Journal of Pediatric Psychology, Vol. 21, No. 1, 1996, pp. 57-72
The Impact of Experience on Children's
Understanding of Illness1
Jackie Crisp2
77K University of Technology, Sydney
Judy A. Ungerer and Jacqueline J. Goodnow
Macquarie University, Sydney
Received April 6, 1993; accepted June 26, 1995
Reported two studies investigating the relationship between the extent of children's experience with illness and their level of understanding about the causes
of illness. Both studies compared children with experience of a major chronic
illness (cystic fibrosis in Study 1 and cancer in Study 2) with children whose
illness experience was relatively minor and acute. The age range of the children
in Study 1 was 4.6 to 10.6 years; in Study 2 it was 7 to 14 years. The measure of
understanding of illness was the Bibace and Walsh (1980, 1981) Piagetian-based
test. To determine the specificity of illness experience effects, performance on
this test was considered against a second measure of cognitive functioning:
conservation of amount and volume in Study 1; the Peabody Picture Vocabulary
test—Revised in Study 2. Results point to both age and experience as contributing
to children's understanding of illness. Methodological issues and implications
for future research are discussed.
KEY WORDS: illness; cognitive development; children; illness experience.
•The research presented in this paper was supported by New South Wales Nurses' Registration Board
and The Australian Research Council. A number of people and groups made it possible. At the
Macquarie University School of Behavioural Sciences we thank Associate Professor Graeme Russell
and Dr. Alan Taylor. Within the hospitals, we happily acknowledge the assistance of the Cystic
Fibrosis Team and Oncology Units at The Royal Alexandra Hospital for Children, and the Oncology
Unit at The Prince of Wales Children's Hospital.
J
AI1 correspondence should be addressed to Jackie Crisp, Faculty of Nursing, The University of
Technology, P.O. Box 222, Lindfield 2070, New South Wales, Australia.
57
0146-S693/96/0200-0057J09.50/0 C 1996 Plenum PuWbhinj CcijxMioa
58
Crisp, Ungercr, and Goodnow
To meet children's needs for information and support in health care settings, it is
necessary to understand the processes that influence children's acquisition of
knowledge about illness. Most research exploring the understanding of illness
has focused on the role of children's general level of cognitive development. In
contrast, the impact of experience has received less attention, and available
findings are inconsistent. The purpose of the two studies reported here was to
assess the influence of experience on children's understanding of illness, using
research designs intended to overcome some of the problems apparent in earlier
work.
Age is the variable most often used to explain changes in children's understanding of illness. It has die appeal of being easily used in clinical practice, of
having been shown empirically to correlate with shifts in understanding, and of
being linked to a general theory of cognitive development (Piagetian theory).
Piaget's proposal mat children's thinking displays general qualitative changes in
the course of shifting from one stage of thinking to another has provided a way of
bringing together findings that as children grow older their understanding of
illness becomes less concrete (Campbell, 1975; Simeonsson, Buckley, & Monsos, 1979), less egocentric (Banks, 1990; Bibace & Walsh, 1980), less likely to
be determined by external cues or the responses of others (Neuhauser, Amsterdam, Hines, & Steward, 1978), and less likely to include overgeneralization of
the concept of contagion (Kister & Patterson, 1980).
Experience is a variable suggested by theories of cognitive development that
emphasize the importance of accumulated expertise in specific content areas
(e.g., Keil, 1988). Where Piagetian theory, with its emphasis on general changes
in cognitive capacity, leads one to expect that the level of understanding in one
content area will be similar to that in others, expertise meories allow for (indeed
predict) varying levels of understanding in response to varying degrees of experience in particular domains or content areas. Specific-domain theories have not
generally been brought to bear upon children's understanding of illness, although
Eiser (1989) has argued for their extension.
If extended, specific-domain theories suggest two possibilities. One is that
the understanding of illness may be more advanced among children who have
had more than the usual degree of experience with illness: more advanced in
comparison with the understanding displayed by less experienced children or
with the level of understanding displayed in content areas other than those related
to illness. The other is the occurrence of an interaction between age and experience, with experience making a difference to the level of illness understanding at
one age but not at another. Either result would moderate any clinical use of age as
the base for deciding upon the level of advice or explanation offered to children.
