PDF(Pubmed)
Abstract：
Background: 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.Objectives: 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.Methods: 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.Results: 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.Conclusions: 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.
A collaborative process with parentally bereaved adolescents to develop a psychosocial self-management mobile app for adolescents in grief was described and evaluated.Adolescents made significant contributions, took ownership, and experienced having influence over the decisions made, which increased the relevance of the intervention.The collaborative process reached the intended level of participation and created a positive and meaningful experience for the adolescents.
A collaborative process with parentally bereaved adolescents to develop a psychosocial self-management mobile app for adolescents in grief was described and evaluated.Adolescents made significant contributions, took ownership, and experienced having influence over the decisions made, which increased the relevance of the intervention.The collaborative process reached the intended level of participation and created a positive and meaningful experience for the adolescents.
摘要：
背景：在童年时期失去家庭成员是一种潜在的创伤事件，会增加心理健康困难的风险。青少年有权在与他们相关的研究中表达他们的观点，但是很少有研究将失去亲人的青少年作为合作者（即患者和公众参与（PPI））。此外，为了确保有意义和非象征性的参与，失去亲人的青少年的参与水平和参与研究的经验需要评估。目标：目的是描述和评估与失去亲人的青少年合作的PPI过程，以开发针对悲伤青少年的自我管理移动应用程序。方法：PPI过程由四个研讨会组成，在此期间，应用程序的徽标，颜色,name,内容,与六名13-18岁的失去父母的青少年讨论了布局。青少年是通过一个非营利组织招募的，该组织为悲伤的青少年提供支持。使用参与者的观察和青少年完成的在线调查记录和评估PPI过程，涵盖社会背景的主题，参与,和影响力。结果：青少年认为社会环境舒适、包容，他们的知识是有价值的。他们的参与以所有权为特征，并出于帮助有类似经历的其他人的愿望。青少年参与PPI活动的能力得到了研究人员的支持，尽管具有挑战性的任务可能使参与变得更加困难。在整个PPI活动中，青少年贡献了相关的投入，并报告了感觉有影响力。这项研究达到了预期的参与水平，似乎充分实现了青少年的参与权。结论：参与经历过潜在创伤事件的青少年，比如失去一个家庭成员,在研究中可以增强研究的整体相关性。此外，它可以为参与的青少年带来有意义和积极的体验，同时也实现了他们的基本参与权。
描述并评估了与失去父母的青少年合作，为悲伤中的青少年开发心理社会自我管理移动应用程序的过程。青少年做出了重大贡献，取得了所有权，并且对所做的决定有影响力，这增加了干预的相关性。合作过程达到了预期的参与水平，并为青少年创造了积极而有意义的经验。
描述并评估了与失去父母的青少年合作，为悲伤中的青少年开发心理社会自我管理移动应用程序的过程。青少年做出了重大贡献，取得了所有权，并且对所做的决定有影响力，这增加了干预的相关性。合作过程达到了预期的参与水平，并为青少年创造了积极而有意义的经验。
