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March 14, 2024

Stakeholder Identification and Community Engagement for Data Collection in Marginalised Populations

Community engagement blog

Ebonyi community engagement during December 2020 data collection on community-based intervention in the control of gender-based violence in Nigeria study (Source: Author)

Written by Aboluwaji Daniel Ayinmoro

Stakeholder identification and community involvement in research are increasingly considered as prerequisites for successful data collection procedures within the global discourse of community engagement. However, there is concern about the low participation of several marginalised populations in data gathering processes because of mistrust, resistance and dissatisfaction brought on by their limited access to opportunities and resources, which are necessary for them to fully participate in society and live a decent live. If this issue is not resolved, it could lead to inaccurate collection of data and insufficient evidence-based policy interventions for marginalised communities.

The situations of marginalised populations and poor participation in data collection

The number of marginalised groups in Nigeria is steadily rising as a result of poverty, conflicts, and natural disasters. The most vulnerable categories of people to the detrimental effects of this situations are those who live in slums, internally displaced people (IDPs), women and people living in rural riverine areas. This is because, among other things, they are the population most at risk of violence and having restricted access to resources like the health care system and portable water. Their level of poverty and social exclusion are made worse by these circumstances. Why poor participation in data collection? There are several reasons for poor participation in most evidence-based policy driven intervention programmes. First, a lack of feedback on the results of earlier data collection efforts has left community members excessively bored with data gathering process. Second, in certain marginalised groups, local authorities always hijack interventions. As a result, each researcher coming for data gathering must be screened by the local authorities before any data collection can begin.

Overcoming the challenges of poor participation in data collection process

There are measures that need to be made to address these difficulties in obtaining reliable data in marginalised areas, based on first-hand experiences in slum and community-based interventions research. The first step in data gathering procedures is to identify the stakeholders. This is necessary for sorting out all parties involved, direct or indirect, based on how the research's findings would impact them. Most studies that span marginalised populations often identify three categories of stakeholders: primary, secondary and key stakeholders.

- Primary stakeholders: They are the community people who stand to be directly affected either positively or negatively by the research efforts. The primary stakeholders in research conducted in most marginalised communities are the community members themselves, including their heads and leaders of community sub-groups (gate keepers and community champions), as they stand to gain from the findings.

Secondary stakeholders: They are the people who stand to be indirectly affected either positively or negatively by any research effort. The involvement of experts in the study of interest, such as health professionals for health interventions in communities is a good example of secondary stakeholder, while the involvement of community police officers in the study of community-based intervention in the control of gender-based violence is another example of secondary stakeholder.

Key stakeholders: The key stakeholders are people who belong to either or neither of the first two groups, who can have a positive or negative influence on a research effort. The involvement of the state’s ethics office and the directors in the ministry responsible for the area of research interest are good examples of key stakeholders. Additionally, the funder of a research project can also be regarded as a key stakeholder since their funding will impact significantly on the outcome of the research effort.

Stakeholder mapping or analysis is necessary after the different categories of stakeholders have been identified. This is where the researcher[s] ascertains which stakeholders can have the greatest positive or negative impact on the research project.

Engaging community stakeholders for robust data collection

Researchers are required to take certain actions depending on the responsibilities that various types of stakeholders play in a research project in order to address the issues of mistrust, resistance, and suspicion of researchers by marginalised community members. First, as a key stakeholder in marginalised communities, it is crucial to receive ethical clearance from the state's ethics office. This is where permission to execute the research is granted by the state authorities. Secondly, the inclusion of secondary stakeholders in research pertaining to marginalised populations is recommended, subject to the nature of the study and its relationship to policy interventions. This is because, in addition to validating the data gathering tool, their contributions as professionals on the subject of investigation would act as gatekeepers for the marginalised groups. For example, it is imperative that health professionals be involved in the state of health in slums based on their knowledge of related issues.

