Patient public engagement and involvement in palliative care research: Co- designing best practices with children and young people in a low- and middle- income settings

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Limited evidence exists on effective approaches for engaging children with serious illnesses, particularly in palliative care and in resource-limited settings. This study aimed to work with children and young people with serious physical illness to co-design processes and practices for meaningful engagement and involvement in palliative care research within resource-limited settings. Methods: A co-design workshop approach was used to develop best practices for engaging and involving children in research. Twenty participants living with serious illnesses were purposively recruited from three heterogeneous tertiary care services in Uganda. Guided by the NIHR framework of public engagement and involvement, workshops were facilitated by members of a multi-disciplinary team, parents, and caregivers. The resulting practices were piloted in our research with the advisory involvement of the young people. Results: The process established 9 principles for engaging and involving children in palliative care research were co-designed. Examples include: Involve children early to ensure that objectives, questions and outputs are relevant to their needs and concerns; Creative and flexible co-design of workshop and meeting agendas makes sessions enjoyable, thus increasing attendance; Involvement of children in the design of research study materials ensures that they are child-centred and easily understood; Sharing decision-making power with children to strengthen efficiency, coordination, communication, and group management. Conclusions: This study presents approaches to engaging children in research and highlights some of the benefits of doing so. Working collaboratively, strategies were co-designed for engaging and involving children with serious illnesses across the research life cycle. The process produces child-centred research practices, outputs, and dissemination strategies, and provides practical models for workshop agendas and guidance on managing child advisory groups. These findings can inform future research, practice, and policy to ensure children are meaningfully represented in palliative care research and promote more inclusive and responsive research practices. Palliative Care child engagement resource-limited settings child-centred practices research involvement co-design Figures Figure 1 Plain English summary It is widely recognized as a best practice to involve children in research to ensure that studies directly address their actual needs. However, there is very little guidance on how to effectively engage children facing serious illnesses, particularly within palliative care and in settings with limited resources. To bridge this gap, a study in Uganda worked directly with 20 young people living with serious physical illnesses. Through a series of interactive "co-design" workshops, a multidisciplinary research team, alongside parents and caregivers, collaborated with these young patients to figure out the best ways to include them in health research. We established nine key principles for involving young people in palliative care studies. Important takeaways include the need to bring children into the process early so the research goals are relevant to their personal concerns, and the use of creative, flexible meeting agendas to make the experience enjoyable and boost attendance. Furthermore, having children help design study materials ensures that the information is actually easy for other young people to understand. The study also found that sharing decision-making power with children greatly improves communication, efficiency, and group coordination. Ultimately, this project highlights the profound benefits of working collaboratively with young patients across the entire research life cycle. By applying these newly co-designed strategies and practical workshop models, future researchers, healthcare practitioners, and policymakers can ensure that studies are truly child-centered, inclusive, and responsive to the real needs of children Introduction Globally, it is estimated that over 21 million children live with serious health conditions that could benefit from palliative care, and the majority of these (98%) live in low-and-middle income countries 1 . Palliative care improves patient and family outcomes of care and alleviates suffering associated with serious illnesses 2 . The World Health Organisation (WHO) recommends palliative care as an essential health service under Universal Health Coverage, emphasising the need for person-centred care 3 . However, access to palliative care is severely limited 4 . Person-centred care focuses on individuals, families, and communities as key stakeholders in health systems, who should be involved and engaged 5 . Patient and Public Involvement and Engagement (PPIE) involves active patient participation in research which informs the care that they receive by taking into consideration their experiences 6 . To stimulate the development of person-centred care for children and young people, there is a need to engage and involve them in research, as this shapes the care they receive. Currently, the majority of primary evidence for person-centred care models and their outcomes derives from adults in high-income countries 7 , 8 . Children and young people with lived experience can make valuable input into the design and the delivery of health services 9 . The engagement and involvement of patients has been associated with reduced admissions, and improved efficiency 10 . It is now a recommended strategy for improving the quality of health services 11 , and is in line with the Almaty Declaration for Primary Health Care 12 . Although there is a consensus that there are benefits for engaging and involving patients in research, a dearth of evidence exists on how best to achieve this in practice 13 . The lack of evidence is a major concern in low- and middle-income countries where the need for research is greatest. In a study that established a Young People's Advisory Group in palliative care in Europe, the authors concluded that it was feasible to equip children with research skills using activities that they enjoyed 14 . A scoping review of PPIE with young people who have chronic conditions reported studies with involvement in design, recruitment, data collection, analysis, and dissemination 15 . Cooks et al (2019) identified various approaches to engaging patients in research including collaboration and research planning 16 . However, most existing studies originate from high-income countries and often do not specify strategies used 15 . Evidence on PPIE strategies, associated activities, and impact will move the field move to optimally meaningful engagement 16 . This study aimed to work with children and young people with serious physical illness to co-design processes and practices for meaningful engagement and involvement in palliative care research within resource-limited settings. Methods We used a co-design workshop approach to develop and pilot the processes and practices for engaging and involving young people living with serious illnesses in paediatric palliative care research. Our approach was underpinned by the National Institute for Health Research (NIHR) framework for patient and public engagement and involvement (Table 1 ). Table 1 The NIHR principles for patient and public engagement and involvement Principles 1-Patient and public engagement and involvement should be appropriate and relevant to the local context and research aims 2-Inclusive opportunities -Involve the community at the earliest opportunity and throughout the process 3- Understand your communities 4- Build and open and trusting relationship 5- Facilitate power-sharing 6- Be flexible and creative 7- Embed monitoring, evaluation, and learning Identifying the young people to work with We purposively recruited young people (10–19 years) living with serious illnesses such as cancer, heart failure, HIV, blood disorders, and sickle cell disease currently receiving palliative care from tertiary care facilities in Uganda. We opted for this age group because evidence shows that from the age of 10 years young people can engage in discussions comfortably engage in group discussions, while in-depth interviews work better for the middle age 17 . Inclusion criteria were: a confirmed diagnosis of a life limiting or life-threatening condition; awareness of their diagnosis; aged between 10 and 19 years; willingness to provide assent; availability of parent or guardian to provide informed consent; and the ability to read and write. Young people who did not meet these criteria or who were too unwell to participate in the study (as determined by their treating clinical team)procedures were excluded. Young people were recruited from three tertiary care services: a large tertiary care centre for children living with HIV/AIDS, the National Referral Teaching Hospital Uganda’s for children with cancer, sickle cell, and neurological conditions, and a paediatric palliative care specialist facility. The latter cares for children with cancers who are receiving care from the Uganda Cancer Institute. In such instances the facility offers psychosocial and spiritual care, and the cancer institute offers the physical care including pain and symptom control. The home care service also provides