Pediatric Migrant Health in Europe PSP protocol

Purpose of the PSP and background

The purpose of this protocol is to clearly set out the aims, objectives and commitments of the Pediatric Migrant Health in Europe Priority Setting Partnership (PSP) in line with James Lind Alliance (JLA) principles.  

The principles of the JLA are:

• Transparency: openness of process, including an audit trail of original submitted uncertainties, to final prioritised list
• Inclusiveness: balanced inclusion of the perspectives of people with lived experience, caregivers and health and care professionals
• Evidence base: ensuring candidate questions for prioritisation are formally verified as unanswered.
• Exclusion of researchers in prioritisation (they may be involved and helpful in all other aspects of the process)
• Exclusion of groups/organisations that have significant competing or commercial interests, for example pharmaceutical companies.

The aim of a PSP is to help ensure that those who fund health research are aware of what really matters to people with lived experience, caregivers and health and care professionals who look after them. PSPs bring these people together to identify and prioritise the unanswered questions that they agree are the most important for research to address in their topic area. This provides a valuable perspective to the research agenda, which may differ from the research priorities of industry, academics and governments.

The Protocol is a JLA requirement and will be published on the PSP’s page of the JLA website. The Steering Group will review the Protocol regularly and any updated version will be sent to the JLA.

The JLA is a non-profit making initiative, established in 2004. The National Institute for Health and Care Research (NIHR) coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Coordinating Centre (NIHRCC), University of Southampton.  

Migration is a driver and enabler of sustainable development, and migrant health an important part of public health. Yet many health systems continue to be tailored exclusively to the non-migrant population. This leads to important health disparities for migrants and refugees, especially children and adolescents.

In this PSP, different groups of people directly affected by the (lack of) research in pediatric migrant health join their perspectives to prioritise research questions that need to be addressed.

In 2023, the Refugees and Migrants in Europe – Adolescent and Child Health (REACH) network became a Special Advisory Group of the European Academy of Pediatrics (EAP). It is composed of approximately 20 healthcare professionals actively involved in pediatric migrant healthcare in various countries of the European Region (e.g. Italy, Denmark, Germany, Switzerland, Netherlands, Poland, Great Britain, France). They are committed to the goal of providing equitable, excellent healthcare to all children and adolescents – regardless of their origin. Some REACH group members are ‘double experts’; meaning that they have both lived experience of migration as well as experience working in the healthcare sector. In this PSP, the perspectives of the REACH health workers' are combined with those of parents/carers of children with migration experience using the host countries’ healthcare systems and perspectives of people who migrated when they were still children/adolescents themselves.

The Mi-CARE PSP is supported by a networking grant of the Academy of Medical Sciences (UK) and is intended to be the starting point for future collaboration projects, such as larger research initiatives focusing on some of the identified research priorities or uncertainties.
 

Objectives and scope of the PSP

The objectives of the Mi-CARE PSP are to:

• work with people with lived experience, caregivers as well as health and care professionals to identify unanswered questions about the health and optimal delivery of healthcare to children and adolescents with migration experience in Europe (including the whole spectrum from forced to voluntary migration) 
• to agree by consensus a prioritised list of those unanswered questions, for research
• to publicise the results of the PSP and process
• to take the results to research commissioning bodies to be considered for funding.

The scope of the PSP is defined as:

• Any aspect of the medical prevention, diagnosis, treatment, management and care of children and adolescents with migration experience in Europe
• Questions that may inform the optimal design of inclusive, effective, and resilient healthcare systems will be particularly focused upon
• We want to include a diversity of perspectives regarding the following aspects:
  • care levels: e.g. arrival centre, consultancy for general population (primary care), hospital (secondary, tertiary care)
  • regions of healthcare delivery: e.g. Eastern Europe; arrival countries (such as Italy, Greece)
  • medical fields within pediatrics: e.g. mental health, emergency care, management of chronic diseases
  • pediatric age groups: e.g. babies, toddlers, children, adolescents
  • migration routes: e.g. travel by foot, boat, plane
  • regions of patients’ childhood: e.g. Syria, Ukraine, Nigeria, different European countries
  • sociodemographic privilege of patients in host country: e.g. “highly skilled” working migrants, forced vs. voluntary migration
  • vulnerabilities of patients: e.g. marginalised sexual orientation and gender identities

We recognise that this is a very broad remit. While we conceive this as a strength that may allow to find common themes that matter to a very large group of people that still often remains unheard, we also recognize that decisions may need to be made to further focus the scope of the PSP depending on the questions remaining after categorisation.