While the engagement of the secondary and key stakeholders in data collection procedures in marginalised populations is essential for a successful data collection, the procedures for the engagement of primary stakeholders are more critical. This is because the primary stakeholders do not only remain the direct beneficiaries of the research outcomes but are typically more vulnerable to social exclusion than other categories of stakeholders. However, following the engagement of the key and secondary stakeholders in a research effort or an intervention project, a proper community entry is expected to be done by first informing, consulting and brainstorming with community heads and other leaders of community associations on the focus of the research project. By doing this, it would have yielded high level of adherence to ethical standards and perhaps lowest level of resistance in data collection. Involving the heads of the communities and other sub-group leaders in outreach to the community is the next action that has to be taken. In order to gather data in their communities, it could be feasible to recruit and train them as research assistants. As a result, community people feel more involved in the research project and have more confidence in it. Following data collection, feedback and dissemination workshops are required, with participation from representatives of all stakeholders, including the media. Finally, should the study require supports or interventions from the funder, non-governmental organisations or the government to the community, its implementation must not be disregarded and monitored.

Key conclusion

The key to sustainable community engagement in research within any study population for successful data collection in Nigeria, is building enduring relationships with all stakeholders and making sure that research findings are shared with all subjects. In addition to this, if there is any intervention that arises from the findings of the research, its implementation should not be compromised.


Resources

BMJ Global Health: https://gh.bmj.com/content/5/8/e003042.abstract

Global Call to Action Against Poverty: https://gcap.global/coalition/nigeria-2/

Author’s bio

Aboluwaji Daniel Ayinmoro is a Lecturer at the Department of Sociology, University of Ibadan, Nigeria. He has over five years of experience in teaching and research in Sociology, and Demography and Population Studies. He has expertise in community engagement and mixed-methods research that combines quantitative and qualitative approaches. He can be contacted via boluwajidaniel@ymail.com.


December 15, 2022

Data–based humanitarianism in Nigeria and South Sudan

D and D camp

Source: Data and Displacement Project Fieldwork

Written by: Funke Fayehun, Briony Jones, Leben Moro and Vicki Squire

This blog from members of the Data and Displacement team explores barriers that emerge in the context of data-driven approaches to humanitarian protection.i

How far can a data-driven approach to humanitarian protection foster increased participation and improved outcomes for IDPs? We address this question based on an analysis of interviews with displaced persons (IDPs) and stakeholders in Northeastern Nigeria and South Sudan. Our findings highlight the ways that the production and use of data in itself generates challenges for the participation of affected communities, with protection outcomes compromised by a range of contextual, specific and systemic barriers.

Northeastern Nigeria and South Sudan

Northeastern Nigeria has seen terrorism and armed conflict over a number of years, including insurgencies by the Boko Haram sect in the 1990s, later allied with the Islamic State West Africa Province (ISWAP). This has led to deaths, the loss of livelihood and key support systems, and multiple displacements. Findings from our research suggest that there are lapses in the data ecosystems in Nigeria, with likely consequences of imprecise and inaccurate data on humanitarian assistance and planning.

South Sudan gained independence on 9 July 2011, enabling the return of millions of displaced persons. However, due to the outbreak of civil war in 2013, ongoing political battles and intense violence, largely along ethnic lines, has caused catastrophic repercussions for civilians. As of 2021, 2.34 million South Sudanese were refugees in neighboring countries while another 1.615 million were IDPs. Despite resolution in 2018, our research indicates that the generation and management of data on IDPs in the country have significant shortcomings.

Exploring the Challenges:

1. Technological and infrastructural barriers

In Northeastern Nigeria, there are both personnel and equipment gaps, which limit capacities for data collection and storage. The lack of equipment and well-trained personnel limits the coherence of data storage and handling processes, which differ across organizations. Divergent data banks across institutions and actors, along with reliability and systematisation issues in some cases, mean that there is a multiplicity of data.

Most South Sudanese NGOs do not generate sufficient and reliable financial resources by which to acquire the necessary expertise and material resources. UN agencies and international organisations are better positioned to acquire and deploy the required capacity to generate and manage data. Representatives of international organisations that we interviewed confirmed use of tablets to undertake headcounts and profiling for returns.

2. Procedural and Administrative barriers in defining vulnerability

Both stakeholders and IDPs highlight irregularities in the classification and identification of the most vulnerable IDPs in camps in Northeastern Nigeria. Many ‘fall through the cracks’ of protection because classification issues both at the point of registration and within the data subsequently collected for planning purposes lead to many needing help being overlooked.

While some stakeholders in South Sudan are involved in projects targeting vulnerable groups as well as general protection needs, many IDPs who we interviewed in camps suggest that the needs of some vulnerable people are not addressed. Those likely to ‘fall through the cracks’ of protection are victims of sexual violence, which is a significant but culturally sensitive issue in South Sudan.

