Enhancing Children's Understanding of Research: An Exploratory Study

Mary Kay Hel l ing South Dakota State University

Teresa Buchanan University of Central Arkansas

A B S T R A C T : The purpose of this study was to investigate the utili ty of a develop- mentally appropriate curriculum plan for increasing children's knowledge base about research, focusing on selected components of informed consent. Thirty-six children par- ticipated in this exploratory study which consisted of a t reatment (i.e., participation in the curriculum plan activities) and a control group. Results suggested that participa- tion in the t reatment group increased children's level of enjoyment and their aware- ness of where they went for the research task. Temperament appeared to emerge as a mediating variable. Correlational analyses indicated that children who enjoyed the research task also seemed more cooperative, asked more questions and had a more accurate idea of what they did and why they did the research tasks. No differences were found between the t reatment and control groups for level of understanding of the vol- untary nature of participation in research and the right to withdraw from a research project.

Children in residential and day care service settings are often iden- tified as subjects for research studies. In addition, professionals in child care service settings may be asked to be collaborators or infor- mants for research studies which involve children in their care (Allen & Catron, 1990; Chattin-McNichols & Loeffier, 1989). While it is im- portant that participating/collaborating adults be aware of the rights and responsibilities related to the research process, informing chil- dren of the elements and processes involved is particularly challeng- ing (Hughes & Helling, 1990).

Requests for reprints should be addressed to Mary Kay Helling, c/o Human Develop- meat, Consumer and Family Sciences, Box 2218, South Dakota State University, Brookings, SD 57007-0195. Portions of this paper were presented during the 1992 meeting of the National Association for the Education of Young Children, New Or- leans, LA. The authors would like to express appreciation to Lynn Musser for her encouragement and helpful review of measures and earlier drafts of this paper and to the anonymous reviewers for their suggestions.

Child & Youth Care Forum, 23(4), August 1994 �9 1994 Human Sciences Press, Inc. 231

232 C h i l d & Y o u t h Care F o r u m

In the process of obtaining informed consent, it is often assumed that children under the age of 12 are not capable of making truly informed decisions about whether or not to participate in a study (Keith-Spiegel, 1983). Moreover, consent implies understanding, thus children's agreement to participate is at times referred to as assent or dissent, if children refuse (Abramovitch, Freedman, Thoden, & Ni- kolich, 1991). Therefore, proxy consent (i.e., permission granted by the parent or guardian) may be the sole form of informed consent to be utilized.

Federal regulations, as delineated in the National Research Act of 1974 (P.L. 93-348) provide very general guidelines which are in turn interpreted by local institutional review boards. Federal mandates apply only to projects affiliated with the Department of Health and Human Services. (Koocher & Keith-Spiegel, 1990) In general, the guidelines set forth the need to assess the degree of risk involved; the need for parental/guardian consent and assent by children.

Institutional review boards require researchers to specify how in- formed consent will be secured with children in the study (Borg & Gall, 1989). At times, researchers who are concerned with the welfare and experience of children in research studies may attempt to involve children in the decision making process to a greater degree than re- quired (Allen & Catron, 1990). Appropriate strategies to use to in- form children about a particular research study or the research pro- cess in general is a challenge to parents, caregivers and researchers alike.

One of the first steps in planning strategies for increasing chil- dren's ability to make a more autonomous informed consent decision is an awareness of what children are capable of in terms of decision making and understanding the purpose, procedures and implications of research. The limited research that has addressed children's ability to consent or assent to research indicates that children are capable of expressing preferences and making decisions related to medical treat- ment (i.e., Melton, 1984; Weithorn & Campbell, 1982). In a more re- cent series of studies, researchers investigated the ability of 5- to 12- year-old children to consent to psychological research (Abramovitch et al., 1991). Results indicated that most of the children understood the procedures and purposes of the studies. However, children were not convinced that their participation in the study would be confiden- tial. Moreover, children appeared to feel like they had to participate in a study if their parent(s) had agreed to the children's participation.

Similar to that reported by Abramovitch and colleagues (1991), our experience as practitioners and researchers in early childhood set- tings has been that most children agree to participate, yet may not understand the key elements of informed consent (i.e., right to with-

Mary Kay Helling and Teresa Buchanan 233

draw at any time during the research study, knowledge of the pro- cedures and processes, etc.) If young children fail to understand the components of a research study, perhaps it is in part due to the lack of exposure to the experiences which facilitate learning about the re- search process.

