Journal of Pediatric Psychology, Vol. 28, No. 4, 2003, pp. 275-279
© 2003 Society of Pediatric Psychology
Brief Report: Child-Rearing Practices of Caregivers With and Without a Child With Juvenile Rheumatoid Arthritis: Perspectives of Caregivers and Professionals
Cincinnati Children's Hospital Medical Center and University of Cincinnati
All correspondence should be sent to Cynthia A. Gerhardt, Division of Hematology/Oncology, Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, Ohio 45229-3039. E-mail: cindy.gerhardt{at}chmcc.org. Anne Kazak, PhD, ABPP, former Editor, served as accepting editor on this article.
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Abstract |
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Objective To evaluate predictions from professionals in pediatric rheumatology regarding the child-rearing practices of caregivers of children with juvenile rheumatoid arthritis (JRA) and healthy classmates. Methods Sixteen professionals identified items from the Child-Rearing Practices Report (CRPR) that were expected to differentiate between caregivers of children with JRA (64 mothers, 45 fathers) and caregivers of healthy classmates (64 mothers, 40 fathers). Families were interviewed, and physician ratings of disease severity were obtained. Results Experts predicted difficulties in protectiveness, discipline, and worry. Ratings from parents of children with JRA showed modest agreement with the professionals, surprising similarity to controls, and a limited association with disease factors. Conclusions Contrary to expert opinion, JRA has only a modest influence on some child-rearing practices. Educating health care providers may minimize misperceptions about caring for children with JRA, and screening parents of children with more severe disease may assist in allocating education and services for families.
Key words: juvenile rheumatoid arthritis; child-rearing practices; chronic illness; parenting..
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Introduction |
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Juvenile rheumatoid arthritis (JRA) affects 30,000 to 50,000 children in the United States each year (Lawrence et al., 1998
), causing joint pain, mobility and vision problems,
growth delays, and organ damage. Systems theory and stress/disability models
suggest that caring for a child with a chronic illness could disrupt parent
and family functioning (Kazak,
Segal-Andrews, & Johnson, 1995). Parents of children with JRA
have reported being overprotective and overinvolved, as well as spoiling their
child and fostering dependence (Barlow,
Harrison, & Shaw, 1998). In other studies, adolescents have
reported parental overprotectiveness, although parents and younger children
did not (Aasland, Novik, Flato, &
Vandvik, 1998; Huygen, Kuis,
& Sinnema, 2000). Furthermore, a more severe, active, or
long-enduring disease may be more likely to affect child-rearing practices.
Parents of children with pauciarticular disease (
5 affected joints) were
noted to be more autocratic than parents of children with polyarticular
disease (> 5 affected joints), but the reverse was true for parents of
adolescents (Huygen et al.,
2000). Another study found no differences between parents of
adolescents with active disease and parents of those in remission on measures
of warmth, criticism, caring, and overprotection
(Aasland et al., 1998). The literature on child-rearing practices among families of children with JRA is limited and has methodological constraints. There has been an overreliance on clinical impressions, few controlled studies, use of unstandardized measures, and small samples. The impact of disease severity also has not been studied routinely. This study examined the child-rearing practices of caregivers of children with JRA and controls from the perspectives of professionals and parents. We expected that (1) professionals in pediatric rheumatology would report that caregivers of children with JRA were overprotective, had difficulty disciplining effectively, and worried excessively, (2) these child-rearing practices would differentiate between caregivers of children with JRA and controls, and (3) these problems would be greater for caregivers of children with more severe, active, and longer-enduring disease.
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Method |
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This study was part of a larger project on the impact of JRA on children and families (Gerhardt et al., 2003
; Noll et al.,
2000).
Participants
Families of Children With JRA. Following institutional
review board approval, families of children receiving treatment for JRA were
recruited via phone. Inclusion criteria were (1) a diagnosis of JRA, (2) age 8
–14 years old, (3) no full-time special education, and (4) living within
50 miles of the hospital. Of the 78 eligible families, 64 participated (4 were
not located, 3 refused, and 7 schools declined the initial phase). The sample
included 64 mothers (Mage = 38.51,
SDage = 6.7) and 45 fathers (Mage =
40.45, SDage = 5.8). On average, children were 11 years
old (SD = 1.6), 69% female, and 89% white.