The PSP will exclude from its scope questions about:

• Healthcare of adults with migration experience
• Healthcare of children/adolescents residing outside of Europe
• Health uncertainties pertaining to child and adolescent health in general, that is, which affect children and adolescents with and without migration history equally

The Steering Group is responsible for discussing the implications of the scope on all of the stages of the process. 

The Steering Group

The Steering Group includes membership of people with lived experience and caregivers and health and care professionals, as individuals or representatives from a relevant group. 

People with lived experience, caregivers

Michael Asonganyi, filmmaker / producer / actor, residing in Norway, from Cameroon

Farat Ara, university teacher, residing in the United Kingdom, from Pakistan

Vian Ronny, teacher in public school, residing in Germany, from Syria

Shpresa Matmuja, language interpreter at the National Institute for Migration and Poverty, residing in Italy, from Albania

Bezawit Sima, guest researcher in Oslo, PhD in Health Sciences from the University of Oslo, residing in Norway, from Ethiopia

Double Experts (people with lived experience who have a professional link to the healthcare sector)

Mariia Teslenko, Pediatrician at in-patient hospital, doctor of philosophy, residing in Poland, from Ukraine

Afona Chernet, academic researcher at the Swiss Tropical and Public Health Institute, University of Basel, residing in Switzerland, from Eritrea

Zabihullah Khrosh, Doctor at medical faculty in Afghanistan, residing in Italy, from Afghanistan

Ibrahim Alothman, Medical student & nurse, residing in Germany, from Syria

Healthcare professionals

Leila Bianchi, Pediatrician at the Meyer Children’s Hospital in Florence, Italy

Valentina Burzio, Pediatrician at Azienda Ospedaliera Universitario, SC di Pediatria, Ospedale Maggiore della Carità di Novara, Novara, Italy

Julia Brandenberger, Pediatrician in pediatric emergency medicine at the Kinderklinik Universitätsspital Bern,Switzerland

Farah Kazi, Masterstudent of Medicine, University of Bern, Bern, Switzerland

Veronika Wiemker, Pediatrician in training, Heidelberg, Germany 

Supporting the Steering Group are

PSP Lead(s): Julia Brandenberger, Kinderklinik Universitätsspital Bern, Switzerland

Project coordinator:  Farah Kazi, Universität Bern, Switzerland/ Veronika Wiemker, Universitätsklinikum Heidelberg, Germany

James Lind Alliance Adviser and Chair of the Steering Group: Toto Gronlund, JLA

Information specialist: Nicole Weydmann, Hochschule Furtwangen, Germany

The separate Terms of Reference outline the time and expertise that they are asked to contribute to each stage of the process, with input and advice from the JLA. 

Partners

Organisations and individuals will be invited to be involved with the PSP as partners.  Partners are organisations or groups who will commit to supporting the PSP, promoting the process and encouraging their represented groups or members to participate. Organisations which can reach and advocate for these groups will be invited to become involved in the PSP. Partners can represent the following groups:

• children and adolescents with migration experience in Europe (may be adults by now)
• caregivers of children and adolescents with migration experience in Europe
• health and social care professionals - with experience of healthcare delivery to children and adolescents with migration experience in Europe

Exclusion criteria

Some organisations may be judged by the JLA or the Steering Group to have conflicts of interest.  These may be perceived to potentially cause unacceptable bias as a member of the Steering Group.  As this is likely to affect the ultimate findings of the PSP, those organisations will not be invited to participate.  It is possible, however, that interested parties may participate in a purely observational capacity when the Steering Group considers it may be helpful.

Partners: 

Organizations

Refugees and Migrants in Europe – Adolescent and Child Health (REACH) group, official Strategic Advisory Group of the EAP (European Academy of Paediatrics, Paediatric section of UEMS)

The methods the PSP will use

This section describes a schedule of proposed steps through which the PSP aims to meet its objectives.  The process is iterative and dependent on the active participation and contribution of different groups.  The methods used in any step will be agreed through consultation between the Steering Group members, guided by the PSP’s aims and objectives.  More details of the method are in the Guidebook section of the JLA website  where examples of the work of other JLA PSPs can be seen. 

