Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
School of Education, Health and Social Studies, Dalarna University, Falun, Sweden.
Health Expect. 2021 May;24 Suppl 1(Suppl 1):30-39. doi: 10.1111/hex.12990. Epub 2019 Nov 9.
Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and evaluate PPI. Despite these efforts, the evidence base remains relatively weak. A substantive methodological development is required. This is particularly important for vulnerable groups within society, for whom PPI can be challenging but has the potential to play a transformative role in shaping research.
To describe the group dynamic characteristics and immediate impact of PPI from the user representatives' perspective in a case study of refugee involvement in the development of mental health intervention research. To pilot and methodologically appraise the Active Involvement of Users in Research Observation Schedule and Questionnaire.
The Active Involvement of Users in Research Observation Schedule and Questionnaire were administered together with a focus group discussion.
'Refugee Advisors' were involved in the development of a randomized controlled trial protocol evaluating a brief group intervention for refugee children experiencing symptoms of post-traumatic stress in Sweden.
The multi-method approach demonstrated good feasibility. There were clear examples of how the advisors influenced research development. The advisors described a perceived impact on the research, equality and acceptance, and knowledge gain. A sense of appreciation and empowerment was also interpreted. However, potential issues relating to the relevance of contributions and use of an interpreter were identified.
The methodological approach piloted in this study offers a promising, rigorous way to evaluate PPI. The research tools require further refinement and validation.
患者和公众参与（PPI）取得了重大进展，包括制定了关于如何进行、报告和评估 PPI 的指南。尽管做出了这些努力，但证据基础仍然相对薄弱。需要进行实质性的方法学发展。对于社会中的弱势群体来说，这一点尤为重要，因为对于他们来说，PPI 可能具有挑战性，但有可能在塑造研究方面发挥变革作用。
从用户代表的角度描述难民参与心理健康干预研究发展过程中的 PPI 的群体动态特征和即时影响。试点并从方法论上评估用户积极参与研究观察表和问卷。
同时使用用户积极参与研究观察表和问卷进行焦点小组讨论。
“难民顾问”参与了一项随机对照试验方案的制定，该方案评估了在瑞典为经历创伤后应激症状的难民儿童提供的简短小组干预。
多方法方法具有良好的可行性。有明确的例子表明顾问如何影响研究的发展。顾问们描述了他们对研究、平等和接受以及知识获取的感知影响。还解释了感激和赋权的感觉。但是，发现了与贡献的相关性和口译员使用相关的潜在问题。
本研究中试点的方法学方法提供了一种有前途的、严格的评估 PPI 的方法。研究工具需要进一步改进和验证。