Matched Comparison Families (COMP). Matched comparison families (COMP) were recruited from among classmates of the same gender, race, and age as the target child. Screening ensured no chronic illness in the family. The sample included 64 mothers (Mage = 37.66, SDage = 5.3) and 40 fathers (Mage = 41.33, SDage = 7.1). On average, children were 11.7 years old (SD = 1.6), 69% female, and 89% white.
Medical Professionals. Sixteen professionals in pediatric rheumatology were recruited at a regional rheumatology meeting to provide their perspectives on child-rearing practices among families of children with JRA. Professionals had at least 2 years of experience (M = 10.7 years; SD = 5.9; range: 2 –21 years) at one of four pediatric hospitals, and all who were approached participated. The group consisted of seven physicians, four nurses, two social workers, and three physical or occupational therapists.
Measures
Demographic Questionnaire. Background characteristics were
assessed, such as age, gender, parental education, and socioeconomic status
(SES).
Child-Rearing Practices Report (CRPR;
Block, 1965;
Block, 1980). The CRPR
is a 91-item measure of the values, attitudes, and goals of parents with
regard to child-rearing. It predicts children's future adaptation
(Block, Block, & Keyes,
1988; Vaughn, Block, &
Block, 1988), and stability has been shown for up to 9 years
(McNally, Eisenberg, & Harris,
1991; Roberts, Block, &
Block, 1984). Concordance between maternal self-report and
observed parenting behaviors also has been shown
(Block, 1980;
Kochanska, Kuczynski, & Radke-Yarrow,
1989).
To minimize social desirability, each item was written on a card, and
parents sorted them into a fixed, seven category distribution (i.e., Q-sort
technique) with 13 items in each category. The items were scored as least
descriptive (1) to most descriptive (7) of the parent's child-rearing
practices for the participating child. A within-family Parental Agreement
Index (PAI), which has been associated with positive family outcomes
(Block, Block, & Morrison,
1981; Vaughn et al.,
1988), also was computed by correlating the mother's and father's
response for each item. Disease Variables. Disease severity,
activity, and course were rated by the child's pediatric rheumatologist
(Gerhardt et al., 2003).
Thirty-four children (53%) had mild disease, and 30 (47%) had moderate/severe
disease. Disease status was equally distributed as active (n = 32,
50%) or in full/partial remission (n = 32, 50%). Disease course was
classified as (1) pauciarticular (n = 31, 48%), (2) polyarticular
(n = 26, 41%), or (3) systemic (n = 7, 11%). Mean time since
diagnosis was 69.77 months (SD = 35.89, range: 10 –149).
Procedures
Following informed consent, parents completed questionnaires in their home
with a research assistant and were paid $100. As in previous work
(Davies, Noll, DeStefano, Bukowski, &
Kulkarni, 1991; Noll,
McKellop, Vannatta, & Kalinyak, 1998), professionals were
asked to pick the CRPR items they felt strongly that parents of children with
JRA would be more or less likely to endorse than COMP.
Analysis Plan
Two-tailed, independent t tests and chi-square analyses (
=
.05) compared families on demographics. One-tailed, independent t
tests or Pearson correlations ( = .05) were used for selected CRPR
items and disease severity comparisons. Two-tailed t-tests ( =
.05) evaluated differences on the remaining CRPR items and PAI. Holm's
correction reduced Type 1 error for exploratory and disease severity analyses
(Holland & Copenhaver,
1988).
Using GPOWER (Faul & Erdfelder,
1992), we found that the sample of 128 mothers produced power (.88
–.94) to detect medium effects for one-tailed t tests
(d = .5) and correlations (r = .30). For fathers, the sample
of 85 allowed power (.74 –.82) to detect medium effects for
one-tailed
t tests (d = .5) and correlations (r = .30). For medium effects on two-tailed t tests, power was .80 for mothers and .62 for fathers.
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Results |
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Professional Ratings
Agreement by 12 of 16 professionals (75%) was found for 58 of 91 (64%) CRPR items including (1) six items expected to discriminate (Table I) and (2) 52 items expected not to discriminate (e.g., "I encourage my child to do her best"). The six items fit three domains: (1) protectiveness, (2) discipline, and (3) parental concern.
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Parent Reports
Background Characteristics. JRA and COMP families did not
differ significantly on background characteristics (see
Gerhardt et al., 2003).
Child-Rearing Practices. One-tailed, t tests compared families on the six CRPR items, and four significant differences were found (Table I). Exploratory analyses for the remaining CRPR items resulted in no significant differences after correction. Comparisons of PAI scores also were similar (Mjra = 0.52, SDjra =.14, Mcomp = 0.50, SDcomp =.17), t (81) = .82, p > .05.
