Journal of Pediatric Psychology, Vol. 25, No. 2, 2000, pp. 93-103
© 2000 Society of Pediatric Psychology
Psychosocial Adjustment in Children With Kidney Disease
1 Washington State University Vancouver, 2 Oregon Health Sciences University
All correspondence should be sent to Elizabeth Soliday, Psychology and Human Development, Washington State University Vancouver, 14204 Salmon Creek Ave., Vancouver, Washington 98686. E-mail: soliday{at}vancouver.wsu.edu .
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Abstract |
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Objective: To examine family environment, levels of parenting stress, and child behavior problems in children with one of three kidney diseases compared to healthy children and to examine predictors of psychological distress in the full sample.
Method: Parents of children with steroid sensitive nephrotic syndrome, chronic renal insufficiency, or kidney transplant (n = 41) were compared to 34 healthy children of similar demographic characteristics.
Results: Mean scores on family functioning, parenting stress, and child behavior were within normal limits. Family environment variables significantly predicted child behavior and parenting stress for parents of ill and healthy children. Qualitative responses provided insight into developmentally specific stressors and intervention needs in the illness groups.
Conclusions: These data indicate that long-term survivors of kidney disease function similarly to demographically matched peers and that the family environment may buffer stress caused by illness. Specific concerns raised by parents in the kidney disease groups indicate the need to appropriately assess and intervene with this understudied population.
Key words: chronic illness; children; family functioning; nephrology; psychosocial adjustment.
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Introduction |
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Since the 1970s, treatments for kidney disease in children have improved greatly. While pediatric kidney diseases are relatively rare, with annual incidence rates ranging from 11 to 69 children per million (Wyatt, Kagy, & Kritchevsky, 1996
), improved dialysis techniques, surgical procedures for
kidney transplantation, and new medications provide a better prognosis for
affected children. However, like most chronic illnesses of childhood, chronic
kidney disease seriously affects children's lives as they negotiate the stress
and responsibilities associated with disease management and the prospect of a
shortened life span (Frauman & Lansing,
1983; Hobbs & Sexson,
1993). In addition, these illnesses would understandably affect
the family. Research has found that the impact of chronic kidney disease on
families varies. Clinicians generally conclude that factors such as age of
onset, family structure, and the disease's clinical features influence
psychosocial adjustment and outcome
(Fukunishi & Kudo, 1995;
Schweitzer & Hobbs, 1995;
Vance & Pless, 1983),
although many assumptions remain to be supported with empirical evidence. As
children live longer with chronic illnesses such as kidney disease,
understanding long-term psychosocial sequelae becomes increasingly important
to clinicians and families.
To identify variables influencing long-term psychosocial adjustment across
kidney disease subtypes, we examined the psychosocial adjustment of children
with one of three kidney disease subtypes differing according to intrusiveness
of treatment. The first of these, steroid sensitive nephrotic syndrome (SSNS),
is characterized by massive urinary loss of protein resulting in total body
edema. Although the majority of children can achieve remission with
corticosteroids, most have a chronically relapsing course. About half of
children with SSNS relapse frequently, requiring several 8-12 week courses of
steroids throughout the year. Although 95% of children with SSNS outgrow their
disease without long-term detrimental effects, the average duration is
approximately 10 years (Warshaw,
1994). Second, chronic renal insufficiency (CRI) is partial loss
of kidney function. CRI is invariably progressive, with many children
eventually requiring dialysis or kidney transplantation. As kidney function
deteriorates, the impact on health becomes more pronounced; children require
numerous medications and more frequent physician visits
(Wassner, 1994). And, third,
end-stage renal disease (ESRD) is reached when native kidney function can no
longer sustain life. Kidney transplantation is the treatment of choice for
children with ESRD. Children who receive kidney transplants face the necessity
of lifelong immunosuppression treatment to prevent organ rejection, and most
eventually need retransplantation (Grimm
& Ettenger, 1992).
Available studies on psychosocial adjustment of children with SSNS and CRI
primarily focus on the prevalence of clinically significant distress. Mehta,
Bagga, Pande, Bajaj, and Srivastava
(1995) reported significantly
higher mean behavior problem scores in children with SSNS than those for
healthy controls. Overall, mean scores for both groups were within normal
limits, and the expected proportion of children in both groups scored above
clinical cutoffs. In another comparison between children with SSNS and healthy
controls, scores on behavior rating scales, teacher reports, and a children's
selfperception scale were not significantly different between groups. However,
children with SSNS showed a trend toward more introvertive traits
(Vance & Pless, 1983).
Garralda, Jameson, Reynolds, and Postlethwaite
(1988) compared psychiatric
adjustment in children with CRI, hemodialysis patients, and healthy children.
They reported a trend toward higher internalizing symptoms (i.e., anxiety,
worrying, depressive symptoms) for children in the illness groups. McEvoy
(1990) reported elevated
behavior problems and lower social competence in a comparison between
transplanted children and healthy siblings, though scores for both groups were
within normal limits.
