Hanghøj Signe, Pappot Helle, Hjalgrim Lisa Lyngsie, Hjerming Maiken, Visler Camilla Louise, Boisen Kirsten A
Center of Adolescent Medicine, Department of Paediatrics and Adolescent Medicine, Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark.
Department of Oncology, Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark.
Int J Adolesc Med Health. 2020 Jun 10;34(2):67-75. doi: 10.1515/ijamh-2019-0253.
Service user participation contributes to the improvement of health care services for the betterment of conditions experienced by patients. However, there is a lack of knowledge about how adolescents and young adults (AYAs) experience involvement processes in practice and what it would take to achieve a high degree of involvement according to AYAs.
To explore: (1) how AYAs with cancer experienced involvement processes during participation in three different service user involvement initiatives (development of an app, development of a book and youth panel meetings), and (2) AYAs' perceptions of determination and collaborative areas between AYAs and professionals.
Individual semi-structured interviews were conducted with 12 AYAs with cancer aged 16-29 who had participated in at least one of the service user initiatives in Kræftværket, a youth cancer support centre and social organisation located at Copenhagen University Hospital, Denmark. We analysed data with thematic analysis.
We identified three main themes with matching sub-themes: Working procedures (Agenda setting, Workflow, Dialogue), Knowledge sharing (AYAs' needs and ideas, Areas of expertise), Influence (Decisions, Ownership). Generally, the participants experienced an equal dialogue with professionals and felt they had the final say on decisions.
This study produced specific suggestions on how to involve AYAs to a high extent. Based on AYAs' own perceptions of involvement, AYAs', professionals' and shared determination areas were illuminated. Additionally, the AYAs highlighted how the professionals gave feedback during co-creation processes, which may inspire future service user involvement projects.
服务使用者的参与有助于改善医疗服务，从而改善患者的就医体验。然而，对于青少年和青年（AYAs）在实际参与过程中的体验以及按照他们的看法如何实现高度参与，我们了解不足。
探讨：（1）患有癌症的青少年和青年在参与三项不同的服务使用者参与倡议（开发一款应用程序、编写一本书以及青年小组会议）过程中的参与体验，以及（2）青少年和青年对他们与专业人员之间的决定因素和合作领域的看法。
对12名年龄在16至29岁之间、患有癌症且参与过丹麦哥本哈根大学医院的青年癌症支持中心及社会组织“癌症工程”（Kræftværket）至少一项服务使用者倡议的青少年和青年进行了个体半结构化访谈。我们采用主题分析法对数据进行了分析。
我们确定了三个主要主题及相应的子主题：工作程序（议程设定、工作流程、对话）、知识共享（青少年和青年的需求与想法、专业领域）、影响力（决策、自主权）。总体而言，参与者体验到与专业人员进行了平等对话，并认为他们在决策上有最终决定权。
本研究针对如何高度吸纳青少年和青年参与提出了具体建议。基于青少年和青年自身对参与的看法，明确了青少年和青年、专业人员以及共同的决定因素领域。此外，青少年和青年强调了专业人员在共同创造过程中如何提供反馈，这可能会为未来的服务使用者参与项目带来启发。
