Childhood

http://chd.sagepub.com/

Children as ethnographers: Reflections on the importance of participatory

research in assessing orphans' needs
Kristen E. Cheney
Childhood 2011 18: 166 originally published online 11 April 2011
DOI: 10.1177/0907568210390054

The online version of this article can be found at:

http://chd.sagepub.com/content/18/2/166

Published by:

http://www.sagepublications.com

On behalf of:
Norwegian Centre for Child Research

Additional services and information for Childhood can be found at:

Email Alerts: http://chd.sagepub.com/cgi/alerts

Subscriptions: http://chd.sagepub.com/subscriptions

Reprints: http://www.sagepub.com/journalsReprints.nav

Permissions: http://www.sagepub.com/journalsPermissions.nav

Citations: http://chd.sagepub.com/content/18/2/166.refs.html

>> Version of Record - May 13, 2011

OnlineFirst Version of Record - Apr 11, 2011

What is This?

Downloaded from chd.sagepub.com at University of Sussex Library on November 24, 2013

Article

Childhood

Children as ethnographers: 18(2) 166–179

© The Author(s) 2011

Reflections on the importance Reprints and permission: sagepub.

co.uk/journalsPermissions.nav

of participatory research in
DOI: 10.1177/0907568210390054
chd.sagepub.com

assessing orphans’ needs

Kristen E. Cheney
International Institute of Social Studies of Erasmus University Rotterdam, The Netherlands

Abstract
Critiques of child participation within aid programming suggest that it is superficial and insubstantive
for the fulfilment of children’s rights. By employing former child research participants as youth
research assistants, the collaborative research design developed for my research project on the
survival strategies of African orphans and vulnerable children (OVC) has yielded insights with
implications for policy and practice that could not be gained without the extended ethnographic
inclusion of children, as both participants and researchers. In this article, I share my reflections
on doing participatory ethnography with children and youth to demonstrate that ethnographic
research is appropriate to the tasks of increasing both children’s participation and the effectiveness
of children’s rights – especially when it models children’s participation in its own research
design. Further, I argue that involving young people in research can yield greater ownership of
organizational practice and become transformative of young people and their relationships with
their communities.

Keywords
Africa, methodology, orphans, participation, policy, research, rights

Children have long been objects of anthropological analysis – through studies of child
rearing, for example – but research on children’s own experiences of social processes is
rather recent (Hirschfeld, 2002). While conducting previous research with children in
Uganda in 2000–1, I therefore tried to engage children in discussion of what they thought
of their social positions and the ways the alarming trends that were happening in their
country affected them. This I called child-centred ethnography (Cheney, 2007): attention
to the ways children act, not just as objects of socialization, but as social agents and cul-
tural producers in their own right (James et al., 1998).

Corresponding author:
Kristen Cheney, International Institute of Social Studies, PO Box 29776, The Hague, 2502 LT,
The Netherlands.
Email: cheney@iss.nl

Downloaded from chd.sagepub.com at University of Sussex Library on November 24, 2013

Cheney 167

My awareness of the rising number of orphans, mainly due to AIDS, intensified dur-
ing that time. The statistics suggested that their prospects were not good: numbers of
orphans in Uganda and other African nations were expected to double within the next
few years as the AIDS epidemic was reaching its apogee (Evans, 2001: 28). When I
returned to Uganda in the summer of 2007 to start a research project specifically on
orphans’ survival strategies, I was invested in finding ways to continue working with the
children and families with which I had developed relationships on past visits to Uganda,
not only to draw on my existing resources, but to fulfil the promise of children’s partici-
patory rights. Specifically, I wanted my research to be collaborative, participatory and
decolonizing – a counterpoint to typical research and policy-making concerning both
Africa and children. Following critiques like those by Christensen and Prout (2002) and
James (2007), my primary concern in both instances has been to create spaces for mean-
ingful participation to challenge broader structures of power in research about children,
in the hopes of making children’s rights more relevant to their everyday lives.
In what follows, I share my experiences designing and conducting child participatory
research with orphans to explore the utility of participatory ethnographic methods in
child-centred research, not just within anthropology but within aid and development
organizations hoping to influence child-oriented policy. I aim to demonstrate that ethno-
graphic research, the hallmark methodology of anthropology, is appropriate to the tasks
of increasing both children’s participation and the effectiveness of children’s rights –
especially when it models children’s participation in its own research design. I first frame
the discussion with an overview of the lack of children’s participation in development
and research contexts. I then turn to the ways I addressed those concerns in my own
research design. Despite the challenges involved in incorporating children and youth
participation into research design itself, I argue that the benefits of involving children as
ethnographers far outweigh the drawbacks. These benefits include establishing greater
rapport to challenge presumptions about children’s competencies. The research process
thus became transformative of adult–child relationships through greater ownership of
organizational practice.