The research to date does not yield clear conclusions about the extent to
which experience (alone or in interaction with age) needs to be taken into clinical
or theoretical account. Comparisons between more versus less experienced chil-
Children's Understanding of Illness
59
dren have yielded positive effects from experience (Feldman & Vami, 1985), no
effects (Myers-Vando, Steward, Fblkins, & Hines, 1979), a difference in favor of
less experience (Cook, cited by Burbach & Peterson, 1979), and an interaction
between age and experience: positive effects from experience among 9- to 12year-olds but not among 6- to 9-year-olds (Campbell, 1975), and among second
graders but not among preschoolers (Redpath & Rogers, 1984).
The lack of a common result has been suggested as stemming from problems with methodology (Banks, 1990; Burbach & Peterson, 1986). Variations in
the way illness experience has been defined and measured, in the ages of children
studied, and in the research methods utilized have hindered an additive approach
to work in the area.
The present studies address these difficulties by adopting a particular way of
specifying experience, by sampling ages that allow for interaction effects, and by
choosing measures that help specify the effects of experience. Aspects of design
which apply to both studies are described below. Variations specific to Study 2
which were prompted by the results of Study 1 are noted in the preface to Study 2.
Specifying Current and Past Experience
In both studies reported here the comparisons are between groups with a
current or recent experience of hospitalization. Illness then is an issue which both
groups of children are likely to have given some thought to, a situation that may
not be the case when the comparison is between "sick children" and "healthy
controls." The difference between the groups is that the children in one group
have experienced prolonged illness and repeated hospitalization (cystic fibrosis
in Study 1, and cancer in Study 2). The children in the other group have been
hospitalized for an acute illness after relatively uneventful health histories. In the
language of expertise theory (Chi, Glaser, & Farr, 1988) one group consists of
experts in the domain of illness, the other of novices.
Allowing for Interactions
In both studies, the samples cover variations both in age and in experience.
Each study contains four groups: younger novices, younger experts, older novices, and older experts. The age ranges chosen are designed to tap shifts that
Piagetian theory points to as involving change in a child's general capacity to
understand events (ages 4 to 6.6 and 7 to 10 years in Study 1; ages 7 to 10.6 and
10.7 to 14 years in Study 2).
This four-group design allows more than one form of interaction to emerge.
It may be that experience benefits older children, either because they have the
intellectual capacity to benefit from the information that experience provides, or
60
Crisp, lingerer, and Goodnow
because they are given more information than younger children. The other possibility is that experience benefits younger children more than it does older children, providing them with access to information that normally would not come
their way until a later age.
Specifying the Effects of Experience
One way to determine the effects of experience is to compare performance
on a task measuring the understanding of illness with performance on a task
measuring general cognitive level. If the performance on the first type of task
outstrips performance on the second, a positive effect from experience is indicated.
In both studies, children's understanding of illness is scored on the basis of
answers to questions about illness, using scoring consistent with Bibace and
Walsh's (1980, 1981) model. The questions deal with the understanding of the
common cold (Study 1) and illness in general (Study 2). The comparison measure for general cognitive level in Study 1 comes from a task for the understanding of mass and volume (Laurendeau & Pinard, 1962, cited by Bernstein &
Cowan, 1975), which is scored in levels and stages like the understanding of
illness test. The comparison measure in Study 2 was the Peabody Picture Vocabulary Test-Revised (PPVT-R; Dunn & Dunn, 1981), which yields finer-grained
percentile scores. In both cases the aim was to allow a comparison of performances not only across age levels and degrees of experience but also across
illness and nonillness content areas.
To summarize, the major aims of the present studies were to examine the
effects of both age and experience with illness on the development of children's
understanding of illness, to explore methodological issues involved in making an
adequate test of both factors, and to bring out the relevance of both Piagetian and
expertise models of development.
STUDY 1
Method
Subjects
Forty children were recruited from a large pediatric referral hospital in
Sydney. All children spoke fluent English. Potential participants and their parents) were approached while the child was an inpatient at the hospital or attending a routine clinic visit. Refusals to take part in the project occurred in five
instances, producing an overall participation rate of 89%. The most common
Children's Understanding of Illness
61
reason for refusal was lack of time. One of the child's parents, as well as the
child, signed consent forms after a full explanation of the study was given. While
it was stressed to both the child and parents that the child could terminate the
interview session at any time, none chose to do so.