The purpose of this exploratory study was to investigate the utility of a one-week curriculum designed to increase young children's (ages 3-5) understanding of the research process, with particular emphasis on the elements of informed consent. Moreover, a focus of the study was to determine if young children can gain sufficient understanding of the research process through classroom experiences that would en- able them to make informed decisions about participation. An under- lying assumption was that in order to make an informed decision about participation, a child must understand the place of consent within the context of the entire research process. For example, simply being told of their right to refuse or withdraw from a study would not ensure sufficient understanding for truly informed consent by children.

Planned classroom curriculum experiences were grounded in devel- opmentally appropriate practices, which are based in part on develop- mental and constructivist principles of theorists such as Erickson, Piaget and Vygotsky (Bredekamp, 1987). One underlying assumption of the curriculum plan was that if children were exposed to informa- tion and experiences related to the research process they in turn would be more willing to participate and be more prepared to make an informed decision about their own participation.

M e t h o d

Subjects

This quasi-experimental study was conducted with children en- rolled in a University laboratory preschool program and University- affiliated child care center. Children in four classrooms whose parents granted proxy consent participated in the study. The control group consisted of 17 children (8 girls and 9 boys), ranging in age from 36 to 76 months. The treatment group consisted of 19 children (8 girls and 11 boys), ranging in age from 38 to 64 months. Children were from well-educated, middle class families.

Procedure

Two of the four classrooms were assigned treatment group status and two were assigned control group status. The assignments were

234 Chi ld & Youth Care F o r u m

made on the basis of children's age and class size to ensure tha t the two experimental groups were matched as closely as possible on chil- dren's age and number of children in the classroom.

Due to the possibility of children's responses to the research experi- ence varying because of individual differences in temperament , teachers were requested to completed a measure of children's temper- ament. Some children may be more inclined to part icipate in new activities (i.e., part icipation in a research study) than others. The emotionali ty, activity and sociability (EAS) scale (Buss & Plomin, 1984) was completed by the teachers. Emotional i ty focuses pr imari ly on degree of arousal to stimuli, in which some emotions indicate char- acterist ically high arousal (e.g., fear, anger) whereas others indicate low arousal (e.g., depression). Quest ions on the scale included state- ments such as "child tends to be somewhat emotional" and "child cries easily". Sociability is the preference of being with others as op- posed to being alone, measured with s ta tements such as "child makes friends easily" and "child likes to be with people". Activity refers to vigor and tempo of movements and actions of an individual. On the EAS scale this factor is measured with teacher rat ings of individual children such as "when child moves, he/she usual ly moves slowly" and "child is energetic". Scores from this measure were used as con- trol variables because the pr imary focus of the present s tudy was on the uti l i ty of a specifically designed curr iculum on increasing chil- dren's unders tanding of research ra ther than differences based on in- dividual temperament .

Teachers in the t rea tment classrooms were provided with a one- week lesson plan which focused on increasing children's understand- ing of the research process in a developmental ly appropriate manner. The plan included the objectives for each day of the week and a br ief overview of the focus of discussion and activities with the children. Activities included flannel board stories, hands-on experiences with research-like mater ia ls (i.e., paper, pencils, blocks, etc.) and imple- menta t ion of a classroom-designed research project (i.e., survey of fa- vorite type of snack and/or animal).

On Day 1 the focus of the group activity was to introduce the con- cept of research. S ta tements and questions such as "research is when people ask questions and then t ry to find the answer" and "what kind of questions do you have?", and "what kinds of things do you wonder about?" were posed for the children. Examples were provided for the children such as "do you ever wonder about how plants grow or how birds fly, what the favorite snack or pet is in our class?" Flannel board figures of preschool aged children, adults, and common i tems were used to i l lustrate examples. During group t ime on Day 1, the activity of conducting a research project was also introduced. Teach-

Mary Kay Helling a n d T e r e s a B u c h a n a n 235

ers wrote down children's questions on a large piece of paper to refer to the next day.

