In this post, we talk to the authors of a recently published paper, “Fear of the unknown”: Health, disability, and stakeholder perspectives on the behavioral and social drivers of vaccination in children with disability in Fiji, by Rosalie Power, Unise Vakaloloma, Israt Jahan, Sureni Perera, Ilisapeci Tuibeqa, Rachel Devi, Litiana Volavola, William May, Donald Wilson, Lanieta Tuimabu, Gulam Khandaker, and Meru Sheel, on behalf of Australian Immunisation and Disability Investigators
What led you to decide on this research question?
Vaccination is one of the most effective public health interventions, yet children with disability are often left behind. Lack of vaccination can also be a cause of childhood disability. Fiji, one of the larger island countries in the South Pacific has made significant progress in their coverage for routine immunisation, they achieved high coverage rates for COVID19 vaccination but like any health program and most settings – there are gaps in in the immunisation programs. One such priority population is children with disability. Some of the authors in the team had done work in other low- and middle-income countries, but no one had ever examined vaccination in this priority population in Fiji and the rest of the Pacific. In 2022, there was a funding call through the Australian Regional Immunisation Alliance (ARIA) which receives funding from the Australian Government Department of Foreign Affairs and Trade – we decided to explore the topic of vaccination in children with disability. While one of the major aims was to measure the gap (if any) in vaccination – we also wanted to understand reasons for these, from the perspectives of parents of children with disability or others with caregiving responsibilities, health care providers and other stakeholders beyond the health sector who might be involved in delivery of health services.
Could you talk us through how you designed your study? What was important for your team as you created the study team?
This study was a highly collaborative study – we knew from the beginning that if we wanted to succeed, we would need to be inclusive and seek diverse views and feedback along the way. Our core team was inter-disciplinary with people from ministry of health and medical services, paediatricians, public health academics, immunisation experts, childhood disability specialists, non-government organisations working with children with disabilities, and organisations of persons with disabilities. Getting the team right was one of the first key steps and is one of the reasons why this project was successful. Once the team was established – we started designing the study and at every step – we consulted with different groups to get feedback. For example, initially we wanted to recruit and collect data at the community level, but our lead implementing partner (Frank Hilton Organization/ FHO) felt that it wouldn’t be culturally appropriate and nor was it feasible with the resources available. We also learnt that FHO is one of the only and largest service providers for children with disability in the country and could directly access many children in the main area through their database and networks, and would be a much better approach for recruitment.
Meru Sheel, Israt Jahan, Sureni Perera, Unise Vakaloloma, Litiana Volavola with other team members from the Fiji Ministry of Health and Medical Services and Frank Hilton Organization in first project planning meeting.
As this was the first ever study of its kind in Fiji, we also wanted to ensure that we pick an area where we knew we could reach our study sample size. While Fiji’s population is relatively small, it is geographically dispersed and access to health services isn’t always easy so there were a few things we had to balance. We then consulted with sub-divisional medical officers in the area (these are people who are responsible for managing the health centres at the local level) and medical officers to ensure that we could use their health facilities for interviews. There were many such steps during the project implementation.
Team member from Frank Hilton Organization consulting a caregiver of child with disability
What challenges did you encounter during your study?
Like many field-based studies, one of the major challenges was the logistics of undertaking the study. We often don’t talk about how complex and challenging field-based real world studies can be – it’s a lot more than flat tyres! Collecting diverse feedback also meant that we had to coordinate many stakeholders – which in a small country might seem simple, but it’s often difficult as people have multiple responsibilities and commitments and are having to be in multiple spaces at the same time. We would often end up with divergent views – which then required further consultation and collective-decision making and trade-offs. Working with children with disabilities, and their families also requires deep empathy as they are often balancing multiple competing health needs. While we were interested in immunisation for this project, our in-country health teams had broader responsibilities towards these families, which at times made it difficult to keep on track for timely completion. Their strong relationships with caregivers and other stakeholders were also a key reason for successful completion of the study. We also had to ensure that we met accessibility needs of the participants and our study team investigators. However, throughout the project, we were committed to being inclusive even if it impacted our study timelines – which required us to be adaptable and agile without compromising our study’s scientific rigour.
