Journal of Pediatric Psychology, Vol. 28, No. 1, 2003, pp. 17-28
© 2003 Society of Pediatric Psychology
A Controlled Longitudinal Study of the Social Functioning of Children With Juvenile Rheumatoid Arthritis
Children's Hospital Medical Center and the University of Cincinnati
All correspondence should be sent to Robert B. Noll, Division of Hematology/Oncology, Children's Hospital Medical Center, 3333 Burnet Ave., Cincinnati, Ohio 45229-3039. E-mail: nollr0{at}chmcc.org.
| Abstract |
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Objective To complete an assessment of social functioning of children with juvenile rheumatoid arthritis (JRA) and nonchronically ill controls who had been evaluated 2 years earlier (Noll et al., 2000
Key words: juvenile rheumatoid arthritis; children and adolescents; social functioning; peer relationships; disease severity.
| Introduction |
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Juvenile rheumatoid arthritis (JRA) is a heterogeneous group of conditions primarily distinguished by inflammation of the connective tissues (e.g., the joints), JRA affects approximately 30,000-50,000 children each year in the United States (Lawrence et al., 1998
With few exceptions (Harris, Newcomb,
& Gewanter, 1991
), studies of children with JRA suggest that
they are at risk for experiencing social difficulties, often attributed to the
physical effects of the disease and its treatment, as well as the many
disruptions to daily living that children with JRA experience. For instance,
alterations in appearance (e.g., swollen or deformed joints) may cause peers
to react negatively, and many forms of play and sports that stress affected
joints are restricted. Side effects from treatment (e.g., nausea and vomiting
produced by anti-inflammatory drugs), as well as medical procedures and
frequent visits to the doctor, may lead to repeated school absences and
limited time with peers (Lovell et al.,
1990
).
These events have the potential to negatively affect the social functioning
of children with JRA. Several studies have reported that children with JRA
participate in fewer activities than nonchronically ill controls or siblings
(Billings, Moos, Miller, & Gottlieb,
1987
; Timko, Stovel, Moos,
& Miller, 1992
). Children with JRA also have been described as
socially isolated (Wilkinson,
1981
), as considering themselves less popular and attractive than
healthy siblings (Timko et al.,
1992
), and as exhibiting lower social competence than population
norms (Daltroy et al., 1992
).
Two studies have reported that adolescents with JRA are especially at risk for
poor social functioning (Billings et al.,
1987
; Daltroy et al.,
1992
), suggesting that deterioration in social functioning may
accompany adolescence. Finally, multiple studies have suggested that children
with severe forms of JRA experience more social difficulties than patients
with mild or inactive forms (Billings et
al., 1987
; Timko et al.,
1992
; Ungerer, Horgan,
Chaitow, & Champion, 1988
).
Despite the evidence that children with JRA experience problems in social functioning, a number of methodological problems have made findings difficult to interpret. Such problems have included a failure to report recruitment rates and the use of inappropriate comparison groups. Moreover, most information about the social relationships and adjustment of children with JRA has been provided by parents, teachers, or the child, but few studies have reported data directly from the chronically ill child's peer group.
The first purpose of this longitudinal investigation was to extend an
earlier study of the peer relationships of children with JRA and
nonchronically ill controls (Noll et al.,
2000
) by repeating an assessment of social functioning 2 years
later. In both the initial study and this 2-year follow-up, methodological
limitations of previous work were addressed. In particular, a control group
was recruited during the initial assessment by pairing each child with JRA
with a classmate who was the same race, gender, and age. In addition, data
were obtained from multiple sources (e.g., teacher-, peer-, and self-reports)
using standardized measures. At the first assessment, Noll et al.
(2000
) reported no differences
between the two groups on measures of social reputation (What is the child
like?) or social acceptance (Is the child liked?).
Although no differences in social functioning were observed initially, living with the physical effects and complications of JRA and its treatment, as well as enduring continued daily hassles and disruptions, might result in the emergence of social difficulties over time. In addition, 51% of the children with JRA had made the transition from grade school to junior high or high school while participating in this study. This transition is often difficult for healthy children, but may be especially challenging for children coping with a chronic illness. In this investigation, we hypothesized that at the 2-year follow-up children with JRA would be identified by peer-, teacher-, and self-reports as being more socially withdrawn and isolated, as having fewer friends, and as being less popular than their controls. The effects of gender and grade level in school were examined for possible interactions with group (JRA vs. control) across all measures. Children with JRA were also compared to controls on a number of nonsocial attributes related to chronic illness. Specifically, we hypothesized that children with JRA would be perceived by peers as less attractive and athletic than controls, as well as more tired, more physically ill, and more often absent from school. Finally, the effects of disease severity (mild or moderate/severe), activity (active or full/partial remission), and duration on social functioning were examined. We expected that more severe disease and a longer duration of disease would be associated with greater difficulties in social functioning.