Lack of children’s participation in organizational contexts

An abundance of recent literature critiques the practice of child participation within aid
programming as superficial and insubstantive for the fulfilment of children’s rights
(Campbell, 2008; De Waal and Argenti, 2002; Evans, 2007; Frankel, 2007; Invernizzi
and Milne, 2002; Milne, 2005). Aid organizations are often driven by international
development agendas that use children’s rights frameworks as a guide in designing par-
ticipatory programming. Even where rights discourses are not seen as foreign imposi-
tions, they can still fall short of participation goals when the protectionism that undergirds
children’s rights reinforces pre-existing cultural presumptions – local, global, or organi-
zational – of children’s social incompetence. Children’s participation is often limited in
that it tends not to involve children at the decision-making level, reinforcing pre-existing
cultural attitudes which, while certainly not confined to my field site, Uganda, are cer-
tainly prevalent there. Structural factors such as poverty and instability have made the

Downloaded from chd.sagepub.com at University of Sussex Library on November 24, 2013

168 Childhood 18(2)

fulfilment of children’s rights particularly challenging in Africa, where children dispro-

portionately suffer human rights violations (Ehlers and Frank, 2008: 111). Further, cul-
tural practices challenge government efforts to cultivate child participation. As John
Okiror, Uganda’s OVC (Orphans and Vulnerable Children) Secretariat, pointed out to
me, ‘Uganda is a country which is rich culturally. We have so many different kinds of
culture, and . . . most of these cultures, I think, treat children as people that are supposed
just to take; they are not supposed to be listened to. They are supposed to take what an
adult does.’ Ugandan adults often think that children cannot contribute meaningfully to
solving social problems, or that children do not know what is good for them. Participation
is thus the biggest challenge, because of issues with both cultural and literal translation
(Cheney, 2007). Organizational cultivation of children’s participation was hampered
early on by efforts to educate children about their rights. Dorothy Oulanyan of UNICEF
Uganda explained, ‘We started by telling people what children’s rights were, and chil-
dren quickly picked up on it. They may not understand it exactly as it is written in the
Convention [on the Rights of the Child] . . . but then we got to a point where the children
were running ahead of the parents and the rest of the community.’ Before long, UNICEF
had adults coming to them, saying, ‘You are spoiling our children! Now we can’t even
discipline [them].’ Because of this, and despite adjusting their strategies to stress parental
guidance, UNICEF has found it difficult to reverse the backlash against children’s rights.
Legal scholars Ehlers and Frank state that in Africa, ‘there is a lack of national poli-
cies that allow for the formal, ongoing participation of children . . . even amongst chil-
dren’s rights organizations, there have been few attempts to integrate the participation of
children into the way in which these organizations do their business, and both national
policy and general practices need to be addressed to accommodate this’ (Ehlers and
Frank, 2008: 123–4). Though children have a right to participation, they are often
excluded from aid and development programming, especially when considered vulner-
able (Powell and Smith, 2009). Given the very complex and yet concrete barriers to
fulfilment of children’s rights, creating opportunities for children to participate in policy-
making and NGO programming offers great promise for improving their overall situa-
tions. Recognizing this, in 2008, the Uganda Ministry of Gender, Labour, and Social
Development worked together with UNICEF and the Uganda Child Rights NGO
Network (UCRNN) to create a child participation guide for NGOs working in the coun-
try, but the booklet makes few references to the particular barriers in the local context
(Uganda Ministry of Gender Labour and Social Development et al., 2008), sticking
instead to defining the broader principles of children’s rights.
Ehlers and Frank have written that, ‘The primary question that arises is how [partici-
pation efforts] should be evaluated in terms of their value for children in Africa?’ (Ehlers
and Frank, 2008: 111). They enumerate four criteria for child participation: ‘that children
involved understand the intentions of the project; that they know who made the decisions
concerning their involvement, and why; that they have a meaningful role; and that they
volunteer for the project after its nature has been made clear to them’ (Ehlers and Frank,
2008: 114). ‘Meaningful’ is a very subjective term in this context; I would further define
participation as having a positive collective impact – however small – on the situation
children face in the local context. Being able to affect policy by incorporating children’s
perspectives should be a primary outcome of any programme’s design goal. It must also

Downloaded from chd.sagepub.com at University of Sussex Library on November 24, 2013

Cheney 169

work within the context of children’s everyday realities rather than universals; otherwise,
they may remain ineffective. As I hope to show here, participatory ethnographic research
with children is essential to the task of better understanding children’s everyday situa-
tions in any given social context.