Step 1a: Forming the Steering Group and identification and invitation of potential partners

The Steering Group and potential partner organisations will be identified through a process of peer knowledge and consultation. Potential partners will be contacted and informed of the establishment and aims of the PSP. The Steering Group developed and agreed this protocol.

Step 1b: Awareness raising 

PSPs will need to raise awareness of their proposed activity among their patient, carer and health and care professional communities, in order to secure support and participation.  Depending on budget, this may be done by a face-to-face meeting, or there may be other ways in which the process can be launched, e.g. via social media. It may be carried out as part of steps 1 and/or 3.  The Steering Group should advise on when to do this.  Awareness raising has several key objectives:

• to present the proposed plan for the PSP
• to generate support for the process
• to encourage participation in the process
• to initiate discussion, answer questions and address concerns.

Step 2: Gathering unanswered questions

The  PSP will carry out a consultation to gather unanswered questions from people with lived experience, caregivers and health and care professionals.  A period of 3 months (October - December 2024) will be given to complete this exercise (which may be revised by the Steering Group if required). 

The  PSP recognises that the following groups/circumstances may require additional consideration: 

A major challenge of this PSP is the immense diversity within migrant and refugee populations, as well as the variability in healthcare settings across the European region. This diversity spans a wide range of cultural and socioeconomic backgrounds, healthcare needs and available resources, and migration experiences. Additionally, the dynamic nature of migration patterns and demographics leads to evolving healthcare needs over time. The significant variation of European healthcare systems adds another layer of complexity. 

These circumstances will likely be reflected in the submitted uncertainties, which we expect to cover a broad spectrum of health issues, as well as in the individual experiences of the Steering Group members. It will therefore be essential to clearly communicate the scope, focus and objectives of the PSP to survey respondents. The Steering Group must also allocate sufficient time to discuss and refine emerging overarching themes in order to distil clear summary questions from the submitted uncertainties.

Additional challenges arise in reaching the most vulnerable populations, whose needs and perspectives are of particular interest. Many migrants, particularly refugees, face unstable living conditions, which can hinder their participation in research initiatives. Language barriers between Steering Group Members and some groups of potential survey respondents further complicate this issue. There may also be a level of distrust among some migrants towards institutions and authorities due to past experiences of discrimination or racism. 

These factors make trustful collaborations with migrant-led organisations and the use of personal connections between healthcare and social care professionals and patients / caregivers essential. We also aim to tailor specific survey distribution approaches to different national contexts, use multilingual resources and explore the use of several surveys with differing levels of language complexity, videos/graphic illustration and translation options to mitigate language-barriers. 

Within the survey we may include some questions to better understand the self-identified perspective of the respondent (e.g. “What country are you from?”, “What country are you seeking healthcare in?”, “What gender do you identify with?”, “What area of care can you provide insights on?”). This will enable us to develop targeted recruitment strategies for people with characteristics that are initially underrepresented. 

The Steering Group will use the following methods to reach the target groups:

• As in all PSPs, the Steering Group members play a critical role in fostering trustful collaboration between patients/carers and clinicians. Individuals with lived experiences, in particular, will provide guidance on language, design, and inclusive engagement strategies during the survey preparation phase. They will also use their personal networks to broaden access to the PSP's online survey and publicise the results within their communities and networks. 
• Healthcare professionals from the REACH group, may they be Steering Group members or not, will use various methods, such as posters and direct communication and to inform patients about the PSP in their clinics and practices and engage medical colleagues in their local networks to do the same. In some cases, language barriers may be addressed by Steering Group healthcare professionals who offer assistance with completing the online form in their practives. Additionally, the feasibility of providing multilingual inout options, which could then be translated by Steering Group members, will be explored. 
• Whenever possible, communication channels and presentation opportunities within the European Academy of Pediatrics (EAP) will be used to promote participation in the planned PSP. To enhance representation of particularly marginalised groups, such as undocumented migrant communities or refugees in short-term accommodations that do not yet have access to standard care structures within the national health care system, the PSP aims to engage with migrant-led organisations in various European countries. These organisations will be asked to spread information about the PSP through their internal communication channels.
• Collaboration with migrant-led organisations is essential. 

Existing sources of unanswered questions may also be searched:

• research recommendations in clinical guidelines; e.g., by WHO, EU, national governments/organizations
• research recommendations in systematic reviews (identified via Pubmed, Google Scholar etc.) ?
• protocols for systematic reviews being prepared and registers of ongoing research (identified via PROSPERO etc.)

