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INTRODUCTION
In the late 1990s, the National Institutes of Health and the Department of
Health and Human Services developed
new guidelines and regulations to
increase the participation of children
in research. This step was taken to
help ensure that treatments for disorders and conditions that affect children
would be developed and substantiated
with data.1,2 To promote enrollment
in trials, it is therefore critical for
researchers to understand perceived
barriers and motivators for children
and to improve communication.
Additionally, investigators should
understand childrens perceptions of
The Gerald J. and Dorothy R. Friedman School of Nutrition Science and Policy, The John
Hancock Center for Physical Activity and Nutrition, Tufts University, Boston, MA
Address for correspondence: Tamar Kafka, MS, RD, The John Hancock Center for Physical
Activity and Nutrition, Tufts University, Jaharis Building, 150 Harrison Ave, Boston, MA
02111; Phone: (778) 322-0602; Fax: (617) 636-3781; E-mail: tkafka@gmail.com
2011 SOCIETY FOR NUTRITION EDUCATION
doi:10.1016/j.jneb.2010.03.002
103
104 Kafka et al
participation. To the authors knowledge, no studies have explored the motivations of children to participate in
research in the absence of a disease or
condition.
Research looking retrospectively at
childrens perceptions of participating
in research is also limited. The same
studies by Fogas et al11 and McGuinness et al12 were again the only trials
identied that asked children about
their perceptions of participating in
a trial. Fogas et al11 asked the children
how they viewed their involvement
in research, including perceived distress to having blood drawn (33%
reported it did not hurt, and almost
50% responded that it hurt a little),
voluntariness (about 90% of subjects
believed they could have refused trial
participation), and satisfaction with
being involved in the study (over
97% of the children reported being
happy about being involved).
McGuinness et al12 explored childrens impressions of an intervention
modality. They asked participants
about having increased clinic visits
(86% indicated a positive response)
and whether they planned to remain
on the more intensive insulin regimen
established during the trial (97% indicated they intended to maintain the
regimen). No studies could be found
that explored childrens perceptions
of how nutrition research could be improved for other children in the future.
Recent national data show that 32%
of children in the United States are
overweight or obese,13 with prevalence
increasing with age from 2 to 19
years.14,15 Overweight and obesity
increase the risk of many diseases and
health conditions, including type 2
diabetes, coronary heart disease, and
some cancers.16 Balanced nutrition is
one important component of maintaining a healthful body weight, therefore it is important to understand the
factors that motivate childrens participation in nutrition research as well as
their experiences in this research. This
knowledge will help promote enrollment and improve experiences in
nutrition and physical activity-related
trials, as more are being called for in
this population.
In the Health Belief Model for
Behavior Change, 4 constructs
(perceived barriers, perceived beliefs,
perceived susceptibility, perceived
severity) and mediating factors are
METHODS
Study Design and Population
Focus groups were conducted over 1
weekend in March 2008 with children
who had participated in the Healthy
Snacking for Soccer Playing Kids study
(HSSP) during the previous 6 weeks.
The objectives of the HSSP study were
to examine how the nutrient density
and antioxidant content of 3 snacks
affected exercise intensity, post-game
fatigue, blood glucose, and biochemical
markers of stress and immune status in
7- to 10-year-old recreational and competitive soccer players.18 One hundred
fteen male and female indoor soccer
players were randomized to 1 of the
3 snacks (a nutrient-dense/highantioxidant raisin oatmeal bar, a highsugar/starch graham peanut butter bar,
and a low-antioxidant, higher-sugar/
starch crispy rice marshmallow treat),
which they consumed 1 hour before 1
soccer game. Children were then monitored during the soccer match to examine the effect of each snack on exercise
intensity using accelerometry, on
subjective assessments of physical
and mental fatigue using a selfadministered questionnaire, and on
pre- to post-match changes in blood
sugar with a nger prick and biochemical markers of stress measured by salivary cortisol and immunoglobulin A
collected with a swab. All participants
played in indoor soccer leagues at
a sporting complex in Acton,
Massachusetts (MA). Acton is located
in Middlesex County, MA, where the
population is primarily (87.2%) white
non-Hispanic and the median household income is $91,624 (United States
median is $41,994).19
Focus group participants were
recruited by sending an e-mail to
team coaches whose teams had completed the HSSP study. Coaches then
requested participation from individual participants, also through e-mail.
All of the 14 teams (a total of 101 children) who had completed the HSSP
study at the time the focus groups
were conducted were invited to participate in the focus groups. Focus group
times were then arranged with all
coaches who responded to the e-mail
indicating individual participants
were interested in participating. All
individuals who showed up to participate in the focus groups were included
irrespective of age, sex, or the number
of participants per focus group, in order
to be able to generate responses from as
great a range of participants as possible
including team, age, and sex. Participants received a $10 gift card to a sporting goods store and either a water
bottle or a soccer ball as incentives to
participate in the focus groups.
Participants
provided
written
assent and parents signed informed
consent
forms
before
their
participation in the focus groups.
The Institutional Review Board at
Tufts University gave human subjects
research approval for this project.