Lack of children’s participation in research contexts

As an engaged anthropologist in childhood studies, my presentations often focus on what
is not working for children in Africa; how, for example, institutions both local and global
fail to create meaningful structural changes to improve the lives of children, or even
avenues of participation for them, due to a protectionist – rather than empowering –
interpretation of children’s rights. I am often asked, ‘Then what would real participation
look like?’ This is indeed the question – and not a few scholars and practitioners have
tried to answer it. Social researchers have written a number of books and articles address-
ing the issue of research with children (Alderson and Morrow, 2004; Christensen and
James, 2000; Hirschfeld, 2002; James, 2007). As Jo Boyden has pointed out, ‘children
definitely did not participate in the drafting of the Convention [on the Rights of the
Child]; nor have they been consulted as to the most effective manner of implementation’
(Boyden, 1997: 222). Though there are valid arguments that children are not always
capable of making policy, Judith Ennew (2002) noted that the CRC makes no distinction
between the competencies of 18-month-olds and 18-year-olds. While social scientists
have shifted a more significant gaze towards children’s lives, Pia Christensen and Alan
Prout have also acknowledged that, at least within academic research, ‘The perspective
of “children as social actors” has created a field with new ethical dilemmas and respon-
sibilities for researchers within the social study of childhood’ (Christensen and Prout,
2002: 477)�������������������������������������������������������������������������������
. We cannot therefore critique organizational practices for their lack of chil-
dren’s participation without also interrogating the correlative absence of children in
social research. Andy West of Save the Children China suggests that ‘A first step toward
overcoming resistance to participation is to understand local social constructions of
childhood and how they might impact participatory work . . . adult practitioners . . . must
actually engage with children in order to expand their preconceived constructions of
childhood’ (West, 2007: 131). This sounds like an anthropological enterprise, which
drives home how aid/development organizations might benefit from involving more
anthropologists in their research: this insight is really quite obvious to them. Ethnographic
research is also good at revealing the incongruities of cultural intersections, particularly
between universalized ideals, the institutions that operationalize them and local
communities.
While many organizations, governmental and non-governmental, are working hard to
promote children’s rights in Uganda, they often find it counterintuitive to work with
children on even a semi-equal level, opting instead to implement children’s rights accord-
ing to the ‘best interest principle’, which posits that the fulfilment of children’s rights
must still lie in the hands of adults who know what is best for children. While this does
indeed often serve to protect children, it can also work to their disadvantage. For exam-
ple, Ugandan children who lose their parents are rarely consulted about which relatives

Downloaded from chd.sagepub.com at University of Sussex Library on November 24, 2013

170 Childhood 18(2)

with whom they would like to live, usually going to live with whichever extended family
member will take them. They are sometimes consequently exploited for their labour,
resources, or land (Rose, 2005) – meaning that the adults working under the guise of
children’s best interests are actually looking out for their own best interests. However,
John Okiror pointed out to me that implementing participatory practices is also a matter
of convincing children that they have something to contribute. In my research with chil-
dren, I often find that it takes time to build rapport mainly because children are prepared
to listen to me rather than having me listen to them. They are often initially baffled by my
wanting to learn from them and need encouragement – even permission – to talk freely.
These were the practical concerns I had while planning my recent field project with
Ugandan children orphaned by AIDS.

Participatory research design: Creating spaces for children’s

participation
In my most recent field project on the survival strategies of OVC in Africa – and how
various interventions may help or hinder their well-being – I wanted to address these
power dynamics, not only between adults and children, but within knowledge production
about children by adults, and about Africa by the West. I thus developed my research
design with these epistemological questions in mind. I wanted to conduct this research in
ways that emphasized children’s participation, not just as respondents but as people who
help shape the research design by better incorporating children’s concerns. According to
Ehlers and Frank, ‘in designing projects, adults need to be mindful of . . . how the infor-
mation gathered in a participation process can benefit the child . . . what mechanisms
have been provided to ensure that the information is channeled in order to create material
improvements in the child’s circumstances . . . [and] to ensure that the intervention will
in no way harm the child, or infringe on his or her rights’ (Ehlers and Frank, 2008: 116).
I also tried to incorporate these ethical considerations into the research design. Working
in a team can be a challenge for an ethnographer: anthropologists who typically claim to
work alone, or only marginally with local people, when the truth is that every research
participant, every friend and cultural guide, is a collaborator in building our cultural
interpretations. I decided to list these among my best assets for the project by inviting
former child research participants and community stakeholders to be involved in shaping
the research design to better reflect their concerns with orphan survival.
Ultimately, the goal was, as much as is possible, to decolonize the research (Mutua
and Swadener, 2004). Research in Africa poses a number of ethical issues with which
anthropologists continually struggle: are we ever able to escape our disciplinary begin-
nings in the colonial enterprise (Ntarangwi et al., 2006)? Are we taking knowledge pro-
duction away from local people by virtue of the fact that we are typically outsiders?
While outside the purview of this article, these are valid questions which must be
answered in the context of the history and development of Africanist anthropology as
well as childhood studies. Ultimately, then, it is not for me to proclaim the research
decolonized. My only claim here is that these questions have to be addressed by action
rather than words, and this is what I attempted to do.

