Journal of Pediatric Psychology, Vol. 27, No. 5, 2002, pp. 475-484
© 2002 Society of Pediatric Psychology
Parent Factors and Adolescent Sickle Cell Disease: Associations With Patterns of Health Service Use
The Children's Hospital of Philadelphia
All correspondence should be sent to Deirdre Logan, Department of Psychology, Children's Hospital of Philadelphia, 3405 Civic Center Blvd, Philadelphia, Pennsylvania 19104. Email: logan{at}email.chop.edu .
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Abstract |
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Objective: To examine relationships among parent characteristics (parent-adolescent relationship, parents' illness knowledge, and parents' perceptions of illness-related burden) and use of routine and urgent health services among adolescents with sickle cell disease (SCD).
Method: Seventy adolescents, ages 12-18, and their parents completed questionnaires assessing illness knowledge, perceptions of illness burden, parent-adolescent relationships, and adolescents' psychological functioning. Information about pain, routine services (i.e., care at home, clinic visits) and urgent service use (i.e., emergency department visits, hospitalizations) was obtained from parents and medical records.
Results: After we controlled for disease severity and life events, parents' perception of more illness-related stress was the strongest predictor of both types of service use. Greater parental knowledge about SCD also related to higher frequency of routine service use. Disease severity was strongly associated with frequency of urgent service use.
Conclusions: Both parent characteristics and disease severity were associated with patterns of service use. Enhancing aspects of parental functioning may help families make adaptive decisions regarding health care services for SCD pain management.
Key words: adolescent; sickle cell disease; parenting.
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Introduction |
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Sickle cell disease (SCD) is a group of genetic hematological disorders involving compromised hemoglobin production. The most common physical manifestations of SCD are painful vaso-occlusive episodes, dehydration, and delayed growth and sexual maturation. Long-term and severe complications can include chronic anemia, pneumococcal infections, organ failure, and cerebral vascular accidents. For some youths, pain crises and other sequelae of SCD constitute a serious disruption in their lives and the lives of family members (Lemanek, Buckloh, Woods, & Butler, 1995
). Although some common symptoms of SCD can be managed at
home, medical intervention is required for more severe episodes
(Armstrong, Lemanek, Pegelow, Gonzalez,
& Martinez, 1993).
Among individuals with SCD, adolescence emerges as a time of heightened
challenges to adaptation (e.g., Brown et
al., 1993) and increased awareness of limitations and the
implications of the illness on future functioning
(Hurtig, 1994;
Walco & Dampier, 1987).
Walco and Dampier assert that lifelong patterns of unmanageable pain and
overuse of medical services often begin in adolescence and may arise from
disease-related obstacles to achieving developmental goals of mastery and
independence. It is therefore crucial to understand the influences on pain and
service use at this stage of development, to facilitate healthier adjustment
to the illness and appropriate use of medical services for pain management
throughtout the lifespan.
By identifying alterable psychosocial characteristics that link to the ways
families cope with SCD and make decisions about treatment, we can begin to
plan interventions aimed at increasing adaptive patterns of service use within
this population. In investigating health service use, one must note that
definitions of "adaptive" use of services may differ across
cultures and socioeconomic status (SES) levels
(Bush & Ianotti, 1990;
Hill, 1995), as well as with
disease characteristics. However, it is generally accepted that frequent
visits to the emergency department, the hematology acute care unit or other
urgent care centers for pain management, and frequent or long hospital stays,
are relatively undesirable patterns. Attendance at scheduled clinic
appointments for routine care and management of less critical pain symptoms at
home are usually viewed as markers of adaptive service use (e.g.,
Gil, Abrams, Phillips, & Williams,
1992; Reese & Smith,
1997).
Among adolescents with SCD, parents often take the first step
toward—or away from—medical services
(Bush & Ianotti, 1990).
Parental perceptions of aspects of the disease, such as perceived pain levels,
have been connected to the frequency or quantity of services used by youths
(Gil et al., 1992), but few
studies have examined links between parent characteristics and use of health
services (Kunkel, Rackoff, Katolik, &
Ohene-Frempong, 1994). In accordance with the call for a more
strength-oriented approach to psychological adjustment among this population
(e.g., Telfair, 1994), we
adopt the risk-resistance-adaptation model (e.g.,
Wallander, Varni, Babani, Banis, &
Wilcox, 1989). This model, which has been applied previously to
the pediatric SCD population (Brown,
Doepke, & Kaslow, 1993), posits that risk factors (i.e.,
disease/disability factors, functional independence, psychosocial stressors)
and resistance factors (i.e., stress processing skills intra-personal
resources, social-ecological factors) predict individual adaptation to chronic
illness.
