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Qualitative Health Research
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The online version of this article can be found at:
DOI: 10.1177/1049732311405799
2011 21: 1127 originally published online 20 April 2011Qual Health Res
Jo-Ann M. MacDonald, Anita J. Gagnon, Claudia Mitchell, Giuseppina Di Meglio, Janet E. Rennick and Joseph Cox
Include Them and They Will Tell You: Learnings From a Participatory Process With Youth
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Qualitative Health Research
21(8) 1127­–1135
© The Author(s) 2011
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DOI: 10.1177/1049732311405799
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Adolescence is a time of significant biological, cognitive,
emotional, and social change. It is a time when adolescents
make major choices about their health and health-related
behaviors. Sexual risk taking, alcohol and drug use, injury
and violence, tobacco use, unhealthy eating, and physical
inactivity often begin in adolescence and persist into adulthood
(Centers for Disease Control and Prevention [CDC],
2008). These unhealthy behaviors are modifiable; however,
adolescents are a challenging population to reach
with prevention education (CDC, 2010). Collaborating
with adolescents to develop prevention resources that take
into account their own perceived needs and their unique
perspectives is likely to enhance our effectiveness to
develop relevant resources (Kelly, Lesser, & Smoots,
2005), yet, this approach has been underutilized in prevention
research (Santelli et al., 2003). In this article, we
describe the application of our current understanding of
adolescent development to the data collection process that
took place in a study examining sexual risk taking. In addition,
we highlight the importance of youth participation
when conducting research with this population.
Adolescent Developmental
Characteristics and Prevention
Approaches
To be effective, health-promotion efforts with adolescents
must be tailored to this population’s cognitive and
405799QHR21810.1177/1049732311405799
MacDonald et al.Qualitative Health Research
1
University of Prince Edward Island, Charlottetown, Prince Edward
Island, Canada
2
McGill University, Montreal, Quebec, Canada
3
McGill University Health Centre, Montreal, Quebec, Canada
4
Montreal Health and Social Services Agency, Montreal, Quebec,
Canada
Corresponding Author:
Jo-Ann M. MacDonald, University of Prince Edward Island School
of Nursing, 550 University Avenue,
Charlottetown, PEI C1A 4P3 Canada
Email: jammacdonald@upei.ca
IncludeThem andThey Will
TellYou: Learnings From a
Participatory Process WithYouth
Jo-Ann M. MacDonald,1
Anita J. Gagnon,2
Claudia Mitchell,2
Giuseppina Di Meglio,3
Janet E. Rennick,3
and Joseph Cox4
Abstract
Encouraging youth voice, visibility, and active participation in adolescent-related research is strongly advocated in the
literature.In this article,we describe how participatory approaches informed by arts-based methods (e.g.,reflective writing,
dramatization) were used with adolescents to enhance the research process in an exploratory study designed to develop
and evaluate prevention resources for sexual risk-taking behaviors.Youth aged 15 to 17 years participated in iterative focus
groups conducted over a 1-year period in school settings in Prince Edward Island,Canada.Descriptions of our experiences,
strategies,and insights provide evidence for guiding practice to optimize adolescent participation in research.
Keywords
adolescents / youth; focus groups; qualitative analysis; research participation; risk, behaviors; sexuality / sexual health
psychosocial needs. Piaget (1976) described adolescent
cognitive development as the stage of formal operations.
In this stage, adolescents reach a superior level of reasoning
as compared to prior childhood thought. Adolescents
use abstract thinking to hypothesize and apply the principles
of logic to unfamiliar situations. Adolescent psychological
changes center on the struggle to develop a
personal identity and retreat from the willing acceptance
of ideas and conduct approved by parents (American
Academy of Pediatrics, 2002). Family-based activities
become less important and are replaced with those involving
peers. Health promotion strategies that do not address
age and gender-specific considerations are not likely to
be effective (Kelly et al., 2005).
Age differences are essential to consider, because
younger and older teens display significant differences in
cognitive abilities (AmericanAcademy of Pediatrics, 2002).
Pearls, Pith, and Provocation
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1128		 Qualitative Health Research 21(8)
Thesedifferences are evident in thinking patterns.Younger
teens might exhibit impulsive decision making and display
trial-and-error reasoning because their nervous systems
are still maturing. Older teens begin to think abstractly
and make the connections between cause and effect.
Gender differences are also important considerations,
because girls and boys undergo the changes of adolescence
in different ways (Kelly et al., 2005). Both boys
and girls might be uncomfortable discussing sexual
health topics in mixed classes because they experience
gender-based influences on sexual expectations and appropriate
behavior. To elicit attention and responsiveness in
adolescents, they should be approached with respect,
openness, and tact (Kelly et al.). In addition, adolescents’
needs for personal space, control, privacy, and confidentiality
(Bastable & Dart, 2008) should be respected when gathering
their input on appropriate prevention resources.
Education involving the use of peers should be considered
in the development of prevention approaches, because
peer influences are important in adolescent decision making
(Kelly et al., 2005). Horner et al. (2008) described a
culture-centered approach for developing health communication
to promote sexual risk reduction in adolescents.