Downloaded from chd.sagepub.com at University of Sussex Library on November 24, 2013

Cheney 171

I first approached a community school with which I and my family had had a long
association. I knew that many orphans lived in the area, and the school catered to orphans
and destitute children. Working with my research coordinator, Faridah – who had grown
up in the community – we had children draw pictures of their homes and the people who
live there. Through interviews with the children about their drawings, we learned of the
children’s general circumstances at their homes, and thus were able to identify orphans.
This also gave us a chance to see how the children would interact with us, in groups and
individually. We organized those children into five focus groups, one for each class from
kindergarten to fourth grade.
I then approached the children whose life histories I had recorded in my book, Pillars
of the Nation (Cheney, 2007). By this time, they were 18–20 years old. I had already been
in touch with most of them and had been helping them pay for schooling; others I had
lost touch with and was able to relocate only when I returned. Several of them had been
orphaned themselves, which had jeopardized their abilities to complete education and
obtain job skills. Given that they were younger than myself – and thus closer in age to
our current study participants – I could design the research in such a way that it would
allow young people, both the child participants and the older youth, to have greater over-
all input into the research process. I thus decided I would involve the youth as research
assistants, providing compensation of transportation and supply costs, and incentive
through financial assistance for school.
Once I had decided this, and all five of the youth I approached had accepted, I was still
daunted by the task of figuring out how to teach the youth to do social research – until I
remembered my old friends Martin Geria and Simon Opolot of the African Training,
Research, and Innovation Network (A-TRAIN). I had known them both since my first
visit to Uganda in 1993. They had recently formed A-TRAIN to ‘foster recovery, growth
and development in Africa through training, research, innovation and networking in the
creation, acquisition, adaptation and application of knowledge that has become  a key
factor in the stimulation and promotion of growth and development’.1 I knew they had
already designed training programmes for participatory research in refugee communi-
ties, so I approached A-TRAIN about conducting a workshop with my potential youth
research assistants (RAs) to get them better acquainted with social research principles
and methods. A-TRAIN decided they could design a two-day workshop that would get
the youth RAs started, and then we could have occasional one-day workshops to address
concerns, discuss findings and decide on new directions for the research design. In the
meantime, my research coordinator would help the youth RAs with logistical and meth-
odological support.
The next section details the resulting research design, in which children became eth-
nographers. This was both challenging and rewarding for the whole team.

Children as ethnographers: Challenges and contributions

Christensen and Prout have referred to the need to acknowledge children’s potential
contribution as ‘ethical symmetry’:

Downloaded from chd.sagepub.com at University of Sussex Library on November 24, 2013

172 Childhood 18(2)

By this we mean that the researcher takes as his or her starting point the view that the ethical
relationship between researcher and informant is the same whether he or she conducts research
with adults or with children . . . any difference between carrying out research with children or
with adults should be allowed to arise from this starting point, according to the concrete
situation of children, rather than being assumed in advance. (Christensen and Prout, 2002: 482)

To help accomplish a sense of young people’s authority in my research design, I used

Pryor and Ampiah’s (2004) data chain model. In a data chain, collected data act as a
stimulus for dialogue to interpret the data and produce findings, generate new data from
the research teams’ impressions, form narratives and generate new questions for the next
phase of the research. I thus relinquished much of my authority as the principle investi-
gator in order to privilege children and youths’ knowledge. We would build our data
chain over the course of six total youth RA workshops in the two years we conducted the
study. We developed data chains by coming together every four to six months to share
findings made by individual youth RAs, then looking for commonalities among their
reports. I would often ask questions about whether a certain interpretation I was develop-
ing from their data was accurate, and this would lead us into prolonged and nuanced
discussions about observed social phenomena concerning orphans, social actions and
their meanings. We would collectively answer some questions but invariably yield new
ones – which translated into the next research task for the youth RAs.
Many of the research team’s conversations centred on methodological concerns.
Sometimes youth RAs would be unnecessarily rigid or data-driven in their interactions
with the children. For example, youth RA Jill described a trip to one of her focus group
children’s homes. The girl was out playing when Jill arrived, so another child was sent
to fetch her. Jill got the distinct impression that the child was upset that she’d been
called away from playing, and so was not forthcoming with information that day. I sug-
gested that youth RAs go to the children instead of expecting the children to come to
them, i.e. conduct more participant observation. I urged the youth RAs to exercise
patience and deal with the children on their own terms; they might even learn a little
more about the children in the process. At the same time, several youth RAs were com-
plaining that guardians would hover over them when they visited children at home;
however, the research method enabled the youth RAs to work better with the children
on their own terms while also evading the guardians’ surveillance, thus killing two birds
with one stone. I encouraged the youth RAs to draw on their experiences of having been
my research participants when they were younger: what stall tactics did they employ if
they didn’t feel like chatting with me on any given day? How did I react to them at the
time? What responses to their feelings would they have appreciated? This line of ques-
tioning helped them to understand how the children they were working with might
perceive them, and to adjust their research strategies to better honour the children’s
needs and wishes.
The youth RA workshops were often the most constructive conversations while con-
ducting this research. Not only were they useful in research design, but they gave the
youth RAs a chance to show how they were growing in skills and knowledge about
the predicaments of children in their focus groups, and orphans in general. It was an

Downloaded from chd.sagepub.com at University of Sussex Library on November 24, 2013

Cheney 173

opportunity for them to raise questions in an open forum so that we could all trouble-
shoot about the challenges of fieldwork together.