Although these studies reported behavioral functioning within normal
limits, findings of significant differences between children with kidney
disease and healthy controls were not consistent. These discrepancies could
reflect differences in ways researchers measure children's behavioral
adjustment. Two of the above studies
(McEvoy, 1990;
Mehta et al., 1995) used the
Child Behavior Checklist (Achenbach,
1992), which was standardized with healthy children. Researchers
have suggested that instruments standardized with healthy populations are not
adequately sensitive to detect subtle illness-related differences between
chronically ill and healthy children
(Harris, Canning, & Kelleher,
1996; Perrin, Stein, &
Drotar, 1991). In addition, authors in these studies did not
report whether children were assessed during disease remission or relapse
periods, when medication could affect behavior. Only one of the studies
reported duration of diagnosis. Garralda et al.
(1988) reported duration of
diagnosis, but duration was treated as a categorical rather than continuous
variable. Any behavioral differences between children with kidney disease and
healthy controls in the long term remain to be clarified.
In addition to the need to clarify the functioning of children with kidney
disease relative to healthy children, the impact of moderating factors on
children's adjustment merits further attention. Because of the tremendous
impact of children's chronic illness on the entire family, researchers have
examined how family environment variables influence chronically ill children's
and other family members' adjustment. Family systems theorists propose that a
positive family environment can buffer the effects of ongoing stressors
(Moos & Moos, 1994).
Positive family environments have been characterized by high cohesion, which
is the support family members provide one another. In addition, a high degree
of encouragement to express emotions directly, called expressiveness, and low
levels of conflict among family members also characterize a positive family
environment.
Research examining family factors in children's adjustment to kidney
disease generally supports family systems assumptions. In one of the few
available studies linking family environment variables to children's
adjustment, Fukunishi and Kudo
(1995) compared adjustment of
children on dialysis, with kidney transplants, and healthy controls. The
authors reported positive correlations between family functioning (cohesion,
expressiveness) and school adjustment. In a study of children with CRI,
Crittenden and Holaday (1986)
assessed children who had received treatment for CRI for at least 2 years.
They found a significant, negative correlation between parents' reports of
stressful life events and staff ratings of children's behavioral
adaptation.
Although these studies lend limited support to family systems assumptions,
virtually no studies have examined the predictive influence of family
environment variables on adjustment outcomes in the kidney disease population.
We therefore reviewed studies on other chronic illnesses to provide a starting
point for our research. In a study of children newly diagnosed with cancer,
family cohesion was significantly, negatively correlated with parents'
depressive symptoms and child behavior problems
(Manne et al., 1995). Hamlett,
Pellegrini, and Katz (1992)
reported that higher family cohesion and conflict predicted externalizing
behavior scores in a sample of children with asthma and diabetes. Neither the
direction of effect nor duration of diagnosis was reported. In contrast, high
inflexibility, considered a less positive family attribute, has been
associated with better outcomes in children with diabetes
(Klemp & LaGreca, 1987).
Other diabetes researchers have found no significant relationships between
family system variables and adjustment outcomes
(Kovacs, Kass, Schnell, Goldston, &
Marsh, 1989).
Previous studies provide some insight into the functioning of children with
kidney disease and other chronic illnesses but have not consistently shown
increased adjustment problems in children with kidney disease compared to
healthy children. We therefore compared functioning between these two groups.
Few studies on the psychosocial functioning of children with CRI and SSNS have
been conducted, and we included these diagnostic groups in addition to
children with ESRD. We examined the predictive effects of family environment
on parents' and children's adjustment, as this model has not been
systematically applied to the kidney disease population. We also examined the
effects of kidney disease subtype on the issues we have described. Although
previous studies have revealed that chronic illness affects global factors
such as family environment and children's behavior similarly across disease
categories, researchers recommend that disease category continue to be
examined as a factor in psychosocial functioning
(Holden, Chmielewski, Nelson, Kager, &
Foltz, 1997; Lavigne &
Faier-Routman, 1992;
Wallander, Varni, Babani, Banis, &
Wilcox, 1988). Finally, of the studies reporting duration of
illness, the majority were conducted in the early postdiagnosis period, that
is, 1 year or less (e.g., Manne et al.,
1995; Northam, Anderson,
Adler, Werther, & Warne, 1996). To provide information on the
long-term sequelae of kidney disease in children, we assessed families who had
been living with their children's disease at least 1 year.
Results of our study will contribute to the existing literature by
providing heuristic insight on how family system variables influence the
global adjustment of children with kidney disease. Research findings may
provide guidance to help clinicians appropriately target educational and
supportive interventions and to inform health care providers on families'
needs. Thus, we proposed the following questions and hypotheses: (1) what is
the prevalence and severity of child behavior problems and parenting stress in
a sample of children with no chronic illness, or SSNS, CRI, or ESRD 1 year or
more postdiagnosis? Based on previous research, we expected elevated rates of
parenting stress and behavior problems in the kidney disease subgroups
compared to norms, but we expected both stress and behavior problems to be
within normal limits. Based on previous research finding few disease category
differences on global measures (Garralda et
al., 1988; Wallander et al.,
1988), we predicted no differences by disease subtype. (2) How do
family environment variables predict parenting stress and children's
behavioral adjustment across groups? Based on previous research, we expected
that families with higher cohesion, higher expressiveness, and lower conflict
would have more positive child behavior and lower parenting stress. As in
question 1, we expected no effects for kidney disease subtype.