A/Prof. Meru Sheel presenting the tools and framework at the training session with the local team and data collectors.
What did you find most striking about your results? How will this research be used?
Our results confirmed that children with disability had lower levels of vaccination, and children with disabilities and their families experienced complex range of barriers including stigma, need for tailored information, accessible, safe spaces and affordability. While vaccines are fully funded under Fiji’s national immunisation program, families with children with disabilities often have to pay extra to get to health facilities. While some of these results were expected from an academic literature point of view, they came as a surprise to in-country team members.
The results have already been used to influence policy change, where the government is considering including the needs of children with disability into their immunisation policy specifically. The findings also highlighted that we need to work towards an integrated service delivery model for children with disabilities where vaccines can be delivered as part of primary health care services. One of the key unexpected findings and outcomes of this project is the active collaboration between immunisation providers and disability services providers in Fiji to ensure children with disability are not left behind.
Another outcome of this project was the training, capacity strengthening and knowledge exchange that happened across all the project team members from learning how to do surveys, focus groups, collecting data on vaccination to the theoretical aspects of immunisation and, data analysis and writing.
Unise Vakaloloma and Fiji National University (FNU) team members with participants from the pilot focus group
What further research questions need to be addressed in this area?
There are several further lines of inquiry that need to be addressed including formative research and implementation science to close the gaps in vaccination. As an immediate follow up – we want to develop tools that doctors and zone nurses in Fiji can use to assess an individual’s vaccination status – one would think that “catching up” under-vaccinated child is simple, but it can be a complex and time-consuming process. We have just received additional funding from ARIA to undertake this work.
We also want to look at whether the differences in vaccination in this study – which was conducted in a peri-urban context, are also relevant for more rural settings in Fiji and other parts of the Pacific. This was the first study to look at this priority population in the Pacific, and we want to also look at needs more broadly in other Pacific Island countries. And finally, the big unanswered question is the burden of vaccine-preventable diseases leading to death in children with disabilities. As vaccination coverage increases globally, we need to ensure that specific priority populations are not left behind.
Israt Jahan, Ilisapeci Tuibeqa, Litiana Volavola, Meru Sheel, Rosalie Power, Unise Vakaloloma with the sub-divisional medical officers, ministry of health, FHO and FNU staff at the results dissemination meeting. The study team presented results and discussed potential approaches to addressing the needs in vaccine programs.
Why did you choose PLOS Global Public Health as a venue for your article?
Choosing PLOS Global Public Health for this study was a simple decision – the journal is highly respected, and their mission and ethos resonated with the work and principles of this project and our team more broadly. Since this was a qualitative research study, we also wanted a journal that doesn’t have a word limit which can be a challenge for publishing qualitative studies. Also, the speed of peer-review is becoming a big challenge, where in sometimes it takes almost a year – considering that, PLOS Global Public Health has a relatively quick and streamlined process and responsive editorial office.
About the authors:
Associate Professor Meru Sheel is an infectious diseases epidemiologist at the Sydney School of Public Health, The University of Sydney and was the co-principal investigator leading this project.
Dr Israt Jahan is a post-doctoral researcher at the Central Queensland University. She works with children with disabilities in low-resource settings and was the study coordinator based in Australia.
Ms Unise Vakaloloma is an early career researcher at the Fiji National University. She was the study coordinator based in Fiji and co-first author for this paper.
Dr Rosalie Power is a Research Fellow at the Translational Health Research Institute, Western Sydney University. Her research focuses on marginalized population health, with a particular focus on disability. She was the co-first author of this paper, providing qualitative research expertise.
The post Behind the paper: “Fear of the unknown”: Health, disability, and stakeholder perspectives on the behavioral and social drivers of vaccination in children with disability in Fiji appeared first on Speaking of Medicine and Health.
