Including the voice of children <15-years-old in paediatric global health research

Abstract

Purpose of Review

Despite evidence of the benefits of including children’s voices in global health research, they continue to be underrepresented. Implementation of how to include children’s voices appears to remain an obstacle to their inclusion in global health research. In this manuscript, we present an epistemological frame that advocates children as experts of their own experiences and knowledge-bearers. Then we provide four case studies, to illustrate ongoing efforts to build equity in the design and execution of paediatric health research.

Recent Findings

Ensuring children’s equitable inclusion requires recognizing them as active participants in their health and wellbeing, and empowering them to employ their agency in all interactions with researchers, while recognizing the dialogical nature of those interactions. Successfully involving children in global health research can lead to important psychosocial and clinical insights, that could be leveraged to inform future treatment and care practices.

Summary

We present four case studies describing the inclusion of children in research and research development related to prevention, treatment and/or care of chronic and acute diseases (tuberculosis, HIV, cervical and other forms of cancer) in a number of global settings including India, Philippines, South Africa, United States, Zambia. The exemplars detail novel applications of a diversity of arts-based methods that are rooted in frameworks for participatory action research. They highlight the need to invest funds, training, time and resources for early and sustained engagement with children throughout the research process. We conclude by offering principles for equitably engaging children in global health research.

Introduction

Since the introduction of the landmark Convention on the Rights of the Child in 1989, children are increasingly engaged in health research, and health related decision-making. Inclusion of children’s voices, opinions and preferences is shifting discourses that cast children as passive recipients to recognizing them as active participants in their health and wellbeing.¹ Parallel calls in global health are emphasizing the meaningful inclusion of previously excluded voices², through context-specific, in-depth research processes and practices that elicit experiential knowledge and examine power imbalances that undergird healthcare.³ For children to be appreciated as experts of their own social lives and health, it is imperative that their voices are appropriately investigated and incorporated in this arena.^4,5 This is especially critical for children below the age of assent, for whom decisions are more likely to be made in their absence by adult providers, parents, and caregivers.

Although considerable progress has been made, efforts to enable children’s equitable inclusion in health research remain uneven. In part because of a lack of clarity in how to effectively and justly involve children. The child health literature is replete with ethical, legal, and methodological concerns; for example, the age at which children can participate in research processes is a common point of debate.⁶ Although competence and comprehension are the predominant guiding principles for determining whether children can provide consent or assent, these constructs are not clearly defined or easily ascertained across settings.⁷ Many researchers have also shown that even very young children can meaningfully participate in research.⁸ The fields of anthropology, sociology, education, psychology, and linguistics have long moved beyond circling around these concerns as bottlenecks to inclusion. Rather, researchers in these fields have catalysed change by bringing about the prioritization of children’s participation using equity-oriented, creative and symbolic approaches that accentuate their opinions, and experiences, and build platforms upon which children may be empowered to employ agency in research endeavours and decisions.^9–14

Child research has also, historically, sought to ‘get at’ children’s voices (perspectives) as if they were singular, distinct truths, accessible through the use of age-appropriate methods^15–17, and separable from the encounters in which they are surfaced and scrutinized.^18,19 Paradigmatic shifts in the field have since come to embrace children’s voices as mediated by and through their socio-cultural contexts and interpersonal relationships, including those embedded within research processes.^20–22 Researchers are increasingly finding diverse, creative, and contextualized ways for children to engage in research dialogues.^23–25 Continuing to identify opportunities to include children in the conversation is vital to support this ongoing momentum, so that researchers listen to and value preferences, priorities, and perspectives stemming from children’s lived experiences.^26,27

In this manuscript, we present an epistemological frame to guide young children’s inclusion in health research. We seek to build understanding of the value of adopting equitable processes, and approaches for knowledge co-production in paediatric healthcare, and to support the more even integration of child-centered practices to improve the quality, responsiveness, and value of paediatric health research globally. We include examples of methodological approaches currently in use with exemplary case studies from our work in India, the Philippines, South Africa, the United States (US), and Zambia. We conclude with suggested principles for guidelines, acknowledging challenges, that may inform researching with children rather than just of or on them.