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Method |
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Participants and Recruitment
Before conducting this study, we obtained approval from each participating institution's respective institutional review board (IRB). Seventy five parents with children ranging from 2-18 years old who spoke English as their primary language agreed to participate. Forty-one families had children with kidney disease: 15 (36.59%) were diagnosed with SSNS; 12 (29.27%) had CRI; 14 (34.15%) had received a kidney transplant. Children with kidney disease were recruited from the Pediatric Nephrology clinic in a Pacific Northwest teaching hospital. Fifteen additional families were contacted but declined participation; reasons given included lack of time, dissatisfaction with hospital services, change of address with no forwarding information, and no reason given. Analyses of demographics indicated no significant differences on demographic characteristics (i.e., age and gender of child, duration of diagnosis, parent status) between participants and nonparticipants.
In the kidney disease group, children's ages ranged from 1.83 to 18.09
years (SD = 5.09), M = 10.86 (SD = 4.35) years. The
average age of diagnosis for children with kidney disease was 3.53
(SD = 4.18) years, and they had been diagnosed with their illness an
average of 7.33 years (SD = 5.66). The broad age range represents the
relative rarity and age distribution of the kidney diseases we studied. Eighty
percent of children with SSNS are younger than 6 years old at presentation of
illness. By contrast, only 18% of children with ESRD are younger than 6 years
old at the time of renal transplantation and 39% are 13-17 years
(Kohaut & Tejani, 1996;
Wyatt et al., 1996). In our
sample, 50 (66.77%) children were 0-12 years old, and 25 (33.33%) were older
than 12 years. Twenty-seven (65.85%) were male.
A comparison sample of 34 families was recruited from a regional teaching
center. An attempt was made to recruit participants comparable to the kidney
disease sample on geographic location, children's age, gender, family
structure, income level, education, and ethnicity. In both groups, most
children were Anglo from middle-income families (Hollingshead classes II-IV,
see Table I). Chi-square
analyses revealed no significant differences between groups on gender of
child, social class, or ethnicity. The CRI and healthy samples contained
significantly more single parents than the SSNS and transplant groups,
2 = 9.41, p <.05 (see
Table 1). Similar to the kidney
disease sample, the age range of children in the comparison sample was 1.93 to
18.17 years, (M = 9.54, SD = 4.35). A one-way ANOVA with
follow-up comparisons (Scheffè) revealed that
transplant group children were significantly older than the SSNS and healthy
samples, F(3, 68) = 4.53, p <.01 (see
Table 1). In both groups, the
majority of respondents were mothers, 38 (92.68%) in the kidney disease group,
and 30 (88.24%) in the comparison sample.
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Measures
Family Information. Family structure, parents' education level,
occupation, marital status, and age and gender of child were collected.
Hollingshead's (1975) index
was used to calculate social status.
Family Environment Scale (FES; Moos
& Moos; 1994). This 90-item true/false scale measures
family functioning. We selected the three subscales, cohesion, expressiveness,
and conflict, due to their previously demonstrated relationships with parent
and child adjustment outcomes. These subscales have adequate internal
consistency reliabilities, with 
coefficients ranging from.61 to.78.
Testretest reliabilities are also adequate, ranging from r
=.68-.86.
Child Behavior Checklist (CBCL; Achenbach,
1991,
1992). The CBCL is
designed to assess behavior problems and competencies; forms are available for
children 2-3 and 4-18 years old. We selected the CBCL due to its widespread
use in research on children's behavior in a variety of populations. The CBCL
also provides T scores, allowing for pooling and comparison of the scores
across the age range of our sample. Finally, the CBCL contains two openended
questions asking what concerns the parent most about the child and what are
the best things about the child. We felt that analyses of these questions in
addition to the quantitative data would help address previous researchers'
concerns related to the inadequate sensitivity of most standardized
assessments for use with chronic illness populations.
The quantitative portion of the CBCL consists of 118 items assessing
internalizing and externalizing behavioral dimensions. The CBCL has excellent
reported internal consistency reliabilities: =.89-.93, varying by age
and gender of child. One week test-retest reliabilities ranged from.87 to.95,
varying by age of child. Normative data are available.
Parenting Stress Index-Short Form (PSI-SF;
Abidin, 1995). The PSI-SF
is designed to assess stress in the parent-child system. Parents responded on
a Likerttype scale; higher scores indicated higher parenting stress. The 36
items form a global rating of stress in the parent-child system consisting of
three subscales: parental distress, parent-child interaction, and difficult
child. The PSI-SF has high reported internal consistency reliabilities:
for the total score was.91. Normative data are available for children
0-12 years old.