care to children living with HIV/AIDS. Recruitment Working with young people at the HIV service, we co-developed an information flyer describing the engagement activity, inviting them to participate in discussions and a workshop aimed at developing best practices for involving young people in paediatric palliative care research. The young people were approached by their social workers, who provided information about this activity. Those who expressed interest were provided with consent forms (for participants aged 18 years), then assent and guardian consent forms for the minors (for those aged 10–17 years). All materials were provided in their preferred language (English, Luganda or Runyakitara). Participants were given one week to review the information and notify counsellors or social workers of their interest in participating in the two-day workshop, (see Fig. 1 for further details). Ethical approval to conduct the study was obtained from Kings College London, the Mildmay Uganda Research and Ethics Committee (Ref: 0107–2023), and the Uganda National Council for Science and Technology (Ref: HS3578ES). All study participants provided written informed consent or assent prior to participation. Co-design procedures The first workshop was a two-day focus group workshop held on 14th to 15th December 2023 at a Hospital Guest House in Kampala, Uganda. This workshop specifically aimed to gather the perspectives of children and young people living with serious illness and their caregivers into the research process. Participants attended the workshop, including children and young people, caregivers, and members of the research and clinical teams. Participants were drawn from the 3 clinical sites-Mulago Hospital, Mildmay Uganda, Kawempe Home Care and we also had the Ministry of Health representatives. The workshop was facilitated by the team from APCA who guided discussions and ensured that activities were accessible and engaging for children and young people. Facilitators encouraged open participation and supported children and young people to express their views in a comfortable environment. The workshop was conducted over two days, with sessions typically running between 9:00 am and 4:00 pm, including breaks for refreshments, play and lunch. The sessions were designed to be participatory and child friendly (included role play, play, use of games, and videos for learning. Activities included small-group discussions, brainstorming exercises and interactive discussions intended to encourage children to share their perspectives on engaging children in research. The key recommendations were summarised in slides and presented by three representatives from the children and young people’s group. These were adopted for use in the parent study, which needed these best practices to inform their children and young people engagement strategy. The second workshop were held for two days on 22nd and 23rd February 2024, at Makindye Country Club in Uganda and each day ran from approximately 8:00 am to 4:00 pm, with scheduled breaks for tea, play and lunch. The aim of the workshop was to review resources for children’s palliative care leveraging on recommended practices for engaging children and young people in research. The workshop involved presentations on overview of the resources, followed by discussions small and bigger groups which focused on children and young people giving feedback on what could be improved. The feedback was documented by a note taker (LF). At this workshop the useful practices gathered across the three workshops was put together in a document and were reviewed by the members of the team, attending children and young people and their caregivers. Results Participants A total of 20 young people participated in the workshop, of these 10 (50%) were female. The age range was 10–19 years (see Table 2 for details). Table 2 Socio-demographic characteristics of the young people (n = 20) Variable N Study site Mildmay Uganda 8 Mulago National Referral and Teaching Hospital 8 Kawempe Home Care 4 Gender Male 10 Female 10 Age group 10–13 years 10 14–19 years 10 Diagnosis Cancer 6 HIV 8 Sickle cell and other blood disorders 6 Facilitators The workshop moderators included social workers (4), nurses (2), play therapist (1), paediatricians (2), adolescent counsellor (1), parents/guardians (2), clinical officer (1), child life support person (1). Main findings The co-design workshop established nine principles. -Principle 1: Community Engagement and Involvement (CEI) practices should be appropriate and relevant to the local context and research aims The proposed main roles for young people included participating in the assenting/consenting, recruitment, and dissemination of findings. These activities would foster friendship and a sense of belonging among the children and young people. For example, young people with lived experience can articulate details of the study and communicate how certain procedures can affect them and describe strategies for managing any potential distress associated with a procedure. All members were confident they could support the dissemination of study findings using social media fora commonly used by their peers. The young people noted that they should participate in the interpretation or validation of study results. For example, if a study aims to determine the priorities of children and young people living with a serious illness, they can review a list of themes and then provide feedback on how accurately these reflect their real-life concerns as patients and that of their families. “Sometimes findings may not mirror what is important to us, we should be asked if the results are aligned to what we said. Sometimes misinterpretations may occur, also some things can be minimised, yet they matter to us”. Respondent 03 Participants also noted the young people would make an important contribution in reviewing data collection tools and consent forms, to confirm appropriateness of language. They argued that they use a unique language which includes short sentences and simple words and many adults miss out on this. “We can support the peer reviewing of the data collection tools and the assent/consent forms, we know our language. Sometimes documents are written in complicated language which does not work for us, the young people.” Respondent 05–11 years We also identified the important role of young people in reviewing consent forms to confirm appropriateness of language and guiding their fellow young people through the consenting process. Additionally, their participation in research priority setting helps ensure that studies address their actual needs and that best practices are shared with those who need to know about them, leading to positive action on their concerns. -Principle 2: Involve the community at the earliest opportunity and throughout the process Participants identified the need for young people to support and guide the study team at the start of study, and they supported and guided the team through the entire research process. Their ongoing engagement allowed them to advise the study team at all the various stages of the research process, ensuring the research was relevant to their perspectives. -Principle 3: Understand your communities We began with an open discussion about the nature of research to build rapport between the workshop convenors and the young people. This approach helped us learn more about the community and enabled us to work collaboratively to co-design effective methods for communication and dissemination of research findings. -Principle 4: Build and open and trusting relationships The young people proposed several strategies to keep the group connected, and through WhatsApp groups, a regular schedule of meetings or phone calls were arranged via their guardians. It was also recommended that they receive reimbursement for transport costs and a token of appreciation for every meeting attended. The involvement of guardians was emphasised, as some young people required an escort to meetings during the review of assent forms. Guardians also monitored the young people’s safety on the road while traveling to and from meeting venues. Adopting these principles strengthened our working relationship with the young people, and they freely shared their views and contributed valuable input as needed. “ We can have phone calls, or physical visits here for updates or we can use WhatsApp groups. I would say it is important to engage our guardians so that they are aware. They just need to know the dates and the venue for these events .” Participant 07–15 years “ But some of us have to be escorted along, it is important to have our guardians engaged and involved, they can help us in making some decisions .” Participant 03–10 years -Principle 5: Facilitate power-sharing To facilitate power sharing in terms of governance, the group members democratically elected three office bearers: a chairperson, vice chairperson and secretary. Before this election, workshop facilitators briefed group members on the roles and qualities required for each leadership portfolio. Power sharing made group management and decision- making more efficient. The elected leaders were able to engage their peers on issues of communication, mobilisation, and decision-making, and then relay feedback to the study team. -Principle 6: Be flexible and creative For flexibility and creativity, we co-designed processes for engagement with children and young people in palliative care research, and this made all