Allocation of family responsibility for illness management in pediatric HIV

Objective The purpose of the study is to describe allocationof responsibility for illness management in families of childrenand adolescents perinatally infected with HIV. Methods Atotal of 123 youth (ages 8–18) and caregivers completedfamily responsibility and medication adherence questionnairesas part of a substudy of Pediatric AIDS Clinical Trials Groupprotocol 219c. Results Approximately one-fourth ofthe youth reported being fully responsible for taking medications.A smaller percentage of caregivers reported full youth responsibility.Older youth and caregivers of older youth reported higher degreeof youth responsibility for medication-related tasks, thoughage was unrelated to adherence. Caregiver report of greaterresponsibility for medications was associated with better adherence. Conclusions Caregiversare likely to transition responsibility for HIV care to olderyouth but this transition was not always successful as evidencedby poor medication adherence. Interventions supporting successfultransition may improve adherence and subsequently health outcomesin pediatric HIV.     

Peer rejection, social behavior, and psychological adjustment in children with juvenile rheumatic disease

Objective To examine the associations among disease status,social competence, and depressive symptoms in children withjuvenile rheumatic disease (JRD) and to test the hypothesisthat individual differences in children's social competenceaccount for a significant proportion of variance in depressivesymptoms after controlling for disease status variables. Method Thirty-sixchildren with JRD completed standardized instruments to assesspain, health status, and depressive symptoms. The rheumatologistcompleted a disease severity measure, and teachers providedratings of peer rejection and social behavior. Results Pain,peer rejection, and problematic social behavior were all positivelyassociated with depressive symptoms. Social variables remainedsignificantly associated with depressive symptoms after controllingfor level of pain. In addition, peer rejection moderated theassociation between pain and depressive symptoms, such thatchildren with high levels of pain and high levels of peer rejectionreported the highest frequency of depressive symptoms. Conclusions Healthcare providers should assess the social functioning of childrenwith JRD in order to identify socially vulnerable children whomay be at increased risk for internalizing problems.     

Parent quality of life in the context of pediatric inflammatory bowel disease

Objective To describe the quality of life (QoL) of parentsof youth with inflammatory bowel disease (IBD) and examine youthdisease activity (DA) and youth QoL as predictors of parentQoL. Methods Forty-nine youth with IBD (ages 10–18)and a parent completed measures of demographics, parent QoL,and youth QoL. Youth DA ratings were obtained from medical records. Results ParentalQoL was higher in several domains compared to the normativesample, with the greatest differences reported in physical functioningdomains. Although patient demographic factors did not explainsignificant variance in parent QoL, greater DA was associatedwith lower parent QoL in mental health (MH) and physical health(PH) domains. Higher youth QoL was associated with higher parentQoL in the MH domain only. Conclusions Although asa group parental QoL was high, when youth are experiencing diseaseexacerbations or impaired QoL, parents may benefit from assessmentand support.     

Predictors of youth diabetes care behaviors and metabolic control: a structural equation modeling approach

OBJECTIVE: To empirically test a biopsychosocial model of predictors of youth diabetes care behaviors and metabolic control. METHODS: A cross-sectional multisite study of youths (N = 222) with T1D (mean age = 12.6) used structural equation modeling to examine interrelations among predictors, with follow-up analyses of covariance (ANCOVAs). RESULTS: Youths' memory skills related to diabetes knowledge which, along with self-efficacy and age, was associated with greater youth responsibility that in turn predicted poorer self-care behaviors. Less frequent/briefer exercise and less frequent blood glucose monitoring/eating were found; the latter directly related to poorer metabolic control. Behavior problems also were associated directly with poorer metabolic control. A parsimonious model found memory directly related to blood glucose testing. CONCLUSIONS: Continued parental supervision of adolescents, along with monitoring diabetes knowledge and efficacy, may help optimize transfer of diabetes care from parents to youths. Behavior problems warrant immediate attention because of their direct and adverse relation to metabolic control.     