Procedure
Following IRB approval, parents of children with kidney disease were
recruited by phone or letter by the third author (ML), who obtained informed
consent. Comparison families were recruited by the first author (ES). Parents
were told we were trying to learn more about how families with children who
have a variety of illnesses are doing.
Packets containing demographic forms, the FES, PSI, CBCL scales, and a postage-paid return envelope were mailed to the families whose children had kidney disease. Families who returned completed questionnaire packets received $15.00 reimbursement for their time. Parents in the comparison group completed a consent form and questionnaires at their convenience and returned them to the first author.
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Results |
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Preliminary Analyses
Validity Check. As a validity check, the Defensive Responding subscale of the PSI was examined. Scores below 10 indicate defensive responding (Abidin, 1995
). For
the entire sample, the mean score was 15.42 (SD = 4.95), indicating
valid responses. A one-way ANOVA revealed no significant differences across
groups.
Scale Reliabilities. Internal consistency reliabilities
(Cronbach's ) were conducted on CBCL internalizing and externalizing
scales, FES cohesion, expressiveness, and conflict subscales, and the PSI
total stress score. For the CBCL 2/3-year-old internalizing scale,
=.95; CBCL 2/3 externalizing =.94. For CBCL 4/18-year-old
internalizing scale, =.93, and externalizing =.90. On the FES
cohesion subscale, =.67. The for the expressiveness subscale
was.70, and for the conflict scale,.71. On the PSI, for 0-12-year-olds
was.89, and for children 12-18,.89. Scale reliabilities were consistent with
published norms.
Correlations Between Measured Variables. Pearson's rs were conducted between measured variables (see Table II). Correlations between CBCL internalizing, externalizing, and PSI scores were significant (p <.005). Several significant correlations also resulted between adjustment measures and family functioning variables. Correlations were in expected directions: for example, CBCL scores correlated positively with PSI scores, indicating that parents reporting higher stress also perceived their children to have higher rates of behavior problems. Negative correlations between family adjustment, CBCL, and PSI scores indicated that parents reporting more positive family adjustment perceived lower rates of child behavior problems and lower rates of parenting stress. Children's age had low correlations with measured variables, ranging from -.01 to.16 (CBCL internalizing; p =.19). In the kidney disease groups, correlations were conducted between duration of diagnosis and measured variables. Longer duration of diagnosis correlated with lower externalizing behavior problems, r = -.38, p <.05; duration of diagnosis significantly correlated with family conflict, r = -.47, p <.01. Correlations with other variables were nonsignificant.
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Effects of Demographics on Measured Variables. To test for gender effects, t tests were conducted between females (n = 26) and males (n = 47) on CBCL subscales, PSI total stress, and FES subscales. Gender was not reported on two children. Mean scores between genders were highly similar and none of the t tests approached statistical significance. T tests were also conducted to test for differences between single- and two-parent families. The difference between parent groups approached significance on externalizing behavior (t = 1.96, p =.05) and on parenting stress (t = -1.88, p =.07). On both variables, single parents scored significantly higher. One-way ANOVAs were conducted to test for effects of Hollingshead rating on internalizing and externalizing scores, PSI, and FES scale scores. Due to small cell sizes in classes I and V, they were combined with classes II and IV, respectively. No significant differences resulted on measured variables by social class.
Major Quantitative Analyses
Mean Scores on Standardized Measures and Clinically Significant
Distress. To evaluate the prevalence and severity of parenting stress and
child behavior problems in our sample, CBCL internalizing and externalizing,
PSI, and FES subscale scores were calculated for each diagnostic group, that
is, SSNS, CRI, ESRD, and healthy. (Statistical tests for group differences
were conducted in regression analyses using dummy coded variables for SSNS,
CRI, ESRD, and healthy categories.) Descriptive statistics on measured
variables are presented in Table
III. Mean scores for all groups on CBCL internalizing and
externalizing symptoms were within normal limits (i.e., T < 65).
Parenting stress scores were also within normal limits (i.e., < 90) across
groups. Family cohesion, conflict, and expressiveness were in the average to
above-average range.
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The number of participants scoring above cutoffs for clinical distress on the CBCL scales and PSI were also examined. On the CBCL internalizing scale, an expected proportion (i.e., < 15%) of children in the SSNS, CRI, and healthy groups scored above clinical cutoffs. However, four (28.6%) of children with transplants scored above the CBCL internalizing cutoff. On the CBCL externalizing scale, less than 15% of children scored above clinical cutoffs in the CRI, transplant, and healthy groups. Three (20%) children in the SSNS group scored above the clinical cutoff for externalizing symptoms. On the PSI, higher than expected proportions of clinically significant distress were found in the transplant (n = 3, 21.4%) and healthy (n = 7, 19.4%) groups.