An equitable approach for research with children

Involving children as active research collaborators, which extend beyond them being subjects of study, is underpinned by core principles guiding knowledge co-production where all contributors are given opportunity and power to contribute. This requires researchers to attend to the dialogical processes through which a child participant’s ‘voice’ is yielded, including innate power-differentials, and adopt an epistemological position that enables more egalitarian, and reflexive approaches to knowledge construction.^23,28,29 For researchers (and health providers engaged in research), this means foregoing professional power, examining their own voice, and manifestly enabling children to participate in research endeavours in ways and spaces where they can be heard.^23,30 Co-production also recognises that knowledge arises from lived experiences, often as a culmination of moments and never created in a silo, but in increments, and in this instance, experiences lived and willingly shared by children. To maximize co-production, and ensure children’s values and needs remain central, children must be invited to participate and engage in an exploration of points of inquiry, interpretations, and the discovery of solutions throughout the research process, ideally from its conception through to analysis and dissemination.^31–33

Participatory action research (PAR) is one means through which researchers working in global settings can implement co-production, and create environments in which children can articulate their perspectives, and desires, and be empowered to act as agents of change.^34,35 The framework of PAR supports a portfolio of creative, and interactive methods for data capture, and analysis, which go well beyond conventional approaches such as interviewing, group discussion, or surveying, but which can also be used in combination.³⁵ We highlight some PAR-inspired arts-based methods which have been shown to resonate with children in supporting them to express their views by overcoming barriers along the axes of language, age, articulation, cognitive development, physical or social vulnerability, and interest. Their visual, playful, indirect, and fluid attributes can help to yield framings about matters most relevant to children that may remain elusive, even stifled, if inquired through talk alone.^4,36,37 Action-telling methods, for example, involve exchanges of pictures or vignettes as segues into children’s everyday social situations, and can help to understand how children navigate new or complex situations in the context of their evolving identities, and positionalities.³⁸ Drawing can be an unobtrusive, enjoyable way to capture children’s interpretations about psychosocial concepts, and support a shared approach to problem-solving.³⁹ ‘Draw and tell’ methods can encourage children to take the additional step of labelling or explaining their drawings, reduce the risk of researchers’ misinterpreting or misrepresenting children’s images, and offering them multi-modal ways to share experiences, and the processes through which they make sense of those experiences.^39,40 The sensory properties of arts-based methods, not only drawing but also sculpting or working with other play-based materials, thereby provide opportunities for researchers to connect to children, acknowledge, and address power divides, and strengthen their analytic frame.

A diversity of arts-based approaches have supported knowledge co-production in paediatric health research, functioning either as stand-alone methods or by leading into more traditional forms of inquiry. Play materials are commonly used to shift children’s attention away from the immediate gravity of a research topic, create safety, and/or more easily pose interview questions.¹² Researchers have used play to subvert relational-dynamics within the context of a lived experience and research encounter in which that experience is recalled, to unearth distress and abuse.⁴¹ Children’s fantasies, as expressed during play (such as about family members and households ravaged by disease), have allowed researchers to tap into novel interpretations of otherwise complex constructs (such as care).⁴² Researchers have also combined methods or ventured beyond the arts, leveraging digital platforms to disassemble research power dynamics, create a sense of ‘togetherness’ with children in the absence of physical proximity, and elicit children’s perspectives.^12,43 Online research environments have enabled children with disabilities to circumvent ‘normal’ bodily functions, and construct identities that win them the ability to assert agency, more than might be available to them during in-person interactions.⁴⁴

We now present a collection of case studies in which varied combinations of participatory and collaborative methods have facilitated children’s active and meaningful engagement in health research. The case studies draw on a mix of disciplines, including anthropology, sociology, psychology, occupational therapy, and implementation science; they were each nested into larger projects. Team members who enjoyed direct interactions with children were typically identified from within the study communities, and trained to imbue participatory practices in ways that were attuned to local norms and dynamics between researchers and children, and amongst children. The terms children, young people, and adolescents are used interchangeably, as specified in the protocols of each case study. They represent just some of very many examples of the effectiveness and value of engaging children in paediatric global health research enterprises.