On Day 2, the focus was on identifying ways to answer questions. Ideas included asking other people questions, watching people, ani- mals and plants, and looking in a book. Again, flannel board figures were used to illustrate ideas. For the hands-on research project, groups decided which question to focus on in the classroom. For example, one group decided to at tempt to answer the question, '~What is our favorite pet?" Small groups decided on ways to answer the question.

Day 3 focused again on al ternat ive ways to collect information as well as techniques for keeping t rack of information. The concepts of voluntary participation and the right to wi thdraw were also intro- duced. During group time, flannel board figures were used to illus- t rate the idea tha t people can choose whether or not to answer ques- tions and tha t people can change their minds and decide to not participate even after they had begun the research process. For the research project, children worked in small groups and designed a way of keeping track of information and gathered data (i.e., using a chart with pictures of different pets). Groups chose to investigate favorite pet or favorite snack. Some adults were prompted to refuse to participate and to decide after initially saying "yes" to not want to continue for the purpose of demonstrating the selected principles of informed consent.

Ways in which one can use research information was the focus on Day 4. With the help of the teachers, children tabula ted their results and acted on the information. For example, the favorite snack was included in the snack menu for the next week. Or, pictures of favorite animals were displayed. On Day 5, the research process and the past week's events were reviewed. For example, discussion and activities focused on the overall research process. Flannel board figures were again utilized to target key elements of the research process. Chil- dren and teachers shared their experiences through group discussion.

In addition to group activities, a discovery/research dramatic play area was available for the children. New props were added through- out the week to keep the area familiar yet inviting. Props included paper, pencils, computers, computer paper, books, calculator, flannel board figures from group time, magnifying glasses with items to ex- amine, s tamp pads, etc.

Though the research team did not provide "novel" curriculum ma- terials for the control group, some of the activities used during the week wi th the control groups were new activities for the children (planned by their classroom teacher). Each week teachers routinely a t tempt to introduce novel activities for classrooms to build on prior experiences and extend previous learning. All teachers were involved in the briefing sessions and were visited by researchers to in part

236 C h i l d & Y o u t h C a r e F o r u m

assure that control group teachers did not pattern activities after the treatment groups curriculum.

Teachers of treatment groups were encouraged to follow the lesson plans as closely as possible, taking into account their classroom's par- ticular needs and characteristics and making modifications in the les- sons as necessary. A researcher made daily unannounced visits to in- formally assess the degree to which the teachers were adhering to the plans. With the lesson plan as a guide, the researchers noted that the flannel board stories were used, the topics were discussed during group time and the materials provided for free play time were avail- able for the children. Overall, the researcher found that each group was adhering to the lesson plans. Teachers and children in the control group classrooms had access to the lesson plans at the completion of the data gathering stage.

After the treatment was completed, research assistants who were blind to group assignment, conducted a 10-12 minute data-gathering task with all of the children. Children were escorted individually from their classroom to the "research room" by the research assistant. Tasks taken from the DIAL-R (Developmental Indicators for the As- sessment of Learning) which included shape recognition and con- struction, stacking blocks and tossing a beanbag were administered to each child by a trained researcher.

Following the children's return to the classroom, the research assis- tant completed the Data Gathering Task Instrument (DGTI), specifi- cally designed for this study, to measure the research assistants' per- ception of the data gathering episode. The number of questions asked by the child was noted during the data gathering episode. The dura- tion of the episode was determined by recording the beginning and ending times. In addition, Likert-type scales assessed the assistants' perceptions of the children's level of cooperation, degree of enjoyment of the task as indicated by smiles, relaxed posture, etc., and degree of ease in implementing the tasks (1 = None; 5 =A lot). The research as- sistants were trained and interrater reliability (percentage of agree- ment) was established during a pilot study with 8 children. For 60% of the items, the raters were in agreement for the pilot. The interater reliability increased for the actual study to .74.

The final step in the study was a debriefing session with each child conducted on an individual basis. Immediately following the data gathering task, the children's classroom teacher or aide asked seven questions which focused on the children's knowledge and understand- ing of selected elements of informed consent. In Table 1 the questions that were asked by the early childhood classroom teacher and the corresponding component of informed consent are listed. Debriefing sessions were tape recorded and transcribed. Coding and scoring of

Mary Kay Helling and Teresa B u c h a n a n 237

Table 1 Debrief ing Questions and Corresponding Component of

Informed Consent

Questions Component of Informed Consent

Knowledge of procedures 1. "After you left the room with (research assistant 's name), where did you go?"

