Nixon Laura S, Hudson Nicky, Culley Lorraine, Lakhanpaul Maya, Robertson Noelle, Johnson Mark R D, McFeeters Melanie, Johal Narynder, Hamlyn-Williams Charlotte, Boo Yebeen Ysabelle, Lakhanpaul Monica
Population, Policy and Practice, UCL Great Ormond Street Institute of Child Health, London, UK.
School of Applied Social Sciences, De Montfort University, Leicester, UK.
Res Involv Engagem. 2022 Feb 28;8(1):9. doi: 10.1186/s40900-022-00342-0.
Participatory research is an empowering process through which individuals can increase control over their lives, and allows researchers/clinicians to gain a clearer understanding of a child's needs. However, involving children in participatory research is still relatively novel, despite national and international mandates to engage children in decision making. This paper draws on the learnings from designing the Management and Intervention for Asthma (MIA) study, which used a collaborative participatory method to develop an intervention-planning framework for South Asian children with asthma. There are currently 1 million children in the UK receiving treatment for asthma, making it one of the most prevalent chronic childhood illnesses. Symptoms of asthma are often underrecognized in children from South Asian communities in the UK, contributing to increased disease severity and increased attendance at the emergency department compared to White British children. Despite this, ethnic minorities are often excluded from research and thus absent from the 'evidence base', making it essential to hear their perspectives if health inequalities are to be successfully addressed. We worked alongside healthcare professionals, community facilitators, parents, and children to identify the key concerns and priorities they had and then designed the framework around their needs. Reflecting on the process, we identified several key considerations that need to be addressed when co-developing interventions with children. These include the power dynamics between the parent/researcher and child; navigating the consent/assent process; how parental involvement might affect the research; establishing a convenient time and location; how to keep children engaged throughout the process; tailoring activities to different levels of ability; and accounting for cultural differences. These factors were considered by the researchers when designing the study, however, implementing them was not without its challenges and highlighted the need for researchers to develop expertise in this field. Tailoring existing research methods allowed us to explore children's perceptions, priorities, and experiences of illness more effectively. However, involving children in participatory research is a complex undertaking, and researchers need to ensure that they have the expertise, time, and resources necessary to be able to fully support the needs of child participants before deciding to commit to this approach.
参与式研究是一个赋权过程，通过这个过程，个人可以增强对自己生活的掌控力，同时让研究人员/临床医生更清楚地了解儿童的需求。然而，尽管有国家和国际层面让儿童参与决策的要求，但让儿童参与参与式研究仍然相对新颖。本文借鉴了设计哮喘管理与干预（MIA）研究的经验，该研究采用合作参与式方法为患有哮喘的南亚儿童制定干预规划框架。目前在英国有100万儿童接受哮喘治疗，这使其成为最常见的儿童慢性疾病之一。在英国，南亚社区儿童的哮喘症状往往未得到充分认识，与英国白人儿童相比，这导致疾病严重程度增加，急诊就诊率上升。尽管如此，少数民族往往被排除在研究之外，因此也不在“证据基础”之中，所以如果要成功解决健康不平等问题，听取他们的观点至关重要。我们与医疗保健专业人员、社区促进者、家长和儿童合作，确定他们的主要关切和优先事项，然后围绕他们的需求设计框架。反思这个过程，我们确定了在与儿童共同制定干预措施时需要解决的几个关键考虑因素。这些因素包括家长/研究人员与儿童之间的权力动态；处理同意/赞成过程；家长参与可能如何影响研究；确定方便的时间和地点；如何让儿童在整个过程中保持参与；根据不同能力水平调整活动；以及考虑文化差异。研究人员在设计研究时考虑了这些因素，然而，实施这些因素并非没有挑战，这突出表明研究人员需要在该领域发展专业知识。调整现有的研究方法使我们能够更有效地探索儿童对疾病的看法、优先事项和经历。然而，让儿童参与参与式研究是一项复杂的任务，研究人员在决定采用这种方法之前，需要确保他们具备必要的专业知识、时间和资源，以便能够充分支持儿童参与者的需求。