The second purpose of this investigation was to examine whether the role of group (JRA vs. control), disease severity, and disease activity affected the subsequent social functioning of children with JRA. We hypothesized that children with JRA, especially those with more severe or active disease, would experience increased social difficulties over time. These social difficulties included more socially withdrawn and isolated behavior, less popularity, and fewer friends.
| Method |
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This follow-up study was part of a larger, longitudinal project examining the psychosocial impact of pediatric chronic illness on children and their families. The initial phase involved an assessment of the social functioning of children with JRA and controls in the school (Noll et al., 2000
Participants
Participants with JRA were recruited from patient rosters at a large,
pediatric tertiary care facility in the Midwest. This center is the only
treatment facility with board-certified pediatric rheumatologists within a
50-mile radius, and a hospital tax levy ensures treatment for disadvantaged
youths. Thus, nearly every child with JRA in the area receives treatment at
this institution. Initial selection criteria for this study required that
children be 8-15 years of age, attending school without full-time special
education, and living within 50 miles of the medical center. All children with
JRA who participated in the initial study (N = 74) were potential
participants for this 2-year follow-up. Children with JRA were diagnosed
according to the classification standards of the American College of
Rheumatology (Cassidy et al.,
1986
) and were 10-17 years of age (M = 12.98 years,
SD = 1.53) at the time of second data collection. Mean time since
diagnosis was approximately 8 years (M = 98 months, SD = 37,
range = 34-173 months). Of the 74 children participating at time 1, 5 children
with JRA no longer met inclusion criteria (2 were living more than 50 miles
from the medical center, 2 were no longer in school, 1 was receiving full-time
special education). Six children could not be located, and 2 families and 4
schools declined to participate, leaving 57 children with JRA (19 boys and 38
girls). For this follow-up sample, type of disease at onset was classified as
the following: (a) pauciarticular (e.g., affecting four or fewer joints;
n = 22); (b) polyarticular (e.g., affecting five or more joints;
n = 27); or (c) systemic (e.g., affecting other organ systems;
n = 8). Disease course was classified as (a) pauciarticular
(n = 26), (b) polyarticular (n = 25), or (c) systemic
(n = 6).
Controls were identified from a pool of children who participated in the
initial classroom study. This was accomplished by selecting a classmate who
was the same gender and race and who had the closest date of birth to the
child with JRA (see Noll et al.,
2000
). This procedure was used so that illness status was not
confounded with multiple social, economic, or cultural risk factors
(Masten, 1989
). Control
families were screened to ensure that they did not have a child with chronic
illness. If a potential control's family declined participation, then the next
classmate whose birth date was closest to that of the target child was
contacted, until a family agreed to participate. Of the 74 controls who
participated in the initial study, 4 children were living more than 50 miles
from the medical center, 4 children could not be located, and 3 schools
declined to participate, leaving 63 controls (21 boys, 42 girls).
Measures
Revised Class Play
(Masten, Morison, & Pellegrini,
1985
). The Revised Class Play (RCP) is a descriptive
matching instrument that requires students or teachers in a classroom to
imagine that they are the director of a play and to cast members of their
class into roles of this hypothetical play. Earlier factor analyses of peer
nominations on the RCP with younger children (grades 3-7) indicated that these
roles are designed to measure social reputation along three dimensions:
sociabilityleadership, aggressivedisruptive, and
sensitiveisolated. Children are assigned scores for each item according
to the number of times they were nominated for each role, and these item
scores are summed for each source to create dimension scores (e.g.,
aggressivedisruptive). Z-score transformations of the
dimension scores are completed within each classroom to adjust for unequal
class size prior to conducting analyses
(Masten et al., 1985
). These
dimension scores have adequate psychometric properties and predict later
functioning (Hymel, Rubin, Rowden, &
LeMare, 1990
; Masten et al.,
1985
; Morison & Masten,
1991
; Noll, Bukowski, Rogosch,
LeRoy, & Kulkarni, 1990
;
Noll, LeRoy, Bukowski, Rogosch, &
Kulkarni, 1991
; Rubin,
1993
).
Recently, it has been suggested that a four-factor structure for the RCP is
a more meaningful, alternative scoring system for a broader age range of
children (Zeller, Vannatta, Schafer, &
Noll, 1999
). The four-factor structure continues to have
dimensions related to aggressivedisruptive and sensitiveisolated
behaviors consistent with those described by Masten et al.