Challenges
Coordination of the research team was a difficult transition for me, having always done
my fieldwork solo. Until I was able to secure external funding that allowed me to obtain
course release from my institution to stay for longer than six weeks’ duration, I often felt
relegated to the position of logistical officer – and bank: because the project involved
sending six other people to the field on a regular basis, it was expensive. For the first year
and a half, the vast majority of funds came out of my own pocket, as did the school fees
I offered my youth RAs as compensation for their assistance. And yet the quality of
observation and data I received from the youth RAs tended to vary. There were numerous
reasons for this: some youth RAs just showed more propensity for doing fieldwork;
some did good fieldwork but did not keep detailed field notes. In those instances, it was
helpful to work with the youths’ individual talents. Malik, a musician, was quite taken
with the digital recorders, but he didn’t feel adept at writing, especially in English, so I
encouraged him to record his field notes orally and had them transcribed. James was also
very taken with the video camera, so I had him work with the camera more extensively.
Some had family issues or illnesses that prevented them from conducting research as
often as promised. At the same time, the communal nature of the work made compilation
of data, and thus its analysis, considerably slower – if more rewarding.
Working with children in applied settings involves many of the same obstacles as
doing research with children: namely, adults. Adults – especially gatekeepers such as
parents, guardians and teachers – are often uncomfortable with researchers’ motivations
for talking to their children.2 Indeed, they are usually puzzled by researchers’ actions:
why don’t I just talk to the guardians about their children’s needs? Sometimes, guardians
are worried about children reporting information that might make them ‘look bad’ to
outsiders whom they are aware have different approaches to child rearing. They there-
fore wish to control the researchers’ interactions with children as much as possible.
Likewise in aid organizations’ work: West has also written that, ‘adults resist and control
the development of children’s participation often because it disrupts adults’ established
working pattern and challenges existing norms’ (West, 2007: 126). One answer to this
concern is to design research around children’s concerns themselves by, for instance,
incorporating play into research or allowing children to identify their own needs and
concerns. Flexibility must be built in from the beginning; ethnographic projects lend
themselves well to this by their very exploratory nature, but this becomes even more
advantageous when working with children, whose perspectives are routinely underval-
ued. Meeting and spending time with children in multiple spaces outside adult surveil-
lance, such as joining children in play, helps to overcome those obstacles.3
Ethical considerations were numerous, but the issue of most conversation among the
researchers was about the expectations of the community. Community members were
more likely to accept me if they thought I was an aid worker because they anticipated
material compensation for their family’s participation in the study. Designing research

Downloaded from chd.sagepub.com at University of Sussex Library on November 24, 2013

174 Childhood 18(2)

on orphans to include young Ugandan research assistants would remove me from regular
contact with the families of the children. This might seem a disadvantage – and in some
ways it certainly is – but it has to be placed in the context of the community’s increasing
interactions with the aid industry: given the high expectations the community held of
whites (azungu) who come taking an interest in orphans, my absence served to temper
those expectations. They did not completely disappear, though. By becoming youth RAs,
the youth inadvertently became outsiders within; the caregivers perceived them as hav-
ing an elevated status – but one they could still manipulate by virtue of being elders
dealing with young people, whom they still expected to be subservient to them. Many
caregivers for the children in our study would waylay the youth RAs when they came to
visit, and ask them very pointed questions about what they were doing, why, what they
got out of it and what compensation the participants could expect. Guardians also asked
a lot of questions about what they could expect to get from it. The study community
largely misunderstood what research meant because their previous associations with
‘research’ were really NGOs doing needs assessments to figure out how best to spend
their charitable donations. Despite my earnest attempts to be clear from the beginning
that I was an independent academic researcher and not someone representing any power-
ful or wealthy aid organizations, guardians’ questions about compensation persisted
because they associated research with aid.
I should point out that few of these challenges had to do with involving children and
youth as opposed to a research team of adults. These issues are part of the broader
dynamic of ‘studying down’, or studying a group of people less privileged than one’s
own, and could easily apply to any research project run by westerners or even well-
educated Ugandans.