The sample included four groups of 10 subjects each: younger novices,
older novices, younger experts, and older experts. Children regarded as novices
had unremarkable illness histories with only one, current hospitalization for an
acute illness (e.g., pneumonia, cellulitis, abdominal pain). No systematic difference was noted across younger and older children in relation to the type of acute
illness which had led to their hospitalization. Expert children had cystic fibrosis,
with diagnosis at least 2 years prior to the time of the study and a history of
several hospitalizations.
The mean ages for the two younger novice and expert groups were 5.9 (SD
= 0.6) and 6.0 (SD = 0.5) years, respectively (range = 4.6 to 6.6). Mean ages
for the two older novice and expert groups were 9.3 (SD = 0.9) and 9.8 (SD =
0.9) years, respectively (range = 7.6 to 10.6).
The occupation of the child's father, de facto father, or single mother was
rated using Daniel's (1983) Occupational Prestige Scale. The four groups were
not significantly different from one another, with middle to lower level occupations the most commonly represented. Each of the two younger groups contained
seven boys and three girls: there were six boys and four girls in each of the two
older groups. All children attended normal classes within their schools.
Measures
Illness Causation Task. Nine questions about the common cold were used to
explore the children's understanding of illness. The common cold was selected as
a content area because it would not automatically bias results in favor of the
expert group. The list included questions such as "How do you get a cold?",
"What happens to you when you get a cold?", and "How do you get better when
you have a cold?". To give children the opportunity to display their full understanding, questions were followed up with prompts (e.g., "Can you tell me more
about that?"). Scoring was according to the levels and stages of the model
developed by Bibace and Walsh (1980, 1981). This model has been more fully
developed and tested than others available in the literature (Burbach & Peterson,
1986; Walsh & Bibace, 1991; Young, McMurray, Rothery, & Emery, 1987). The
model allows for assignment to one of Piaget's three main stages (preoperational,
concrete operational, and formal operational) and to levels within each of these.
The first stage—preoperational—contained Level 1, Phenomenism (e.g., "You
just get it . . . from sun I think") and Level 2, Contagion (e.g., "The wind blows
around and around you and you get sick"). The second stage—concrete
operational—contained Level 3, Contamination (e.g., "You get it when other
62
Crisp, lingerer, and Goodnow
kids put it on your face") and Level 4, Intemalization (e.g., "The germs go in
your mouth"). The third stage—formal operational—contained Level 5, Physiological (e.g., "Your lungs get filled up with mucus and stop doing their job")
and Level 6, Psychophysiological (e.g., "When you're all stressed out and that
makes your body not work properly"). The children's scores were defined as the
highest level displayed in response to any of the questions.
Physical Conservation Task. Children were asked to state if changes in the
appearance of otherwise identical plasticine balls would affect the amount of
plasticine in the ball (Bernstein & Cowan, 1975). They were also asked if, how,
and why the plasticine balls would affect the level of water if they were put into
the glasses. Justifications for answers were sought. The scoring system assigned
children to one of six levels within the three Piagetian stages. The first two levels
(Level 1: preoperational, Level 2: transitional) were coded as preoperational
stage responses. The next three levels (Level 3: concrete operational, Level 4:
transitional 1, Level 5: transitional 2) were coded as concrete operational stage
responses. The last level (Level 6: formal operational) was regarded as the only
response at the formal operational stage.
For both measures, all responses were coded for developmental level from
the transcripts by two independent coders with backgrounds in both nursing and
psychology. Bom raters were familiar with the tests and discussed the process in
detail prior to independently coding the responses. No information concerning
the child's age and backgrounds appeared on the transcripts. Interrater agreement
on the illness measure calculated on a question-by-question basis and was 90%
[number of agreements/number of agreements + disagreements)]; interrater
agreement for the physical conservation task (95%) was calculated on the highest
level of performance evident in the children's responses [number of agreements/
number of agreements + disagreements]. Disagreements between coders were
resolved by discussion prior to statistical analysis.
Procedure
All interviews were conducted by the senior author who had two contacts
with the child in the course of the research: initially for recruitment, and later for
the assessment itself. At the time of the research the interviewer had no health
care responsibilities for the children and had no previous contact with 78% of the
children. The interviewer had, however, nursed eight of the expert children 2-4
years prior to the current research.
Interviews took place when the children were at the end of an inpatient stay
or on a clinic visit. Experts were mainly interviewed at a routine clinic visit,
although 6 of the 20 were contacted while inpatients and interviewed just prior to
their discharge. The interview took place in a building away from hospital wards.