They found that adolescent narratives that support healthy
behaviors counteract dominant messages that favor risktaking
behaviors in adolescent peer groups. More recently,
Lamerichs, Koelen, and te Molder (2009) found that stimulating
adolescents to become critically aware of how
they talk and act served as a mechanism to develop healthrelated
activities directed at their peers. In both instances,
investigators identified that health communication messages
intended for adolescents were enhanced because of
adolescent input.
Participatory Approaches
Encouraging youth voice, visibility, and active participation
has been strongly promoted in the literature (Greig
& Taylor, 1999). The right to be involved as participants in
matters that affect their health is consistent with a humanrights
approach. Children’s right to participate in decision-making
processes that might be pertinent to them,
and their right to contribute to decisions that are made in
relationtothem,wereclearlyoutlinedinthe1989Convention
on the Rights of the Child (United Nations Children’s
Fund, 2009). Despite recommendations that youth be
involved in the design of health interventions (DiCenso,
Guyatt, Willan, & Griffith, 2002), they have rarely had an
explicit role in the development of sexual health curricula
(Hampton, Fahlman, Goertzen, & Jeffery, 2005).
Increasingly, it is recognized that unless youth are given a
more substantial voice in participating in discussions
about their health, and in generating and distributing relevant
messages, prevention programs developed by
others (i.e., adults, organizations) are destined to failure
(Ford, Odallo, & Chorlton, 2003; Mitchell, ReidWalsh,
& Pithouse, 2004).
Schratz and Walker (1995) described participatory
research as a research approach rather than a specific
method. In taking a participatory approach, researchers
adopt the position that participants are subjective, contextual,
self-determining, and dynamic. Researchers obtain
participant perspectives, describe, and interpret data with a
primary focus on research in the context of social change
(e.g., the enhancement of knowledge to promote action).
For example, Friedman et al. (2004) used participatory
approaches to gain adolescents’ perceptions on sexual
orientation, and used their input to develop new measures
of sexual attraction. Participatory research with youth has
also emerged as a key approach to support and sustain
behavior change in countries affected by the human
immunodeficiency virus/acquired immune deficiency syn-
drome(HIV/AIDS)pandemic(Campbell,Foulis,Maimane,
& Sibiya, 2005; Campbell & MacPhail, 2002).
Participatory research is often informed by visual- and
arts-based methodologies such as photovoice, performance
arts, reflective writing, video documentary, digital
technology, collage, and drawing (Moletsane et al., 2007;
Walsh & Mitchell, 2004). The growing use of arts-based
methodologies in health-related research was highlighted
in Handbook of theArts in Qualitative Research (Knowles
& Cole, 2008). Inviting youth to participate in such
endeavors helps to place them at the heart of cultural creation,
and demonstrates the transformative potential of
arts-based methodologies in health research (Finley, 2008;
McNiff, 2008). Consistent with the participatory nature
of arts-based methodologies, youth become the creators
of messages related to the issues affecting their lives and
circumstances, and produce their own definitions and
responses. For example, Buthelezi et al.’s (2007) use of
visual participatory methodologies led the investigators
to conclude that there were “significant discrepancies
in the ‘ideal adult worldview’ and the ‘practical youth
worldview’on sexual matters” (p. 445). Moletsane et al.’s
use of visual participatory methodologies inspired youth
activism to address stigma in the context of HIV and
AIDS. Woodgate and Leach (2010) explored youths’ perspectives
on the determinants of health using photovoice
techniques. They found that youths’ views regarding
health were not consistent with how academics and public
policy experts have normalized the concept of health to
include the broader determinants of health.
Despite the documented success of participatory
approaches with youth, research regarding adolescent
involvement in the development, implementation, and
evaluation of curricula pertaining to risk-taking behaviors,
including sexual risk taking, smoking, illicit drug use, and
violence, is rare. Furthermore, there is a need to describe
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MacDonald et al.	 1129
the development of curricula from an arts-based approach.
In this article, we address this gap in the literature by presenting
what was learned from our experience using a participatory
approach with youth in a study of sexual health.
First, we provide details pertaining to the larger study.
Study Background
We conducted a school-based study to explore the factors
youth report as being important to facilitate their ability to
acquire skills for the prevention of sexually transmitted
infections (STIs) in Prince Edward Island (PEI), Canada.
An exploratory design is an appropriate choice for investigators
seeking new knowledge, new insights, and new
understanding (Brink, 1998). We encouraged youth participation
through (a) consciousness-raising of the youth
on the topic of sexual health education; (b) enhancing
youth control and shifting the balance of power from the
researcher; and (c) involving youth in a process from
which they have been traditionally excluded (Hart &
Bond, 1996).
The PEI Department of Education had initiated a process
to revise its 10-year-old curriculum, and had not
made provision for student input. We provided a timely
opportunity for incorporating students’ contributions to
curriculum resource development. Ethical approval was
received from participating universities and the Eastern
School District of PEI prior to the start of the study. We
based our research approach on the belief that the preferred
curriculum is one which is negotiated rather than
defined, and that youth can be actively involved and make
important contributions to the curriculum (Craig, 2003;
Pinkney, 2000).