Disease Factors. Mothers of children with moderate/severe disease had higher scores for "I worry about the health of my child" compared to mild disease (Mmod/sev = 6.03, SDmod/sev = 1.22, Mmild = 5.03, SDmild = 1.98), t (61) = –2.45, p < .01. Mothers of children with polyarticular/systemic disease had higher scores for "I try to stop my child from playing rough games or doing things where s/he might get hurt" (Mpauci = 3.50, SDpauci = 1.28, Mpoly/sys = 4.48, SDpoly/sys = 1.48), t (61) = –2.81, p < .01. Fathers of children with active disease had higher scores for "I worry about the health of my child" compared to fathers of children in partial/full remission (Mactive = 6.28, SDactive = 1.27, Mremiss = 5.22, SDremiss = 1.55), t (43) = –2.40, p < .05. Disease duration was not correlated with the six CRPR items.
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Discussion |
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TopAbstractIntroductionMethodResultsDiscussionReferences |
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Despite concern about the burdens assumed by parents of children with JRA, there are limited data on their child-rearing practices. This study included a standardized measure, controls, mother and father reports, a large sample, and disease indicators. Professionals in pediatric rheumatology were asked to predict child-rearing practices that may differentiate families of children with JRA, and these assumptions were tested.
Considerable agreement was obtained by the professionals. The six items
expected to differentiate families fit three domains (i.e., protectiveness,
discipline problems, and worry), and were consistent with prior studies of
parents of children with JRA (Barlow et
al., 1998), cancer (Davies et
al., 1991), and sickle cell disease
(Noll et al., 1998). These
studies and our results also suggested that that experts in multiple
specialties may have generalized views of the impact of chronic illness on
parenting.
Of the six items, two differentiated mothers, and two differentiated
fathers. Mothers of children with JRA reported worrying more about their
children's health and stopping them from playing rough games. Fathers of
children with JRA report worrying more about their children's health and
difficulty punishing their children. This was consistent with prior findings
of parental worry and over-protectiveness
(Aasland et al., 1998;
Barlow et al., 1998;
Davies et al., 1991;
Huygen et al., 2000;
Noll et al., 1998). The modest
support of the experts and the lack of differences on other CRPR items
suggested that having a child with JRA may affect child-rearing practices
specific to the child's health, rather than global parenting practices. These
findings also indicated that most child-rearing practices were relatively
protected and that families exhibited considerable resilience in this area of
functioning.
The impact of disease factors was evaluated to determine whether child-rearing practices were more vulnerable under presumably higher stress and parental strain. There was some evidence that severe disease was associated with greater worry among mothers, and a worse disease course was associated with a greater likelihood of protectiveness. In addition, fathers of children with active disease were more likely to worry about their child's health than fathers of children in full/partial remission. Although these findings seemed intuitive, it was surprising that disease duration was not associated with child-rearing practices. This may be due to the timing of assessments (i.e., 1–12 years postdiagnosis). Families may have experienced greater disruption early in the disease, which then stabilized prior to our evaluation.
Several factors should be considered when interpreting these findings. First, the modest support of the professionals may be due to differences in the administration of the CRPR. However, their expectations were consistent with previous studies using parent report and other measures. Although the CRPR assesses attitudes about child-rearing practices, it is possible that professionals reported on their observations of parents. Parents may be less aware of the differences between their parenting attitudes and actual practices or less likely to acknowledge them. Observational studies would be necessary to evaluate changes in how parents actually interact with their child. Second, it is possible that JRA had an influence on parenting, but that these differences were small and not detected due to the sample size.
Despite expert opinion, child-rearing practices may be largely protected in the long run for families of children with chronic illness. Although we used professional ratings from multiple sites, future research also might include parent and child report from other areas. Longitudinal data could identify predictors of change in child-rearing practices and subgroups of parents in need of intervention. Broad-based parenting interventions may be premature at this stage, but the education of health care providers may alter beliefs about parenting a child with chronic illness and promote more positive and realistic expectations for families.
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Acknowledgments |
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This project was supported by a grant from the National Arthritis Foundation to Robert B. Noll. We thank the families, students, and schools who participated in this work.
Received December 14, 2001; revision received June 5, 2002; accepted July 11, 2002
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