Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
Department of Social Work, Stockholm University, Stockholm, Sweden.
Eur J Psychotraumatol. 2024;15(1):2375139. doi: 10.1080/20008066.2024.2375139. Epub 2024 Jul 12.
Losing a family member during childhood is a potentially traumatic event and increases the risk of mental health difficulties. Adolescents have the right to express their views in research of relevance to them, but few studies have involved bereaved adolescents as collaborators (i.e. Patient and Public Involvement (PPI)). Furthermore, to ensure meaningful and non-tokenistic involvement, bereaved adolescents' levels of participation and experiences of taking part in research need to be evaluated. The aim was to describe and evaluate a PPI process working with bereaved adolescents to develop a self-management mobile app for adolescents in grief. The PPI process consisted of four workshops during which the app's logo, colours, name, content, and layout were discussed with six parentally bereaved adolescents aged 13-18 years. The adolescents were recruited through a non-profit organisation providing support for adolescents in grief. The PPI process was documented and evaluated using participant observations and an online survey completed by the adolescents, covering the themes of social context, participation, and influence. The adolescents perceived the social context as comfortable and inclusive, where their knowledge was valued. Their participation was characterised by ownership and motivated by a desire to help others with similar experiences. The adolescents' ability to participate in PPI activities was assisted by the researchers' flexibility, although challenging assignments may have made participation harder. Throughout PPI activities, adolescents contributed with relevant input and reported feeling influential. The study reached the intended levels of participation and appeared to adequately fulfil the adolescents' right to participation. Engaging adolescents who have undergone a potentially traumatic event, such as the loss of a family member, in research can enhance the overall relevance of the study. Moreover, it can entail a meaningful and positive experience for the participating adolescents, while also fulfilling their fundamental right to participation.
在儿童时期失去亲人是一个潜在的创伤事件，并增加了心理健康困难的风险。青少年有权在与其相关的研究中表达自己的观点，但很少有研究让失去亲人的青少年作为合作者参与（即患者和公众参与（PPI））。此外，为了确保有意义且非象征性的参与，需要评估失去亲人的青少年的参与水平和参与研究的经验。目的是描述和评估与失去亲人的青少年合作的 PPI 过程，为悲伤中的青少年开发自我管理的移动应用程序。PPI 过程包括四个研讨会，在此期间，与六名 13-18 岁的父母丧亲的青少年讨论了应用程序的徽标、颜色、名称、内容和布局。这些青少年是通过一个非营利组织招募的，该组织为悲伤中的青少年提供支持。使用参与者观察和青少年在线完成的调查记录和评估了 PPI 过程，涵盖了社会背景、参与和影响等主题。青少年认为社会背景舒适且包容，他们的知识受到重视。他们的参与特点是拥有感，并受到帮助有类似经历的其他人的愿望所驱动。尽管具有挑战性的任务可能使参与更加困难，但研究人员的灵活性帮助了青少年参与 PPI 活动的能力。在整个 PPI 活动中，青少年提供了相关的投入，并表示感到有影响力。该研究达到了预期的参与水平，似乎充分满足了青少年的参与权。让经历过潜在创伤事件（例如失去亲人）的青少年参与研究可以提高研究的整体相关性。此外，这对参与的青少年来说可能是一种有意义且积极的体验，同时也履行了他们的基本参与权。