63
Children's Understanding of Illness
Children completed the physical conservation task prior to the illness causation
measure, and all interviews were audiotaped and transcribed.
Results
Figure 1 displays the distribution of scores on the two tasks (understanding
of illness and physical conservation) for the four groups of children. It points to
Understanding of Illness Causation
Yuxgar 3. - Nwfcas
_ _ _ __
Yo»^f 34
[J
C M * 8> - Nmfca
Understanding of Physical Conservation
Ycuigar &• - ExprnU
Ci
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F
8
Otdv Si - Novton
OkkrSt-Eipsti
-V,
F
8
F
8
Fig. 1. The understanding of illness causation and physical conservation as a function of age and
experience with illness. Understanding is indicated by placement of children's responses in (a) one of
six levels and (b) one of three stages: Preoperational (P), concrete operational (Q, and formal
operational (F). YoungeT refers to children 4.6 to 6.6 years, older to children ages 7.6 to 10.6 years.
Children with little experience are designated "novices," those with greater experience are "experts."
64
Crisp, lingerer, and Goodnow
age effects on both tasks (on both, the younger children show a lower level of
understanding than the older children), and to differences between the tasks in
their relationship to age (younger children were more likely than older children to
display a higher stage of reasoning on the illness causation task than they displayed on the physical conservation task; older children were more likely to
display the opposite pattern).
A survey of the data across groups and tasks indicated that each of the six
levels of performance was represented, but at the subgroup level there were
several empty or low frequency cells. Therefore, the six levels were collapsed
within stages to yield a three-tiered ordinal scale composed of preoperational,
concrete operational, and formal operational stages. This made the distribution
of scores more appropriate for statistical analysis and had a second advantage as
well. Analyses using six levels rely on the assumption of developmental equivalence of levels across tasks. Similar data have been treated as if this assumption
was met (Bernstein & Cowan, 1975; Brewster, 1982; Feldman & Vami, 1985).
The reduction used here, however, affords a more conservative approach to the
analysis, since only developmental equivalence of the major stages across tasks
is assumed.
The first analyses considered each task separately and tested for age differences in performance on each. Due to the small sample, groups were collapsed
across experience levels prior to analysis yielding the following distribution of
subjects. For illness understanding, the percentage of younger children in each of
the three stages was 45% preoperational, 55% concrete operational, and 0%
formal operational. The corresponding percentages for older children were 0,95,
and 5%, respectively. For physical conservation, the percentage of younger
children in each of the three stages was 85% preoperational, 15% concrete
operational, and 0% formal operational, and the corresponding percentages for
older children were 0, 80, and 20%, respectively.
The results indicated that stage of cognitive understanding displayed on
both tasks increased with age. Chi-square analysis of stage of performance by
age yielded significant results for illness understanding, x^l, N = 40) = 11, p
< .001; and physical conservation, xHl,N = 40) = 29.6, p < .001.
The next analysis tested for experience effects and permitted detection of
domain-specific effects. This analysis compared the percentages of children
demonstrating each of two patterns of performance: Pattern A—a higher stage of
understanding displayed in the area of illness in relation to physical conservation,
and Pattern B—the same stage of understanding in both areas or a higher stage of
understanding in the area of physical conservation in relation to illness.
The incidence of the two patterns varied among the four groups: younger
novices, younger experts, older novices, and older experts. Respectively, 20, 60,
0, and 10% displayed Pattern A. In contrast, the percentages for Pattern B were,
Children's Understanding of Illness
65
respectively, 80, 40, 100, and 90%. No significant experience differences were
found when novices and experts were compared on these patterns, however, chisquare analysis comparing the younger and older groups on the incidence of the
two patterns yielded a significant finding x 2 (l, N = 40) = 7, p < .008. Younger
children were more likely than their older counterparts to display a higher stage
of reasoning on the illness task than on the physical conservation task. Further
analysis comparing younger novices and younger experts failed to detect a significant interaction between age and experience (p < .068).
STUDY 2
Study 1 pointed to a relationship between age and differences in children's
level of reasoning across the two tasks, but no clear experience effects or interactions between age and experience were found. Three factors might account for
this pattern of results. The first has to do with the nature of the questions asked
with regard to the understanding of illness. Questions about the common cold
may not have provided the children with sufficient opportunity to display their
understanding of the causes of illness. To check this possibility, Study 2 used
more comprehensive questions about illness in general, allowing the emergence
of more sophisticated explanations.