2. "After you left the room with (research assistant 's name), what did you do?"

3. "Why did you do those things?"

4. "Did you want to go with (re- search assistant)?"

5. "What would have happened if you had said 'no'?"

6. "Could you have come back to your classroom whenever you wanted to?"

7. "How do you feel about what you did?"

Knowledge of purpose and pro- cedures

Knowledge of purpose and pro- cedures Voluntary participation

Voluntary participation Right to wi thdraw Right to wi thdraw

Reaction to experience

the answers to the debriefing questions varied. For questions 1-3 (where did you go, what did you do and why?), answers were coded as not aware (0) and aware (1). Answers to question 4 (did you want to go?) were coded as no (0), kind of (2), and yes (3). For questions 5 (what would have happened if you had said "no") and 6 (could you have come back to classroom?), answers were coded as would not have been OK (0), would have been OK (1). Answers to question 7 (affect) were coded as negative (0), neutral (1) and positive (2). Due to the relatively small sample size, da ta for the debriefing questions were recorded into dichotomous categories so that the cell sizes would be usable for the appropriate analysis. In terra ter reliability was .84 (percentage of agreement).

Results

Nonparametr ic statistics were used to analyze the data because the variables were categorical and did not meet the assumptions for

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parametr ic statistics. The chi-square tes t was used to assess t reat- ment effects and the contingency coefficient was used to determine the magni tude of relat ionships among the dependent variables (Borg & Gall, 1989; Hays, 1988).

Specifically, a series of 2 x 2 chi-square analyses were conducted to determine the effects of the t rea tment . For these analyses, the differ- ences by t rea tment group for all of the child variables were examined. Each i tem from the DGTI and the debriefing responses were evalu- ated with separate chi-square tests. Additionally, a correlation ma- trix consisting of contingency coefficients was examined to determine the degree of associations among all of the child variables.

An effort was made to control for experimentwise error while avoid- ing Type II errors due to an inappropriately small value of alpha (Hays, 1988). The alpha level for each tests was set at a relat ively low level (.001, before correction; .01 after correction for small sample size) to avoid a potential problem with Type I errors.

Data Gathering Task Instrument (DGTI)

Results of the chi-square tests indicated tha t t r ea tment was related to the children's enjoyment of the task (• = 8.7, p<.003; corrected for small degrees of freedom). Children in the t r ea tmen t group were rated by the research assis tants as demonstra t ing a greater degree of enjoyment than children in the control group.

To invest igate the possible impact of children's temperament , sepa- rate chi-square analyses of the effects of the t rea tment on the results of the DGTI were completed with three groups. The groups were di- vided according to rat ings on the EAS scale. The first group (n = 5) consisted of the extremely nonsocial children who made up the low end of the EAS scale (0-25%). The second group (n--24) consisted of the socially average children who made up the middle of the EAS scale (26%-75%). The third group (n= 7) consisted of the more social children who made up the high end of the EAS scale (76%-100%).

The results of the analyses indicated tha t there were t emperament differences in the t rea tment effects. The children in the t rea tment group who were socially average demonstra ted significantly more en- joyment than socially average children in the control group (• = 7.67, p<.005, corrected for small degrees of freedom). The children at the social extremes did not demonstrate significant t r ea tmen t differences.

Debriefing Questions

Results of the chi-square tests indicated that t r ea tmen t was signifi- cantly related to the children's knowledge of where they went (•

Mary Kay Helling and Teresa Buchanan 239

= 6.6, p = .01, corrected for small degrees of freedom). Children in the treatment group were more likely to accurately report where they went for the research task than children in the control group.

The possible impact of children's temperament was investigated with separate chi-square analyses of the effects of the treatment on the children's answers to the debriefing questions for the three EAS groupings described above. Again, results indicated that there may be temperament differences in the treatment effects. The children in the treatment group who were socially average demonstrated marginally more accurate knowledge about where they went than socially aver- age children in the control group (• _- 5.09, p<.02, corrected for small degrees of freedom). The children at the social extremes did not dem- onstrate any significant t reatment differences.