Initially, adolescents met in four focus groups and
shared their views on the appropriate content and form of
educational resources. Trained youth facilitators aged 19
to 25 years conducted the focus groups and used a semistructured
interview guide. Facilitator training included
(a) encouragement of youth control in the research process;
(b) how to focus discussions with the youth and
their sexual health education needs; and (c) how to provide
opportunities for youth to negotiate the issues of sexual
health education from their perspective.
Next, we identified participant-generated ideas from
these focus groups that served as activities we used in
four follow-up focus groups with the same participants.
For example, participants identified that they were comfortable
writing about what they thought young people
should know about STIs. They expressed preferences for
drawing prevention messages that were relevant to their
lives and circumstances. They suggested the use of role
play to discuss sexual health issues. These ideas formed
the basis of our interactions with the adolescents, and we
were able to deepen our exploration of their perceptions
of relevant prevention resources using arts-informed methods
(e.g., reflective writing, dramatization). Content experts
assisted with refining the youth-generated materials so they
might become resources for the prevention of STIs.
The four curriculum resources that were eventually
developed included (a) a process to develop relevant characters
for role play; (b) vignettes for the dramatization
of youths’experiences with STIs; (c) an interactive poster
board to assist with sexual-risk assessment; and (d) an
interactive card game focused on relevant sexual health
questions. The composition of each resource included
youth input that was linked to reflective writing activities,
participation in dramatizations, and discussions held during
focus groups. Each resource was also based on teaching
methodologies (e.g., group discussion, scenario/simulation,
gaming) described by Bastable and Dart (2008). These
resources were subsequently evaluated in an additional
four follow-up focus groups.
All 12 focus groups conducted to develop and evaluate
the curriculum resources were conducted in familiar, yet
private school spaces, and lasted from 50 to 75 minutes.
Krueger (1994) stated that a minimum of three focus groups
was usually necessary to achieve diversity of thought and
theoretical saturation. Study methodology and results from
thelargerstudyhavebeenreportedelsewhere(MacDonald
et al., in press). In this article, we focus on the unique
contributions of adolescent participants to the research
process. Specifically, we set out to answer the following
research question: What can be learned about the participation
of youth in a curriculum-development process?
Methods and Procedures
We conducted a secondary analysis (Polit & Hungler,
1999) to explore relationships in the data gathered previously
from students regarding educational resources to
promote sexual health. Students in the study were (a) registered
in Grade 10 (ages 15 to 16) or Grade 11 (ages 16
to 17) in the Eastern School District of PEI; (b) registered
in their school’s Family Life Education Course (or had
completed it in previous years); and (c) able to provide
written consent. We obtained parental consent for all
participants. Teachers assisted in the identification of
students who worked well in groups; however, this did
not preclude a student’s ability to self-identify for the
study. Participants received a movie pass as a token of
appreciation for their participation.
Study Participants
Fifteen girls and 13 boys (N = 28) participated in eight
initial focus groups that were organized to develop the
content and form of resources for the sexual health curriculum.
Participants ranged in age from 15 to 17 years.
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1130		 Qualitative Health Research 21(8)
The mean ages of the Grade-10 students were 15.5 years
for girls and 15.3 years for boys; the mean age of Grade-11
students was 16 years for both boys and girls. In a second
set of four follow-up focus groups, 22 of the 28 participants
subsequently evaluated the curriculum resources
developed with their input. Of these, 13 were girls; 7 were
Grade-10 students and 6 were in Grade 11. Of the 9 boys,
3 were Grade-10 students and 6 were in Grade 11.
Data Sources
The data sources for the secondary analysis included all
transcripts (25 to 60 pages in length) and field notes from
the 12 youth focus groups (organized by grade and gender),
as well as eight descriptive summaries and a research
log written by the first author (MacDonald). The descriptive
summaries were developed through inductive analyses
(Streubert & Carpenter, 1999) of all materials produced
from the arts-based activities (e.g., reflective writing
excerpts, dramatizations) and focus group transcripts.
They included documentation of how each group of students
(a) identified the factors important to facilitate their
ability to acquire prevention skills for sexual risk taking,
(b) described the form and content of curriculum resources
for the prevention of STIs, and (c) perceived the new curriculum
resources that had been developed with their
input. The research log contained documentation of the
actions and decisions taken in the research process to
enhance the confirmability of the study (Janesick, 2000).
Several strategies were previously applied to establish
trustworthiness of the data. The accuracy of transcriptions
was checked against audio recordings by the first author
and a research assistant. We used member checking with
representatives of the focus groups to ensure we had correctly
interpreted their input (Janesick).
