明，持续需要提高年轻人对参与风湿病研究的认识以及他们自身的参与度，同时也需要提高年轻人在这方面的参与度。