our activities child-centred, inclusive and acceptable. The participants decided that a typical PPIE agenda for young people should include play interludes, music, dance and drama, good meals, and refreshments, and shared learning. The preferred approaches to include studying in groups, role play, use of films, visuals, and illustrations. Below is a typical agenda proposed by the young people (see Fig. 1 ). -Principle 7: Provide children and young people with learning opportunities To empower the young people to support research in different capacities, interpersonal skills, self-confidence, social media engagements, communication and presentation skills, the participants identified a need for training in the following areas (see Table 3 ). Table 3 Training needs identified by the young people Training need n Interpersonal skills and self confidence 20 Professional social media engagement – how to use WhatsApp, Twitter space 20 Communication and presentation skills 18 Compassionate support 17 Research skills 15 The consent process 15 *Multiple response where is asterisk in the table? -Principle 8 Child friendly dissemination of research findings mechanisms The children proposed child several child-centred approaches for sharing study findings. These included using social media channels such as TikTok, Twitter (X) and YouTube, as most young people access information and seek guidance through these platforms. Other avenues proposed included summarising key findings in short booklets, and using music, art, and drama to communicate key messages from the research. An additional option proposed was physical meetings or workshops. Traditional channels, such as radio broadcasts and Information, Education, and Communication materials such as posters, were also considered valuable options. -Principle 9 Governance To maintain the group and foster group cohesion, we co-designed terms of reference and group rules /norms. Key aspects included: The group is a closed group: all members must be living with a serious illness and receiving care from Mulago hospital, Mildmay Uganda or Kawempe Home Care. No new members will be added over the four years of operation. The group’s purpose, governance structure, mode of operation, membership maintenance, and when the group would be dissolved were clearly defined (see Appendix 1 for details). Discussion We aimed to collaborate with children and young people to co-design processes for their engagement and involvement in palliative care research. Through this co-design process, we identified specific activities throughout the research process where children’s input is valuable, such as the reviewing of research information materials, including consent and assent forms. These entry points serve as gateways into increased engagement and involvement of children and young people in palliative care research that directly impacts their care. Evidence shows that engaging children and young people in research processes leads to more child-centred and child friendly processes and positive engagement and involvement 17 . This is in line with United Nations conventions on the rights of children which emphasises the importance of empowering children and young people to use their voices and listening to them by providing developmentally appropriate information to empower them to participate in decisions impacting their lives (Articles 12-15, Article 17) 18 .[ Convention on the Rights of the Child http://www.unicef.org/crc/]. Our study contributes practical evidence on structuring meetings and engagements with children and young people as part of community engagement and involvement. Paying special attention to the need for play as part of the agenda reinforced our previous findings that play is a significant aspect of life for children and young people living with life limiting and life threatening illnesses 19 . Throughout our engagement activities, we worked closely with the multi-disciplinary team of children health professionals and invited parents and caregivers. The involvement of a multi-disciplinary team in the engagement proved especially valuable during smaller group breakout sessions, where each group was facilitated by a team member to support meaningful discussion and participation. The approach of working together in a group enabled rapport and the building of trust, where young people felt comfortable engaging and sharing their views in a safe environment in which every group member was living with a serious illness and the co-facilitators were palliative care providers. We noted that the presence of caregivers for those who wished to have them, added an extra layer of safety, as participants could consult them on certain issues, making decision-making easier. This alliance worked well and supports the child-centred care framework, which places the family at the centre of care. Regarding group dynamics, our engagement shows that for a group to function effectively, its formation should be underpinned by a clear framework outlining the group’s purpose, roles, and inclusion and exclusion criteria. Working with people who have shared experiences improves group cohesion and engagement. Establishing and agreeing on the mode of operation such as the types of activities, frequency of meetings, and other logistic details helped catalyse group involvement and shaped how the group would operate and remain active 20 . A group without clear objectives, agreed upon regulations, and a defined leadership structure, may struggle to achieve its intended goals. In line with the NIHR principle of facilitating power sharing, we found that having democratically elected leaders to represent the members of the child advisory council, (a council that would guide the parent study research team to effectively engage children and young people in their research) improved both coordination, and communication. These leaders effectively navigated coordination and communication to group members, making the mobilization easier and more efficient. Our initial work is already demonstrating positive benefits for engaging children and young people in research. For example, while refining the African version of the Children’s Palliative Care Outcome Scale, the young people highlighted the importance of focusing on the intensity of pain and other symptoms, as this helps them express their level of associated distress, which is a cornerstone of patient-centred palliative care. They also proposed the inclusion of key symptoms the project team had not considered regarding overeating or overfeeding. They attended our cross-national expert meeting to improve the psychometric properties of the tool and were able to engage well. These valuable contributions have directly shaped the current version of the scale. For this engagement to work well, the ethics committee recommended that we have a nurse and doctor on duty in case any of the children and young people gets a medical emergency. This may add an extra layer of complexity in terms of logistics but it is good for risk management. Our findings are consistent with reports from the UK, where the involvement of children and young people in research has provided unique and useful ideas on the design and implementation of research projects 21 . Our findings demonstrate that children are capable of participating in the design and development of measurement tools 22 . For example, engaging and involving children and young people in palliative care research has highlighted concerns of delayed cognitive development 15 and its impact on their social and public lives. This study offers practical guidance on where along the research process pathways it is possible to effectively engage children and young people. It presents child-friendly agendas to guide engagements during meetings, strategies for effective communication, and child-friendly options for results sharing. Most importantly, best practices are co-designed with young people. The study also provides evidence on how to meaningfully engage young people in research, and how to keep the child advisory groups active for continued engagements throughout research processes. We propose that these Africa-specific principles are considered and implemented alongside broader global perspectives on child engagement in palliative care research 17 . Early results indicate positive effects from engaging and involving young people in paediatric palliative care research, even in the initial phases. The Children and young people who participated in this activity identified some training needs which had to be addressed. We argue that if children and young people express some training needs, then it is incumbent on the study team to ensure that these needs are addressed to empower them to engage more effectively. This could call for some additional costs though. Conclusion Using a co-design approach, we developed child-centred principles for engaging and involving children and young people in palliative care research, and have subsequently implemented several recommended practices proposed by the children themselves. This made our research processes more acceptable and responsive to the needs of children and young people. The processes are aligned with the NIHR framework, and when effectively implemented, will lead to meaningful engagement and involvement of children and young people in palliative care research. Abbreviations CEI -Community Engagement and Involvement NIHR- National Institute for Health and Care Research Declarations This study was conducted in accordance with the Declaration of Helsinki. Ethical approval to conduct the study was obtained from Mildmay Uganda Research and Ethics Committee (Ref: 0107-2023). Assent was sought from all participating young people and consent was sought from their guardians. Informed consent was sought from all participating adults. Consent for publication We have not included personal information Availability of data and materials Data and study materials can be accessed by contacting the authors Competing interests The authors declare that they have no competing interests Funding This study was funded by the National Institute for Health and Care Research-GHRUG NIHR134440, for the programme “GHAP: Global Health & Palliative Care”. EN, LF, RH Writing (Original Draft Preparation) Writing (Review and Editing); Visualization. DH, AN, EN, EN Project Administration; Investigation; Supervision. EN, LF, RH, Formal Analysis; Writing (Original Draft Preparation); Writing (Review and Editing). EN, LF, RH, CE, EL, ETK, JN, YK, JK, AN, MM, Conceptualization; Methodology; Writing (Review and Editing). References Connor SR, Downing J, Marston J. Estimating the Global Need for Palliative Care for Children: A Cross-sectional Analysis. J Pain Symptom Manage. 