Ethnographic contributions to OVC policy analysis

This study, by employing former child research participants as youth RAs, has yielded
insights with implications for policy and practice that could not be gained without the
extended ethnographic inclusion of children, as both participants and researchers. First,
having older children who have ‘survived’ orphanhood act as youth RAs speaks to con-
cerns about young people’s competency to conduct research; through their own life
experience, language and other cultural competencies, they were already poised to
become successful junior ‘native’ anthropologists. Second, they regularly helped me
resolve issues of representativeness. For instance, when a youth RA talked about a child’s
experience, I regularly asked the team to what extent they thought it was a common
occurrence. Answers to that question were usually qualified with nuances that furthered
our common understandings of orphans’ experiences and drove our research agenda in
new directions. Third, the team regularly drew on their own, recent, childhood experi-
ence to relate to the younger child participants and to reflect on their own responses to
orphanhood. In this sense, it became a longitudinal study of orphans’ experiences over
time. Fourth, youth RAs helped discover that OVC themselves may have very different
concerns and competencies than their caregivers and aid organizations often presume.
One example is how children deal with death: it is often presumed that it is best to protect

Downloaded from chd.sagepub.com at University of Sussex Library on November 24, 2013

Cheney 175

children from exposure to death, but several examples in our study pointed to the oppo-
site conclusion, given children’s expressed desires for closure. Joan, an 8-year-old girl,
told her youth RA all she knew about her father, who had passed away before she was
born, expressing profound sadness that no one else in the family seemed willing to talk
to her about him: ‘I don’t even have a picture of him’, she lamented.
Some children in the study also indicated the need for disclosure not only about
their parents’ deaths but about their own situations – further challenging conventional
wisdom about children’s ability to deal with medical knowledge. Peter, a bright
12-year-old boy, likely knew his HIV-positive status even though it was never explic-
itly disclosed to him. Both his parents had passed away, and he and his 7-year-old
sister, Pauline, lived with his maternal grandmother and two cousins. He and his sister
were taking daily antiretroviral drugs (ARVs) received through The AIDS Support
Organization (TASO).4 Several grandmother caregivers told us that doctors had rec-
ommended against disclosing an HIV-positive child’s status to him until he is older. ‘I
think he already knows, though’, his grandmother whispered to us as Peter played just
out of earshot:

One time while playing outside my house, his friends told him not to run so fast for there were
rusted iron sheets nearby. His friends told him, ‘If those rusted iron sheets cut you, you will get
tetanus and die.’ Peter responded, ‘I know I’m already dead. I will be dying anytime soon.’ Of
course I faced him and told him never to say such a thing for he was too young to die, but deep
in my heart it crossed [my mind] that maybe he had figured out he was HIV-positive due to the
constant visits we make to [name of] Hospital and the drugs he takes.

Soon after our interview, a severe bout of pneumonia drove Peter’s sister, Pauline, into
the hospital. Peter’s cousins were allowed to visit her, but Peter was kept away on the
assumption that it would be too upsetting for him. But being kept in the dark and not
being allowed to see his sister seemed only to upset him more. When she passed away a
few weeks later, Peter was allowed to attend the funeral. He fainted several times, saying
‘I’m next, I’m next.’ He died two months after his sister, of pneumonia as well but also,
I suspect, of a broken heart. Peter died still having never been told by any adult that he
was HIV-positive.
This story may have ended differently had Peter been told of his condition. Ugandan
law states that children Peter’s age (under 12 years) may not voluntarily submit them-
selves for HIV testing (Sloth-Nielsen and Mezmur, 2008: 290), suggesting that they
cannot ‘handle’ the information. Yet Geiselhart et al. (2008) have determined that
children as young as 6 or 7 are psychologically prepared to handle knowledge of their
parents’ and/or their own HIV status. However, ‘the frequent claim that the children
are too young is mostly an excuse for not wanting to, or not knowing how to, com-
municate about HIV and AIDS’ (Geiselhart et al., 2008: 111). Peter’s example reveals
that laws ostensibly created in children’s best interests may thus actually serve adult
interests.
Hearing such stories likewise gave occasion for the youth RAs to reflect upon their
own experiences. In a debriefing interview with me six months into the project, Malik, a
20-year-old youth RA, recalled the last time he saw his mother:

Downloaded from chd.sagepub.com at University of Sussex Library on November 24, 2013

176 Childhood 18(2)

I saw my mum when she was dying though I didn’t figure out then that she was dying. But I
remember my grandmother ordered us to get out of the house at that instant and then when I
reached outside and peeped back, I could see my grandmother covering my mother with a
white piece of cloth. I was 7 years old . . . I was staying with my [maternal] uncle. My mum
had given him money and told him to take care of me and ensure that I went to school (which
he didn’t do), but later when my mother was on her death bed, I was brought to her. I spent one
night and next morning I was told to come sit beside her and wipe her face. After wiping it I
realized something was wrong and it was then that I was sent out and a white cloth covered
over her face.
They didn’t want me to know what was going on. I had never seen my granny do that so
there and then I knew something was wrong. Later my other granny came and explained that
mum was dead, and we should stay calm. However, I wasn’t calm. It was hard!
My fears there and then were that I couldn’t live without my mum, so I just didn’t know
what my life was going to become. I loved my mum so much, you know . . .
I was young, so I don’t even know what my mum died of; no one talks about it, and I am
afraid of bringing it up even now. I was scared at that time, I had no idea that she was going
to die, and I took long to believe she died; even up to now I don’t believe it.