(1985
) for younger children,
but the original sociabilityleadership factor was split into a
popularleadership and a prosocial factor. The popularleadership
dimension consists of items that reflect popularity with peers (e.g., someone
everybody likes to be with) and leadership skills (e.g., someone who is a good
leader). The prosocial factor consists of items that pertain to social
etiquette with peers (e.g., someone who is polite, someone who helps others).
Internal consistencies for each factor were computed based on this study's
sample, and in general, the majority of factors demonstrated adequate and
comparable reliability (Cronbach's
s range from .77 to .90 for peers,
.46 to .73 for teachers, and .65 to .78 for self-data). In addition, evidence
for validity has been provided previously in the pattern of associations with
measures of peer acceptance (Zeller et
al., 1999
).
For this study, three roles were added that were relevant to chronic
illness (e.g., "someone who is sick a lot," "someone who
misses a lot of school," and "a person who is tired a lot"),
along with two roles related to physical appearance and two roles related to
athletic competence (Noll et al.,
1999
). The ratings for each role were standardized within gender
for each classroom. A single score for both physical appearance and for
athletic competence was created by combining the two items assessing each
domain, with higher scores indicating greater attractiveness and athletic
ability (Vannatta, Zeller, Noll, &
Koontz, 1998
). These roles have been used in previous research,
have discriminated between children with a chronic illness and healthy
children, and have been associated concurrently with multiple domains of
social reputation and acceptance (Graetz
& Shute, 1995
; Vannatta,
Gartstein, Short, & Noll, 1998
;
Vannatta, Zeller, et al.,
1998
).
Three Best Friends. Children were asked to choose the three
peers in their class whom they thought of as their best friends. From these
data, each child was given a social preference score based on the number of
times he or she was chosen as a friend by peers and a mutual friendship score
indicating how many of his or her friendship selections were reciprocated.
Z-score transformations of total and reciprocated best friend scores
were completed separately for boys and girls within each classroom to adjust
for unequal class size. This measure has been demonstrated to provide a stable
and valid index of peer acceptance
(Bukowski & Hoza, 1989
;
Gottman, Gonso, & Rasmussen,
1975
).
Like Rating Scale
(Asher, Singleton, Tinsley, &
Hymel, 1979
). This instrument assesses social preference
by providing a measure of the degree to which each child in the class is liked
or disliked by peers. The children are asked to rate each of their classmates
and themselves on a 5-point Likert scale ranging from 1 (i.e., "someone
you do not like") to 5 (i.e., "someone you like a lot")
(Asher et al., 1979
). For each
child, an average social preference score was computed and then converted to
Z-scores for boys and girls within each classroom. This measure has
been shown to be a reliable index of a child's relative social acceptance,
with test-retest correlations of .81 to .86 over a 4-week interval
(Asher et al., 1979
;
Ladd, 1981
).
Severity Ratings. At time 1 and time 2, disease severity
was rated by a pediatric rheumatologist as mild or moderate/severe based on
disease onset and course, the presence of vision problems, radiographic
evaluation, pharmacotherapy, the number of active joints, and the presence of
functional disability. At time 1, 49% of the children (n = 36) were
classified as having mild disease and 51% (n = 38) as having
moderate/severe disease (Noll et al.,
2000
). At the 2-year follow-up, 27 of the children initially
classified with mild disease and 30 of the children with moderate/severe
disease continued to participate. Disease severity was unrelated to whether or
not a child continued to participate at time 2 (
2 [1,
N = 74] = .16, ns). Disease severity ratings completed at
time 2 were available for 53 of the 57 children who participated at follow-up,
as some of these children had transitioned to other clinic or care facilities.
Of these children, 40% (n = 21) continued to be classified as having
mild disease at time 2, while 53% (n = 28) were classified again as
having severe disease. For 8% of the children, the severity of disease changed
over time, from mild to moderate/severe (n = 2) or from
moderate/severe to mild (n = 2). In addition, each child's disease
status was rated at times 1 and 2 as active or in full/partial remission.