2017;53(20161017):171–7. 10.1016/j.jpainsymman.2016.08.020 . 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Supplementary Files Appendix1.docx Cite Share Download PDF Status: Under Review Version 1 posted Reviewers agreed at journal 06 May, 2026 Reviewers agreed at journal 05 May, 2026 Reviewers agreed at journal 05 May, 2026 Reviewers agreed at journal 30 Apr, 2026 Reviewers invited by journal 30 Apr, 2026 Submission checks completed at journal 27 Apr, 2026 First submitted to journal 25 Apr, 2026 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. 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Namisango","email":"data:image/png;base64,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","orcid":"","institution":"African Palliative Care Association","correspondingAuthor":true,"prefix":"","firstName":"Eve","middleName":"","lastName":"Namisango","suffix":""},{"id":635645912,"identity":"44ae2f35-6cb0-4ff6-be50-712221d4f585","order_by":1,"name":"Lorna K Fraser","email":"","orcid":"","institution":"King's College London","correspondingAuthor":false,"prefix":"","firstName":"Lorna","middleName":"K","lastName":"Fraser","suffix":""},{"id":635645913,"identity":"bbfdefa5-6a13-4cd7-b0f2-fab3490e03f2","order_by":2,"name":"Kennedy Nkhoma","email":"","orcid":"","institution":"King's College London","correspondingAuthor":false,"prefix":"","firstName":"Kennedy","middleName":"","lastName":"Nkhoma","suffix":""},{"id":635645914,"identity":"be95fe5b-4426-4db9-8536-33da6f351b24","order_by":3,"name":"Julia Downing","email":"","orcid":"","institution":"International Children's Palliative Care Network","correspondingAuthor":false,"prefix":"","firstName":"Julia","middleName":"","lastName":"Downing","suffix":""},{"id":635645915,"identity":"8e1633fe-36ef-438b-93fd-846510e81661","order_by":4,"name":"Catherine Evans","email":"","orcid":"","institution":"King's College London","correspondingAuthor":false,"prefix":"","firstName":"Catherine","middleName":"","lastName":"Evans","suffix":""},{"id":635645916,"identity":"64b128a0-c30a-486c-b992-f27e563fb057","order_by":5,"name":"Elizabeth Nabirye","email":"","orcid":"","institution":"Palliative care Education and Research Consortium","correspondingAuthor":false,"prefix":"","firstName":"Elizabeth","middleName":"","lastName":"Nabirye","suffix":""},{"id":635645917,"identity":"2c73b4c6-dc40-464c-aa80-ba6073ad58a3","order_by":6,"name":"Elizabeth Namukwaya","email":"","orcid":"","institution":"Makerere University","correspondingAuthor":false,"prefix":"","firstName":"Elizabeth","middleName":"","lastName":"Namukwaya","suffix":""},{"id":635645918,"identity":"17744912-405d-4b8a-b81d-0e4d09545790","order_by":7,"name":"Emmanuel Luyirika","email":"","orcid":"","institution":"African Palliative Care Association","correspondingAuthor":false,"prefix":"","firstName":"Emmanuel","middleName":"","lastName":"Luyirika","suffix":""},{"id":635645919,"identity":"87690f64-35d5-4f9a-923b-69278f72e09b","order_by":8,"name":"Elly T Katabira","email":"","orcid":"","institution":"Makerere University","correspondingAuthor":false,"prefix":"","firstName":"Elly","middleName":"T","lastName":"Katabira","suffix":""},{"id":635645920,"identity":"fcc5b5f3-e4ca-44c4-87d7-61011e02680c","order_by":9,"name":"Jane Nakaweesi","email":"","orcid":"","institution":"Baylor College of Medicine Children’s Foundation","correspondingAuthor":false,"prefix":"","firstName":"Jane","middleName":"","lastName":"Nakaweesi","suffix":""},{"id":635645921,"identity":"23182545-827c-4157-a108-49680192c805","order_by":10,"name":"Yvonne Karamagi","email":"","orcid":"","institution":"Mildmay Uganda","correspondingAuthor":false,"prefix":"","firstName":"Yvonne","middleName":"","lastName":"Karamagi","suffix":""},{"id":635645922,"identity":"9ccf9603-85b5-4595-a3a6-9bc82e188564","order_by":11,"name":"Juliana Kayaga","email":"","orcid":"","institution":"Makerere University","correspondingAuthor":false,"prefix":"","firstName":"Juliana","middleName":"","lastName":"Kayaga","suffix":""},{"id":635645923,"identity":"46067cd4-a7df-4c45-bcc7-b0d6482c2c23","order_by":12,"name":"Annet Nakirulu","email":"","orcid":"","institution":"Mulago National Specialised Referral and Teaching hospital","correspondingAuthor":false,"prefix":"","firstName":"Annet","middleName":"","lastName":"Nakirulu","suffix":""},{"id":635645924,"identity":"21d0fcab-c7e6-4e22-9002-7f026a86b606","order_by":13,"name":"Dianah Hossana","email":"","orcid":"","institution":"African Palliative Care Association","correspondingAuthor":false,"prefix":"","firstName":"Dianah","middleName":"","lastName":"Hossana","suffix":""},{"id":635645925,"identity":"fb1709c4-3218-4d15-9155-36ccffec3a67","order_by":14,"name":"Moses Muwanga","email":"","orcid":"","institution":"Ministry of Health","correspondingAuthor":false,"prefix":"","firstName":"Moses","middleName":"","lastName":"Muwanga","suffix":""},{"id":635645926,"identity":"685e62f6-b75c-4481-a78b-58d6302aa53f","order_by":15,"name":"Richard Harding","email":"","orcid":"","institution":"King's College London","correspondingAuthor":false,"prefix":"","firstName":"Richard","middleName":"","lastName":"Harding","suffix":""}],"badges":[],"createdAt":"2026-04-21 16:08:17","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-9486840/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-9486840/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":108968577,"identity":"ab73d20c-739b-479d-88c0-10027cc99bd6","added_by":"auto","created_at":"2026-05-11 10:03:37","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":23346,"visible":true,"origin":"","legend":"\u003cp\u003eA co-designed agenda for a workshop involving young people\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-9486840/v1/7857311a96e5ad30b5268cc2.png"},{"id":108977759,"identity":"f7d66676-b039-4ac2-8b5b-deb3684b459d","added_by":"auto","created_at":"2026-05-11 11:32:49","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":274063,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9486840/v1/3b405959-0b74-4c14-9165-a6acee787135.pdf"},{"id":108968578,"identity":"65d73a84-1ff3-46b0-9b6d-a1c4f7c684f9","added_by":"auto","created_at":"2026-05-11 10:03:37","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":21395,"visible":true,"origin":"","legend":"","description":"","filename":"Appendix1.docx","url":"https://assets-eu.researchsquare.com/files/rs-9486840/v1/a8ace0a2847ae53a05c0a1a3.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Patient public engagement and involvement in palliative care research: Co- designing best practices with children and young people in a low- and middle- income settings","fulltext":[{"header":"Plain English summary ","content":"\u003cp\u003eIt is widely recognized as a best practice to involve children in research to ensure that studies directly address their actual needs. However, there is very little guidance on how to effectively engage children facing serious illnesses, particularly within palliative care and in settings with limited resources.\u003c/p\u003e\n\u003cp\u003eTo bridge this gap, a study in Uganda worked directly with 20 young people living with serious physical illnesses. Through a series of interactive \u0026quot;co-design\u0026quot; workshops, a multidisciplinary research team, alongside parents and caregivers, collaborated with these young patients to figure out the best ways to include them in health research.\u003c/p\u003e\n\u003cp\u003eWe established nine key principles for involving young people in palliative care studies. Important takeaways include the need to bring children into the process early so the research goals are relevant to their personal concerns, and the use of creative, flexible meeting agendas to make the experience enjoyable and boost attendance. Furthermore, having children help design study materials ensures that the information is actually easy for other young people to understand. The study also found that sharing decision-making power with children greatly improves communication, efficiency, and group coordination.