The second factor has to do with the measure used to assess general cognitive level. There are advantages to using measures that use comparable stage
descriptions of understanding in two domains. The price paid, however, is that
descriptions are at such gross levels that it may be hard to detect changes in
cognitive functioning as a result of experience. For instance, children could be
located only at one of three stages, and in Study 1 most of them fell into only two
of these. A more differentiated measure of cognitive functioning would permit a
stronger test of the specificity of illness experience effects. The conservation task
is accordingly replaced in Study 2 by the PPVT-R.
The third factor has to do with the age of the children. Interactions between
age and experience may operate in two directions: in the direction of a raised
level of performance among younger children, and in the direction of a depressed
level among older children. The first type of effect could stem from younger
children having more to learn. The second could stem from children turning
away from increased understanding as they grow older, to reduce anxiety as the
consequences of their chronic illness become more manifest. The "older" group
in Study 2 covers the age range of 10.7 to 14 years to see if interaction effects are
more likely to be observed at more advanced developmental levels. Overlap
between age groups in the two studies means that the older group in Study 1 is
similar in age to the younger group in Study 2.
66
Crisp, lingerer, and Goodnow
Two final questions were raised by Study 1. The first has to do with the
generalizability of results to other forms of experience with illness. Children with
cancer, for instance, might yield a different pattern of results from those with
cystic fibrosis. Children with cancer face an illness with later onset, disrupting an
earlier way of life (a feature that may increase the likelihood of reflection). In
addition, the depression of their immune system and other side effects of cancer
treatments are likely to provide them with experience across a range of illnesses
and symptoms, a feature that may increase the likelihood of their understanding
of illness in general.
The last question has to do with the detection of differences among the
groups. The small sample used in Study 1 made it difficult to have confidence
that group differences were fully explored. Consequently, Study 2 involved almost twice as many children: 35 novices and 36 experts.
Method
Subjects
Seventy-one children were recruited from two major pediatric referral hospitals in Sydney. All children spoke fluent English and were involved in a study
of children's perspectives on health care procedures (Crisp, 1993). Refusals to
take part in the project were usually associated with a lack of time, and an overall
participation rate of 88% was obtained. One of the child's parents, as well as the
child, signed consent forms after a full explanation of the study was given. All
children chose to finish the interview, although they retained the right to terminate it at any time.
Four groups of children were included: younger novices (n = 22), younger
experts (n = 20), older novices (n = 13), and older experts (n = 16). Novice children had illness backgrounds similar to those forming the novice group in Study 1.
Expert children had cancer (58% leukemia; 42% other cancers), with diagnosis at
least 6 months prior to interview (range = 6 to 42 months; Mdn = 11.5).
Mean ages for the two younger expert and novice groups were 8.6 (SD =
0.9) and 8.3 (SD = 0.8) years, respectively (range = 7 to 10.6). Mean ages of
the two older expert and novice groups were 11.4 (SD = 1.0) and 11.8 (SD =
1.2) years, respectively (range = 10.7 to 14).
As in Study 1, Daniel's (1983) Occupational prestige Scale was used as a
measure of socioeconomic status. Middle to lower level occupations were the
most commonly represented, and there were no significant group differences. All
four groups contained both boys and girls, with the number of each varying
somewhat from one group to another younger novice (13B, 9G), younger expert
(15B, 5G), older novice (9B, 4G), and older expert (10B, 6G). All children
Children's Understanding of Illness
67
attended normal classes within their schools. For a number of the experts, however, their disease and associated treatments had severely affected school attendance.
Measures
Illness Causation Task. As in Study 1, children's understanding of illness
was assessed using the model developed by Bibace and Walsh (1980, 1981;
Walsh & Bibace, 1991; Young et al. 1987). Questions focusing on illness in
general were used, for example, "What happens when you are sick?", "How do
children get sick?" and "How do you get better when you are sick?" As in Study
1, questions were followed up with neutral prompts to obtain an accurate assessment of the child's level of understanding. Responses were coded in the same
manner as that used in Study 1, and interrater agreement calculated on a question
by question basis (number of agreements/number of agreements + disagreements] was 90%.