In applying Wallander's model to our study, we construed adaptation exclusively in terms of health service use. The study focused specifically on social-ecological assets, namely, those related to parents and the parent-adolescent relationship. We attempt to expand the existing research base by examining connections between parent factors and health service use. The parent characteristics included in this study have all been shown to relate to disease management or health outcomes among youths with SCD.
Parents' Perceptions of Burden Created by Illness
Caring for an adolescent with a chronic illness adds considerable stress
and responsibility to the challenges of parenting. Depending on the
availability of social support, resources, intrapersonal factors, and other
variables, individuals are likely to perceive varying amounts of burden in
response to similar illness demands. Among youths with SCD, heightened
perceptions of burden by parents have been shown to relate to poor
psychological functioning and negative health outcomes (e.g.,
Telfair, 1994;
Wallander et al., 1989).
Parents' Knowledge of the Disease
Parents who understand their child's illness and feel competent in managing
basic care responsibilities are more likely to facilitate adjustment to the
disease, compared to parents who are uninvolved in their child's care or
overwhelmed by the complexities of the illness (Evans, Burlew, & Older,
1998). It is reported anecdotally that increased parental knowledge of SCD is
associated with better psychological functioning (e.g.,
Evans et al., 1988), more
positive parent-child relationships
(Hurtig, 1994), and better
disease management (Hill,
1995).
Qualities of the Parent-Adolescent Relationship
Some aspects of the parent-adolescent relationship have been linked to
level of family lifestyle disruption created by the disease. Influential
aspects include parental coping or problem solving (e.g.,
Armstrong et al., 1993), the
degree of family warmth and expressiveness (e.g.,
Hurtig, 1994), and
parent-adolescent communication (e.g.,
Hurtig, 1994;
Thompson, Gil, Burbach, Keith, &
Kinney, 1993).
The primary aim of the study was to examine associations among disease severity, parent factors, and patterns of service use in a group of adolescents with sickle cell disease. Within this aim were three specific hypotheses: (1) increased parental stress about adolescents' health would relate to higher frequency of health service use; (2) more positive parent-adolescent relationships would be associated with greater use of routine services and less frequent use of urgent services and (3) parents with more accurate knowledge of SCD would be more likely to use routine services and less likely to rely on urgent services. Because adolescence is a key time to establish patterns of service use that may persist through the lifespan, this study represents an important step in understanding how to promote adaptive patterns of service use at this crucial stage.
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Method |
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Participants
Participants were recruited during visits to the outpatient clinic at a comprehensive sickle cell center within an urban academic pediatric institution, in accordance with procedures approved by the institutional review board of the hospital. All visits were routine checkups (scheduled every 3-6 months based on disease severity) or nonurgent problem-focused appointments scheduled in advance. Families with an adolescent 12-18 years old who had a diagnosis of SCD were eligible to participate. Exclusionary criteria included (1) inability to comprehend English, (2) severe cognitive impairment, or (3) presence of another chronic illness that might confound the findings related to SCD. Two families failed to meet eligibility criteria (one due to the presence of cerebral palsy in the adolescent, the other to a non-English-speaking mother). The participation rate among eligible families approached for the study was 94.6%.
Seventy adolescents and their parents completed the study. Of these adolescents, 54.3% were male. Mean age was 14.5 years (SD = 1.4). Most participants, 94.3%, were African American. The remaining 5.7% identified themselves as "other" and were primarily of Caribbean or biracial decent. Participants ranged along the socioeconomic spectrum, with the median family income at $25,000-$49,999 per year. Caregivers who participated in the study were mothers in 72.9% of the cases, fathers in 17.1% of the cases, grandparents in 4.3% of the cases, and another primary caretaker in 5.7% of the cases. The median level of education for respondents was "some college or vocational school." Two-parent families (married/partnered) comprised 43.5% of the sample. In 21.7% of families, parents were divorced or separated, 8.7% of families contained a parent who was widowed, and 26.1% were never married.
Procedures
Families were approached in the waiting area at the hematology clinic.
Parental consent and adolescent consent/assent was obtained before
administering measures. The first author and two trained graduate student
research assistants conducted all interviews.