\u003c/p\u003e\n\u003cp\u003eUltimately, this project highlights the profound benefits of working collaboratively with young patients across the entire research life cycle. By applying these newly co-designed strategies and practical workshop models, future researchers, healthcare practitioners, and policymakers can ensure that studies are truly child-centered, inclusive, and responsive to the real needs of children\u003c/p\u003e"},{"header":"Introduction","content":"\u003cp\u003eGlobally, it is estimated that over 21\u0026nbsp;million children live with serious health conditions that could benefit from palliative care, and the majority of these (98%) live in low-and-middle income countries \u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u003c/sup\u003e. Palliative care improves patient and family outcomes of care and alleviates suffering associated with serious illnesses \u003csup\u003e\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e\u003c/sup\u003e. The World Health Organisation (WHO) recommends palliative care as an essential health service under Universal Health Coverage, emphasising the need for person-centred care \u003csup\u003e\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u003c/sup\u003e. However, access to palliative care is severely limited\u003csup\u003e\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u003c/sup\u003e. Person-centred care focuses on individuals, families, and communities as key stakeholders in health systems, who should be involved and engaged \u003csup\u003e\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e\u003c/sup\u003e. Patient and Public Involvement and Engagement (PPIE) involves active patient participation in research which informs the care that they receive by taking into consideration their experiences \u003csup\u003e\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u003c/sup\u003e. To stimulate the development of person-centred care for children and young people, there is a need to engage and involve them in research, as this shapes the care they receive. Currently, the majority of primary evidence for person-centred care models and their outcomes derives from adults in high-income countries\u003csup\u003e\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u003c/sup\u003e. Children and young people with lived experience can make valuable input into the design and the delivery of health services \u003csup\u003e\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u003c/sup\u003e. The engagement and involvement of patients has been associated with reduced admissions, and improved efficiency \u003csup\u003e\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u003c/sup\u003e. It is now a recommended strategy for improving the quality of health services \u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e, and is in line with the Almaty Declaration for Primary Health Care \u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eAlthough there is a consensus that there are benefits for engaging and involving patients in research, a dearth of evidence exists on how best to achieve this in practice \u003csup\u003e\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u003c/sup\u003e. The lack of evidence is a major concern in low- and middle-income countries where the need for research is greatest. In a study that established a Young People's Advisory Group in palliative care in Europe, the authors concluded that it was feasible to equip children with research skills using activities that they enjoyed \u003csup\u003e\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u003c/sup\u003e. A scoping review of PPIE with young people who have chronic conditions reported studies with involvement in design, recruitment, data collection, analysis, and dissemination \u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e. Cooks et al (2019) identified various approaches to engaging patients in research including collaboration and research planning \u003csup\u003e\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u003c/sup\u003e. However, most existing studies originate from high-income countries and often do not specify strategies used \u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e. Evidence on PPIE strategies, associated activities, and impact will move the field move to optimally meaningful engagement \u003csup\u003e\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eThis study aimed to work with children and young people with serious physical illness to co-design processes and practices for meaningful engagement and involvement in palliative care research within resource-limited settings.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e We used a co-design workshop approach to develop and pilot the processes and practices for engaging and involving young people living with serious illnesses in paediatric palliative care research. Our approach was underpinned by the National Institute for Health Research (NIHR) framework for patient and public engagement and involvement (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThe NIHR principles for patient and public engagement and involvement\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"1\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePrinciples\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1-Patient and public engagement and involvement should be appropriate and relevant to the local context and research aims\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2-Inclusive opportunities -Involve the community at the earliest opportunity and throughout the process\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3- Understand your communities\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4- Build and open and trusting relationship\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5- Facilitate power-sharing\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e6- Be flexible and creative\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7- Embed monitoring, evaluation, and learning\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eIdentifying the young people to work with\u003c/h2\u003e \u003cp\u003eWe purposively recruited young people (10\u0026ndash;19 years) living with serious illnesses such as cancer, heart failure, HIV, blood disorders, and sickle cell disease currently receiving palliative care from tertiary care facilities in Uganda. We opted for this age group because evidence shows that from the age of 10 years young people can engage in discussions comfortably engage in group discussions, while in-depth interviews work better for the middle age\u003csup\u003e\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eInclusion criteria were: a confirmed diagnosis of a life limiting or life-threatening condition; awareness of their diagnosis; aged between 10 and 19 years; willingness to provide assent; availability of parent or guardian to provide informed consent; and the ability to read and write. Young people who did not meet these criteria or who were too unwell to participate in the study (as determined by their treating clinical team)procedures were excluded.\u003c/p\u003e \u003cp\u003eYoung people were recruited from three tertiary care services: a large tertiary care centre for children living with HIV/AIDS, the National Referral Teaching Hospital Uganda\u0026rsquo;s for children with cancer, sickle cell, and neurological conditions, and a paediatric palliative care specialist facility. The latter cares for children with cancers who are receiving care from the Uganda Cancer Institute. In such instances the facility offers psychosocial and spiritual care, and the cancer institute offers the physical care including pain and symptom control. The home care service also provides care to children living with HIV/AIDS.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eRecruitment\u003c/h3\u003e\n\u003cp\u003eWorking with young people at the HIV service, we co-developed an information flyer describing the engagement activity, inviting them to participate in discussions and a workshop aimed at developing best practices for involving young people in paediatric palliative care research. The young people were approached by their social workers, who provided information about this activity. Those who expressed interest were provided with consent forms (for participants aged 18 years), then assent and guardian consent forms for the minors (for those aged 10\u0026ndash;17 years). All materials were provided in their preferred language (English, Luganda or Runyakitara). Participants were given one week to review the information and notify counsellors or social workers of their interest in participating in the two-day workshop, (see Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e for further details).\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eEthical approval\u003c/strong\u003e \u003cp\u003e to conduct the study was obtained from Kings College London, the Mildmay Uganda Research and Ethics Committee (Ref: 0107\u0026ndash;2023), and the Uganda National Council for Science and Technology (Ref: HS3578ES). All study participants provided written informed consent or assent prior to participation.\u003c/p\u003e \u003c/p\u003e\n\u003ch3\u003eCo-design procedures\u003c/h3\u003e\n\u003cp\u003eThe first workshop was a two-day focus group workshop held on 14th to 15th December 2023 at a Hospital Guest House in Kampala, Uganda. This workshop specifically aimed to gather the perspectives of children and young people living with serious illness and their caregivers into the research process. Participants attended the workshop, including children and young people, caregivers, and members of the research and clinical teams. Participants were drawn from the 3 clinical sites-Mulago Hospital, Mildmay Uganda, Kawempe Home Care and we also had the Ministry of Health representatives. The workshop was facilitated by the team from APCA who guided discussions and ensured that activities were accessible and engaging for children and young people. Facilitators encouraged open participation and supported children and young people to express their views in a comfortable environment.