Case study 1. The CATALYST Study: Draw and Tell

Tuberculosis is an airborne infectious disease, and drug-resistant tuberculosis (DRTB), which is more complicated to treat, affects at least 32,000 children (0–14 years) each year.⁴⁵ CATALYST (Clofazimine and Moxifloxacin pharmacokinetics, safety, and acceptability for paediatric TB treatment) was a trial assessing new child-friendly formulations of two key drugs used to treat DRTB in three high-burden countries, India, South Africa, and the Philippines.⁴⁶ Acceptability is a key indicator of the local social value of emerging treatments, and can inform the development of national and global guidelines.⁴⁷ To determine children’s acceptability of new formulations, children and/or their caregivers were engaged at multiple time-points over the treatment course. In early interactions in each site, children (0–14-years-old, n=26) joined interviews that were guided by participatory research activities designed to encourage their direct involvement together with caregivers. Children were asked to describe their treatment journey along a timeline, detailing each step from showing symptoms to starting treatment. Their everyday treatment processes were explored such as how treatment administration processes fit into their lives, the time, and order in which they were administered, means of administration, how they felt after ingesting each pill, and their experience of the treatment itself. These data collection activities were carried out either in a space at the health research site or in the participants’ home. The data collectors encouraged children to engage in the activities, but also to wander off, and play with available toys when the conversations were less interesting to them, and then to wander back in to embellish responses made by their caregivers. An example of one of the activities nested in the interactions was body-mapping, which uses imagery to represent part of or a person’s whole body and generate the child’s reflection on their embodied experience with treatment.^48,49 Each child was asked to lay down on a large sheet of paper while an outline of their body was drawn, and encouraged to draw, write, or use stickers to talk about their illness and treatment journeys. For this interaction, physiological reactions to treatment such as nausea, skin irritations, changes in colour of eyes/skin/body fluids, gastrointestinal problems, and pains. The data collectors drew on these activities dynamically, not following a start-to-finish interview order. For example, some children were shy, and needed time before they would take the proffered pencils. Others first drew other pictures, and drawing their body outline was introduced as a next challenge. Trust was thereby gained allowing for probing on more sensitive psychosocial changes, and challenges, by asking how and whether those reactions made them feel sad, angry, lonely, or with low energy.

The centrality of participatory activities within each interaction along children’s treatment timeline nurtured comfort, and ability to express thoughts and experiences, including challenges encountered with treatment preparation and ingestion. Many of the concerns shared with researchers had low clinical relevance, and could be dismissed by parents or care providers yet were critical for acceptability of the treatment for children, such as the colour, and size of their pills, or the number of pills taken daily. Over time, the researchers were repeatedly surprised by the complexity of child participants’ emotional and psychological experiences, and the sophistication with which they represented these, often using a combination of drawn art, acting out, gesture, expression, and (non-linear) verbal narratives.

The primary research interest had been in children’s experiences of the new formulations. Broadly, these were positive, with the reported taste and ease of preparation, and administration better than previously available formulations. However, what children really wanted to talk about were their worries about their parents, siblings, and friends; their sadness and hopes; and the things they did not understand. This was remarkably similar across the three countries, by child age, and gender. Many of their experiences of living with DRTB were deeply troubling, and experiences with new formulations were only one among a myriad of other issues that mattered, such as loss of friends or interruptions to schooling. Though the original question of treatment acceptability was answered, the team reflected that truly participatory research, that included children equitably, would have also found ways to include children in the development of the research objectives, design of the data collection tools, analysis, and dissemination plan.

Case Study 2. The REACH Study: Play-shops

Cervical cancer, largely preventable with the human papillomavirus (HPV) vaccine, is a leading cause of cancer mortality in Zambia.⁵⁰ REACH (Reaching for Equity in Adolescent Care through HPV Vaccination) aimed to develop implementation strategies to scale-up HPV vaccination at three sites (urban, peri-urban, rural). This included integrating vaccinations into adolescent HIV programming to improve access for young people with HIV, and to avoid introducing stigma or disclosures in schools, where the vast majority of vaccine campaigns were run. The study adopted a multilevel approach, with substantial community engagement. As part of the first ethnographic phase, 14 play-shops were developed with 93 girls split by age (9–11-years-old; 12–14-years-old).^51,52 Girls identifying as living with HIV (n=34) were grouped separatelyto avoid unintentional disclosures, and identify their specific experiences and needs. Play-shops are a unique form of group discussion that revolve around play, and contrast the methods of traditional focus group discussions. In REACH, they comprised of three components: a focus group organized as a game using a large foam die; a role play on “going to the clinic to get the HPV vaccination”; and a mapping drawing exercise to identify the best and worst places for distributing the HPV vaccination. Their purpose was to learn about and integrate young people’s experiences, concerns, and interests in the development of vaccine implementation strategies.

The analysis is comparing data from the play-shops, with findings drawn from other methods including participant observations, and key informant interviews with site staff, and focus groups with community leaders and guardians of girls in the recommended vaccine age range. Findings suggest that critical details emergent from the play-shops are absent in conversations with adult participants. Children’s map drawings and discussions reveal strong values around privacy during vaccination encounters, and unacceptability toward intrusive questions posed by health care professionals. Role plays emphasise how household dynamics are shaping girls’ access to vaccines, and the ways by which girls are asserting their agency to navigate access. The study is also illuminating how resource shortages bar access, and place undue onus on girls to complete the recommended vaccine schedule. These insights are informing next steps in vaccine implementation strategy design.