Step 3: Refining questions and unanswered questions

As this is a consultation exercise, and most of the respondents are not researchers, responses are often not formed as neat questions, but may be statements or narratives. 

These raw submissions will be categorised and refined by all Steering Group members, in particular Farah Kazi and Veronika Wiemker, supervised by Nicole Weydmann and potentially supported by assistance researchers from Nicole Weydmann's team into summary questions which are clear, addressable by research, and understandable to all.  Similar or duplicate questions will be grouped where appropriate. Out-of-scope and ‘answered’ submissions will be compiled separately. The Steering Group will have engagement and oversight of this process to ensure that the raw data is being interpreted appropriately and that the summary questions are being worded in a way that is understandable to all audiences.  The JLA Adviser will observe to ensure accountability and transparency. 

This will result in a long list of in-scope summary questions. These are not research questions and to try and word them as such may make them too technical for a non-research audience. They will be framed as researchable questions that capture the themes and topics that people have suggested. 

Step 4: Evidence checking

The summary questions will then be checked against evidence to determine whether they have already been answered by research.  This will be done by  members of the Steering Group potentially supported by assistance researchers from Nicole Weydmann's team. The PSP will complete the JLA Question Verification Form, to clearly describe the process used to verify the questions as unanswered by research. This must be done before starting prioritisation.  The Question Verification Form asks for details of the types and sources of evidence that are used.  The Question Verification Form should be published on the JLA website to enable researchers and other stakeholders to understand how the PSP has decided that its questions are unanswered, and any limitations of this.

Questions that are not adequately addressed by previous research will be collated and recorded on a standard JLA template by  Farah Kazi.  This will show the checking undertaken to make sure that the unanswered questions have not already been answered.  The data should be submitted to the JLA for publication on its website on completion of the priority setting exercise, taking into account any changes made at the final workshop, in order to ensure that PSP results are publicly available. 

The Steering Group will also consider how it will deal with submitted questions that have been answered, and submissions that are out of scope.

Step 5 & 6: Prioritisation – interim and final stages 

The aim of the final stage of the priority setting process is to prioritise through consensus the identified unanswered questions about Pediatric Migrant Health in Europe. This will involve input from people with lived experience, caregivers and health and care professionals.  The JLA encourages PSPs to involve as wide a range of people as possible, including those who did and did not contribute to the first consultation.  There are usually two stages of prioritisation.

1. Shortlisting is the stage where the long list of questions is reduced to a shorter list that can be taken to the final priority setting workshop.  This is aimed at a wide audience, and is done using similar methods to the first consultation.  With the JLA’s guidance, the Steering Group will agree the method and consider how best to reach and engage people with lived experience, caregivers and health and care professionals in the process.  The most highly ranked questions (around 20-25) will be taken to a final priority setting workshop.  The results of the shortlisting are analysed by stakeholder group, as participation is rarely in equal numbers across these groups. Where the shortlisting does not produce a clear ranking or cut off point, the Steering Group will decide which questions are taken forwards to the final prioritisation.
    
2. The final priority setting stage is a one-day workshop facilitated by the JLA. With guidance from the JLA and input from the Steering Group, up to 30 people with lived experience, caregivers and health and care professionals will be recruited to participate in a day of discussion and ranking, to determine the top 10 questions for research.  All participants will declare their interests. The Steering Group will advise on any adaptations needed to ensure that the process is inclusive and accessible. 

Step 7. Dissemination of results

The Steering Group will identify audiences with which it wants to engage when disseminating the results of the priority setting process, such as researchers, funders and the patient and clinical communities. They will need to determine how best to communicate the results and who will take responsibility for this. Formats may include academic papers, lay reports, infographics, conference presentations and videos for social media. 

It should be noted that the priorities are not worded as research questions. The Steering Group should discuss how they will work with researchers and funders to establish how to address the priorities and to work out what the research questions are that will address the issues that people have prioritised. The dissemination of the results of the PSP will be led by Julia Brandenberger . 

The JLA encourages PSPs to report back about any activities that have come about because of the PSP, including funded research. Please send any details to the JLA. 

Agreement of the Steering Group

The Pediatric Migrant Health in Europe PSP Steering Group agreed the content and direction of this Protocol on July 30, 2024.