Active disease status was defined as the presence of synovitis (swelling or
painful loss of motion), while partial remission was described as a lack of
synovitis but continued use of medication. At time 1, 55% (n = 41) of
the children's disease status was evaluated as active, and 45% (n =
33) had disease in full/partial remission
(Noll et al., 2000
). At time
1, 34 of the children who had active disease and 23 who were in full/partial
remission continued to participate at the 2-year follow-up. Disease activity
was unrelated to whether or not a child continued to participate at time 2
(
2 [1, N = 74] = 1.81, ns). Disease activity
ratings made at time 2 were available for 51 of the 57 children who
participated at follow-up. Of these children, disease status remained active
in 43% (n = 22) of the children and in full/partial remission in 29%
(n = 15) of the children. Twenty-seven percent of the children's
disease changed in status from active to in remission (n = 9) or from
in remission to active (n = 5). Because so few children experienced
changes in disease severity or activity, analyses were not completed to
examine change over time.
Procedures
The initial study of peer relationships and this 2-year follow-up required
informed consent/assent and were approved by the local institutional review
board. The procedures detailed here were used in both studies.
Data collection at time 2 occurred in 110 different classrooms and involved
meeting children as a group in their class at school, usually the English
class. English was chosen because it is a required class to which students are
usually assigned based on ability and level of interest. Thus, there is an
increased probability that each child's friends would be in that class
(Ollendick, Greene, Weist, & Oswald,
1990
). Each child's teacher, along with available classmates who
returned a consent form (90%; N = 2,250 of 2,489), completed the RCP.
During administration of the RCP, children in the class were given a roster
listing all of their classmates of the same gender as the target child to
eliminate sex-role stereotyped nominations and increase the probability of
choosing the target child. Children were asked to nominate one peer from the
roster other than himself or herself for each role and were told that they
could use a name as many times as they wanted if they thought a classmate
could play more than one role. The RCP was administered again, at which time
the children were asked to mark the roles that they thought they would be best
at playing. For the Three Best Friends measure, the children were given
another list with the names of every child in the class from which they could
nominate their first, second, and third best friend. Finally, the children
were asked to complete the Like Rating Scale. Although peer nomination methods
of social reputation and social acceptance such as these were initially
developed for school-age children, this methodology has been used successfully
to assess the social functioning of older children in junior high and high
school (Casiglia, Lo Coco, & Zappulla,
1998
; Luthar,
1995
; Luthar & McMahon,
1996
).
Analyses
Two-tailed independent t tests were conducted to compare families
of children with JRA and controls on demographic variables. In addition,
two-tailed, independent t tests were also used to compare groups of
children on measures of social reputation and social acceptance at time 2.
Correlational analyses were completed to examine the associations between
disease duration and all measures of social functioning, as well as the degree
of individual stability in RCP scores and measures of social acceptance over 2
years. Finally, the effects of several disease variables on changes in social
functioning (i.e., RCP scores and measures of social acceptance) over time
were examined with a series of analyses of variance (ANOVA) with repeated
measures using time as a within-subjects variable and either type of
participant (JRA vs. control), disease severity (mild vs. moderate/severe), or
disease activity (full/partial remission vs. active) as a between-subjects
variable. Holm's procedure for multiple corrections was applied to all
comparisons not hypothesized a priori to control for Type I error
(Holland & Copenhauer,
1988
).1
Only those significant results adjusted for multiple comparisons are
discussed.
Using GPOWER for power calculations
(Faul & Erdfelder, 1992
),
the sample of 120 children produced sufficient power (.77-.96) to detect
medium effects for t tests (d = .5) and for correlational
analyses (d = .3). For the repeated measures analyses using type of
participant as the between-subjects variable, the sample of 120 children
produced adequate power to detect medium effects for the between-subjects
variable (.87), the within-subjects variable (.99), and the within-between
interaction term (.99). Finally, for the repeated measures analyses using
disease severity or disease activity as the between-subjects variable, the
sample of 57 children permitted a medium effect size to be detected with .57
power for the between-subjects variable, .96 power for the within-subjects
variable, and .96 for the within-between interaction term.
| Results |
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|
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Attrition Analyses
Mann-Whitney non-parametric tests were conducted to compare the subsample of children who did not continue to participate at time 2 (N = 28) with those children who did (N = 120). No significant differences were identified between families of longitudinal and nonlongitudinal participants on demographic variables (i.e., family socioeconomic status [SES] and income, family size, and parental age and education). Only one significant difference was observed on the measures of social functioning. Nonlongitudinal participants selected themselves significantly more often than longitudinal participants for aggressivedisruptive roles on the RCP-self (Mnon = .16, SD = .95; Mlong = -.22, SD = .81; U = 1161.50, p < .05). However, these nonlongitudinal participants were not perceived as different from longitudinal participants on this dimension of the RCP from the perspectives of teachers or peers.