A fifth, corollary benefit of the research design was that by participating in the study,
youth RAs like Malik were able to process and articulate their experiences of orphanhood
in ways that they were unable to when they were younger participants in my previous
study. This in turn gave them deeper perspectives on the situations of the children in their
focus groups. Ethnography is a very empathetic enterprise, and in this situation, the
youth RAs came to feel deeply for the children they worked with – redoubling their dedi-
cation to the project and its goals to ameliorate the suffering of orphans like those they
got to know through their participation in the project.
Overall, such incidents indicated that community responses to AIDS orphanhood,
often driven by both global and local assumptions about childhood, underestimated chil-
dren’s ability to comprehend disease and death, as well as their supposed resilience in the
face of adversities like the loss of parents. This suggests that child-centred, participatory
ethnographic research may yield more effective and sustainable programming that
reflects children’s actual needs better than conventional research methods typically used
in aid organizations’ outcome-focused programming and assessment. Further, youth RAs
are in a better position to elicit children’s honest responses: Ugandan children tend to
view adults as authority figures with privileged knowledge they impart to children – not
the other way around. Children aim to please adults by providing ‘correct’ answers to
questions, as pupils do to teachers. When it comes to orphanhood at the hands of AIDS
in Uganda, however, the children who have experienced it are clearly the experts. They
only need to be made comfortable with the notion that they have something to contribute
to adults’ understandings, and here again is where ethnographic fieldwork – which
involves extended stays and high levels of involvement with a community in order to
build rapport – proves effective for breaking down relationships of adult–child authority.
This can take some time for most adult researchers. For the youth RAs, however, build-
ing rapport with the younger children took no time at all: rather, the children in their
focus groups took to them immediately, as ‘big brothers and sisters’ in whom they could
confide.

Downloaded from chd.sagepub.com at University of Sussex Library on November 24, 2013

Cheney 177

The benefits of participatory research

Despite – and perhaps because of – the challenges associated with participatory chil-
dren’s research, I am confident that the involvement of local stakeholders young and old
in the research increased the quality of the results. In the end, this participatory, collabo-
rative design brought many benefits to its various stakeholders – child and adult – that
extended well beyond the research findings. Regular reflection with my research team
helped build collaborative relationships between the children and adults in the project as
it progressed, and people learned more about themselves and each other in the process.
Youth RAs said they had never realized how they themselves had been affected by
orphanhood until they got to know younger children; by the same token, the adults had
never realized how children felt about their circumstances until the project prompted
them to ask – and listen. In this way, participatory ethnography actually becomes trans-
formative of young people and their relationships with their communities as they realize
that they have to work together across all ages to better meet orphans’ needs. As Douglas
Webb argues,

The incorporation of children as constructive resources within the network of care provided for
especially vulnerable children is now a necessity as intra-family support is stretched. The
research focus should be on finding the correct balance between protecting children from
exploitation and recognizing their relative value in the domestic economy and as a contribution
to overall social capital. (Webb, 2005: 240)

Extending this idea, involving children and young people in research yields greater
ownership of organizational practice, as my study’s youth RAs have developed long-
term collaborations with the study community. By the end of fieldwork, youth RAs who
were saying they never ‘had a heart’ for young children before had taken a vested interest
in mentoring the children in their study groups. This should be no different for research
than for the applied projects that come out of them. In this project, youth RAs were able
to network with other local stakeholders, receive training in marketable skills and gain
work experience. Youth RAs and caregivers from the study are now on the local commit-
tee for an international NGO that provides employment to mostly female caretakers and
improves educational opportunities for the neediest OVC from the study. Youth RAs are
learning to do cooperative needs assessments and helping identify other beneficiaries in
the community.
It is clear that, as West points out, ‘Hierarchically structured organizations focusing
on outcomes and results as a measure of performance often cannot easily accommodate
children’s participation. A focus on process might dissipate the power structure and
rationales for outputs and planning’ (West, 2007: 123). Again, it seems that ethnographic
enquiry is especially appropriate to this task. Such a focus holds particular promise for
children in difficult circumstances, many of whom are finding fewer and fewer adults on
whom they can lean to help fulfil their needs. In the absence of those who can provide
for children’s needs, their rights take on incredible urgency. Participatory ethnography is
a great way to start addressing the structures that prevent not only participation by chil-
dren but the full realization of children’s rights.

Downloaded from chd.sagepub.com at University of Sussex Library on November 24, 2013

178 Childhood 18(2)

Funding
The research reported in the article was funded by the Fulbright Africa Regional Research Scholar
Programme.