Measures
General Information Form. In addition to information regarding
adolescents' age, gender, ethnicity, family structure, and SES, this
questionnaire obtained parent reports of the frequency of various types of
health services. Only service use for pain-related symptoms was recorded.
Pediatric Inventory for Parents (PIP; Streisand, Branieki, Tercyak,
& Kazak, 2001). The PIP is a 42-item self-report that measures parent
stress related to adolescent illness in four domains: (1) communication with
adolescent and medical team (e.g., speaking with doctors), (2) emotional
distress (e.g., learning upsetting news), (3) medical care (e.g., making
decisions about medical care or medicines), and (4) role function (e.g.,
attending to the needs of other family members). Each item is rated on two
5-point Likert-type scales. The first assesses frequency of each stressor; the
second scale assesses how difficult this issue has been for the parent.
Parents are asked to consider the last week when responding to each item.
Frequency and difficulty scores are calculated for each of the domains and for
the total scale. Domain alpha coefficients are all above.80, with total scale
score alpha coefficients of.82 (frequency) and.89 (difficulty) for the study
sample. The PIP correlates significantly with state anxiety measured by the
State-Trait Anxiety Inventory (Spielberger, 1983), as reported by Streisand et
al. (2001).
Sickle Cell Disease Knowledge Questionnaire (SCDKQ;
Armstrong & Lemanek,
1993). This parent self-report contains 20 true-false
statements about SCD. The questionnaire has been used in past studies of SCD
(Armstrong et al., 1993) and
was created by presenting potential questions to pediatric hematology staff.
Content areas include etiology, clinical manifestations, and medical
management. The measure has demonstrated validity and contains neither floor
nor ceiling effects related to knowledge
(Armstrong et al., 1993). The
SCDKQ had low interitem consistency in this sample (KR-20 interitem
consistency coefficient =.45) but was used because it incorporated several
important areas of disease knowledge. The adolescent knowledge version was not
included in this study, given the study's focus on parent characteristics.
Parent Adolescent Relationship Questionnaire (PARQ;
Robin, Koepke, & Moye,
1990). Selected subscales from the parent report version of
this questionnaire were used in this study. The research literature on family
functioning among adolescents with SCD informed the study authors' selection
of the Global Distress, Communication, Problem Solving, and Warmth/Hostility
subscales. The abbreviated parent form contains 83 statements, all in
true/false format. The measure has been shown to distinguish among families
classified as "distressed" versus "nondistressed"
(based on clinical interview) versus a normative group not categorized by
distress level (Robin et al.,
1990). Subscales are orthogonal (with each item counted toward
only one subscale score), thus permitting a total score to represent the
degree of distress across subscales. In this study, the measure yielded a
coefficient alpha of.91.
Stressful Life Events Questionnaire (adapted from
Attar, Guerra & Tolan,
1994). This questionnaire measures parents' stress arising
from sources other than the adolescents' illness. The questionnaire is a
17-item, broad-based measure that inquires about potential family stressors
such as the death of a family member, moving to a new home, and so on. The
original measure was worded for child self-report and was adapted for this
study to ask parents about family experiences (e.g., "Did your child
change where he or she went to school?"). The measure has been shown to
be a reliable method of assessing stressful life events
(Attar et al., 1994).
Behavioral Assessment System for Children (BASC; Reynolds & Kamphaus, 1992). The adolescent self-report version of the BASC provided a general measure of adolescent psychosocial functioning to be used as a covariate in the data analyses. Adolescents endorse 4-point Likert-type scale ratings in response to questions about behaviors and emotions. The overall clinical adjustment score is used in this study. Validity scales are built into the BASC questionnaire in order to detect response patterns indicating random responding or social desirability influences. For analyses involving BASC scores, participants with clearly invalid profiles (e.g., high social desirability scores, high "lie" scale scores) were excluded from analyses; four participants' scores were excluded from analysis due to invalid profiles. According to Reynolds and Kamphaus, the measure possesses concurrent validity and good test-retest reliability. The alpha coefficient for this sample for the clinical maladjustment scale items was.91.
Chart Review Data. In addition to questionnaires administered
directly to the parent and adolescent, data collection also entailed a review
of the adolescent's medical chart for hospital-based service use and disease
severity data. The first author collected all chart data related to service
use. Although completely blind review was not possible, attempts were made to
minimize rater bias by obscuring patient identity on the medical charts. Chart
review was used to obtain information regarding number of clinic visits, use
of the emergency department, and number and length of hospitalizations.