Predictors of Children's and Parents' Distress. To examine how family environment variables predicted parenting stress and children's behavioral adjustment, we conducted hierarchical multiple regression equations. Diagnostic group (SSNS, CRI, transplant, healthy) was entered as the first predictor. Because scores for single parents were higher on reported externalizing behavior and parenting stress scores, family structure (single- or two-parent) was entered next as a covariate. FES scales (cohesion, expressiveness, conflict) were entered as a block of predictors. CBCL internalizing and externalizing subscales and the PSI total stress score were outcome variables. Multiple R, F, F change, and ß coefficients are presented in Table IV.
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In the first equation, diagnostic group was dummy coded and entered as a block, family structure was dummy coded and entered as a block, and FES scores were entered as a block of predictors. CBCL internalizing scores were the outcome variable. The set of predictors accounted for 25.97% of the variance in CBCL internalizing scores, F(7, 64) = 3.01, p <.01. In the full model, the block of FES scores accounted for the majority of variance (22.34%); no single predictor emerged as a unique predictor of significant variance. The ß weights indicated that more positive FES scores predicted lower internalizing symptoms.
In the second equation, diagnostic group, family structure, and FES scores were entered as predictors; CBCL externalizing scores were the outcome. The set of predictors accounted for 38.71% of the variance in CBCL externalizing scores, F(7, 60) = 5.41, p <.001. In the full model, the block of FES scores accounted for the majority of variance (30.91%). Family conflict uniquely predicted 17.06% of the variance, t = 4.09, p <.001; expressiveness accounted for 4.19%, t = -2.07, p <.05. Family structure accounted for 4.19% of the variance, t = -2.03, p <.05. The ß weights indicated that more positive family functioning scores and two-parent family structure predicted lower externalizing symptoms.
In the third equation, diagnostic group, family structure, and FES scores were entered as predictors; PSI total stress scores were the outcome. The set of predictors accounted for 38.71% of the variance in PSI scores, F(7, 60) = 5.39, p <.001. In the full model, the block of FES scores accounted for the majority of variance (32.07%). Family expressiveness uniquely predicted 7.45% of the variance, t = -2.69, p <.01. Examination of ß weights indicated FES scales predicted PSI scores in expected directions.
Major Qualitative Analyses
Previous researchers (Harris et al.,
1996; Perrin et al.,
1991) have criticized use of standardized assessments with
chronically ill children. Although we believe the CBCL was the best instrument
to assess general behavioral adjustment, we also examined qualitative
responses. Fiese and Bickham
(1998) proposed that analysis
of qualitative data from rarely studied populations can reveal insights into
participants' experiences and are useful for generating hypotheses and
theories for further research. In addition, our sample contained children from
a wide range of developmental stages, and we believed qualitative data could
provide developmentally specific information. For these reasons, we analyzed
responses to the two CBCL open-ended items, "What concerns you most
about your child," and "What are the best things about your
child."
Two trained coders independently developed coding lists from the CBCL open-ended items. A master coding list was developed and revised by consensus of the two coders to include all responses. The majority (90.24%) of parents responded to the "concerns" item, and 92.68% of parents responded to the "best things" item. For the "concerns" item, we developed seven categories, and additional categories for "no concerns" (n = 3; 17.07%) and no response. For the "best things" item, we developed five categories and one additional category for no response. Response categories and percentages of respondents are presented in Table V.
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The nature of parents' reported concerns was to some degree related to the children's developmental stage. For example, 36.59% of parents indicated illness-related concerns. Parents of school-age and older children were primarily concerned about adherence, for example, "I'm worried about him going off his diet/forgetting to take medications." The concerns of parents of children younger than 5 years related more to long-term prognosis, exemplified by, "Will he outgrow this."
Other concerns of younger children's (i.e., 8 years or younger) parents came primarily from three categories. Growth/development/body image concerns, reported by eight parents, were represented by statements such as "We are concerned about his growth... about him being really small." As children mature physically, whether children will "catch up" in physical development may be more obvious. Externalizing behaviors such as anger and aggression and hyperactivity/inattention were also reported by parents of younger children, for example, "He acts so mean... [I]f he does not get his way, the whole family suffers." Other parents mentioned excessive kicking, screaming, and concern over the impact of short attention span on future school performance.
Parents of school-age and adolescent children reported school adjustment problems such as low motivation or poor attitudes toward academics. As parents of children this age were more likely to observe academic problems, they also observed good school performance and cognitive abilities and special skills/abilities that included leadership qualities, creativity, athletic, and artistic abilities.
Across ages and developmental stages, parents reported both positive personality characteristics and prosocial qualities of their children. Thirty (73.17%) parents described their children using terms such as "spirited," loves life," "very easy going," and "always has a smile." Statements about prosocial qualities included: "He is very sensitive and caring," "[Has] compassion for people," and "Very compassionate kind, and gentle."