\u003c/p\u003e \u003cp\u003eThe workshop was conducted over two days, with sessions typically running between 9:00 am and 4:00 pm, including breaks for refreshments, play and lunch.\u003c/p\u003e \u003cp\u003eThe sessions were designed to be participatory and child friendly (included role play, play, use of games, and videos for learning. Activities included small-group discussions, brainstorming exercises and interactive discussions intended to encourage children to share their perspectives on engaging children in research. The key recommendations were summarised in slides and presented by three representatives from the children and young people\u0026rsquo;s group. These were adopted for use in the parent study, which needed these best practices to inform their children and young people engagement strategy.\u003c/p\u003e \u003cp\u003eThe second workshop were held for two days on 22nd and 23rd February 2024, at Makindye Country Club in Uganda and each day ran from approximately 8:00 am to 4:00 pm, with scheduled breaks for tea, play and lunch. The aim of the workshop was to review resources for children\u0026rsquo;s palliative care leveraging on recommended practices for engaging children and young people in research. The workshop involved presentations on overview of the resources, followed by discussions small and bigger groups which focused on children and young people giving feedback on what could be improved. The feedback was documented by a note taker (LF). At this workshop the useful practices gathered across the three workshops was put together in a document and were reviewed by the members of the team, attending children and young people and their caregivers.\u003c/p\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eA total of 20 young people participated in the workshop, of these 10 (50%) were female. The age range was 10\u0026ndash;19 years (see Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e for details).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSocio-demographic characteristics of the young people (n\u0026thinsp;=\u0026thinsp;20)\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eVariable\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eN\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eStudy site\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMildmay Uganda\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMulago National Referral and Teaching Hospital\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eKawempe Home Care\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eGender\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eAge group\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e10\u0026ndash;13 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e14\u0026ndash;19 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eDiagnosis\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHIV\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSickle cell and other blood disorders\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eFacilitators\u003c/h2\u003e \u003cp\u003e The workshop moderators included social workers (4), nurses (2), play therapist (1), paediatricians (2), adolescent counsellor (1), parents/guardians (2), clinical officer (1), child life support person (1).\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eMain findings\u003c/h3\u003e\n\u003cp\u003eThe co-design workshop established nine principles.\u003c/p\u003e \u003cp\u003e-Principle 1: Community Engagement and Involvement (CEI) practices should be appropriate and relevant to the local context and research aims\u003c/p\u003e \u003cp\u003eThe proposed main roles for young people included participating in the assenting/consenting, recruitment, and dissemination of findings. These activities would foster friendship and a sense of belonging among the children and young people. For example, young people with lived experience can articulate details of the study and communicate how certain procedures can affect them and describe strategies for managing any potential distress associated with a procedure. All members were confident they could support the dissemination of study findings using social media fora commonly used by their peers.\u003c/p\u003e \u003cp\u003eThe young people noted that they should participate in the interpretation or validation of study results. For example, if a study aims to determine the priorities of children and young people living with a serious illness, they can review a list of themes and then provide feedback on how accurately these reflect their real-life concerns as patients and that of their families.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Sometimes findings may not mirror what is important to us, we should be asked if the results are aligned to what we said. Sometimes misinterpretations may occur, also some things can be minimised, yet they matter to us\u0026rdquo;.\u003c/em\u003e Respondent 03\u003c/p\u003e \u003cp\u003e Participants also noted the young people would make an important contribution in reviewing data collection tools and consent forms, to confirm appropriateness of language. They argued that they use a unique language which includes short sentences and simple words and many adults miss out on this.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;We can support the peer reviewing of the data collection tools and the assent/consent forms, we know our language. Sometimes documents are written in complicated language which does not work for us, the young people.\u0026rdquo;\u003c/em\u003e Respondent 05\u0026ndash;11 years\u003c/p\u003e \u003cp\u003e We also identified the important role of young people in reviewing consent forms to confirm appropriateness of language and guiding their fellow young people through the consenting process. Additionally, their participation in research priority setting helps ensure that studies address their actual needs and that best practices are shared with those who need to know about them, leading to positive action on their concerns.\u003c/p\u003e \u003cp\u003e-Principle 2: Involve the community at the earliest opportunity and throughout the process\u003c/p\u003e \u003cp\u003eParticipants identified the need for young people to support and guide the study team at the start of study, and they supported and guided the team through the entire research process. Their ongoing engagement allowed them to advise the study team at all the various stages of the research process, ensuring the research was relevant to their perspectives.\u003c/p\u003e \u003cp\u003e-Principle 3: Understand your communities\u003c/p\u003e \u003cp\u003eWe began with an open discussion about the nature of research to build rapport between the workshop convenors and the young people. This approach helped us learn more about the community and enabled us to work collaboratively to co-design effective methods for communication and dissemination of research findings.\u003c/p\u003e \u003cp\u003e-Principle 4: Build and open and trusting relationships\u003c/p\u003e \u003cp\u003eThe young people proposed several strategies to keep the group connected, and through WhatsApp groups, a regular schedule of meetings or phone calls were arranged via their guardians. It was also recommended that they receive reimbursement for transport costs and a token of appreciation for every meeting attended. The involvement of guardians was emphasised, as some young people required an escort to meetings during the review of assent forms. Guardians also monitored the young people\u0026rsquo;s safety on the road while traveling to and from meeting venues. Adopting these principles strengthened our working relationship with the young people, and they freely shared their views and contributed valuable input as needed.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003eWe can have phone calls, or physical visits here for updates or we can use WhatsApp groups. I would say it is important to engage our guardians so that they are aware. They just need to know the dates and the venue for these events\u003c/em\u003e.\u0026rdquo; Participant 07\u0026ndash;15 years\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eBut some of us have to be escorted along, it is important to have our guardians engaged and involved, they can help us in making some decisions\u003c/em\u003e.\u0026rdquo; Participant 03\u0026ndash;10 years\u003c/p\u003e \u003cp\u003e-Principle 5: Facilitate power-sharing\u003c/p\u003e \u003cp\u003eTo facilitate power sharing in terms of governance, the group members democratically elected three office bearers: a chairperson, vice chairperson and secretary. Before this election, workshop facilitators briefed group members on the roles and qualities required for each leadership portfolio. Power sharing made group management and decision- making more efficient. The elected leaders were able to engage their peers on issues of communication, mobilisation, and decision-making, and then relay feedback to the study team.