Hope, Coping, and Adjustment Among Children with Sickle Cell Disease: Tests of Mediator and Moderator Models

Tested mediator and moderator models of hope, coping, and adjustmentin 39 children with sickle cell disease. In home interviewsparents provided information on demographics and functionaladjustment. Children self-reported levels of hope, coping strategies,and psychological adjustment. Coping strategies moderated, butdid not mediate, the relationship between hope and adjustment.Hope was negatively associated with anxiety when active coping,support coping, and distraction coping was high. Avoidance copingdid not moderate the hope-adjustment relationship but was positivelyrelated to anxiety. No effects were found for depressive symptomsor for the functional measures of adjustment.     

Family Influences on Coping Processes in Children and Adolescents with Sickle Cell Disease

Examined the contribution of parenting and family variablesto the general coping processes of 39 children and adolescentswith sickle cell disease (SCD). In home interviews, parentsreported on their child's health history, the coping suggestionsthey make to their children, their own coping strategies, andfamily cohesion. Children rated their general coping strategiesand level of hope. Partial support was obtained for each ofthe three models of family influences tested in this study.After accounting for the effects of age, gender, family structure,and type of SCD, children's hope was positively associated withactive coping suggestions by parents. Children's active copingwas associated with a cohesive family environment, and avoidancecoping was predicted by less parental use of restructuring coping,and greater parental use of active coping strategies. Takentogether, this study provides evidence for the influence ofparental coaching and modeling and the family environment oncoping processes in children with SCD.     

Psychosocial Adjustment in Children and Adolescents with Sickle Cell Disease

This study investigated the degree to which the stress of chronicillness impacted on adjustment of a sample of 50 children andadolescents with sickle cell disease. The sample was selectedfrom patients seen in a Sickle Cell Center over an extendedperiod of time, with symptoms ranging from mild to severe. Thecharacteristics of the illness in terms of perceived pain, hospitalizations,and emergency room visits was evaluated, as well as the natureof presenting symptoms and levels of adjustment. Results indicatedthat there were problems in a range of adjustment variables,particularly for adolescent males, and most significantly inthe areas of behavior problems and social adjustment. The implicationsfor adaptive coping with adolescent developmental processeswere noted.     

Psychological Adjustment of Adolescents With Sickle Cell Disease: Relations With Demographic, Medical, and Family Competence Variables

Objective: Investigate the hypothesis that family competencein addressing challenges associated with sickle cell disease(SCD) contributes to adolescents' adjustment. Method: During routine clinic appointments, 80 adolescents (Mage = 14·4 years) and their parents independently completedthe Self-Report Family Inventory (SFI), which assesses familycompetence, and measures of adolescent adjustment problems.Information related to disease severity was obtained from clinicfiles. Results: Regression analyses controlling for demographic andmedical variables revealed that higher family competence wasassociated with fewer internalizing and externalizing behaviorsby the adolescent; these relations were particularly true foryounger adolescents and for girls. Parental reports of somaticcomplaints in girls were predicted by parental ratings of familycompetence. Discussion: Interventions for adolescents with SCD should befamily-centered and should focus on strengthening the family'sability to manage stressors associated with parenting an adolescentwith a chronic illness.     

Psychological Adaptation and Adjustment of Mothers of Children With Congenital Heart Disease: Stress, Coping, and Family Functioning

Objective: Investigate support for the transactional stressand coping model for mothers of children with congenital heartdefects, in accounting for the variance in maternal adjustment. Methods: Participants were 52 mothers of children recruitedfrom a university medical center. Measures included illnessvariables, cognitive processes (i.e., appraisals of stress,expectations, methods of coping, family functioning, and maternalpsychological adjustment). Results: Maternal adjustment was associated with high levelsof daily stress and palliative coping techniques and was notsignificantly associated with severity of the cardiac defect.Together, the variables of the model accounted for approximately38% of the variance in maternal adjustment. Conclusions: The findings are in accord with previous researchamong other chronically ill populations in suggesting an associationbetween stress, coping, and maternal adjustment. Within thelimitations of the study, the data were interpreted to supportthe utility of theoretical models in identifying areas in needof intervention across chronic illness groups.     