Data Analysis
RESULTS
Demographics
In total, 35 individuals (average age
9.1 0.8 standard deviation) partici-
Kafka et al 105
[I was nervous about] getting my nger pricked. I didnt know what it
would feel like. Some were nervous
about the snack they would have to
eat as a participant in the study: [I
was nervous] that I wouldnt like the
snack.
15 (43)
20 (57)
1 (3)
7 (20)
14 (40)
13 (37)
0 (0)
35 (100)
Focus group, n (%) (n 7)
1 (14)
2 (29)
1 (14)
2 (29)
1 (14)
106 Kafka et al
Table 2. Summary of Focus Group Findings: Motivations for Taking Part in Nutrition
Research Within Context of the Health Belief Model for Behavior Change
Health Belief Model Constructs
Perceived benefits before participating in research
Receiving a gift card
Being tested (eg, accelerometer, saliva analysis)
Eating the study snack
Perceived barriers before participating in research
Being tested (eg, finger prick)
Perceived benefits after participating in research
Receiving a gift card
Being tested (eg, accelerometer)
Perceived barriers after participating in research
Being tested (eg, finger prick, salivary collection)
Eating the study snack
Health Belief Model Mediating Factors
Cues to action to create readiness for participating in research: Improving the
research experience
Improving study snack
Eliminating finger prick
Increasing value of gift card
Cues to action to create readiness for participating in research: Reducing barriers to
participation
Demonstrating data collection methods before data collection day
Using distraction techniques during data collection (for finger prick and salivary
collection)
Providing verbal reassurance during recruitment
Cues to action to create readiness for participating in research: Willingness to
participate in future research
All children reported willingness to be in a research study again in future
Some children would participate only if received financial compensation
DISCUSSION
Because children are considered vulnerable subjects, healthy children
may be more likely to be excluded
from research that is nontherapeutic.21 This study explored the perceptions of healthy children and their
involvement in research. A key nding was that healthy children appear
to perceive the same primary benets
of participating in research as children
with a disease or condition who are
involved in drug or treatment trials.
Both this study and the studies by
Fogas et al11 and McGuinness et al12
found that children are motivated to
participate in research primarily for
self-interest, such as for the money,
because they were interested in various tests being done in the study, or
to get different medical treatment.
Mower22 discusses the idea that, in
evolutionary psychology, there are
sex differences in moral interests or
values; justice is a primary value and
dominance a primary interest in
males, whereas care is a primary value
and empathy, fairness, and equality
are primary interests in females,
which suggests that females would
be more motivated by altruism to participate in research. However, in this
study, there was no observed sex difference, as both males and females
were primarily motivated to participate in research for self-interest, in
this case, the nancial incentive.
The use of nancial incentives in
both pediatric and adult research
arouses ethical concerns, especially regarding the potential for money to
inuence subjects to give informed
consent or assent with less regard for
potential risk involved in study participation.23,24 The focus group results
showed that the nancial incentive
to participate in the HSSP study was
the most common motivation for
children of all ages; however, it has
been found that children under 9
years of age do not have an
appreciation for the role of money in
society or as a reward for research
participation.25 This nding suggests
that, since nancial incentives were
found to be the most common motivation for study participation, the
use of this incentive should be carefully considered with all research
involving children as participants. A
2004 report from the Institute of Medicine by a panel responsible for
a review of the system of overseeing
pediatric research stated that research
institutions should adopt explicit
written policies on acceptable and
Kafka et al 107
a childs diet if the nutrition intervention is intended to be adopted outside
of a study setting.
The current study uses questions
similar to those used in a previously
administered study to elicit responses
regarding participation in research.11
Although this method has advantages, such as that ndings are salient
to experienced events versus a hypothetical study, it also has disadvantages, such that generalizability may
be reduced to other studies with different nutrition task demands, benets, and barriers. Using the questions
from this study to conduct focus
groups following other nutrition trials
involving children may help improve
the generalizability of the results.
Focus groups, rather than individual interviews, were the chosen
method for identifying patterns of attitudes, beliefs, and barriers toward
health behaviors among the population polled, as children had a shared
experience participating in the HSSP
study and because they were not discussing an especially sensitive topic,
so there was little reason to believe
they would be inhibited from answering questions honestly in a group setting. Further, it was cost effective
because the children were easily gathered in teams before a scheduled soccer
match. However, the focus groups
provide data from a limited sample
population, therefore they are not generalizable to a broader group of children. The focus group sizes in this
study were variable, with 3 of the
groups being small (2 or 3 participants
per group), and the age representative
of primarily 8- to 10-year-olds despite
the HSSP study including 7- to
10-year-olds, as only one 7-year-old
participated in the focus groups. The
sample used in this study was not representative of a more general population based on age, racial background,
and socioeconomic status, which further limits the ability to apply the ndings on a broader level. Additional
studies will be needed to conrm the
results of these focus groups.
IMPLICATIONS FOR
RESEARCH AND
PRACTICE
This research is benecial to a larger
population, as it is the rst to examine
108 Kafka et al
ACKNOWLEDGMENTS
This research was funded by the
California Raisin Marketing Board.
The authors thank Valerie Clark, MS,
RD (Tufts University), Laura Ficker
(graduate student), and Naomi Reyes,
MS (Tufts University) for their help
with the focus groups, audiotape transcription, and data coding.
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