Sleep difficulties in infants at risk for developmental delays: a longitudinal study

Objectives We compared the sleep of infants at risk forneuromotor delays to that of infants without such risks, andexamined the predictive validity of risk indicators to the developmentof sleep problems. Methods Conveniently recruitedinfants (n = 142) were assessed for neuromotor achievementsand sleep behaviors at 4–6 months and 10–12 monthsof age. Assessment tools were the Harris Infant Neuromotor Testand Morrell's Infant Sleep Questionnaire. Based on a cumulativerisk index, three groups were defined: higher risk (n = 28),lower risk (n = 42), and no risk (n = 72). Results Atboth ages, the sleep scores were similar among the groups. Inthe no risk and lower risk group, sleep difficulties decreasedwith age, while for infants in the higher risk group, more difficultieswere reported over time. Overall, the neuromotor attainmentswere not related to sleep fragmentation or settling difficulties. Conclusions Ina diverse sample of infants, with and without risks for developmentaldelays, overall, sleep patterns were similar. It appears thatthe neuromotor achievements are not associated with sleep-wakeregulation, as measured by caregivers’ report.     

Predictors of diabetes-related quality of life after transitioning to the insulin pump

Objective To examine family and individual psychosocial,medical, and demographic factors associated with improved diabetes-relatedquality of life (QOL) after transitioning to the insulin pumpamong youth with type 1 diabetes. Method Fifty-three parent–childdyads completed questionnaires on four occasions prior to andfollowing this medical regimen change, assessing QOL, familyenvironment, depressive and anxiety symptoms, and medical anddemographic information. Trajectories of change in QOL wereanalyzed using multilevel modeling. Result Psychosocial,medical, and demographic characteristics were associated withQOL prior to pump-start. Elements of children's QOL significantlyimproved after the transition, and improvement was predictedby psychosocial, medical, and demographic characteristics. ConclusionResults indicate that individual and contextual factors mayplay a role in QOL as children transition to the insulin pump.Findings may guide efforts to support families through thischallenging time and potentially inform candidacy for transitionto the pump.     

The role of autonomy and pubertal status in understanding age differences in maternal involvement in diabetes responsibility across adolescence

OBJECTIVE: To examine how autonomy and pubertal status explain age decreases in maternal involvement in type 1 diabetes management across adolescence, how they relate to metabolic control, and the reasons that guide declines in maternal involvement. METHODS: One hundred twenty-seven children ages 10-15 years with type 1 diabetes and their mothers participated. Data included maternal and child report of diabetes management, child report of autonomy level, maternal report of pubertal status, maternal reports of reasons for transfer of diabetes responsibility, and glycosylated hemoglobin (Hba(1c)) values. RESULTS: Autonomy and pubertal status partially mediated age effects on reports of maternal involvement. Mothers' reasons for transferring responsibility included responding to the child's competence, promoting competence and maturity in their child, and minimizing hassles and conflict. The transfer of diabetes responsibility from mother to child without sufficient autonomy and when pubertal status was low was related to higher Hba(1c) values. CONCLUSIONS: The importance of chronological age for changes in maternal involvement suggests the need to examine mothers' and adolescents' developmental expectations for diabetes management. The reasons for transferring responsibility from mother to child suggest many avenues for intervention.     

Impact of family environment and support on adherence,metabolic control,and quality of life in adolescents with diabetes

Background: Diabetes is a common disease in pediatric populations. Family functioning has been related to child adaptation to diabetes. Purpose: To determine the impact of family factors on diabetes, particularly the influence of family support and family environment on adherence to treatment, quality of life, and metabolic control in Portuguese adolescents with type 1 diabetes, taking in consideration age, sex, duration of disease, and social class. Method: This study used a cross-sectional design. A sample of 157 Portuguese diabetic patients filled disease-specific measures on adherence and quality of life and family functioning measures. Hypotheses were that family support and an organized family environment (high cohesion and low conflict) would be positively associated with better adherence, metabolic control, and quality of life. Results: This study’s results confirmed that adherence was predicted by family support for females and lower-class patients while metabolic control was predicted by family conflict for upper-class patients. Quality of life was predicted by lack of family conflict and family social support for both males and females as well as lower-class patients. Conclusion: The results highlight the importance of studying family variables in adolescents’ diabetes care within the wider cultural factors affecting the patient.     

Anxiety and somatic complaints in children with recurrent abdominal pain and anxiety disorders

Objective To compare anxiety symptoms and disorders inchildren and adolescents with recurrent abdominal pain (RAP),anxiety disorders, and healthy control children. Methods Twenty-onechildren with RAP (nine males, mean age = 11.05) were comparedto 21 children with anxiety disorders (11 males, mean age =12.29), and 21 children without pain or anxiety (nine males,mean age = 11.57) using diagnostic interviews and continuousmeasures of anxiety and other internalizing symptoms. Results Sixty-sevenpercent of children with RAP met criteria for an anxiety disorder.Children with RAP were higher than well children but not significantlydifferent from children with anxiety on total internalizingand anxiety symptoms. Conclusions RAP and anxietyare closely related. Further understanding between these disordersis essential to understanding the development and progressionof RAP, and to inform the prevention and treatment of the disorder.     