Analysis
In our analysis we focused on the research question,
“What can be learned about the participation of youth in
a curriculum development process?” This led us to
examine both the method we used to engage the adolescents
as well as their input. The first author and a research
assistant were primarily responsible for conducting the
qualitative analyses, using content analytic techniques
(Gillis & Jackson, 2002; Krippendorff, 2004). This consisted
of rereading and reflecting on the focus group
transcriptions (n = 12), the descriptive summaries (n = 8),
the research assistants’ field notes from each focus group
(n = 12), and the contents of the research log. The first
author and a research assistant coded data separately, and
met on a regular basis after reviewing five pages of text
to compare their interpretations (Miles & Huberman,
1984). This promoted interrater reliability and provided an
opportunity to resolve differences in perspectives through
discussion. As a preliminary step, coders met and identified
themes that pertained to the processes and actions
undertaken in the research, and identified passages of text
in transcripts that provided an answer to the research question.
Based on this work, the first author developed a coding
scheme of three overarching categories that related to
the adolescent developmental characteristics relevant
to the research, the affected research process, and the
research enhanced through adolescent input. This scheme
guided the manual categorization of data to one of the
three categories. The second author (Gagnon) reviewed
the coding scheme to validate the categorization of data.
After the preliminary step of data categorization was
completed, coders continued to explore transcripts and
descriptive summaries. They assigned codes to words,
phrases, or sentences that described a particular impression
regarding how adolescent input enhanced the research
process. They discussed similarities and differences in the
types of adolescent input within and across focus groups.
As a result, coders agreed that youth input fit within three
broad theme areas evident in all focus groups.
Results
Findings pertaining to the analysis of our method were
first organized by the three overarching categories of adolescent
developmental characteristics relevant to the
research, the affected research process, and the research
enhanced through adolescent input that was emphasized
in the data sources. We used two key approaches to
optimize adolescents’ developmental characteristics and
promote their engagement in the research process. These
included the use of facilitators similar in age to the participants
and the use of arts-informed methods such as
reflective writing.
Engagement of Youth
in the Research Process
Our use of facilitators similar in age to the participants
increased facilitator credibility (Kelly et al., 2005). We
recruited these youth facilitators because of adolescents’
affinity for peer acceptance and peer support
(Bastable & Dart, 2008). We matched them to the gender
of the participants in the focus group. The facilitators
were required to convey acceptance verbally and nonverbally
when discussing sexual health topics, promote
a sense of control within the participants, and share decision
making. The facilitators established rapport with
the youth participants and discussion of sensitive topics
ensued. Facilitators shared decision making about the
range of sexual health topics to discuss as well as the
types of arts-based activities that were used to gain their
perspectives on the form and content of curriculum
resources.
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MacDonald et al.	 1131
Our use of arts-based methods constituted a means of
(a) eliciting adolescents’ attention; (b) appealing to their
ability to make sense out of new data and discern relationships
among objects and events; and (c) addressing their
capacity for abstract thought (Bastable & Dart, 2008). For
example, the use of reflective writing assisted participants
to clarify values about sexual health issues and complemented
their need to be actively involved (Bastable &
Dart; Kelly et al., 2005). One girl wrote about the uncertainty
of how to understand the risks associated with sexual
activities: “I think it’s important for kids to know,
‘How can I tell if it’s safe to have sex with this person?
They look clean, is there any risk?’” Boys made use of the
opportunity to express that it was unsafe to reveal one’s
true information needs in a public forum:
It wasn’t cool to ask questions in Sex Ed [education]
class. People would hassle you after . . . your popularity
would be gone. I need to know, “What are the
different STIs and how do they affect the body?”
In both instances we were able to use the reflective writing
activity to deepen our understanding of adolescents’
experiences and provide a safe space for expressing their
views.
Thematic Interpretations
Three themes emerged from our further analysis of participant
data from the focus group transcripts and the
descriptive summaries. These data included participants’
views that were articulated in discussions about sexual
health education and their comments during activities
such as role plays about making decisions in sexual relationships.
The collaborative action that occurred within
the focus groups encouraged the youth to (a) initially
express their views regarding how to enhance the existing
sexual health curriculum; (b) describe their successes
and struggles in trying to acquire prevention skills; and
(c) continue to communicate their perspectives regarding
the use of the curriculum resources. A sampling of subtheme
excerpts that support the three themes emphasized
in participant data gathered during the development and
evaluation of the newly developed curriculum resources
are described below.
Enhance the Existing
Sexual Health Curriculum
Participants described a need to revisit earlier sexual health
content because they had forgotten specific details about
STIs, and because the whole concept of sexual health
became more important with age: “When we first had Sex
Ed. in junior high school we were not going out and hooking
up . . . but now it [sexual activity] is more real to us
and we can’t remember what they [teachers] said” (Grade-
11 girl). Youth provided vivid descriptions of reasons
existing educational processes did not work: “You kind
of tune out of a lecture. . . . We need to hear stories. Tell
us stories. Have people closer in age tell us about their
experiences” (Grade-10 girl). They described experiences
with out-of-date resources and with some content
they perceived as offensive. In reference to out-of-date
content, girls made specific reference to one educational
scenario in which they lost interest because it appeared to
be linked to the 1990s, with outdated music and clothing
styles: “It was supposed to be some story about a girl . . .
but the music was so ’90s and she was wearing something
weird. . . . We didn’t pay attention” (Grade-11 girl). In
reference to offensive educational content, boys expressed
how an authoritarian message such as “Don’t have sex!”
induced them to view subsequent content negatively:
“Well, teach them [students] prevention, but don’t like go
overboard and be like, ‘Don’t have sex!’. . . They [teachers]
just encourage abstinence. . . . All they do is show the bad
side” (Grade-11 boy).