General Measure of Cognitive Performance. The Peabody Picture Vocabulary Test-Revised (PPVT-R) was used as a measure of cognitive performance
(Dunn & Dunn, 1981). The PPVT-R is a widely used test of receptive language
and has been subjected to ongoing appraisal and review (e.g., Bracken, Prasse,
& McCallum, 1984; Kipps & Hanson, 1983; Vance & Stone, 1989-1990). Low
to moderate correlations have been found between scores on the PPVT-R and
various "g" factor scores (Bracken et al., 1984). Standardized procedures for
administration and scoring were followed. The score for each child was in the
form of an age-related percentile.
Procedure
Two means of contacting potential subjects were used. Names and addresses
of children meeting the criteria for inclusion in the expert group were obtained
from the oncology units within the hospitals. Letters were then sent inviting the
subjects to take part in the research. Telephone calls were used to follow up the
letters, to give any additional information, and to arrange the interviews. Children in the novice group were approached while in hospital, and interviewed
within 1 week of their discharge. In three instances interviews with expert
children were organized to take place in the hospital grounds at the time of the
child's clinic visit. All other children were interviewed in their own homes.
Interviews were conducted by the senior author who had met each child only
once previously in die course of recruiting them for the research. Children
completed the PPVT-R prior to the completing the illness measure, and all
interviews were audiotaped and transcribed.
Crisp, Ungerer, and Goodnow
68
Understanding of Illness Causation
Younger
Y<xwqm 8* • Ncwtoai
Youigar S» - Experti
"CS
Older
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OUmt S» - NOVICM
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Fig. 2 . The understanding of illness causation as a function of age and experience with illness.
Understanding is indicated by placement of children's responses in (a) one of six levels and (b) one of
three stages: preoperational (P), concrete operational ( Q , and formal operational (F). Younger refers
to children 7 to 10.6 years, older to children ages 10.7 to 14 years. Children with little experience are
designated "novices," those with greater experience are "experts."
Results
Figure 2 displays the levels of understanding on the illness measure for the
four groups of children. The figure includes the percentage of children in each
group performing at each of the six possible levels. It points to (a) performance
concentrated on only three of the possible six levels, (b) age differences in
performance, and (c) an experience effect for the understanding of illness, particularly clear in the difference between the two younger groups.
For statistical analyses, comparisons among the four groups were based
upon the frequencies of responses at Levels 3 (contamination), 4 (internaliza-
Children's Understanding of Illness
69
tion), and 5 (physiological) because these were the only levels that were represented in the data. This reduction avoided the problem of empty cells. In addition, and in contrast to Study 1, no cross-task comparisons were conducted and
no reduction to stages was called for. Chi-square analysis of level of illness
understanding by age, collapsing groups across experience level, yielded significant results, xHl, N = 71) = 11.6, p < .003, as did chi-square analysis of level
of illness understanding by experience, collapsing groups across age, x 2 (2, N =
71) = 6.7, p < .003. It appears that both age and experience with illness play a
role in the development of illness concepts.
As can be seen in Figure 2, the experience effect was largely driven by the
superior performance of the younger experts. It was at first puzzling to find that
the younger and older expert groups were not different on illness scores, even
though there was room for higher scores for both. The result was clarified by
analysis of the PPVT-R data. A 2 (Age) x 2 (Experience Level) ANOVA revealed a significant interaction, F(l, 67) = 9.36, p < .003, with no significant
main effects for age or experience. The mean PPVT-R percentile score for the
older expert children was significantly lower than that for the other three groups:
younger novices (M = 51, SD = 27), younger experts (M = 54, SD = 21), older
novices (M = 69, SD = 21), and older experts (M = 38, SD = 20).
The extent to which this drop in general ability displayed by children in the
older expert group may interfere with their capacity to make the most of extensive experience with illness remains to be determined. It should be noted, however, that although the older experts had lower PPVT-R scores than did the
children in the three other groups, their illness knowledge was at the same level
as the younger expert and older novice groups, and superior to that of the
younger novices.
GENERAL DISCUSSION
The major aim of the studies reported here was to examine the effect of
experience on the development of children's understanding of illness. The overall findings indicate that experience with a chronic illness has a facilitating effect
in children from 7.0 to 10.6 years of age. Similar effects may also occur at earlier
ages, but limitations of subject numbers and sensitivity of measures may have
obscured these in this research.
The findings argue for the importance of understanding the contribution of
factors other than age to the development of illness concepts. They also provide
support for arguments against relying only upon general stage models or structuralist theories of development that do not provide a clear role for experience
(Banks, 1990; Eiser, 1989; Keil, 1988).