\u003c/p\u003e \u003cp\u003e-Principle 6: Be flexible and creative\u003c/p\u003e \u003cp\u003eFor flexibility and creativity, we co-designed processes for engagement with children and young people in palliative care research, and this made all our activities child-centred, inclusive and acceptable. The participants decided that a typical PPIE agenda for young people should include play interludes, music, dance and drama, good meals, and refreshments, and shared learning. The preferred approaches to include studying in groups, role play, use of films, visuals, and illustrations. Below is a typical agenda proposed by the young people (see Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003e-Principle 7: Provide children and young people with learning opportunities\u003c/p\u003e \u003cp\u003eTo empower the young people to support research in different capacities, interpersonal skills, self-confidence, social media engagements, communication and presentation skills, the participants identified a need for training in the following areas (see Table \u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eTraining needs identified by the young people\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTraining need\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003en\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInterpersonal skills and self confidence\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e20\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eProfessional social media engagement \u0026ndash; how to use WhatsApp, Twitter space\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e20\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCommunication and presentation skills\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e18\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCompassionate support\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e17\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eResearch skills\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThe consent process\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"2\"\u003e*Multiple response where is asterisk in the table?\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e-Principle 8 Child friendly dissemination of research findings mechanisms\u003c/p\u003e \u003cp\u003eThe children proposed child several child-centred approaches for sharing study findings. These included using social media channels such as TikTok, Twitter (X) and YouTube, as most young people access information and seek guidance through these platforms. Other avenues proposed included summarising key findings in short booklets, and using music, art, and drama to communicate key messages from the research. An additional option proposed was physical meetings or workshops. Traditional channels, such as radio broadcasts and Information, Education, and Communication materials such as posters, were also considered valuable options.\u003c/p\u003e \u003cp\u003e-Principle 9 Governance\u003c/p\u003e \u003cp\u003eTo maintain the group and foster group cohesion, we co-designed terms of reference and group rules /norms. Key aspects included:\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eThe group is a closed group: all members must be living with a serious illness and receiving care from Mulago hospital, Mildmay Uganda or Kawempe Home Care. No new members will be added over the four years of operation.\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eThe group\u0026rsquo;s purpose, governance structure, mode of operation, membership maintenance, and when the group would be dissolved were clearly defined (see \u003cspan refid=\"Sec10\" class=\"InternalRef\"\u003eAppendix 1\u003c/span\u003e for details).\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e"},{"header":"Discussion ","content":"\u003cp\u003eWe aimed to collaborate with children and young people to co-design processes for their engagement and involvement in palliative care research.\u003c/p\u003e\n\u003cp\u003eThrough this co-design process, we identified specific activities throughout the research process where children\u0026rsquo;s input is valuable, such as the reviewing of research information materials, including consent and assent forms. These entry points serve as gateways into increased engagement and involvement of children and young people in palliative care research that directly impacts their care.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eEvidence shows that engaging children and young people in research processes leads to more child-centred and child friendly processes and positive engagement and involvement \u003csup\u003e17\u003c/sup\u003e. This is in line with United Nations conventions on the rights of children which emphasises the importance of empowering children and young people to use their voices and listening to them by providing developmentally appropriate information to empower them to participate in decisions impacting their lives (Articles 12-15, Article 17)\u003csup\u003e18\u003c/sup\u003e.[ Convention on the Rights of the Child http://www.unicef.org/crc/].\u003c/p\u003e\n\u003cp\u003eOur study contributes practical evidence on structuring meetings and engagements with children and young people as part of community engagement and involvement. Paying special attention to the need for play as part of the agenda reinforced our previous findings that play is a significant aspect of life for \u0026nbsp;children and young people living with life limiting and life threatening illnesses \u003csup\u003e19\u003c/sup\u003e. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThroughout our engagement activities, we worked closely with the multi-disciplinary team of children health professionals and invited parents and caregivers. The involvement of a multi-disciplinary team in the engagement proved especially valuable during smaller group breakout sessions, where each group was facilitated by a team member to support meaningful discussion and participation.\u003c/p\u003e\n\u003cp\u003eThe approach of working together in a group enabled rapport and the building of trust, where young people felt comfortable engaging and sharing their views in a safe environment in which every group member was living with a serious illness and the co-facilitators were palliative care providers. We noted that the presence of caregivers for those who wished to have them, added an extra layer of safety, as participants could consult them on certain issues, making decision-making easier. This alliance worked well and supports the child-centred care framework, which places the family at the centre of care.\u003c/p\u003e\n\u003cp\u003eRegarding group dynamics, our engagement shows that for a group to function effectively, its formation should be underpinned by a clear framework outlining the group\u0026rsquo;s purpose, roles, and inclusion and exclusion criteria. Working with people who have shared experiences improves group cohesion and engagement. Establishing and agreeing on the mode of operation such as the types of activities, frequency of meetings, and other logistic details helped catalyse \u0026nbsp;group involvement and shaped how the group would operate and remain active \u003csup\u003e20\u003c/sup\u003e. A group without clear objectives, agreed upon regulations, and a defined leadership structure, may struggle to achieve its intended goals.\u003c/p\u003e\n\u003cp\u003eIn line with the NIHR principle of facilitating power sharing, we found that having democratically elected leaders to represent the members of the child advisory council, (a council that would guide the parent study research team to effectively engage children and young people in their research) improved both coordination, and communication. These leaders effectively navigated coordination and communication to group members, making the mobilization easier and more efficient.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOur initial work is already demonstrating positive benefits for engaging children and young people in research. For example, while refining the African version of the Children\u0026rsquo;s Palliative Care Outcome Scale, the young people highlighted the importance of focusing on the intensity of pain and other symptoms, as this helps them express their level of associated distress, which is a cornerstone of patient-centred palliative care. They also proposed the inclusion of key symptoms the project team had not considered regarding overeating or overfeeding. They attended our cross-national expert meeting to improve the psychometric properties of the tool and were able to engage well. These valuable contributions have directly shaped the current version of the scale. For this engagement to work well, the ethics committee recommended that we have a nurse and doctor on duty in case any of the children and young people gets a medical emergency. This may add an extra layer of complexity in terms of logistics but it is good for risk management.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOur findings are consistent with reports from the UK, where the involvement of children and young people in research has provided unique and useful ideas on the design and implementation of research projects \u003csup\u003e21\u003c/sup\u003e.