Advancing a Childhood Ethics Approach to Research During COVID-19
As subsequent waves of COVID-19 continue to hit many countries around the world, the impacts of the pandemic on children and young people become more important to acknowledge, prioritize, assess, and address. Preliminary analyses indicate that children’s experiences have been significant and unique. However, young people living in resource-limited regions have been almost entirely excluded from meaningful participation in pandemic-related research and associated knowledge mobilization initiatives (Campbell et al. 2020). This lack of direct engagement with young people in resource-limited regions raises ethical concerns, both within a research and a policy context. We explore these concerns here, drawing on our experience with international pandemic-related research as part of the VOICE (Views On Interdisciplinary Childhood Ethics) initiative.
The VOICE Initiative
VOICE is an integrated research and action program that operates out of McGill University in Montreal, Canada, and is comprised of a team of interdisciplinary researchers and students, along with a large network of community partners (both within Canada and internationally). Initially founded by researchers in health and social sciences, the aim of VOICE is to “identify, investigate, and develop strategies for addressing ethical concerns that affect young people”, essentially shifting the paradigm from medicalized discussions about childhood and ethics to a child-centred conception of ethics (Carnevale 2016, pg. 22). In this way, VOICE builds upon the strong tradition in nursing of theorising ethics (e.g., ‘ethics of care’ / feminist ethics) but takes an interdisciplinary stance and seeks to advance a childhood-specific approach to ethics. At its foundation, this shift involves advancing new understandings of childhood (particularly those associated with the ‘New Sociology of Childhood’), social sciences and humanities research (rooted in constructivist traditions), interdisciplinary collaborations and ethics research and practice, to ensure theory and empirical research are advanced concurrently (Carnevale 2016). By incorporating interdisciplinary approaches, aligned with childhood studies, VOICE promotes multifaceted exchanges to further inquire into the moral lives of young people (Carnevale et al. 2020).
International Pandemic-Related Research and the Lack of Child Participation
Recently, a team associated with the VOICE childhood ethics research program conducted an ethical analysis of impacts that have been borne by children and young people during this pandemic. Our approach to analyses like this typically involves searching key literature on particular issues relevant to children’s lives and experiences, synthesising the collective findings and considering these in light of the emerging concept of ‘childhood ethics’ (as described further below). Our most recent ethical analysis sought to particularly examine the impacts of the pandemic on children and young people in seven resource-limited countries: Brazil, India, Iran, Lebanon, Mexico, Nigeria, and Syria. Our team was comprised of experts with local regional ties to these seven ‘global exemplars’ where VOICE has established partnerships.
The team began by collecting key literature related to the pandemic from or about the included jurisdictions. As we scanned this literature to understand the specific ways young people have been both ‘favourably’ and ‘adversely’ impacted by the pandemic and pandemic response plans, we found several common features across these regions and attempted to develop a synthesis of these findings (along with highlighting any disparities). The findings revealed that young people in resource-limited countries have faced, and will continue to face, a multitude of short- and long-term impacts due to the pandemic, tied to their physical, psychological, and social well-being and associated with their education, safety, security, and livelihood (Campbell et al. 2020). For example, in many countries increased risk of childhood violence and emphasized mental health concerns for young people were key issues that repeatedly arose in discussions pertaining to COVID-19. Further detail on these findings can be found in the Global Studies of Childhood journal and on the McGill Institute for Health and Social Policy’s blog.
Beyond the impacts upon young people, a key commonality was that in comparison to a similar ethical analysis we conducted from a Canada/USA childhood lens (Campbell & Carnevale 2020), the inclusion of young people’s voices and participation in resource-limited regions was not afforded substantial attention or recognition. Although there were a few instances where the participation of young people was promoted (e.g., in Brazil as a solution to excessive internet usage and in India as a way to mobilize whole communities), the engagement of children and young people in both research and policy-settings related to COVID-19 was not a high priority. Indeed, we concluded that young people living in many resource-limited regions have been almost entirely excluded from meaningful participation in pandemic-related research and associated knowledge mobilization initiatives (Campbell et al. 2020).
Issues Reinforcing the Exclusion of Young People: Injustice, Assumptions & Resources
While the above conclusion will likely resonate with the experiences of others working from a children’s rights perspective, the ethical nature of our analysis made this finding particularly pertinent. As indicated earlier, in alignment with childhood studies, children’s rights and the work of ERIC, ‘childhood ethics’ involves a shift from discussions of ethical concerns affecting children/childhood to a focus on childhood as the pivotal phenomenon and uses a hermeneutic ethical lens to examine all matters affecting children (Carnevale et al. 2020). In an effort to continue to advance the concept of ‘childhood ethics’, we considered whether a theory of equity, accessibility, justice, or something else was most relevant in highlighting and responding to the moral harm reflected in the lack of participation for young people evident in resource-limited contexts.