Although reliance upon stage-based models is not supported, some evidence
70
Crisp, lingerer, and Goodnow
was found for stagelike constraints on experience effects within the domain of
illness. For instance, in neither study did the younger expert children perform at
a higher level than the older children. In addition, very few children displayed
understanding of illness at the formal operational stage (i.e., Level 5, physiological and Level 6, psychophysiological).
The results also bring out some of the methodological and conceptual problems that still need to be addressed in this area of research. There are three such
problems, and they have to do with (a) the importance of specific questions used
to assess children's level of illness understanding, (b) the nature of measures of
cognitive development, and (c) the definition of illness experience.
Importance of Specific Questions Used to Assess Children's Level of Illness
Understanding. The lack of an experience effect in Study 1 led to the hypothesis
that the questions about the common cold did not permit the experienced children
to demonstrate their highest level of illness understanding. It may be that the
explanations given to children regarding "catching" colds are relatively low
level, and fail to stimulate further reflection. Support for the limiting influence of
questions about the common cold appeared in Study 2, where the 7.6- to 10.6year-old experienced children did show advanced understanding of illness when
questions about illness in general were used. The findings of Study 2 also suggest
a further way in which the specific questions used may influence children's
responses. In Study 2 very few children performed at the formal operational
level. Questions that lead to a broader exploration of the impact of illness on the
body, rather than focusing on the initial causes, may be needed to prompt responses at the higher levels. For instance, a common response to questions about
influenza would involve "the catching of some kind of bug." It would probably
take more thorough questioning to get even an adult to provide information about
the changes that occur in the respiratory system and other affected systems within
the body.
Nature of the Measures Used to Assess Cognitive Functioning. The Piagetian stage models which form the basis for measures of illness understanding
represent only large changes in children's knowledge of illness. Measures which
are sensitive to differences in knowledge occurring within major developmental
stages need to be developed so that more subtle influences of experience can be
detected. Differentiating measures of general cognitive functioning may also be
important for assisting the detection of experience effects in some groups. For
example, in Study 2 the use of the PPVT-R to assess cognitive functioning was
particularly useful because it permitted the detection of a deficit in cognitive
functioning in the older experienced group which may not have been apparent if
less sensitive, Piagetian-based models of cognitive development had been used.
Consideration of the impaired cognitive functioning in this group suggests an
alternative interpretation of the finding of no difference in the level of illness
Children's Understanding of Illness
71
understanding between this older expert and the older novice group. Instead of
concluding that experience does not enhance level of illness understanding, it
could reasonably be argued that experience has a positive influence by maintaining age-appropriate development of illness understanding within the context of
deficits in other cognitive domains.
Definition of Illness Experience. Controlling for experience is not simply a
matter of distinguishing between children who are "ill" and those who are
"healthy controls." Nor is it enough to contrast those who have "acute illness"
wim those who have "chronic illness" as one chronic illness does not necessarily
have the same effects as another. Future research designs need to reflect the
complex nature of pediatric illnesses, and the variety of effects that specific
illnesses and their treatments may have on the functioning, experiences, and
perspectives of the children who live with them.
One difficulty facing researchers, however, is that there are few conceptual
frameworks that distinguish among illnesses along dimensions likely to be related to the level of understanding children come to acquire, and that have an
explicit link to the procedures by which understanding comes about. A potential
framework of practical interest is offered by Steward (1987) who argues that two
dimensions—the relative visibility of the illness and its duration—are associated
with disparate experiences. Those children who acquire illnesses such as measles
(a visible disease of short duration) confront the least amount of difficulty understanding and adjusting to the illness, whereas children who develop illnesses
such as diabetes (invisible and chronic) are more likely to become confused and
distressed (Steward, 1987). In effect, the nature of an illness (etiology, complexity of symptoms and treatments, and prognosis) affects the likelihood of reflection and, consequently, comprehension of the disease process.
In summary, our overall conclusion is that experience with chronic illness
can have a facilitating effect on children's understanding of the causes of illness,
although it remains to be determined which particular features of experience
account for this facilitating effect. There is then value in research considering
theories of development that are experience- or expertise-based and that emphasize specific domains of understanding, as well as theories that look to more
general age-based changes.
In terms of practice, the results of the present studies argue for avoiding
assumptions about a child's level of understanding that are based on broad
categories such as age, apparent cognitive developmental level, or even broad
differences in previous experience with illness. The facilitating effect of experience may be expressed in different ways depending on the child's age and the
type of illness the child has experienced. At this point, the only way to be certain
of a child's level of understanding appears to be on the basis of individual
assessments, made with both age and experience in mind.