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOur findings demonstrate that children are capable of participating in the design and development of measurement tools \u003csup\u003e22\u003c/sup\u003e. For example, engaging and involving children and young people in palliative care research has highlighted concerns of delayed cognitive development \u003csup\u003e15\u003c/sup\u003e and its impact on their social and public lives. \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis study offers practical guidance on where along the research process pathways it is possible to effectively engage children and young people. It presents child-friendly agendas to guide engagements during meetings, strategies for effective communication, and child-friendly options for results sharing. Most importantly, best practices are co-designed with young people. The study also provides evidence on how to meaningfully engage young people in research, and how to keep the child advisory groups active for continued engagements throughout research processes. We propose that these Africa-specific principles are considered and implemented alongside broader global perspectives on child engagement in palliative care research\u003csup\u003e17\u003c/sup\u003e. Early results indicate positive effects from engaging and involving young people in paediatric palliative care research, even in the initial phases. \u0026nbsp;The Children and young people who participated in this activity identified some training needs which had to be addressed. We argue that if children and young people express some training needs, then it is incumbent on the study team to ensure that these needs are addressed to empower them to engage more effectively. This could call for some additional costs though.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eUsing a co-design approach, we developed child-centred principles for engaging and involving children and young people in palliative care research, and have subsequently implemented several recommended practices proposed by the children themselves. This made our research processes more acceptable and responsive to the needs of children and young people. The processes are aligned with the NIHR framework, and when effectively implemented, will lead to meaningful engagement and involvement of children and young people in palliative care research.\u0026nbsp;\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eCEI -Community Engagement and Involvement\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eNIHR-\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003eNational Institute for Health and Care Research\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eThis study was conducted in accordance with the Declaration of Helsinki. Ethical approval to conduct the study was obtained from Mildmay Uganda Research and Ethics Committee (Ref: 0107-2023). Assent was sought from all participating young people and consent was sought from their guardians. Informed consent was sought from all participating adults.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eConsent for publication\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eWe have not included personal information\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAvailability of data and materials\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eData and study materials can be accessed by contacting the authors\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eCompeting interests\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFunding\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis study was funded by the National Institute for Health and Care Research-GHRUG NIHR134440, for the programme \u0026ldquo;GHAP: Global Health \u0026amp; Palliative Care\u0026rdquo;.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eEN, LF, RH Writing (Original Draft Preparation) Writing (Review and Editing); Visualization.\u003c/p\u003e\n\u003cp\u003eDH, AN, EN, EN Project Administration; Investigation; Supervision.\u003c/p\u003e\n\u003cp\u003eEN, LF, RH, Formal Analysis; Writing (Original Draft Preparation); Writing (Review and Editing).\u003c/p\u003e\n\u003cp\u003eEN, LF, RH, CE, EL, ETK, JN, YK, JK, AN, MM, Conceptualization; Methodology; Writing (Review and Editing).\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eConnor SR, Downing J, Marston J. 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Patient. 2023;16:473\u0026ndash;83. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1007/s40271-023-00627-w\u003c/span\u003e\u003cspan address=\"10.1007/s40271-023-00627-w\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Palliative Care, child engagement, resource-limited settings, child-centred practices, research involvement, co-design","lastPublishedDoi":"10.21203/rs.3.rs-9486840/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-9486840/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground:\u003c/strong\u003e \u0026nbsp;Engaging children in research processes is recognised as best practice, as it ensures studies are relevant and responsive to their needs. Limited evidence exists on effective approaches for engaging children with serious illnesses, particularly in palliative care and in resource-limited settings.\u003c/p\u003e\n\u003cp\u003eThis study aimed to work with children and young people with serious physical illness to co-design processes and practices for meaningful engagement and involvement in palliative care research within resource-limited settings.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods: \u003c/strong\u003eA co-design workshop approach was used to develop best practices for engaging and involving children in research. Twenty participants living with serious illnesses were purposively recruited from three heterogeneous tertiary care services in Uganda. Guided by the NIHR framework of public engagement and involvement, workshops were facilitated by members of a multi-disciplinary team, parents, and caregivers. The resulting practices were piloted in our research with the advisory involvement of the young people.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults: \u003c/strong\u003eThe process established 9 principles for engaging and involving children in palliative care research were co-designed. Examples include: Involve children early to ensure that objectives, questions and outputs are relevant to their needs and concerns; \u0026nbsp;Creative and flexible co-design of workshop and meeting agendas makes sessions enjoyable, thus increasing attendance; Involvement of children in the design of research study materials ensures that they are child-centred and easily understood; \u0026nbsp;Sharing decision-making power with children to strengthen efficiency, coordination, communication, and group management.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions: \u003c/strong\u003eThis study presents approaches to engaging children in research and highlights some of the benefits of doing so. Working collaboratively, strategies were co-designed for engaging and involving children with serious illnesses across the research life cycle. The process produces child-centred research practices, outputs, and dissemination strategies, and provides practical models for workshop agendas and guidance on managing child advisory groups. These findings can inform future research, practice, and policy to ensure children are meaningfully represented in palliative care research and promote more inclusive and responsive research practices.\u003c/p\u003e","manuscriptTitle":"Patient public engagement and involvement in palliative care research: Co- designing best practices with children and young people in a low- and middle- income settings","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-05-11 10:03:33","doi":"10.21203/rs.3.rs-9486840/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"reviewerAgreed","content":"127788811463054960066944391255509977769","date":"2026-05-06T15:37:40+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"78304683163365205115427015269453816279","date":"2026-05-05T20:22:51+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"204596335389695750796376439216665667344","date":"2026-05-05T09:08:21+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"127788811463054960066944391255509977769","date":"2026-04-30T10:10:27+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-04-30T08:53:47+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-04-28T02:50:30+00:00","index":"","fulltext":""},{"type":"submitted","content":"Research Involvement and Engagement","date":"2026-04-25T20:13:38+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"02780e6a-8025-46bb-b473-dc00a90942e7","owner":[],"postedDate":"May 11th, 2026","published":true,"recentEditorialEvents":[{"type":"reviewerAgreed","content":"127788811463054960066944391255509977769","date":"2026-05-06T15:37:40+00:00","index":34,"fulltext":""},{"type":"reviewerAgreed","content":"78304683163365205115427015269453816279","date":"2026-05-05T20:22:51+00:00","index":33,"fulltext":""},{"type":"reviewerAgreed","content":"204596335389695750796376439216665667344","date":"2026-05-05T09:08:21+00:00","index":32,"fulltext":""},{"type":"reviewerAgreed","content":"127788811463054960066944391255509977769","date":"2026-04-30T10:10:27+00:00","index":29,"fulltext":""},{"type":"reviewersInvited","content":"21","date":"2026-04-30T08:53:47+00:00","index":"","fulltext":""}],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-05-11T10:03:33+00:00","versionOfRecord":[],"versionCreatedAt":"2026-05-11 10:03:33","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9486840","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9486840","identity":"rs-9486840","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}