Girls used the most emotion when they described the
gender bias they felt existed in both the format and delivery
of curriculum materials. They made specific reference
to scenarios of sexual risk taking and STIs that were presented
to them in sexual education classes. The scenarios
only portrayed girls with multiple partners. One Grade-11
girl summarized the content of the distasteful scenario as,
“[T]here was always one girl and she was on everybody
[had multiple sex partners]. She got the STI.”
Successes and Struggles
to Acquire Prevention Skills
Youth clearly identified a range of positive and negative
factors that affected their learning and influenced the
development of prevention skills. They placed a major
focus on school (educational content and process, teaching
style) and community factors. All participants expressed
that messages from people closer to their own age captured
their attention. They made specific reference to a presentation
by a young man who talked about AIDS: “He came to
our class to talk about AIDS. At the end of his talk he told
us he was HIV positive, and he didn’t even look sick”
(Grade-10 boy). This comment reflected that boys had not
considered that such a healthy-looking young person
could have HIV.
Boys and girls identified that a teacher’s discomfort
with discussing sex conveyed that sex is a topic not to
discuss in an open manner. One Grade-10 girl said, “If
your teacher, who is a grown up, can’t talk about it [sex],
how are you? That gives you the impression that, ‘Oh I’m
not supposed to talk about it.’” They also reported that a
teacher who was open, comfortable, and passionate about
the topic of sexual health provided a positive learning
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1132		 Qualitative Health Research 21(8)
environment. Younger girls commented on the importance
of a nonjudgmental attitude; one said, “Mrs. M., she never
judges you, she tells you how it is.”
Youth reported on negative experiences in the community
with the most intensity. Boys and girls had similar
stories about their perceptions of the community monitoring
their sexual behavior. Boys made specific reference
to situations in which friends of parents reported seeing
a young person purchase condoms at the local pharmacy.
One Grade-11 boy said, “If I walked into a pharmacy and
I’m like, ‘I need a pack.’ I know people that work there
and there’s no place I can get them [condoms]. Your
neighbor is like, ‘Hey Tim.’” Girls described how to handle
seeing someone at the pharmacy who knew the boys.
One Grade-11 girl said, “When you meet somebody you
know, you better be looking at the razor blades and not
the condoms.”
We identified gender-related differences in the ways
youth constructed their repertoires of prevention skills.
Girls’ assessed risk based on their own experiences and
the experiences of individuals known to them. During a
role play, one Grade-11 girl’s comments reflected how
perceptions of risk were influenced by knowledge of
familiar sexual contacts vs. those unknown to them:
It’s more like you’re in [name of hometown].
Everyone knows everyone, and everybody knows
everything about everyone. If your boyfriend did
stuff with this person, you would know if that was
okay or not. But, if you were in some random city
or something, you would never know.
In contrast to girls, boys were very matter of fact in
describing their process of decision making. Boys in both
grade levels expressed comments such as this one from a
Grade-10 boy: “Just make a decision, don’t really think
about it.”
Perspectives Regarding
the Use of the Curriculum Resources
Youth remained committed to providing their perspectives
on the use of the curriculum resources. Separation
of the focus groups by gender revealed differences in how
each group viewed the use of the curriculum resources.
For example, in reference to a performance-based vignette
about a young man with chlamydia, boys focused on
technical aspects of improving the resource. They openly
described how viewing the dramatization assisted them
in thinking more critically about sexual risk taking. They
had not realized that women might develop pelvic inflammatory
disease and possible infertility because of chlamydia.
They also endorsed the need to inform their sexual
partners if infected. One Grade-10 boy’s comments
indicated that he discovered new information; he said,
“A girl could find out when she chooses to have children?
She could find out she can’t [have children] because years
ago she developed this [chlamydia] without even knowing
it?” In reference to the same vignette and the need to
inform sexual partners, another Grade-11 boy offered,
“Get more emphasis on what you’re supposed to do when
you find out you got something [STI] and you’ve already
had sex with another person.” In contrast, girls focused on
the use of the vignette to dispel boys’ lack of attention to
sexual risk taking. One Grade-10 girl said, “Boys only
want to know if you are on the pill; they’re not thinking
about infections.”
Girls described how the content in several of the curriculum
resources avoided gender bias and were particularly
relevant to their experiences. They compared their
experiences with prior curriculum resources (previously
developed characters and scenarios not relevant to their
circumstances) that made use of role play with the new
character development process for role play we developed
as part of this study. One Grade-10 girl said, “You’re more
connected when it’s [character development] from the
ground-up.” The latter comment was in reference to the
approach we used in our curriculum development process
as opposed to using a character that had been developed
by an adult or teacher.
All participants provided formative feedback on how
to best use the curriculum resources in classrooms with
other groups of students. Their comments included the
suggestion to revise troublesome language, such as eliminating
the use of “yikes” in the performance of the vignette
about a young man with chlamydia because it was associated
with the era of the 1990s. One Grade-11 boy said,
“It [use of yikes] didn’t really make the story any worse,
it just made it really funny, which made me not take it
seriously.” Both boys and girls contributed to the development
of teaching guidelines for the use of the resources.