Additional Analyses

The correlations among the dependent variables revealed interest- ing relationships. First, if children reported feeling "good" about what they did in their response to the debriefing questions, the research assistant reported that it was easier to do the task (C = .42, p<.01), and that the children seemed more cooperative (C = .42, p<.01) and asked more relevant questions (C = .40, p<.01). If the children re- ported feeling good about what they did, they also had a more accu- rate idea of what they did (C = .40, p<.01) and why they did the tasks (C = .34, p<.01).

Other correlations indicated that if the children indicated during the debriefing that they knew their participation was voluntary by saying it would have been okay for them to leave during the research tasks, they had a more accurate idea of why they participated in the research study (C = .40, p<.01). Also, if the children had an accurate idea of why they went to the research task during the debriefing, they tended to ask more questions, both relevant (C = .53, p<.01) and irrel- evant (C = .58, p<.01).

D i s c u s s i o n

The opportunity to conduct research with children in a variety of early childhood service settings is vital to the growth and further pro- fessionalization of the field (Bowman, 1986; Goffin, 1989.) While con- ducting research with children, researchers and service providers need to be knowledgeable of the research process and the rights and responsibilities of all parties. One important component of the re- search process is informed consent. Children appear to be capable of

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deciding whether they want to participate in a study, yet lack a solid understanding of the elements of informed consent.

There appeared to be some merit in providing 3-to-5-year-old chil- dren with information and experiences related to research as a means of increasing their understanding of the research process and their ability to make an informed decision about participation. Children in the treatment classrooms tended to enjoy the research experience to a greater degree than children in the control group, even when control- ling for differences in temperament.

One could speculate that if children enjoy participating in research data gathering tasks, the validity and reliability of the data may be increased. Increased children's enjoyment also appeared to make the task of collecting data easier for researchers. If children are relaxed and comfortable, they may be more willing to participate in the fu- ture. This may be particularly significant for children in university- based child care settings due to the increased likelihood of repeated participation in research studies.

Children who reported a more positive experience also tended to have a more accurate understanding of the research process and pro- cedures. Knowledge of "what is going on" tends to decrease people's anxiety about the situation resulting in a more positive experience (Janis & Terwilliger, 1962; Weiss, 1968).

Child temperament does appear to have the potential to moderate the effectiveness of treatments designed to teach children about the research process. This is an especially important finding because chil- dren at the "extremes" of sociability may be at greater risk for partic- ipating in research against their will. While a child who rates rela- tively low on the sociability scale may not have the social skills needed to refuse an adult request, an extremely social child may par- ticipate in research task simply to please the requesting adult or for the social experience. Either case is ethically questionable and such conditions certainly do not meet the requirements of informed con- sent. These findings suggest that future studies of children's experi- ences as research subjects need to account for individual differences among children.

In addition to the significant findings, several variables did not dif- fer between the control and treatment groups in terms of behavior during the data gathering tasks and understanding of the voluntary nature of participation and the right to withdraw. Several possi- bilities emerge for the lack of differences. First, many of the children may have already participated in research studies diluting the influ- ence of the treatment. Another possible reason for lack of differences could be due to the small sample size. Also, the DGTI was relatively untested and the questions included during the debriefing session

Mary Kay Helling and Teresa Buchanan 241

may need to be altered. In addition, the amount of information in- cluded in the curriculum plan may have been too comprehensive. More repetition on some of the key points may have resulted in greater differences between the treatment and control groups.

Findings of this exploratory study are based on a relatively small sample and are correlational. Results of this study must be viewed as tentative, yet indicate the utility of providing children with develop- mentally appropriate experiences designed to enhance their knowl- edge of research and to increase their ability to make an informed decision about participating in a study.

Researchers and service providers are encouraged to work together to facilitate children's positive experience in research related tasks. Specific, hands-on activities may be helpful in meeting this goal.

Many questions remain to be addressed. The present study did not account for the past experiences of children in research studies. If children have participated in previous research they may be more comfortable with the process. Also, results of this study are only gen- eralizable to similar samples. Research is needed with diverse popula- tions of children in a variety of early childhood settings. In addition, whether the treatment would carry over to other experiences of par- ticipating in research is also an important question.

This study provides insight into what variables might be important to consider in the study of children's consent to participate in re- search studies. Researchers, early childhood professionals and par- ents need to be sensitive and responsive to children's rights in the research process. All parties involved are encouraged to be proactive to insure that children's rights as research study participants are be- ing protected.

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