After close consideration, we felt the concept of justice linked to the field of global health and global health ethics – in other words, justice with a ‘global lens’ – offers considerable scope for illuminating the injustice associated with children and young people’s lack of participation, especially given considerable concerns about the impacts of the pandemic borne by them. The disregard for children’s perspectives (while perhaps unintentional) implies the effects of the pandemic on young people have less substantive importance. In addition, failing to engage young people in understanding and responding to psychological, social, safety and financial impacts particularly, means the challenges they face may not come to light or be addressed in a child-centred way. Essentially, a justice-based frame helps to highlight that placing child-specific concerns on the public health backburner for resource-limited (and arguably resource-rich) countries perpetuates a form of injustice that fails to acknowledge the rights and associated dignity of young people (Campbell et al. 2020).
Together then, the ‘childhood ethics’ construct, underpinned by an explicit justice framing, helped stress why a lack of opportunities for children and young people to participate is a major ethical concern, particularly within the context of a global pandemic that is recasting their childhoods. Such exclusionary (in)action perpetuates the status quo surrounding constructions of childhood and perceptions about children and young people’s presumed lack of capacity. Not only does this have immediate impacts (during a pandemic), but it also contributes to entrenched understandings and practices that reinforce children’s inferior status rather than as citizens worthy of dignity and respect. What is perplexing about this is that such positioning of young people no longer accords with the expansive efforts of contemporary childhood scholars and researchers, as well as young people themselves, in challenging such exclusion. It also allows decision-makers to overlook growing evidence of the benefits and merits of child and youth participation, along with examples of good practice aimed at encouraging institutions to acknowledge and support young people’s voices, perspectives, and experiences.
While maintaining our ethical standpoint regarding the injustice of excluding young people, it is important to also reflect on the context-specific factors associated with resource-limited countries, in particular the actual limited resources they have available. For instance, limited funding and other resources can be one reason why engagement with stakeholders, including children and young people, in resource-limited countries is not prioritized, and perhaps particularly so in times of crisis. However, our work points to the possibilities that meaningful consultation with young people might hold in better utilizing limited resources, while also leading to improved outcomes for them now and in the future. Negotiating competing demands on scarce resources is challenging at the best of times, so prioritising children and young people’s participation on ethical grounds in the midst of a pandemic may seem unrealistic. Nevertheless, this is a key finding arising from the VOICE analysis of pandemic impacts in resource-limited contexts and prompts us to seek out opportunities to collaborate with others, such as ERIC, in underlining the critical importance of supporting children’s participation rights and paying closer attention to the consequences if we don’t.
While efforts continue to uncover the widespread and overlooked impacts of the pandemic, we thought it might be useful to share some of the questions below that continue to shape our work. There are undoubtedly many other knowledge gaps that young people, policymakers, researchers, institutions, clinicians, and parents might be pursuing, too, in relation to the lack of meaningful participation during the current pandemic, but these questions seem particularly relevant for us following the analysis outlined above:
From the perspective of policymakers in resource-limited countries, why has there not been more recognition of children and young people and prioritization of their views and perspectives when assessing impacts and responses to the COVID-19 pandemic?
What do young people think about policy decisions and ongoing research efforts related to COVID-19 in resource-limited countries? How do they feel about participation (i.e., does a lack of engagement impact them directly, at this time)?
How can researchers and professionals support policymakers in resource-limited countries to foster engagement with young people during a pandemic? What supports do researchers, themselves, need to promote participatory research or methodologies where young people are recognized as participants and/or collaborators?
Campbell, S., Carnevale, F.A. Injustices faced by children during the COVID-19 pandemic and crucial next steps. Canadian Journal of Public Health. 2020;111:658-9. doi: 10.17269/s41997-020-00410-6.
Campbell, S., Cicero Oneto, C., Saini, M.P.S., Attaran, N., Makansi, N., Passos Dos Santos, R., Pukuma, S., Carnevale, F.A. Impacts of the COVID-19 pandemic on children: An ethical analysis with a global-child lens. Global Studies of Childhood. 2020. doi: 10.1177/2043610620976142.
Carnevale, F.A. Recognizing the voice of the child: developing a new paradigm for childhood ethics. Bioética Complutense. 2016;26:20-5.
Carnevale, F.A., Collin-Vézina, F., Macdonald, M.E., Ménard, JF., Talwar, V., Van Praagh, S. Childhood Ethics: An ontological advancement for childhood studies. Children & Society. 2020. doi: 10.1111/chso.12406.
Sydney Campbell, MA (Phil), is a PhD Student in the Institute of Health Policy, Management & Evaluation at the University of Toronto, and simultaneously completing a Collaborative Specialization in Bioethics through the Joint Centre for Bioethics at the University of Torono. As a whole, her work aims to advance perspectives on childhood well-being, children’s rights, and children’s health care. She also works as a research assistant with the VOICE team at McGill University. E-mail: firstname.lastname@example.org, Twitter: @SydneyOCampbell.
Franco A. Carnevale, RN, PhD (Psych), PhD (Phil), is a nurse, psychologist and clinical ethicist (child & youth services). He is a Full Professor in the Ingram School of Nursing & the Principal Investigator of the VOICE Childhood Ethics research program at McGill University in Montreal, Quebec (www.mcgill.ca/voice). E-mail: email@example.com, Twitter: @childethics
 VOICE has secured funding from the Social Sciences and Humanities Research Council (SSHRC) and Canadian Institutes of Health Research (CIHR)—two federal granting agencies in Canada—along with generous funding from the Newton Foundation.