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Discussion |
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TopAbstractIntroductionMethodResultsDiscussionReferences |
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In this study, we aimed to provide insight into the prevalence of psychosocial distress and to understand the moderators thereof in three rare pediatric chronic conditions that have received little research attention. Our global assessments of family and child functioning provide information on the general status of the family environment, parenting stress, and child behavior problems in the kidney disease subgroups as compared to healthy children. Across groups of families whose children had disease or were healthy, we found that family cohesion, expressiveness, and conflict predicted child behavior problems and parenting stress. Our qualitative data provide clues for further investigation into the unique needs of the kidney disease population, including several associated with specific developmental periods within the broad age range we assessed.
Among our central findings was the general similarity between the kidney
disease and healthy groups on child behavior problems, parenting stress, and
family environment variables. Mean scores for both groups indicated typical
functioning, which is relatively consistent with previous studies. Vance and
Pless (1983) found few
differences between behavior scores of children with SSNS and healthy
controls. In samples of children with SSNS and other kidney diseases, child
behavior was within normal limits, though scores were elevated compared to
those for healthy children (Mehta et al.,
1995; McEvoy,
1990). In our study, the chronically ill families and children may
have had typical rates of functioning because they had been living with their
illness for at least 1 year. After families and children have been managing
their illness for a year or more, they may have stabilized, returning to
levels of functioning more characteristic of the prediagnostic period.
However, mean scores alone do not fully characterize the functioning of our
study groups. For example, 28.6% of children in the transplant group had
clinically significant levels of internalizing symptoms. Clinically
significant levels of externalizing symptoms were present in 20% of children
with SSNS. Although previous researchers have noted trends toward higher
internalizing symptoms in kidney disease subgroups
(Garralda et al., 1988;
Vance & Pless, 1983), our
finding of higher-than-expected proportions of participants scoring above
clinical cutoffs was unexpected and has not been previously reported. In
examining the potential factors related to the higher rates of clinically
significant internalizing and externalizing symptoms in the kidney disease
groups, we considered the impact of medications. The side effects of
medications used to treat kidney disorders may include both elevated
internalizing and externalizing symptoms
(Soliday, Grey, & Lande,
1999). However, higher levels of externalizing symptoms identified
in the SSNS group cannot be attributed to medication side effects because all
SSNS participants were assessed at least 2 weeks after discontinuation of
medications. The immunosuppressant medications used in the transplant groups
may have been associated with higher internalizing symptoms, though this
suggestion must be supported with systematic research.
Elevated distress was further evidenced in the approximately 20% of the transplant and healthy groups who reported clinically significant levels of parenting stress. Some parents of children with transplants would understandably experience higher rates of distress as they manage repeated hospitalizations for their children, questions over longterm prognosis, and possible struggles over immunosuppressant adherence. For the healthy sample, one might attribute elevated rates of parenting stress to the relatively high rate (52%) of single parents. However, the CRI group had a similar percentage of single parents (58%), yet rates of clinically significant distress did not exceed clinical cutoffs in this group. In the full sample, single-parent status significantly predicted higher externalizing symptoms in multiple regression equations, but it did not predict parenting stress.
Because our healthy and ill child samples were otherwise demographically
comparable, we can only assume that unmeasured situational variables or child
characteristics underlie the elevated distress in each of the groups. No
matter what the cause, we believe our finding is important for several
reasons. Of primary importance is the demonstrated impact that elevated
psychological symptoms, including internalizing and externalizing behavior and
parenting stress, have on children's long-term developmental outcomes
(Abidin, 1995;
Achenbach, 1992). Second, our
results raise greater awareness of the levels of psychosocial distress and
associated risk for negative outcomes in healthy and chronically ill samples
drawn from a region infrequently represented in the developmental
literature.
In addition to identifying the prevalence and severity of child behavior
problems and parenting stress, we identified several moderator variables for
those outcomes. Family system variables (cohesion, conflict, expressiveness)
predicted the majority, up to 32%, of the variance in parent and child
outcomes. Researchers have suggested that positive family relationships can
buffer stress, including that caused by childhood chronic illness
(Moos & Moos, 1994). Our
results indicating that higher family cohesion, higher expressiveness, and
lower conflict significantly predicted more positive adjustment in children
and parents provide support for such a buffering hypothesis. Further, our
finding was consistent with previous kidney disease research indicating
associations between family environment and children's adjustment
(Crittenden & Holaday,
1986; Fukunishi & Kudo,
1995).
In contrast, previous research on diabetes patients has found either no
relationship or a negative relationship between family environment variables
and child adjustment (Klemp & LaGreca,
1987; Kovacs et al.,
1989). We propose that the characteristics of kidney disease are
at least partly responsible for the discrepant findings between chronic
illness groups. Compared to diabetes, kidney disease and its associated
treatments cause more visible changes in appearance. Visible symptoms include
edema and stunted growth; corticosteroid treatments cause changes in facial
appearance and body fat distribution. In addition, the prospect of a child's
potentially shortened lifespan due to need for organ transplant may be
especially prominent compared to the long-term prospects associated with
diabetes. Factors such as the visibility of a condition, its associated
treatment, and perception of shortened lifespan may cause greater
interdependence between family interaction and individual functioning in
children with kidney disease. However, this speculation remains to be explored
with further research comparing kidney disease and other chronic illness
groups.