For example, in reference to the use of the interactive card
game, one Grade-10 boy said, “You don’t always have to
use this [card game] in a group. It’s a good way to test
yourself [about STI information] if you’re not sure and
you really don’t want anyone to hear the question.” One
Grade-10 girl expressed a similar view: “You could do
this yourself. You don’t always have to do this in a group.
There are questions on it that some people might feel
embarrassed to answer in a group.” Overall, both boys’and
girls’comments represented a critical reflection and attentiveness
to details for developing teaching guidelines.
Discussion
The aim of this article was to describe what can be learned
about the participation of youth in a curriculum development
process. An examination of our method and youth
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MacDonald et al.	 1133
input demonstrated that the research process was enhanced
withyouthparticipation.Participatoryapproachesinformed
by the arts-based methods of reflective writing, role play,
and dramatization (Finley, 2008) were an essential part of
our process. We were able to elicit participants’ attention,
and maintain their interest and responsiveness throughout
iterative focus groups. The use of these methods worked
well and positioned youth as active agents in creating prevention
messages and contributing to the discussion around
STI-prevention resources. Results indicate that our use of
these methods facilitated an understanding of adolescents’
perspectives.
We were also able to gain insight into specific sensitivities
in youth culture. For example, engaging youth in
dramatization plots sensitized us to how language associated
with a former decade (i.e., the 1990s) could be offputting
and result in youth dismissing the content of a
curriculum resource. Cole and Knowles (2008) stated that
communicability is an important consideration, and the
potential for audience engagement is related to the form
and language in which arts-informed tools are written or
performed. Additionally, participant discussions of peerrelevant
scenarios used during role play highlighted key
gender differences in decision making and risk assessment—
both of which can affect the development of prevention
skills.
Results from other studies also demonstrate how the
use of arts-based methods can engage youth participants.
Moletsane et al. (2007) used photovoice to involve youth
in knowledge production in response to HIV and AIDS
stigmatization, and to accept a personal sense of agency
for taking action to reduce stigma. Buthelezi et al. (2007)
used student responses to a video documentary about HIV
and AIDS to discover the youths’ perceptions about sex,
sexuality, and AIDS. In both studies, investigators used
arts-based tools to create safe spaces for dialogue and promote
optimal youth engagement. Cole and Knowles (2008)
referred to this type of engagement with the participants as
the “transformative potential” of the work.
We conducted a secondary analysis of data from a
qualitative exploratory study. Although we had included
strategies to enhance the credibility and confirmability of
the original study (e.g., member checks with participants,
documentation of decisions and actions), there are limitations
in this project. Even though we invited all students
who met inclusion criteria to participate, teachers assisted
in the nomination of students who worked well in groups
because no screening tool was available to assess this in
advance. The study groups might represent a more motivated
sample than the population from which they were
selected. In addition, there is no certainty that these results
have meaning and relevance to those who might be marginalized
because of sexual orientation, race, and culture;
those who chose to self-exclude; or those who were not
chosen by their teachers. We can only report on the perspectives
of the participants in our study from two grade
levels (10 and 11). There is no assurance that our findings
have meaning and relevance to high school students in
lower grades (7 to 9), where prevention curricula are often
initiated.
Despite these limitations, our analysis provides evidence
to guide practice and research on the use of participatory
approaches informed by arts-based methods with
youth to develop education resources for other risk-taking
behaviors. Our recommendations are applicable to the
education and health sectors. It appeared that our use of
participatory approaches with youth in this study provided
a view to understanding the sexual scripts that influence
their acquisition of prevention skills. We used that
knowledge to enhance the communicative potential of
the resources, and ensured that the resources were written
in the form, language, and method of performance
preferred by adolescents. We believe similar gains might
be found in using participatory approaches with adolescents
to understand how they acquire prevention skills for
other risk behaviors (e.g., tobacco use, inactivity, unhealthy
eating). Such insights are applicable to the development
of new interactive (multimedia or Web-based) curricular
resources. Our experience adds strength to the need for an
adolescent-centered approach to curriculum development.
The use of similar-age facilitators to engage youth in
discussions around sensitive topics worked well to enhance
the research process with adolescents. We believe that
practitioners responsible for the delivery of interventions
to modify risk behaviors need to consider flexible delivery
models that promote youth engagement. In this way,
youth in the presence of peers and adults (teachers,
nurses, and other professionals) can begin to engage in
meaningful discussions about risk-taking behaviors that
affect their lives. Although we found that our participatory
approach engaged youth and made them more selfaware,
we cannot ensure sustained social action and
capability; additional research using longitudinal designs
is required.
Conclusion
Our findings in this study highlight the importance of
participatory approaches combined with the transformative
potential of arts-based methods in developing prevention
resources that are in harmony with the experiences
and meaning that adolescents ascribe to the development
of prevention skills for sexual risk-taking behaviors.