Relation Between Severity of Chronic Illness and Adjustment in Children and Adolescents With Sickle Cell Disease

Tested the relationship between illness severity and adjustmentin 70 sickle cell patients, aged 8–16. Illness severitywas measured by frequency of hospitalization and emergency roomvisits, frequency and intensity of pain crises, and durationof illness. Adjustment variables were IQ, self-esteem, socialand personal adjustment, behavioral problems, school performance,and peer relations. Medical variables–associated illnesspatterns and type of hemoglobinopathy–were also considered.Sex and age were covariates. The hypothesis that illness severitywould affect adjustment was generally not supported. Other factorssuch as SES, family structure, or support systems may affectadjustment and suppress the hypothesized relationship. The needfor a more global intervention approach than using illness severityto measure need for psychotherapeutic assistance is suggested.     

Psychological Adjustment of Children with Sickle Cell Anemia

The psychological adjustment of 30 children with sickle cellanemia (ages 6–16) was evaluated and compared to a groupsof 30 healthy control subjects who attended a family medicalclinic for routine health problems. As expected, the groupsdiffered on several measures related to medical problems (e.g.,number of clinic visits, medication intake, and length of illness).However, no group differences emerged regarding psychologicalproblems. Behavioral problems were found for both groups whentheir scores were compared to the normative samples for variouspsychological measures. Thus, the children of both groups werefound to have more behavioral problems than the normative samples.Since the groups were equivalent in terms of low socioeconomicstatus (SES), it was suggested that the hypothesized maladjustmentof children with sickle cell anemia is more likely to be a resultof the generally low SES of these black children rather thana result of the illness of sickle cell anemia.     

Sickle Cell Disease Pain in Children and Adolescents: Change in Pain Frequency and Coping Strategies Over Time

Examined 9-month follow-up data obtained from children and adolescentswith sickle cell disease (SCD) and their parents participatingin a longitudinal study of pain coping strategies. Of 87 subjectscompleting the baseline assessment of pain coping strategies,70 (80%) of their parents completed a structured pain interviewassessing their child's health care use and activity reductionduring painful episodes over the follow-up period. Regressionanalyses controlling for age and pain frequency revealed thatbaseline Coping Attempts were associated with higher levelsof school, household, and social activity during painful episodes.Baseline Passive Adherence was associated with more frequenthealth care contacts during the subsequent 9 months. Increasesin Negative Thinking over time were associated with furtherincreases in health care contacts during the follow-up period.Comparing pain coping strategies assessed at baseline to paincoping strategies measured at follow-up revealed that pain copingstrategies were relatively stable over time for younger childrenbut changed more for adolescents.     

Temperament, Coping, and Psychological Adjustment in Young Children with Myelomeningocele

The psychosocial factors that increase the risk of psychologicalproblems among children with myelomeningocele are not well delineated.In this study, the parents of 34 children (18 boys, 16 girls)with myelomeningocele who were between the ages of 3 and 8 yearscompleted questionnaires describing the child's temperament,coping ability, and level of family cohesiveness and familyorganization. Total behavior problem scores on the Child BehaviorChecklist were associated with lower levels of family cohesiveness,lower self-coping ability, greater temperament difficulty, andlower distractibility. Regression analyses with each variableentered separately indicated that distractibility and self-copingability accounted for 57% of the variance in total behaviorproblem scores and 52% of the variance in externalizing problemscores. Temperamental difficulty and distractibility accountedfor 44% of the variance in internalizing problem scores. Whencombined coping and temperamental difficulty variables wereentered into regression analysis, family cohesiveness also wasassociated with total behavior problems and internalizing problems.     

Negative Thinking as a Coping Strategy Mediator of Pain and Internalizing Symptoms in Adolescents with Sickle Cell Disease

The objective of this study was to examine the role of coping strategies, specifically negative thinking, in mediating the association of pain with symptoms of anxiety and depression in adolescents with sickle cell disease. Fifty-two 12-18-year-old adolescents with sickle cell disease completed a daily pain diary and paper-and-pencil measures of pain, pain coping, depression and anxiety. Symptoms of depression and anxiety were within the non-clinical range. Preliminary analyses indicated that lower family income was associated with higher reports of pain and negative thinking. Mediation regression analyses supported negative thinking as mediating the association of: (1) pain intensity with depression, and (2) pain interference with daily activities with anxiety. Findings highlight negative thinking as a factor compromising adolescents' adaptation to sickle cell pain; however, further investigation is required to determine the mediating influence of pain coping. Associations for lower income emphasize the multiple risk factors experienced by many of these adolescents.