72
Crisp, Ungerer, and Goodnow
REFERENCES
Banks, E. (1990). Concepts of health and sickness of preschool and school-aged children. Children's
Health Care, 19, 43-48.
Benutein, A. C , & Cowan, P. A. (1975). Children's concepts of how people get babies. Child
Development, 46, 77-91.
Bibace, R., & Walsh, M. (1980). Development of children's concepts of illness. Pediatrics, 66,
912-917.
Bibace, R., & Walsh, M. (1981). Children's concepts of illness. In R. Bibace & M. Walsh (Ed*.),
Children's conceptions of health, illness and bodily Junctions (pp. 31-48). San Francisco: Jossey
Bass.
Bracken, B. A., Prasse, D. P., & McCallura, R. S. (1984). Peabody Picture Vocabulary TestRevised: An appraisal and review. School Psychology Review, 13, 49-60.
Brewster, A. B. (1982). Chronically ill children's concepts of their illness. Paediatrics, 69, 355-362.
Burbach, D. J., & Peterson, L. (1986). Children's concepts of physical illness: A review and critique
of the cognitive-developmental literature. Health Psychology, 5. 307-325.
Campbell, J. D. (1975). Illness is a point of view: The development of children's concepts of illness.
Child Development, 46, 92-100.
Chi, M. T., Glaser, R., & Farr, M. J. (1988). The nature of expertise. Hillsdale, NJ: Erlbaum.
Crisp, J. (1993). Children's perspectives on preparation for invasive health care procedures. Unpublished doctoral dissertation, Macquarie University, Sydney.
Daniel, A. (1983). Power, prestige and privilege: Occupation in Australia. Melbourne: Longman
Cheshire.
Dunn, L. M., & Dunn, L. M. (1981). Peabody Picture Vocabulary Test-Revised. Manual for Forms L
and M. Circle Pines, MN: American Guidance Service.
Eiser, C. (1989). Children's concepts of illness: Towards an alternative to the "stage" approach.
Psychology and Health, 3, 93-101.
FekJman, W. S, & Vami, J. W. (1985). Conceptualizations of illness by children with spina bifida.
Children's Health Care, 13, 102-108.
Keil, F. C. (1986). On the structure-dependent nature of stages of cognitive development. In 1. Levin
(Ed.), Stage and structure: Reopening the debate (pp. 144-163). Norwood, NJ: Ablex.
Kipps, D., & Hanson, D. (1983). Test review: The revised PPVT-R. School Psychology Review, 12,
112-113.
Kister, M. C , & Patterson, C. J. (1980). Children's conceptions of the causes of illness: Understanding of contagion and use of immanent justice. Child Development, 51, 839-846.
Myers-Vando, R., Steward, M. S., Folkins, C. H., & Hines, P. (1979). The effects of congenital
heart disease on cognitive development, illness causality concepts and vulnerability. American
Journal of Orthopsychiatry, 49, 617-625.
Neuhauser, C , Amsterdam, B., Hines, P., & Steward, M. (1978). Children's concepts of healing:
Cognitive development and locus of control factors. American Journal of Orthopsychiatry, 4$,
335-341.
Redpath, C. C , & Rogers, C. S. (1984). Healthy young children's concepts of hospitals, medical
personnel, operations and illness. Journal of Pediatric Psychology, 9, 29-40.
Simeonsson, R. J., Buckley, L., & Monsos, L. (1979). Conceptions of illness in hospitalized
children. Journal of Pediatric Psychology, 4, 77-84.
Steward, M. S. (1987). Illness: A crisis for children, hi J. Sandoval (Ed.), Crisis, counselling,
intervention in the schools (pp. 109-124). Hillsdale, NJ: Erlbaum.
Vance, H. R., & Stone, J. E. (1989-1990). Peabody Picture Vocabulary Test-Revised (PPVT-R).
Diagnostique, 15, 149-160.
Walsh, M. E., & Bibace, R. (1991). Children's conceptions of AIDS: A developmental analysis.
Journal of Pediatric Psychology, 16, 273-285.
Young, M. H., McMurray, M. B., Rothbery, S. A., & Emery, L. A. (1987). Use of the health and
illness questionnaire with chronically ill and handicapped children. Children's Health Care, 16,
97-104.