Although our study focused on the development of STIprevention
skills, our results are relevant to those developing
prevention resources in other areas of risk behavior.
Our approach to curriculum development worked well to
promote the maximum participation of youth, and enabled
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1134		 Qualitative Health Research 21(8)
them to identify the issues that negatively affect their
lives and circumstances, as well as ways of addressing
them. Such an approach might be the best way to address
the serious health challenges that continue to affect the health
and well-being of adolescents.
Declaration of Conflicting Interests
The authors declared no conflicts of interest with respect to the
authorship and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support
for the research and/or authorship of this article: Support was
received from the Canadian Nurses Foundation; Canadian
Foundation for AIDS Research.
References
AmericanAcademy of Pediatrics. (2002). Bright futures. Chicago:
Author.
Bastable, S., & Dart, M. (2008). Developmental stages of the
learner. In S. Bastable (Ed.), Nurse as educator (pp. 147-198).
Boston: Jones & Bartlett.
Brink, P. (1998). Exploratory designs. In P. Brink & M. Woods
(Eds.), Advanced design in nursing research (pp. 308-335).
Thousand Oaks, CA: Sage.
Buthelezi, T., Mitchell, C., Moletsane, R., De Lange, N.,
Taylor, M., & Stuart, J. (2007). Youth voices about sex
and AIDS: Implications for life skills education through the
“Learning Together” project in Kwazulu-Natal, SouthAfrica.
International Journal of Inclusive Education, 11, 445-459.
doi:10.1080/13603110701391410
Campbell, C., Foulis, C. A., Maimane, S., & Sibiya, Z. (2005).
The impact of social environments on the effectiveness of
youth HIV prevention: A South African case study. AIDS
Care, 17, 471-478.
Campbell, C., & MacPhail, C. (2002). Peer education, gender
and the development of critical consciousness: Participatory
HIV prevention by South African youth. Social Science &
Medicine, 55, 331-345. doi:10.1016/S0277-9536(01)00289-1
Centers for Disease Control and Prevention. (2008). Healthy
youth! Health topics. Bethesda, MD: Author. Retrieved from
http://www.cdc.gov/healthyyouth/healthtopics/
Centers for Disease Control and Prevention. (2010). Youth risk
behavior surveillance—United States, 2009. Morbidity and
Mortality Weekly Report, 59(Suppl. 5), 1-142. Retrieved
from http://www.cdc.gov/MMWR/pdf/ss/ss5905.pdf
Cole, A. L., & Knowles, J. G. (2008). Arts-informed research.
In J. G. Knowles & A. L. Cole (Eds.), Handbook of the arts
in qualitative research (pp. 55-70). Los Angeles: Sage.
Craig, G. (2003). Children’s participation through community
development. In C. Hallet & A. Prout (Eds.), Hearing the
voices of children (pp. 57-70). London: RoutledgeFalmer.
DiCenso, A., Guyatt, G., Willan, A., & Griffith, L. (2002). Interventions
to reduce unintended pregnancies among adolescents:
Systematic review of randomised controlled trials. BMJ,
324, 1426. doi:10.1136/bmj.324.7351.1426
Finley, S. (2008). Arts-based research. In J. G. Knowles &
A. L. Cole (Eds.), Handbook of the arts in qualitative research
(pp. 71-82). Los Angeles: Sage.
Ford, N., Odallo, D., & Chorlton, R. (2003). Communication
from a human rights perspective: Responding to the HIV/
AIDS pandemic in Eastern and Southern Africa. Journal of
Health Communication, 8, 599-612.
Friedman, M. S., Silvestre, A. J., Gold, M. A., Markovic, N.,
Savin-Williams, R. C., Huggins, J., & Sell, R. L. (2004).
Adolescents define sexual orientation and suggest ways to
measure it. Journal of Adolescence, 27, 303-317.
Gillis, A., & Jackson, W. (2002). Research for nurses: Methods
and interpretation. Philadelphia: F.A. Davis.
Greig, A., & Taylor, J. (1999). Doing research with children.
London: Sage.
Hampton, M., Fahlman, S., Goertzen, J., & Jeffery, B. (2005). A
process evaluation of the youth educating about health
(YEAH) program: A peer-designed and peer-led sexual health
education program. Canadian Journal of Human Sexuality, 14,
129-140. Retrieved from http://www.sieccan.org/cjhs.html
Hart, E., & Bond, M. (1996). Making sense of action research
through the use of a typology. Journal of Advanced Nursing,
23, 152-159. doi:10.1111/1365-2648.ep8550773
Horner,J.,Romer,D.,Vanable,P.,Salazar,L.,Carey,M.,Juzang,I,
. . . Valois, R. (2008). Using culture-centered qualitative formative
research to design broadcast messages for HIV prevention
for African American adolescents. Journal of Health Communication,
13, 309-325. doi:10.1080/10810730802063215
Janesick, V. J. (2000). The choreography of qualitative research
design. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook
of qualitative research (pp. 379-399). Thousand Oaks, CA:
Sage.
Kelly, P. J., Lesser, J., & Smoots, A. (2005). Tailoring STI &
HIV prevention programs for teens. American Journal of
Maternal Child Nursing, 30, 237-242.