Disease phenotype (i.e., hemoglobin SS, hemoglobin SC, or thalessemia) was
noted. Information was collected from the 12-month period preceding the
interview based on clinic visit summaries, in-patient discharge records, and
emergency department reports. Only single ratings of chart data were obtained,
but parent report of these services for the past year was also collected,
although not used in analyses. These ratings correlated significantly (for
frequency of emergency department visits, Kendall's 
=.47, p
<.001; for hospital admissions =.52, p <.001; and for
clinic visits =.23, p <.05).
Finally, physician (KSW) ratings of disease severity were obtained via
chart review. Disease severity scores were based on the past 3 years.
Participants were coded "severe" if they had a history of stroke,
an average of two or more pain crises per year, and/or an average of one or
more acute chest syndrome episodes per year. They were classified as
"moderate" if they did not meet severe criteria but had recurrent
priapism (abnormal painful erections of the penis) requiring intervention, at
least two episodes of acute chest syndrome in the past 3 years, an average of
one pain crisis per year, and were considered "high risk" patients
when requiring routine transcranial doppler scans, had organ damage secondary
to SCD, and/or had a supplemental oxygen requirement. The remaining patients
were classified as mild. The system was developed for this study and
represents a more thorough classification than typical severity ratings for
SCD, which are generally based only on frequency of pain crises (cf.
Schnog et al., 1998). No
established validity or reliability criteria exist for this rating system, but
it is theoretically based. Attempts were made to obscure patient identifying
information.
Interrater reliability for severity ratings was calculated on 40% of the
sample (n = 28). The kappa coefficient of.70 indicated good
reliability between two raters. Although disease phenotype correlates with
disease severity at the population level, disease severity on a case-by-case
basis is influenced by many different factors and does not necessarily
correspond to phenotype (e.g., Odenheimer,
Whitten, Rucknagel, Sarnaik, & Sing, 1983). Given the
relatively small sample included in this study, the physician ratings of
severity therefore serve as a more appropriate indicator of SCD severity.
Data Analysis
The effects of the psychosocial measures on health service use were
examined through linear regression models. Predictor variables were (1)
perceived parenting stress, (2) parent knowledge of SCD, and (3) perceived
quality of the parent-adolescent relationship. Chart review data were used as
the primary source of information for the service use outcome variables, with
parent report data used for routine services not recorded in the medical chart
(i.e., giving care at home and seeking information). Only one source of
information was used for each type of service use (i.e., chart data for
hospital-based services, parent data for the two home-based categories not
reliably reported in the chart). Frequencies of health services categorized as
routine (i.e., clinic visits, calls to clinic, care at home, seeking
information) were summed to form a sole outcome variable representing routine
service use. Frequencies of health services categorized as urgent (i.e.,
emergency department and acute care unit use, hospitalizations) similarly were
summed to form a sole outcome variable representing urgent service use.
Separate multivariate regression models were developed for routine and urgent
service use. Age, gender, family status, family income, relationship of
reporting parent, and disease severity were examined for potential inclusion
as covariates in the multivariate models. None of the demographic variables
was correlated with either of the outcome variables (see
Table I), so for the sake of
model parsimony, these variables were not included in the multivariate
analyses.
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Results |
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Descriptive Information
See Table I for intercorrelations among variables. Regarding disease type and severity, 68.2% of the adolescents had a diagnosis of SS, 21.2% had a diagnosis of SC, and 10.6% had a diagnosis of sickle beta thalessemia. Chi-square analysis shows that the sample did not differ significantly from the overall clinic population of adolescent patients with respect to expected frequencies of disease type. According to physician ratings of current disease severity, 58.8% of the participants had mild disease, 17.6% had moderate disease, and 23.5% had severe disease. Physician severity ratings did not correlate significantly with disease phenotype (r =.10, ns).
Service Use. Descriptive information regarding health service use is reported in Figure 1. Urgent and routine service use were not significantly correlated with each other (r =.08, ns).
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Predictor Variables. Table II provides descriptive information on each predictor variable. The PIP subscales were highly correlated with the total scores (r =.79-.85 for frequency subscales; r =.87-.95 for difficulty subscales; all significant at p <.001). Thus, it was deemed acceptable to use PIP total scores in the multivariate analyses to preserve model parsimony in this small sample. Additionally, because of the very strong relationship between the PIP frequency and difficulty total scores (r =.90), only one of these two scores was included in multivariate analyses. The research literature on stress and coping highlights the relative importance of frequency of stressors over intensity (cf. Kanner, Coyne, Schaefer, & Lazarus, 1980), so the stress-frequency variable was retained in the multivariate model. Similarly, the subscales of the PARQ were highly intercorrelated, and all subscales correlated very highly with the summary score (r =.65-.89, all significant at p <.001), so the summary score was used as the primary indicator of parent-adolescent relationship distress in the multivariate analyses.
