Researching with children in conflict-affected settings

Children comprise a substantial proportion of those affected by conflict, crises and disasters. The humanitarian community knows all too well their vulnerability in emergencies – in particular to infectious diseases which raise childhood morbidity and mortality. Such diseases are major killers; averting these deaths is the key health intervention, alongside securing basic needs such as water, sanitation and hygiene, food security, adequate nutrition and shelter. Recent debate has highlighted the tremendous challenges to achieving the health-related Millennium Development Goals, and of applying best practice in child health interventions, while still respecting children’s rights to participate and be heard.

This article reports on a recent international symposium in Manila which brought together researchers and practitioners from Uganda, Sri Lanka, Philippines, Indonesia and Nepal to share experiences and expertise in relation to children, conflict and health, with a focus on infectious diseases. The symposium drew attention to the rationale, approach, methods and ethics involved in developing innovative responses to child health issues, including research directly with children in these settings.

Child health in emergencies

Diarrhoeal diseases, acute respiratory infections, measles, malaria and severe malnutrition are the most common causes of death in children; to these can be added pertussis, typhoid and meningococcal meningitis. While children under the age of five years typically experience the highest mortality in complex emergency settings, older children may also be affected, especially where interventions to promote child health have been disrupted. It is for this reason, as well as to reduce transmission, that the Sphere guidelines suggest immunising children up to the age of 15 years for measles, a condition that usually affects under-fives.

The disruption and displacement of families and communities in times of armed conflict often results in children adopting new roles and responsibilities; these have an impact on their own health and wellbeing, and potentially on that of siblings, peers and close adults (sometimes sick or elderly relatives). Girls in their early teens may themselves be mothers. Children who were previously at school or had been at home or working in the fields may need to find paid work, taking them away from their family for long periods. Within the home, children may play a considerable part, often unsupervised, in obtaining and preparing food, collecting water, disposing of waste, overseeing hygiene and washing younger children.

What we know

• The greatest burden of ill-health in conflict situations is borne by children.
• Infectious diseases encountered by children in conflict settings reveal the same patterns time and again: children are vulnerable as a result of changes in behaviour, environment, micro-organisms and vectors and nutrition.
• Children play significant roles in their own wellbeing, as well as that of others; they should be involved in efforts to improve their own health.
• Children’s perspectives are important, and research with children and young people can offer valuable new insights which have the potential to lead to more effective interventions.

In Nepal, homeless and unaccompanied children in particular may be exposed to risks of HIV/AIDS and other infectious diseases, trafficking and psychosocial stresses. We know little about them, including whether, how or when they access services. In Northern Uganda, thousands of children walk every night from villages and internally displaced camps to the nearest towns – up to 10km away – in response to ongoing abductions and violence. They do so unaccompanied by adults, to sleep in shelters, bus parks, on verandas, in hospital grounds or on the street. They make decisions, on a daily basis, which affect their health: concerning water and sanitation, nutrition, personal safety, substance use and health care. In Mindanao in the Philippines, ongoing conflict has led to earlier marriages, with young girls becoming mothers in their early teens. These young mothers have not had the opportunity to learn how best to feed their children or protect them from ill-health and infectious diseases. Health promotion materials are not directed at them, nor do these materials recognise the limited decision-making latitude these girls may have within complex family structures.

Reshaping services and communication strategies to reflect the realities and constraints children face requires a much more sophisticated understanding of their experiences. Despite significant exposure and vulnerabilities, children often exhibit strength and resilience, actively responding to threats to their health. They take action, interacting with and shaping their environment. However, we know little of their experiences and insights, or the basis on which they make their decisions or choices. Addressing these gaps deserves attention.

Towards a more effective research agenda

Symposium participants heard about recent work which has demonstrated the value of engaging children and young people in community research and action. Innovative approaches and methods have been developed, and ethical considerations elaborated. The symposium stimulated discussion about how to learn from emerging best practice, and how to begin to fill these important gaps. Among the information and research needs identified were:

• Establishing which factors predispose children to risk behaviours and exposure in situations of conflict.
• Determining what enables children to be resourceful and to maintain their own health in conflict situations.
• Developing a deeper understanding of the changing social relationships among displaced and other conflict-affected children, in particular how these impact on responsibilities for health-related decisions within families and communities. How is this affected by religion, class, gender, age or family structure?
• Aside from family, do children draw on the advice of other adults – teachers, service providers, traditional practitioners? How do unaccompanied children perceive their health needs, and how do they make health-related decisions?
• What strategies have been utilised by children to care for their peers and significant others in times of conflict?
• To what extent do different actors, including local and international NGOs, key service providers and policy-makers, engage children, and how do they do so? What mechanisms of consultation and participation do they employ? What do they do with the products of such consultation? What ethical values guide their practice?
• Clarifying the key obstacles to children’s access to quality health care and participation in health care development and provision.
• Establishing what child-centred research methods are most applicable in differing conflict contexts, with due regard to any inherent risks or dangers, and the potential for ensuring reciprocal benefits for participants.
• What steps can be taken to ensure that research and programme-based activities such as consultations and needs assessments lead to improvements in access and equity, and deliver some tangible benefits?

Infectious disease programmes need greater engagement with communities

Although public health is traditionally consultative and participatory, emergency and relief efforts tend to be top-down and more narrowly focused. This results from the often desperate needs and urgency required to avert extremely high levels of morbidity and mortality, and to prevent epidemics from spreading or more serious consequences unfolding. Interventions known to work are delivered with authority, but often with limited consultation or opportunity to engage with affected communities. They may be built around intervention designs which are insensitive to culture or gender, or local beliefs and perspectives on health. Solutions proposed may fail to take account of the strategies and coping mechanisms that are already in place, or may undermine them.

Addressing health problems through traditional emergency responses, ad hoc medical services and vertical, disease-specific programmes may decrease mortality in the short term, but this reduction is unlikely to be sustained unless more comprehensive programmes are implemented – a challenge at the best of times, but even more so in conflict settings. Health promotion, community child health and infectious disease prevention and control all require close linkages with communities. Without the genuine participation and support of the communities, even the best technical solutions are likely to fail.

Participation and engagement

There is growing recognition of the need for the active participation of disaster and conflict-affected people in relief and development planning. The Sphere minimum standards, for instance, state that ‘the disaster-affected population actively participates in the assessment, design, implementation, monitoring and evaluation of the assistance programme’. Participation, however, rarely extends to children. Models of engaging with children in vulnerable situations have nonetheless been developed, and it is clear that we need to listen to them and learn from them. This differs from standard practice, which relies on adults, usually parents and teachers, to convey the perspectives of children. Children, if appropriately helped, can share important insights about their lives, environment, health and decision-making. Appreciating these perspectives is thus of value in modifying and refocusing policies, practices and services. Public health must take seriously the right of children to participate in health decisions that affect them, and in research which seeks to benefit them.

We will learn most about child health issues if our strategies and approaches include researching directly with children. Throughout such work, identifying how children and young people have succeeded, despite adversity, is paramount. So too is understanding the role of agencies who have been able to successfully engage children. How have they done so? What have they learned through these processes? What lessons can be shared with others? What cautions, potentials and risks are they aware of, which need to be understood prior to embarking on such ambitious work? Do key stakeholders, in the end, listen to what children have to say? How do governments, NGOs or political factions engage with children, and to what effect?

Taking forward this work will challenge assumptions about children’s roles, responsibilities, skills and competencies as they relate to health research and the promotion, prevention and treatment of health problems. Ensuring the genuine participation of children and young people in health research, including providing opportunities for them to act as co-investigators, to influence responses and to help shape the research agenda, involves a shift in power. We must be prepared to listen to and be led by young people – to hear the unexpected, and act on what we find.

Adopting innovative approaches will not only reveal the ongoing risks to the health of children and young people, but also the resilience and resourcefulness they demonstrate in the face of adversity. Enabling greater participation by children in the planning, implementation and evaluation of health projects is central to improving health outcomes.

Anthony Zwi and Natalie Groveresearch and teach in the School of Public Health and Community Medicine, University of New South Wales, Sydney.

The Manila symposium, entitled Infectious Diseases among Children in Conflict Situations: Risk, Resilience and Response, was held on 9–13 January 2006. It was organised by the School of Public Health and Community Medicine, in partnership with the Social Development Research Centre and De La Salle University, Manila. It was sponsored by the UNICEF/UNDP/World Bank/WHO Special Training Program in Tropical Diseases Research. For copies of the symposium report and a background paper prepared for the meeting, please contact a.zwi@unsw.edu.au or n.grove@unsw.edu.au. The authors acknowledge Paul Kelly, Michelle Gayer, Pilar Ramos-Jimenez and Johannes Sommerfeld for their contributions to the symposium report.