Demographic and Background Factors
Demographic information collected at time 1 was reanalyzed for those
families of children with JRA and control families who continued to
participate at the 2-year follow-up. Similar to results at time 1 (see
Noll et al., 2000
), the mean
age for children with JRA (MJRA = 12.98 years, SD
= 1.53) and controls (MCC = 13.12 years, SD =
1.55) was similar, as were estimated IQ scores (based on Vocabulary and Block
Design subtests of WISC-R; MJRA = 108.2, SD =
16.2; MCC = 103.9, SD = 14.0). No significant
differences were observed for SES and income, family size, and parental age
and education. Duncan scores of SES (TSEI2;
Nakao & Treas, 1992
)
indicated that, on average, the heads of households for both groups held
positions in sales or management (MJRA = 49.4, SD
= 20.3; MCC = 48.8, SD = 19.2).
Cross-Sectional Analyses of Social Functioning
The first set of analyses was designed to examine the social reputation and
social acceptance of children with JRA and controls at the 2-year follow-up.
In addition, the effects of concurrent ratings of disease severity, activity,
and duration on social functioning were examined.
Social Reputation
We hypothesized that children with JRA would have difficulties with social
functioning relative to controls. Independent t tests were completed
for each dimension of the RCP for teacher-, peer-, and self-report. No
significant differences were observed
(Table I).
|
To test for interactions between type of participant (JRA vs. control) with gender or with grade level (based on a median split at 7th grade), ANOVAs for all RCP dimensions were performed (2 x 2 design). All two-way interactions with type of participant were nonsignificant.
Roles related to chronic illness (i.e., "sick a lot," "misses a lot of school," and "tired a lot"), physical appearance, and athletic competence were also examined using independent t tests. No significant differences were observed between children with JRA and controls according to peer report. In ANOVAs, two-way interactions between type of participant and gender or grade level were also nonsignificant for these roles.
Social Acceptance
Independent t tests were conducted on all measures of social
acceptance. No significant differences were identified between children with
JRA and controls on the number of times they were selected by peers as a best
friend or received reciprocated friendship nominations. In addition, analyses
of like ratings showed no significant differences between the two groups
(Table I). ANOVAs indicated
that these results did not vary by gender or grade level of the child.
Disease Severity, Activity, and Duration
Differences in social functioning were examined as a function of concurrent
ratings of disease severity and disease activity. No significant differences
were identified on any of the measures of social functioning (i.e., RCP
dimensions, Three Best Friends, and Like Rating Scale) for children with
moderate/severe disease relative to children with mild disease, nor for
children with disease in remission relative to children with active
disease.
Analyses were also conducted to investigate the role of disease duration. Correlations between the measures of social functioning and the number of months since the child with JRA was diagnosed were completed. No significant associations were identified.
Stability of RCP Dimensions and Measures of Friendship Across
Time
Stability of individual differences in RCP scores and measures of
friendship and social acceptance from time 1 to time 2 were examined using
correlational analyses. This was done for the subsamples of children with JRA
and controls, as well as for the sample as a whole. Although considerable
stability was observed across time for most peer- and self-report measures,
less stability was apparent for teacher nominations on the RCP
(Table II). This might be
expected, given that these indices reflected the views of a single rater and
that the children had different teachers at time 2, and in some cases, were at
different schools (i.e., they had started junior high school or high school).
To examine if the magnitude of the correlations for each measure differed
between children with JRA and controls, Fisher's r to Z
transformations were performed. No significant differences in stability were
observed, indicating that individuals in both subsamples tended to retain
their relative position across measurement occasions.
|
Change in Social Functioning From Time 1 to Time 2
The effects of several disease variables on changes in social functioning
over time were examined. A series of ANOVAs with repeated measures was
completed with time as a within-subjects variable and either type of
participant (JRA vs. control), disease severity (mild vs. moderate/severe), or
disease activity (full/partial remission vs. active) as a between-subjects
variable. Time 1 ratings of disease severity and activity were used for all
longitudinal analyses, because these variables were considered fairly stable
over time, with few children experiencing change in either disease
classification. These analyses were conducted on all RCP scores and on the
measures of friendship and social acceptance.
Type of Participant
Mixed factorial ANOVA with time (within-subject) and type of participant
(between-subjects) revealed one significant main effect for type of
participant. On average, over the 2-year period, children with JRA were
selected by teachers more often for prosocial roles on the RCP than controls
(collapsing across time, marginal means: MJRA = .43;
MCC = .03), F(1, 116) = 6.34, p <
.05.2
One interaction between type of participant and time was observed for peer report on the sensitiveisolated dimension of the RCP, F (1, 117) = 5.28, p < .05. While the overall interaction was significant, post hoc analyses indicated that this interaction reflected trends rather than significant effects of time for children with JRA (M1 = .05, SD1 = .93; M2 = .33, SD2 = 1.22), F(1, 55) = 3.99, p < .10, and controls (M1 = .22, SD1 = 1.11; M2 = .09, SD2 = 1.02), F(1, 62) = 1.37, ns. No main effects for time were identified.