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Patterns of Routine Service Use. Hierarchical multivariate regression models were constructed to examine the combined effects of the predictor variables on routine service use. Our control variables, disease severity, significant life events, and clinical maladjustment, were entered as a block on Step 1 of the model, followed by the parent variables, which were entered as a block on Step 2. Results of the multivariate model including disease severity, life events, clinical maladjustment, frequency of illness-related stress, greater SCD knowledge, and parents' perceptions of the parent-adolescent relationship are provided in Table III. The addition of the parent variables to the model significantly improves the model with the control variables only.
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In the model predicting routine service use, frequency of illness-related stress accounted for the largest individual portion of variance in service use (partial r =.41). Greater parental knowledge of sickle cell disease also accounted for a significant portion of the variance in the multivariate model (partial r =.35). Parent report of the parent-adolescent relationship did not make a significant individual contribution to the multivariate model. The hypothesized covariates—disease severity, stressful life events, and adolescent clinical maladjustment—were not significant predictors of routine service. Adding the set of parent variables to the regression improved the fit of the model significantly, F change = 7.8, p <.001.
Patterns of Urgent Service Use. A second multivariate regression model was constructed to examine the effects of the predictor variables on patterns of urgent service use. Disease severity, life events, and clinical maladjustment were entered as a block at Step 1 of the model, followed by frequency of illness-related stress, parent knowledge of SCD, and parents' perceptions of the parent-adolescent relationship, which were entered as a block on Step 2. See Table IV for full results.
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Disease severity accounted for the largest portion of variance in the model (partial r =.39). Neither significant life events nor clinical maladjustment predicted urgent service use. Of the parent characteristics, frequency of illness-related stress was again a significant predictor of service use (partial r =.39). Greater parental knowledge of SCD did not predict urgent service use in the context of the multivariate model. Parent-adolescent relationship distress showed a trend-level negative relationship with urgent service use (i.e., higher distress related to less service use). This appears to be a suppression effect, as it is only obtained when controlling for clinical maladjustment (which correlates significantly with parent-adolescent relationship distress; r =.34, p <.01). The parent characteristics as a set resulted in a statistically significant improvement over the Step 1 model, F change = 4.6, p <.01.
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Discussion |
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The primary goal of this study was to explore relationships among parent characteristics and patterns of health service use among adolescents with SCD. Taken together, the findings provide support for the hypothesis that parent characteristics are related to patterns of service use among adolescents with SCD. Results reveal that, among the characteristics considered in this study, the stress parents experience in raising an adolescent with SCD emerges as the most robust predictor of health service use. More frequent illness-related stress was associated with increased use of all types of services, both routine and urgent. The correlational design of this study does not allow us to draw definitive conclusions regarding the direction of the relationship between parents' illness-related stress and service use. Increased use of health care services could lead to increases in parental stress; further research is needed to clarify the casual connection between these constructs.
More accurate parental knowledge about SCD also was associated with higher
rates of routine service use. This finding supports previous research showing
that parental knowledge can influence SCD management
(Hill, 1995) and provides more
specific information about how knowledge relates to service use. To an extent,
parents' knowledge may serve a protective function by facilitating greater
reliance on routine disease management versus acute management strategies. Of
note, this sample received treatment at a comprehensive sickle cell center,
where education is emphasized. Families receiving care in other settings may
not be as knowledgeable about SCD. Adolescents' own knowledge about SCD was
not examined in this study due to the focus on parents. From a developmental
perspective, it is likely that many adolescents begin to exert some control
over decisions regarding their use of services. Exploring the role of
adolescent SCD knowledge could broaden our understanding of the family
influences on service use beyond parent characteristics alone.
Contrary to our hypothesis, parent-adolescent relationships did not serve a clear role in predicting health service use when other variables were included in the model. It may be that these relationships were simply too complex or too private to assess fully in our limited contact with participants. As with SCD knowledge, incorporating adolescent perceptions could provide a fuller picture of the role that parent-adolescent relationships play in patterns of service use.
Gender did not appear to affect health service outcomes in this sample.