3. Ethical barriers

There is an inconsistent and inappropriate ethical system for data collection from IDPs in Northeastern Nigeria. Many IDPs describe consent as verbal, without proper recording or written documentation and with limited information. In some instances, data collectors do not directly obtain consent from IDPs, but instead, go ahead with data collection after stating the purpose and approval from higher authorities.

In South Sudan some IDPs interviewed for this study expressed distrust or fear about people coming to collect data from them. Some IDPs agreed to give consent because their community leaders agreed to the data collection, and some complain that those who collect data from them do not return and fail to provide feedback.

4. Systemic barriers

Technological innovations intersect with donor pressure, donor agendas, and our research highlights the role of inter-agency competition over finite resources and funding. Data-driven humanitarian assistance is clearly a contested terrain with implications for IDP participation and humanitarian outcomes. Our research indicates that IDPs often have different understandings to humanitarian practitioners of the value of sharing data and expectations of what it should be used for. One told us:

‘I did not ask them. I would want to ask them, but I did not, they came to collect data like you are doing now, but they disappeared’

Conclusion

In reviewing data-driven humanitarian assistance in IDP camps in Northeastern Nigeria and South Sudan, our research points to a range of barriers to improving protection outcomes: technological and infrastructural, procedural and administrative, as well as ethical. Our findings suggest that this requires further investment in personnel and technological infrastructure, more careful attention to classification processes in the identification of vulnerability and need, plus improved ethical practices that take informed consent seriously.

Profile of Authors:

Funke Fayehun, Associate Professor and Head of Department of Sociology, University of Ibadan

Briony Jones, Reader of International Development, Politics and International Studies Department, University of Warwick.

Leben Moro, Director of the Directorate of Scientific and Cultural External Relations, University of Juba.

Vicki Squire, Professor of International Studies, Politics and International Studies Department, University of Warwick.

Notes:

[i] Data and Displacement: Assessing the Practical and Ethical Implications of Targetting Humanitarian Protection is funded by the UK Arts and Humanities Research Council and Foreign, Commonwealth & Development Office (AHRC-FCDO) Collaborative Humanitarian Protection Programme (grant AH/T007516/1). We would like to thank the wider research team for their work on this project, including João Porto de Albuquerque, Dallal Stevens, Rob Trigwell, Ọláyínká Àkànle, Modesta Alozie, Kuyang Harriet Logo, Prithvi Hirani, Grant Tregonning, Stephanie Whitehead, HajjaKaka Alhaji Mai, Abubakar Adam, Omolara Popoola, Silvia De Michelis, Ewajesu Opeyemi Okewumi, Mauricio Palma-Gutiérrez, Funke Caroline Williams and Oluwafunto Abimbola. The project team undertook a total of 140 semi-structured qualitative interviews in Northeastern Nigeria and South Sudan, 100 with IDPs and 40 with practitioners, split equally across the two locations. The team has also conducted semi-structured qualitative interviews with a total of 42 humanitarians who have expertise in data and information management, from across a range of international organisations and NGOs. We would also like to extend our thanks to Annika Sirikulthada, a University of Warwick Research Assistant who suported preparation of the blog.


October 19, 2022

Informal networks as sources of healthcare support

Informal networks as sources of healthcare support: How slum dwellers cope with health challenges by talking to each other

Informal health support

Photo by Sheyi Owolabi on Unsplash

Blog written by Chinwe Onuegbu

Access to quality healthcare is a fundamental human right, but this remains a struggle for people living in slums in low and middle-income countries. The term “slum” can be controversial but it is used in this article, in line with a larger project under which the research described in this article is based, to describe poor urban settlements characterised by overcrowding, poor housing structures and an overall shortage of social and health amenities. Globally, one in eight people reside in slums or poor urban settings, and in many African countries, including Nigeria, about 60% or city dwellers live in slums. Public health services in urban cities do not sufficiently cater to people living in the slums, and many are unable to obtain the comprehensive formal healthcare they need.

Staying healthy and fit is particularly essential for people living in slums. Many engage in informal jobs with daily wages, and maintaining health is crucial for maintaining daily household income.