Case study 3. The Young Cancer Caregivers Study: Photoelicitation

Cancer is also one of the leading causes of mortality and morbidity in the US, and a main condition for which people receive family care. An estimated 5.4 million caregivers are below 18 years of age.⁵³ The Young Cancer Caregivers study focused on how young people support or care for their parents during cancer, with the view to understand young people’s ways of caregiving, conceptualizations of young caregiving by caregivers, cancer survivors, and health care providers, and how best to support cancer survivors and their children during cancer.⁵⁴ Children (11–18-years-old, n=10) of participating cancer survivors living in rural areas of the US took part in a series of two arts-based virtual interviews. They were invited to take photos representing the care they provided for their parent, and then asked to discuss their photos using photoelicitation techniques and play.⁵⁵ Play was used as an orientation with which each interview encounter was approached, to transform power dynamics, entrust children as co-researchers, and learn about the meanings, and understandings of their photos without imposing upon them the rigidity of a research objective or judgment of a pragmatic adult. Drawing activities, photography, and spontaneous storytelling were interspersed with conversational interviews, to enable researchers to (really) listen to the children, and come to a more contextualized understanding of their lives and motives. This approach served to engage children in conversations about their photos in personal and unguarded ways, and “challenge extractive readings of children’s photographs or glossing over of their important messages”.⁵⁶

The study revealed that although health providers and parents found it challenging to identify, and recognize children as caregivers, young caregivers accomplished a diverse array of activities for their parents and families during cancer. These activities were far from uniform, shaped by the type of cancer and context in which care was delivered and received, and sometimes out of the realm of an adult framing of “care”; for example, less about the activity undertaken and more about the sociality and identity created for the child undertaking it. The study showed that children’s conceptualizations of care can offer a better framework for policy-makers, and health care providers, to assess the care needs of families affected by cancer, in ways that avoid sensationalizing or exceptionalizing children as caregivers.^51,57 This can enable the identification of more appropriate forms of social, economic, and medical support.

Case study 4. The P-ART-Y Study: Vignettes

The PopART (Population Effects of Antiretroviral Therapy to reduce HIV Transmission) for Youth or P-ART-Y Study aimed to evaluate the acceptability and uptake of a HIV prevention package, including universal HIV testing and treatment, among young people in Zambia and South Africa. P-ART-Y was nested into the HPTN 071 (PopART) trial.⁵⁸ Under the study protocol, adolescent participants were to complete baseline surveys, among other data collection strategies. With little experience in conducting surveys with young people, the research team sought the involvement of adolescents themselves to co-produce a process and methods, or strategies for eliciting their input into the survey design and implementation. Adolescent community advisory boards (CAB) that were established within each community afforded an opportune platform to operationalize this engagement. An initial meeting with a few core members of the CAB yielded advice to arrange meetings with all board members, and other adolescents considered to be key informants in the community for input on the survey tools (for example, comment on the comprehensibility, ease and difficulty of questions asked of other adolescents in the community), survey implementation processes, and other concerns. Storytelling and vignettes were identified as optimal methods for use at these meetings. An adolescent archetype, John, was developed: John lives in the community with his mother and father, and two siblings; he goes to school, but he cannot read English very well. Participants (adolescents attending the meetings) considered John’s attributes and circumstances when discussing the questions in the survey tool, and related challenges. Additional prompts included: Is the question clear? Is the question relevant- consider John’s attributes? Will adolescents answer the question honestly?

The adolescents related well with the archetype, John, who they found to represent someone they either knew or had heard about in their community. They identified what they considered to be culturally inappropriate questions, suggested edits, and alternate responses, and ideal environments for conducting the survey. Questions like ‘what sex were you born’, and ‘do you ever engage in vaginal, oral, or anal sex’ were considered inappropriate by most, with the risk of inciting violence from potential future participants. The response ‘not willing to disclose’ was recommended to help reduce the sensitivity of questions such as ‘the last time you had sexual intercourse, why did you do it’. Adolescents also thought that having a portion of the survey self-administered could disadvantage participants who had poor literacy. An assessment criterion was thus included to determine whether this section was to be self-administered or administered by research staff. The adolescents rejected offers of incentives to participants arguing that this would negatively affect adolescent participation in future studies. They instead prioritized confidentiality, suggesting adolescents would prefer taking the survey away from their parents and guardians, and urged researchers to ensure a conducive environment was created before the survey was launched. The pre-survey consultation served to enhance young people’s engagement in the study context, research process, and provided an opportunity for them to assert agency. The research team gained substantially, with opportunity to develop more rigorous and acceptable data collection tools.⁵⁹