Disease Severity
For children with JRA, mixed factorial ANOVA with time 1 ratings of disease
severity as the between-subjects variable revealed no significant main effects
for group (mild vs. moderate/severe) or for time. However, several
interactions between group and time were observed. One significant interaction
was identified for the aggressivedisruptive dimension of the RCP,
F(1, 54) = 6.37, p < .05. Self-reported
aggressivedisruptive scores on the RCP increased significantly for
children with mild disease (M1 = -.43,
SD1 = .52; M2 = .12,
SD2 = 1.01), F(1, 26) = 7.21, p <
.05, while remaining relatively constant over time for children with
moderate/severe disease (M1 = -.21,
SD1 = .90; M2 = -.28,
SD2 = .69), F(1, 28) = .07, ns.
Two additional interactions between disease severity group and time were observed for the number of reciprocated best friends, F(1, 52) = 5.02, p < .05, and like ratings, F(1, 54) = 7.51, p < .01. While the overall interaction was significant, post hoc analyses revealed that the number of reciprocated best friends did not change significantly over time for children with mild disease (M1 = -.19, SD1 = .92; M2 = .25, SD2 = .87), F(1, 25) = 4.24, p < .10, nor for children with moderate/severe disease (M1 = .07, SD1 = .92; M2 = -.18, SD2 = .91), F(1, 27) = 1.33, ns.3 However, like ratings deteriorated significantly for children with moderate/severe disease (M1 = .14, SD1 = .82; M2 = -.22, SD2 = .98), F(1, 28) = 5.67, p < .05, but did not significantly change for children with mild disease (M1 = .10, SD1 = .97; M2 = .31, SD2 = .74), F(1, 26) = 2.24, ns.
Disease Activity
For children with JRA, mixed factorial ANOVAs with time 1 ratings of
disease activity as the between-subjects variable were completed next. One
significant main effect for group (active vs. full/partial remission) was
observed. Children with active disease and children with disease in remission
differed on the number of times they were selected by peers as a best friend,
and these differences remained stable over time. On average, over the 2-year
time period, children with active disease were chosen fewer times as a best
friend than were children with their disease in remission (collapsing across
time, marginal means: Mact = -.22;
Mrem = .15), F(1, 55) = 4.47, p <
.05.4
One significant main effect for time was observed for sensitiveisolated scores on the RCP. All children with JRA, irrespective of disease activity, experienced increasing sensitiveisolated scores on the RCP over time according to peer report, (collapsing across groups, marginal means: Mtime1 = .03; Mtime2 = .32), F(1, 54) = 4.60, p < .05.5
No significant interactions between disease activity group and time were found.
| Discussion |
|---|
|
|
|---|
This study evaluated the social functioning of children with JRA 2 years after an initial study of their peer relationships and emotional well-being (Noll et al., 2000
At the 2-year follow-up, cross-sectional analyses revealed that children
with JRA as a group were not different from controls on any of the measures of
social reputation or social acceptance. In addition, children with JRA were
not different from controls in terms of a number of nonsocial attributes
related to chronic illness, physical appearance, and athletic competence,
suggesting that peers did not perceive these children as chronically ill.
These findings did not vary by gender or by grade of the child, even though
the median split for grade level was near the transition from grade school to
junior high or high school. Finally, concurrent measures of disease
characteristics such as severity, activity, and duration did not affect social
functioning at time 2. These findings of minimal social difficulties for
children with JRA are similar to our initial findings
(Noll et al., 2000
).
In contrast, longitudinal analyses provided evidence that social functioning deteriorated slightly over time for some children with JRA. For instance, a significant interaction between type of participant (JRA vs. control) and time was identified for peer-reported withdrawn behavior. While post hoc analyses revealed no significant change in these behaviors for either group of children, there was a trend for peers to perceive children with JRA as exhibiting increasing withdrawn behaviors over time (p = .051). In fact, the increase in withdrawn behavior over time was significant in a separate analysis involving disease activity. These results need to be replicated, particularly with longer-term longitudinal research, as these trends may continue and strengthen over time. Additionally, children with more severe disease at time 1 had declines in like ratings over time, whereas these scores did not change significantly for children with mild disease. With respect to disease activity at time 1, children with active disease were chosen fewer times as a best friend at both assessment points than were children with disease in remission.