Knowles, J. G., & Cole, A. L. (2008). Handbook of the arts in
qualitative research. Los Angeles: Sage.
Krippendorff, K. (2004). Content analysis: An introduction to
its methodology (2nd ed.). Thousand Oaks, CA: Sage.
Krueger, R. (1994). Focus groups. Thousand Oaks, CA: Sage.
Lamerichs, J., Koelen, M., & te Molder, H. (2009). Turning adolescents
into analysts of their own discourse: Raising reflexive
awareness of everyday talk to develop peer-based health
activities. Qualitative Health Research, 19, 1162-1175.
doi:10.1177/1049732309341655
MacDonald, J., Gagnon, A. J., Mitchell, C., Di Meglio, G.,
Rennick, J. E., & Cox, J. (in press).Asking to listen: Towards
a youth perspective on sexual health education and needs.
Sex Education.
McNiff, S. (2008). Arts-based research. In J. G. Knowles &
A. L. Cole (Eds.), Handbook of the arts in qualitative
research (pp. 29-40). Los Angeles: Sage.
at Masarykova Univerzita on January 13, 2014qhr.sagepub.comDownloaded from
MacDonald et al.	 1135
Miles, B., & Huberman,A. M. (1984). Qualitative data analysis.
Beverley Hills, CA: Sage.
Mitchell, C., Reid-Walsh, J., & Pithouse, K. (2004). And what
are you reading Miss? Oh, it is only a website: The new
media and the pedagogical possibilities of digital culture as
a South African teen guide to HIV/AIDS and STDs. Convergence,
10, 191-202.
Moletsane, R., Lange, N. D., Mitchell, C., Stuart, J., Buthelezi, T.,
& Taylor, M. (2007). Photo-voice as a tool for analysis and
activism in response to HIV and AIDS stigmatisation in a
rural KwaZulu-Natal school. Journal of Child and Adolescent
Mental Health 19(1), 19-28.
Piaget, J. (1976). The grasp of consciousness: Action and concept
in the young child. Cambridge, MA: Harvard University
Press.
Pinkney, S. (2000). Children as welfare subjects in restructured
social policy. In G. Lewis (Ed.), Rethinking social policy
(pp. 111-125). London: Sage.
Polit, D. F., & Hungler, B. P. (1999). Nursing research: Principles
and methods (6th ed.) Philadelphia: Lippincott.
Santelli, J. S., Smith Rogers,A., Rosenfeld, W. D., DuRant, R. H.,
Dubler, N., Morreale, M., . . . Schissel, A (2003). Guidelines
for adolescent health research: A position paper of the Society
for Adolescent Medicine. Journal of Adolescent Health,
33, 396-409. doi:10.1016/j.jadohealth.2003.06.009
Schratz, M., & Walker, R. (1995). Research as social change: New
opportunities for qualitative research. London: Routledge.
Streubert, H., & Carpenter, D. (1999). Qualitative research in
nursing. Philadelphia: Lippincott.
United Nations Children’s Fund. (2009). The convention on the
rights of the child. Retrieved from http://www.unicef.org/
Walsh, S., & Mitchell, C. (2004). Artfully engaged: Arts activism
and HIV/AIDS work in South Africa. In A. L. Cole,
L. Neilsen, J. G. Knowles, & T. C. Luciani (Eds.), Provoked by
art:Theorizingartsinformedresearch (pp. 191-202). Halifax, NS,
Canada: Backalong Books.
Woodgate, R. L., & Leach, J. (2010). Youth’s perspectives on
the determinants of health. Qualitative Health Research, 20,
1173-1182. doi:10.1177/1049732310370213
Bios
Jo-Ann M. MacDonald, MN, is a doctoral candidate at McGill
University and an assistant professor at the University of Prince
Edward Island School of Nursing in Charlottetown, Prince
Edward Island, Canada.
Anita J. Gagnon, PhD, is an associate professor and William
Dawson scholar at McGill University School of Nursing,
Department of Obstetrics and Gynecology, and a nurse scientist
in women’s health, McGill University Health Centre, in Montreal,
Quebec, Canada.
Claudia Mitchell, PhD, is a James McGill professor of visual artsbased
methodologies, HIV & AIDS, and social change at McGill
University Faculty of Education in Montreal, Quebec, Canada.
Giuseppina Di Meglio, MD, is a specialist in the Division of
Adolescent Medicine and Pediatric Gynecology, Montreal
Children’s Hospital, McGill University Health Centre, in
Montreal, Quebec, Canada.
Janet E. Rennick, PhD, is a nurse scientist at the Montreal
Children’s Hospital, McGill University Health Centre, and an
assistant professor at McGill University School of Nursing in
Montreal, Quebec, Canada.
Joseph Cox, MD, FRCP(C), is a specialist in the Public Health
Department, Montreal Health and Social Services Agency, an
assistant professor at McGill University Departments of
Medicine and Family Medicine, and an associate member in
theDepartmentofEpidemiology,BiostatisticsandOccupational
Health, in Montreal, Quebec, Canada.
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