Discussion

In this manuscript, we posit fundamental considerations when conducting research with children. We briefly introduced some of the historical complexities involved in including children in global health research, followed by illustrations of how these were addressed in four research contexts to unravel critical insights from young people. We situated these case studies within an epistemological frame that positions children as experts of their own experiences, and necessarily requires shifts in extant research power-dynamics to allow for the co-production of research design, approach, method and analysis. The case studies and methods used were not exhaustive; rather, they were intended to hint at the array of approaches that can be borrowed upon in different settings to fulfil, and achieve a variety of purposes, and gains in paediatric health research.

They also illuminate key gaps. Though we believe in the sophistication of our methods to listen to children’s experiences, the process is not simple or formulaic, nor does it guarantee success in achieving the high ideals of equitable inclusion of children. Genuine co-production that involves children in every step of the research process, including determination of its success or failure, may not align with potentially narrower academic definitions,¹⁹ and may have implications for the feasibility of studies, particularly when funding structures inhibit communities that have been marginalised, or made vulnerable from articulating and directing research goals.²⁷ There is also opportunity to adapt the so-called traditional qualitative approaches to inquiry, such as in-depth interviews, and focus group discussions, to address power dynamics and norms, and respect children as experts.^60–62 A heavy onus remains on paediatric health researchers and funders to invest in the training, time, and resources needed to effectively adapt and implement research methods that draw out, and highlight children’s voices.⁴

Including children in research and related processes must also be continually balanced with the need to protect those who are considered to be vulnerable from harm, or the fear of harm.⁶³ There is a parallel risk of disregarding or misinterpreting the perspectives of a child as naïve, immature, or fleeting.¹⁷ It is precisely these concerns, and their subsequent transformation into criteria for exclusion, that global health must address. Children are capable of articulating their likes and dislikes, pains and pleasures, hopes and dreams; rather, historically, we have just not been adept at or, even at times, willing to listen. Those of us who work in paediatric research must identify and draw on apropos methodological approaches that tap into the child’s capacity to elucidate their dynamic lived realities. Indeed, their remarkable creativity and expert knowledge of their own lives can be harnessed to inspire more appropriate interventions.

Conclusion

As we take stock of the increasingly creative methods being deployed by researchers to engender spaces where children feel safe to be able to share their experiences, there is still considerable progress to be made in supporting the pursuit of their priorities, and in enabling the inclusion of those with intersecting vulnerabilities. A common thread is for researchers to invest in sharing power with children, and supporting them to take the time needed to agentically engage.⁶⁴ We offer some priority considerations for global health paediatric researchers toward this end. Firstly, researchers must recognise and explicitly articulate the impact that the research setting, questions, and activities might have on the children they seek to research. They must interrogate the relative power they hold to determine the direction of that research, and reflexively act against ‘coloniz[ing]’ a child’s voice.^23,61 Frameworks for participatory research and co-production, that help to elevate children’s perspectives, can be built into the design and implementation of paediatric health studies, including clinical trials.⁴ The presented case studies offer a glimpse into the variety of methods through which these principles may be operationalized and tailored to suit diverse age-groups, socio-cultural, and research contexts.⁶⁵ They also demonstrate the value of, and need to safeguard technical and financial resources, including research expertise and time, when engaging children in health research. Secondly, research is innately in a process of formation, reacting to and directed by relationships between participants and research teams, and in the case of children, often their caregivers. Findings from research aimed to elicit children’s voice should not be viewed as ‘representative’ or a complete ‘capture’ as much as dialogically formed and situated within these wider contexts. Integrating the perspectives, and preferences of others who have influence over or impact children’s socialisation, such as parents and caregivers, in parallel to those of the child, is critical, and in some cases a legal imperative. Capturing and reflecting on the entire research journey with children can provide a fuller picture of what it is like to work with them in an equitable manner, and enrich the literature on the many ways children are capable of contributing to knowledge generation. Indeed, the paediatric health literature must acknowledge the bidirectional knowledge gained, not only the process of how children engage in, contribute to and grow from having taken part in research, but equally come to serve as teachers for their researchers.