These findings are consistent with a number of studies in which children
with JRA, particularly adolescents and children with more severe disease, were
found to be at risk for experiencing social difficulties. For instance,
studies have reported that older children with severe disease participated in
fewer activities with friends than controls, according to self-report
(Billings et al., 1987
), and
exhibited lower social competence according to the Child Behavior Checklist
(CBCL; Daltroy et al., 1992
).
In addition, Wilkinson (1981
)
observed that adolescents ages 12 to 19 with severe JRA suffered from social
isolation as measured by the number of peer contacts they had during a 1-month
period. While these studies used cross-sectional designs, Timko et al.
(1992
) assessed a group of
children with JRA and their healthy siblings two times over 1 year. At both
assessments, children with JRA participated in fewer activities with friends
than healthy siblings, and those with severe disease had fewer very good
friends than children with mild disease or siblings.
Despite the comparable findings of some social difficulties for children
with JRA, this study was able to extend previous work in several ways. First,
many researchers have described social difficulties primarily in terms of a
decrease in the frequency of contacts with friends, as well as the number of
activities in which the child with JRA participated. However, such a decrease
may be the result of functional limitations and life disruptions (e.g.,
repeated visits to the doctor) that inhibit participation in activities rather
than poor social functioning (Daltroy et
al., 1992
; Drotar, Stein, &
Perrin, 1995
). This study suggested greater risk for difficulties
in peer relationships for some children with JRA, specifically in social
withdrawal and social acceptance. Peer relationships are considered central to
healthy emotional and social development
(Parker & Asher, 1987
),
and there is evidence that an early pattern of isolated and withdrawn behavior
is a risk factor for future difficulties with social acceptance by peers,
negative self-perceptions, excessive anxiety, and depression
(Hymel et al., 1990
;
Rubin & Mills, 1988
). Over
time, participation in fewer activities and diminished peer contact may lead
to having fewer friends (Daltroy et al.,
1992
).
Using multiple sources of information about social difficulties was another
means by which this study extended previous findings. Most studies have
reported social difficulties for children with JRA from only one perspective,
usually the parent. In this study, social difficulties were assessed from
multiple sources. Reliance on parent report when assessing social functioning
may be particularly problematic, because parents primarily observe their
children at home rather than during direct interactions with peers. For
instance, the activities and social subscales of the CBCL social competence
measure have demonstrated poor concordance with children's self-ratings and
with peer nominations (Schneider &
Byrne, 1989
). In this study, most of the findings indicating
social difficulties were based on peer report. Peers may be the best judges of
a child's social functioning, as they have the most daily interactions with
the child. In addition, peer report in this study consisted of multiple raters
(i.e., the child's classmates) of each child, thereby providing a more stable
measure of social functioning than single rater sources (e.g., teacher).
Several findings in this investigation that were not hypothesized are noteworthy. First, teachers perceived children with JRA as being more prosocial than controls over time. While this seems to be an indication of better functioning for children with JRA, peers did not perceive them in this manner. It is conceivable that the withdrawn, and therefore nondisruptive, behavior of children with JRA is interpreted as prosocial by teachers. Second, self-report indicated that children with mild disease perceived themselves as becoming more similar over time to their classmates with respect to aggressive and disruptive behaviors, whereas children with severe disease perceived themselves as remaining the same over time, specifically that they engaged in less aggressive and disruptive activity than peers. These findings suggest that children with mild disease may view themselves as being less passive and as adjusting over time to the physical limitations of the disease. In contrast, children with more severe disease may continue to perceive themselves as being hindered by their physical limitations (e.g., chronically fatigued). Finally, a significant interaction between disease severity (remission vs. active) and time was identified for the number of reciprocated best friends. While post hoc analyses revealed no significant change over time in these behaviors for either group of children, there was a trend for children with mild disease to exhibit increasing reciprocated best friends over time (p = .050). Improvement in social acceptance for children with mild disease may be a result of the less disruptive nature of their disease.