In the face of inadequate formal healthcare services, slum dwellers turn to alternative healthcare options. It is important that we begin to understand these alternatives in order to mitigate any negative consequences and to amplify potential synergies.

My PhD study within the NIHR-funded slum health project

My PhD project was nested within the NIHR funded slum health unit at Warwick Medical School. The unit worked collaboratively with universities in Asia and Africa to map and understand use of health services in slums across both continents.

With my background in Sociology, I recognised the untapped opportunity to explore how health was managed beyond formal medical settings in the slums. My thesis explored a phenomenon known as lay consultation: how people manage illnesses and health challenges by talking to informal network members (e.g. family, friends and neighbours) or other informal online forums or resources (e.g., Facebook friends) beyond medical settings. My study population were the working-age adults in slums in Ibadan (Oyo state), Nigeria, and they were chosen because they were more likely to migrate in and out of the slums, be engaged in work that make them unable to seek care when needed and are likely to own and use mobile devices. These dynamics can shape lay consultation behaviours and network composition. The project adopted a mixed method approach. First, a survey to map how common lay consultation was, which network members were contacted and how influential were informal network members in determining people’s treatment behaviours. Next, interviews were conducted to understand in more depth the connections between speaking to others about a medical problem and actions taken afterwards. The study was done in collaboration with partners from the University of Ibadan, Nigeria.

The study found that most people experiencing illnesses consulted 1-3 network members including family, friends and neighbours. People navigated through the complexities of social life in slums such as having fewer networks due to busy life and difficulties in having trusted or dependable sources of support, to find people they could talk to. Participants rarely used online informal networks, mainly because many did not have access to such devices, had limited digital literacy, or preferred physical networks. The informal consultations were largely unplanned and taken-for-granted as they were ingrained in everyday life. Yet, within those informal conversations, were exchanges of advice and support- some useful and some not, that shaped how people managed illness experiences.

A striking finding from this study was that, despite living in the slums where the harsh conditions may drive over-reliance on informal networks for health maintenance, slum dwellers were highly agentic in using advice or support from others. People had strategies for coping with health challenges which included ability to assess the relevance of advice they received. Occasionally, they consulted other informal health providers such as local medicine vendors (known locally as ‘chemists’) and traditional healers to confirm advice they received from their network members.

So what?

We now know from this study that lay consultation, that is talking to informal network members, is a common way of managing illnesses in slums. The conversations- whether intended or unintended- contribute to management of personal health. There is a potential to leverage on informal networks to improve knowledge about health conditions and health care access, thereby contributing to strengthening of the health system in poor urban settings. Informal networks, including those existing online, should be recognised as an integral part of the overall health system, and incorporated into health policies and programmes as a means of increasing the coverage and effectiveness of health interventions.

Next steps:

The next step involves working with collaborators at the University of Ibadan, Nigeria on an intervention around lay consultation for slum communities in Ibadan, Nigeria. Our initial idea is to co-design an online health-resource that would provide formal, verified and accessible health advice for people living in the slums. People feeling ill or having health challenges can consult the online resource as part of steps taken to inform their health-seeking decisions. We will work with policy makers, community members and concerned organisations such as NGOs to co-design and promote the resource.

An internal seed fund grant has been obtained from the Warwick International Partnership fund (IPF) to kick start this project. The funding will be used to:

  • Disseminate findings from the PhD to study participants, key stakeholders and the general public,
  • Engage representatives of slum communities and public health policy makers at the state level in Nigeria to assess the value of lay consultation as an intervention to improve health outcomes
  • Build a multidisciplinary collaborative research team from across public health, information technology and social science and other stakeholders (such as Non-Governmental Organizations) for future research on leveraging lay consultation for health benefits in the slums.

In conclusion, interventions that are bottom-up, innovative and interdisciplinary approaches have the potential to tackle the complex issues in slums. The PhD project and planned intervention discussed in this blog exemplify how the intersection between social science and health science can improve health in slums.

Author Bio:

Chinwe Onuegbu is a Research Fellow at the Division of Health Sciences, Warwick Medical School, University of Warwick, UK. She recently completed her PhD in Health Sciences at Warwick Medical School. Her research interests include the social determinants of health in resource-constraint settings, and the role of information and communication technology (ICT) in healthcare in low- and middle-income countries. She is also interested in research communication and hosts a Research chat show on YouTube in her free time.


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