Although our global assessments allowed us to make conclusions about
general family and child functioning, several of our qualitative results
indicate the need for further assessments targeted at specific age groups
within the kidney disease population. For example, our qualitative analyses
indicated that parents of younger children (8 years or less) were primarily
concerned about their children's acting-out behaviors and attention span. For
this age group, we are in the process of conducting repeated assessments to
determine whether such symptoms constitute a developmental phase or whether
they tend to persist over time (Soliday,
Grey, & Lande, 1999). For older children, several parents
reported academic concerns, such as low motivation for or poor attitudes
toward school. Because kidney disease places children at risk for educational
problems (Hobbs & Sexson,
1993; Schweitzer & Hobbs,
1995), cognitive assessments conducted early in the educational
process may be indicated as part of an overall early intervention effort.
Our results provide clinicians additional suggestions for developing
appropriate family interventions for the kidney disease population. Given that
family environment variables predicted outcomes, clinicians might focus on
strengthening aspects of the family environment, which in turn could lead to
reduced individual distress in children and parents. Clinicians could work
with families to find ways of decreasing conflict, improving family closeness,
and improving expression of emotions. Previous research has found that
improving emotional expression in the family environment can reduce
psychological and physical symptomatology in physically healthy and
chronically ill groups (Goldstein,
Rosenfarb, Woo, & Nuechterlein, 1997;
Minuchin, 1974;
Suedfeld & Pennebaker,
1997). In addition, clinicians could promote children's wellbeing
by focusing on those strengths identified by parents in our study, including
sense of humor, spirit, athletic abilities, love of life, and prosocial
behavior.
In conclusion, we consider our study a preliminary, though systematic, sketch of real families dealing with serious pediatric illness. As an initial effort, we must recognize the study's limitations. All measures were parent report, raising the issue of common method variance. Whereas the number of participating children with kidney disease reflects the relative rarity of the conditions, the sample size was modest. The sample was quite heterogeneous, ranging in economic status and family structure. The children represented a wide range of developmental stages, which again reflects the rarity of these conditions. The fact that 37% of eligible families did not participate is a potentially confounding factor.
Despite its drawbacks, our study identified areas where the healthy and ill children appeared to be at psychosocial risk. Furthermore, we identified potential protective factors in the children's family system. This information benefits researchers and clinicians in designing and implementing appropriate, effective interventions to help ensure the most optimal developmental outcome possible for children with kidney disease. Multisite, longitudinal studies would help us best achieve that goal.
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Acknowledgments |
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Portions of this study were supported by Washington State University Dean's Office Mini Grant Funds. We thank the families participating in this study, Dennis Dyck and Evelyn Florio for reviewing this manuscript, and Shannon Grey for assistance in study design and patient contact.
Received April 9, 1998; revision received October 13, 1998; accepted December 17, 1998
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TopAbstractIntroductionMethodResultsDiscussionReferences |
|---|
Achenbach, T. A. (1991). Manual for the Child Behavior Checklist/4-18 and 1991 Profile. Burlington: University of Vermont Department of Psychiatry.
Achenbach, T. A. (1992). Manual for the Child Behavior Checklist/2-3 and 1992 Profile. Burlington: University of Vermont Department of Psychiatry.
Abidin, R. R. (1995). Parenting Stress Index: Professional manual. 3rd ed. Odessa, FL: Psychological Assessment Resources.
Crittenden, M. R., & Holaday, B. (1986). Psychosocial factors associated with physical growth and behavior adaptations of children with renal dysfunction. Perceptual and Motor Skills, 62, 437-438.[ISI][Medline]
Fiese, B. H., & Bickham, N. L. (1998). Qualitative
inquiry: An overview for pediatric psychology. Journal of Pediatric
Psychology, 23,
79-87.
Frauman, A. C., & Lansing, L. (1983). The child with chronic renal failure: I. Change and challenge. Issues in Comprehensive Pediatric Nursing, 6, 127-133.[Medline]
Fukunishi, I., & Kudo, H. (1995). Psychiatric problems of pediatric end-stage renal failure. General Hospital Psychiatry, 17, 32-36.[ISI][Medline]
Garralda, M. E., Jameson, R. A., Reynolds, J. M., & Postlethwaite, R. J. (1988). Psychiatric adjustment in children with chronic renal failure. Journal of Child Psychology and Psychiatry, 29 (1), 79-90.[ISI][Medline]
Goldstein, M. J., Rosenfarb, I., Woo, S., & Nuechterlein, K. (1997). Transactional processes which can function as risk or protective factors in the family treatment of schizophrenia. In H. D. Brenner, W. Boker, & R. Genner (Eds.), Towards a comprehensive therapy for schizophrenia (pp. 147-157). Gottingen, Germany: Hogrefe and Huber.