Notes
1. From A-TRAIN’s mission statement.
2. This is considerably more difficult in western contexts, where ‘stranger danger’ is quite prevalent.
3. Of course, this can be considerably more difficult in societies like the US, where children are
constantly under adult supervision and surveillance due to concerns with abuse and abduc-
tions.
4. The AIDS Support Organization (TASO) was founded in Uganda in 1987 as a community-
based initiative to combat stigma and provide care to people living with HIV/AIDS. It has
grown into an international advocacy group and healthcare provider. For more information,
see www.tasouganda.org

References
Alderson P and Morrow V (eds) (2004) Ethics, Social Research and Consulting with Children and
Young People. Barkingside: Barnardo’s.
Boyden J (1997) Childhood and the policy makers: A comparative perspective on the globaliza-
tion of childhood. In: James A and Prout A (eds) Constructing and Reconstructing Childhood.
Washington, DC: Falmer Press, 190–229.
Campbell A (2008) For their own good: Recruiting children for research. Childhood 15(1): 30–49.
Cheney K (2007) Pillars of the Nation: Child Citizens and Ugandan National Development.
Chicago, IL: The University of Chicago Press.
Christensen P and James A (2000) Research with Children: Perspectives and Practices. New York:
Falmer Press.
Christensen P and Prout A (2002) Working with ethical symmetry in social research with children.
Childhood 9(4): 477–497.
De Waal A and Argenti N (eds) (2002) Young Africa: Realising the Rights of Children and Youth.
Trenton, NJ: Africa World Press, Inc.
Ehlers L and Frank C (2008) Child participation in Africa. In: Sloth-Nielsen J (ed.) Children’s
Rights in Africa: A Legal Perspective. Aldershot: Ashgate, 111–127.
Ennew J (2002) Future generations and global standards: Children’s rights at the start of the mil-
lennium. In: MacClancy J (ed.) Exotic No More: Anthropology on the Front Lines. Chicago,
IL: University of Chicago Press, 338–350.
Evans R (ed.) (2001) Ten Years After: Celebrating Uganda’s Success in Implementing Children’s
Rights. New York: UNICEF.
Evans R (2007) The impact of concepts of childhood on children’s participation in Bhutanese
refugee camps. Children, Youth and Environments 17(1): 148–174.
Frankel S (2007) Researching children’s morality: Developing research methods that allow chil-
dren’s involvement in discourses relevant to their everyday lives. Childhoods Today 1(1):
1–25.
Geiselhart K, Gwebu TD and Kruger F (2008) Children, adolescents and the HIV and AIDS pan-
demic: Changing inter-generational relationships and intra-family communication patterns in
Botswana. Children, Youth and Environments 18(1): 99–125.
Hirschfeld L (2002) Why don’t anthropologists like children? American Anthropologist 104(2):
611–627.

Downloaded from chd.sagepub.com at University of Sussex Library on November 24, 2013

Cheney 179

Invernizzi A and Milne B (2002) Are children entitled to contribute to international policy making?
A critical view of children’s participation in the international campaign for the elimination of
child labour. The International Journal of Children’s Rights 10(4): 403–431.
James A (2007) Giving voice to children’s voices: Practices and problems, pitfalls and potentials.
American Anthropologist 109(2): 261–272.
James A, Jenks C and Prout A (eds) (1998) Theorizing Childhood. Cambridge: Polity Press.
Milne B (2005) Is ‘participation’ as it is described by the United Nations Convention on the Rights
of the Child (UNCRC) the key to children’s citizenship? Journal of Social Sciences (Special
Issue No. 9): 31–42.
Mutua K and Swadener BB (eds) (2004) Decolonizing Research in Cross-Cultural Contexts:
Critical Personal Narratives. Albany, NY: State University of New York Press.
Ntarangwi M, Mills D and Babiker M (eds) (2006) African Anthropologies: History, Critique, and
Practice. New York: Zed Books in association with CODESRIA.
Powell MA and Smith AB (2009) Children’s participation rights in research. Childhood 16(1):
124–142.
Pryor J and Ampiah JG (2004) Listening to voices in the village: Collaborating through data chains.
In: Mutua K and Swadener BB (eds) Decolonizing Research in Cross-Cultural Contexts:
Critical Personal Narratives. Albany, NY: State University of New York Press, 159–178.
Rose LR (2005) Orphans’ land rights in post-war Rwanda: The problem of guardianship.
Development and Change 36(5): 911–936.
Sloth-Nielsen J and Mezmur BD (2008) HIV/Aids and children’s rights in law and policy in
Africa: Confronting hydra head on. In: Sloth-Nielsen J (ed.) Children’s Rights in Africa: A
Legal Perspective. Aldershot: Ashgate, 279–298.
Uganda Ministry of Gender Labour and Social Development, Uganda Child Rights NGO Network,
and UNICEF – Uganda Office (2008) The National Child Participation Guide for Uganda.
Webb D (2005) Interventions to support children affected by HIV/AIDS: Priority areas for future
research. In: Foster G, Levine C and Williamson J (eds) A Generation at Risk: The Global
Impact of HIV/AIDS on Orphans and Vulnerable Children. New York: Cambridge University
Press, 232–253.
West A (2007) Power relationships and adult resistance to children’s participation. Children, Youth
and Environments 17(1): 123–135.

Downloaded from chd.sagepub.com at University of Sussex Library on November 24, 2013