There are several limitations to this investigation. First, this study
obtained data from children at one treatment center. Replication at different
centers using a multisite approach is necessary. Second, a large number of
statistical tests were completed on this sample. Thus, spurious effects must
be considered when interpreting these results, and significant findings need
to be replicated. Finally, the cross-sectional results of this study appeared
to indicate that children with JRA exhibited considerable psychological
hardiness. These results support the theory that the social development of
children is highly protected, with maladjustment occurring only with exposure
to severe adversity (e.g., family disruption or central nervous system damage;
Masten, Best, & Garmezy,
1990
). For example, children with central nervous system tumors
demonstrate considerable social deficits
(Vannatta, Gartstein, et al.,
1998
), while children with other forms of pediatric cancer do not
(Noll et al., 1999
). However,
longitudinal analyses revealed subtle decrements in social functioning over
time for children with more severe or active disease. These findings support
disability/stress models that suggest that chronic illness creates ongoing
strain, requiring continuous adjustment, with the potential for disrupting a
child's psychosocial development
(Wallander, Varni, Babani, Banis, &
Wilcox, 1989
). Moreover, these results appear to fit a dose
response model of disease effects in which children with more severe or active
disease have increasing difficulties over time compared with children with
milder disease.
This investigation is one of the few studies to examine social functioning of children with chronic illness longitudinally. Future work might focus on extending longitudinal studies, particularly into young adulthood. It is also important to understand whether the slight deterioration in social functioning observed in this study is associated with more clinically significant social problems over time or with the development of difficulties in emotional well-being, particularly internalizing symptoms. Thus, further research is needed to examine the social functioning and emotional well-being of these children later in life.
In summary, our findings suggest that children with more severe or active JRA are at risk for a slight increase in social difficulties over time. From a clinical perspective, effect sizes in this study were small and, therefore, may not be sufficient to warrant intervention for most children with JRA. However, there may be subgroups of children with JRA who experience increasing difficulties over time and would be appropriate targets for interventions to ameliorate or prevent such difficulties in the future. Thus, future research should focus on identifying the mechanisms that result in increasing social difficulties over time for some children with JRA. Such work is imperative for the evaluation and development of interventions to improve the quality of social functioning among these children.
| Acknowledgments |
|---|
This study was funded in part by a grant from the National Arthritis Foundation. The authors wish to acknowledge the special contribution of the families and schools participating in this project. Portions of this article have been presented at the annual meeting of the American Psychological Association, Washington, DC, August 2000.
| Notes |
|---|
This paper was reviewed and accepted during the term of the previous editor, Anne E. Kazak, PhD, ABPP.
1 In an attempt to avoid spurious findings (i.e., control familywise Type I
error), corrections for multiple comparisons were applied for exploratory
tests. In conducting tests of hypothesized effects, a less conservative
approach was taken to avoid inflation of Type II error. For these tests,
nondirectional, rather than directional, tests were used to limit Type I
error, but corrections were not applied for the number of analyses performed.
This more liberal approach was taken to increase power, given that this
investigation is one of the few studies to examine social functioning of
children with a chronic illness longitudinally. ![]()
2 Cell means for children with JRA: at time 1 (M1 = 0.34,
SD1 = 1.16) and at time 2 (M2 = 0.54,
SD2 = 1.16). Cell means for controls: at time 1
(M1 = -.07, SD1 = .89) and at time 2
(M2 = 0.13, SD2 = 1.00). ![]()
3 To aid in the interpretation of the Reciprocated Best Friends scores,
descriptive statistics are provided using the raw data. Cell means for
children with mild disease: at time 1 (M1 = 1.30,
SD1 = .99) and at time 2 (M2 = 1.81,
SD2 = .98). For children with severe disease: at time 1
(M1 = 1.53, SD1 = 1.04) and at time 2
(M2 = 1.45, SD2 = .83). Scores ranged
from 0 to 3 for both groups of children. ![]()
4 Cell means for children with active disease: at time 1
(M1 = -.31, SD1 = .76) and at time 2
(M2 = -.13, SD2 = .77). For children
with their disease in remission: at time 1 (M1 = .18,
SD1 = .93) and at time 2 (M2 = .12,
SD2 = .95). To aid in the interpretation of the Best
Friends scores, descriptive statistics are also provided using the raw data.
For children with active disease: at time 1 (M1 = 2.06,
SD1 = 1.48) and at time 2 (M2 = 2.41,
SD2 = 1.37). Scores ranged from 0 to 6 nominations at time
1 and 0 to 5 at time 2. For children with disease in remission: at time 1
(M1 = 2.83, SD1 = 1.80) and at time 2
(M2 = 2.74, SD2 = 1.42). Scores ranged
from 0 to 8 nominations at time 1 and 0 to 5 at time 2. ![]()
5 For children with active disease: at time 1 (M1 = .20,
SD1 = .93) and at time 2 (M2 = .39,
SD2 = 1.24). For children with their disease in remission:
at time 1 (M1 = -.18, SD1 = .91) and
at time 2 (M2 = .24, SD2 = 1.21). ![]()
Received May 21, 2001; revision received October 16, 2001; accepted December 3, 2001
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