Grimm, P. C., & Ettenger, R. (1992). Pediatric renal transplantation. Advances in Pediatrics, 39, 441-493.[Medline]
Hamlett, K. W., Pellegrini, D. S., & Katz, K. S.
(1992). Childhood chronic illness as a family stressor.
Journal of Pediatric Psychology,
17, 33-47.
Harris, E. S., Canning, R. D., Kelleher, K. J. (1996). A comparison of measures of adjustment, symptoms, and impairment among children with chronic medical conditions. Journal of the American Academy of Child and Adolescent Psychiatry, 35, 1025-1032.[ISI][Medline]
Hobbs, S. A., & Sexson, S. B. (1993). Cognitive development and learning in the pediatric organ transplant recipient. Journal of Learning Disabilities, 26, 104-113.
Holden, E. W., Chmielewski, D., Nelson, C. C., Kager, V. A., &
Foltz, L. (1997). Controlling for general and disease-specific
effects in child and family adjustment to chronic childhood illness.
Journal of Pediatric Psychology,
22, 15-27.
Hollingshead, A. B. (1975). Four factor index of social status. Unpublished manuscript, Yale University.
Klemp, S. B., & LaGreca, A. M. (1987). Adolescents with IDDM: The role of family cohesion and conflict. Diabetes, 36, 18A.
Kohaut, E. C., & Tejani, A. (1996). The 1994 annual report of the North American Pediatric Renal Transplant Cooperative Study. Pediatric Nephrology, 10, 422-434.[ISI][Medline]
Kovacs, M., Kass, R. E., Schnell, T. M., Goldston, D., & Marsh, J. (1989). Family functioning and metabolic control of school-aged children with IDDM. Diabetes Care, 12, 409-414.[Abstract]
Lavigne, J. V., & Faier-Routman, J. (1992).
Psychological adjustment to pediatric physical disorders: A metaanalytic
review. Journal of Pediatric Psychology,
17, 133-157.
Manne, S. L., Lesanics, D., Meyers, P., Wollner, N., Steinherz, P.,
& Redd, W. (1995). Predictors of depressive symptomatology
among parents of newly diagnosed children with cancer. Journal of
Pediatric Psychology, 20,
491-510.
McEvoy, R. E. (1990). A study of the relationship between family characteristics and child competence in children with chronic renal disease. Doctoral dissertation, University of Houston, 1990. Dissertation Abstracts International, 51, 455.
Mehta, M., Bagga, A., Pande, P., Bajaj, G., & Srivastava, R. N. (1995). Behavior problems in nephrotic syndrome. Indian Pediatrics: Journal of the Indian Academy of Pediatrics, 32, 1281-1286.
Minuchin, S. (1974). Families and family therapy. Cambridge, MA: Harvard University Press.
Moos, R. H., & Moos, B. S. (1994). Family Environment Scale manual. 3rd ed. Palo Alto: Consulting Psychologists Press, Inc.
Northam, E., Anderson, P., Adler, R., Werther, G., & Warne, G.
(1996). Psychosocial and family functioning in children with
insulin-dependent diabetes at diagnosis and one year later. Journal
of Pediatric Psychology, 21,
699-717.
Perrin, E. C., Stein, R. E., & Drotar, D. (1991).
Cautions in using the Child Behavior Checklist: Observations based on research
about children with a chronic illness. Journal of Pediatric
Psychology, 16,
411-421.
Schweitzer, J. B., & Hobbs, S. A. (1995). Renal and liver disease: End-stage and transplantation issues. In M. C. Roberts (Ed.), Handbook of pediatric psychology (pp. 425-445). New York: Guilford.
Soliday, E., Grey, S., & Lande, M. B. (1999).
Behavioral effects of corticosteroids in steroid-sensitive nephrotic syndrome.
Pediatrics, 104,
1-4.
Suedfeld, P., & Pennebaker J. W. (1997). Health
outcomes and cognitive aspects of recalled negative life events.
Psychosomatic Medicine, 59,
172-177.
Vance, J. C., & Pless, I. B. (1983). The effect of chronic nephrotic syndrome on the affected child. Developmental and Behavioral Pediatrics, 4, 159-162.
Wallander, J. L., Varni, J. W., Babani, L., Banis, H. T., &
Wilcox, K. T. (1988). Children with chronic physical disorders:
Maternal reports of their psychological adjustment. Journal of
Pediatric Psychology, 13,
197-212.
Warshaw, B. L. (1994). Nephrotic syndrome in children. Pediatric Annals, 23, 495-503.[ISI][Medline]
Wassner, S. J. (1994). Conservative management of chronic renal insufficiency. In M. A. Holliday, T. M. Barratt, & E. D. Avner (Eds.), Pediatric nephrology (pp. 1314-1338). Baltimore: Williams & Wilkins.
Wyatt, R. J., Kagy, L., & Kritchevsky, S. B. (1996). Epidemiology of pediatric kidney diseases. Pediatric Annals, 25, 288-296.[ISI][Medline]
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