This is somewhat inconsistent with findings of previous studies (e.g.,
Brown et al.,
1993,Brown et al.,
1993; Lemanek,
1995), which suggest that adolescent males have more difficulty
coping with SCD compared to females. Age also was not significantly related to
outcome variables in the study. Age differences might emerge during the
transition to young adulthood, when many young people begin to assume more
authority in making their own decisions regarding health service use.
Some potentially influential factors were not examined in this study. We did not include information regarding insurance coverage (almost all clinic users had coverage), nor did we examine other possible barriers to services. Additionally, we did not obtain details about family history of SCD. This information would have been useful in understanding how parents responded to adolescents' pain symptoms, since familiarity with SCD and its sequelae likely play key roles in patterns of service use.
Disease severity had little effect on patterns of routine service use. Attending clinic visits, calling with questions, and providing care at home were not directly linked with illness severity in this sample; rather, these behaviors appeared to relate more closely to parent characteristics. Regarding urgent services, disease severity played a larger role in predicting use, but parents' illness-related stress remained an important factor. Physician severity ratings were likely somewhat confounded with the outcome variable of urgent service use, since more medical chart information is available on patients who use more hospital services.
These findings have implications for clinical work with families of adolescents with SCD. Psychologists working with these families should be attuned to parenting stress and the salience this stress can have to families' management of the illness. Clinic staff might consider parents' perceptions of the frequency of illness-related stress in determining how often to schedule clinic visits. Offering call-in services to address questions may help reduce urgent service use. Efforts to bolster parents' illness knowledge are also important, particularly in helping parents to provide appropriate care at home, to ask questions of the health care team when uncertainty regarding pain management arises, and to adhere to scheduled clinic visits.
Several limitations of the study should be noted. Generalizability is limited by the method of recruitment. Because participants had to attend at least a single clinic visit, we missed families who avoid clinic use altogether. We were therefore unable to examine these relationships across the full service-use spectrum (i.e., among families who use only urgent care or who provide all care at home). We were also limited by the use of an assessment battery that could be completed at clinic visits. More thorough interview techniques or multiple measures could lead to more definitive conclusions regarding parent characteristics and patterns of service use.
The outcome variables in our study represent frequencies of service use. Severity and other disease characteristics were incorporated in our analyses, but we did not specifically compare rates of actual service use to rates of recommended use. We also did not obtain multiple ratings of chart data on service use. Future studies could incorporate indicators of recommended rates of service use based on individual disease profiles, the family's ability to manage pain responsibly at home, and so on. Furthermore, we relied on parent reports for some service information and were thus subject to the biases and limitations inherent to this method of data collection.
Finally, a longitudinal, prospective study would provide more reliable information regarding parent characteristics and service use over time and the course of development. Studies incorporating both adolescent and parent characteristics could provide more information about developmental issues, such as how adolescents' attempts to gain independence and autonomy influence patterns of service use. We would also benefit from studies that examine transitions along the developmental trajectory, such as that between adolescence and young adulthood.
This study suggests that parent characteristics can function as
social-ecological resistance factors in the risk-resistance-adaptation model
as applied to adolescents coping with SCD
(Wallander et al., 1989). More
research is needed to determine whether parent characteristics are influential
within the larger context of the risk-resistance-adaptation model. That is,
when multiple risk factors are considered and additional resistance factors
are incorporated, do parent characteristics continue to predict health service
use in ways we consider adaptive? This study begins to address how parent
characteristics and service use may fit into this model, but many questions
remain for future research. As inquiries in this area progress, the ultimate
goal will be to design intervention studies to improve adaptive health care
use.
In conclusion, recent studies lend continued support to the joint
influences of physical and psychosocial factors in understanding families'
adaptation to SCD (Burlew, Telfair,
Colangelo, & Wright, 2000). This study suggests that physical
and psychosocial factors also are jointly linked to utilization of health care
services. Attending to both the medical aspects of SCD and the role of parent
characteristics will allow professionals to collaborate productively with
families, to help families make adaptive decisions about the management of
adolescents' sickle cell disease.
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Acknowledgments |
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We thank the adolescents and parents who participated in this study; Valerie Harwell and Cheryl Olinsky for assistance with data collection; Anne Kazak, PhD, Grayson Holmbeck, PhD, and anonymous reviewers for feedback on earlier versions of this manuscript; and the CHOP Comprehensive Sickle Cell Center faculty and staff, for support of this project.
Received January 10, 2001; revision received May 9, 2001; accepted August 14, 2001
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