Primary care supports for children with chronic health conditions: identifying and predicting unmet family needs

Objective To examine unmet needs among families of childrenwith chronic health conditions treated in primary care settingsand to identify predictors of these needs. Method Primarycare physicians referred 83 caregivers of children with chronichealth conditions. Mothers completed the Family Needs Survey,as well as other measures of child and family functioning. Results Mothersreported a high prevalence and broad range of unmet family needs.The most frequent area of need was for information about servicesand ways to promote child health and development. Predictorsof total number of family needs included demographic characteristics,ratings of social support, and appraisals of family burden.Predictors of specific types of family needs varied accordingto category of need. Conclusions Innovative psychosocialintervention programs are needed in primary care settings toreduce family needs and promote child health. More intensivefamily supports may be indicated for those with minority-groupor low socioeconomic status, limited social support, or highperceived burden.     

A hopelessness model of depressive symptoms in youth with epilepsy

Objective To test the cognitive diathesis-stress and mediationalcomponents of the theory of learned hopelessness in youth withepilepsy. Methods Seventy-seven participants ages 9–17(35 girls, 42 boys) completed measures of depressive symptoms,hopelessness, self-efficacy for seizure management, and attitudetoward epilepsy. Caregivers provided information on seizureactivity. Diagnostic and treatment information was obtainedvia medical record review. Results Regression analyses revealedthat hopelessness mediated the attitude towards epilepsy–depressivesymptom relationship. While attitude toward epilepsy and self-efficacywere independent predictors of depressive symptoms, the relationshipof attitudes toward epilepsy and depressive symptoms was notenhanced with low self-efficacy for seizure management. ConclusionsFindings support the mediation component of the learned hopelessnesstheory in youth with epilepsy, suggesting the importance ofinterventions that assist youth in identifying epilepsy-relatedaspects of functioning over which they can realistically exercisecontrol and challenging negative thoughts about situations theycannot control.     

Infants' and toddlers' remembering and forgetting of a stressful medical procedure

Objective To examine whether a distressing medical procedureleaves lasting impressions in young children's memories. Methods Children12- to 78-weeks old (N = 172) received inhalation treatmentthrough a face mask or underwent other interventions at a pediatricemergency department. They were randomized to be presented withneutral cues and cues from the inhalation 1 week or 6 monthsafter the target event. Children's reactions at cue presentationwere scored from videotapes. Results Across the agespan tested, children treated with inhalation showed higherdistress than controls when presented with cues from inhalation1 week, but not 6 months after target treatment. Conclusions Stressduring medical procedures in preverbal children may developas a result of prior experience of such procedures. These memoriestypically seem to fade within 6 months.     

Diabetes management and glycemic control in youth with type 1 diabetes: test of a predictive model

The objective of this study was to test a comprehensive model of biologic (pubertal status), family (communication and conflict), and psychological influences (behavioral autonomy) on diabetes management and glycemic control in a sample of youth (N = 226) with type 1 diabetes recruited during late childhood/early adolescence (ages 9–11 years). The study design was a prospective, multisite, multi-method study involving prediction of diabetes management and glycemic control 1 year post-baseline. The primary outcome measures included diabetes management behaviors based on the Diabetes Self-Management Profile (DSMP) administered separately to mothers and youth and glycemic control measured by glycated hemoglobin (HbA1c) obtained by blood samples and analyzed by a central laboratory to ensure standardization. Our hypothesized predictive model received partial support based on structural equation modeling analyses. Family conflict predicted less adequate glycemic control 1 year later (p < 0.05). Higher conflict predicted less adequate diabetes management and less adequate glycemic control. More advanced pubertal status also predicted less adequate glycemic control, but behavioral autonomy did not. Family conflict is an important, potentially clinically significant influence on glycemic control that should be considered in primary and secondary prevention in the management of type 1 diabetes in youth.     

Reducing secondhand smoke exposure among children and adolescents: emerging issues for intervening with medically at-risk youth

Objective To summarize information on rates of secondhandsmoke (SHS) exposure among healthy and medically at-risk pediatricpopulations, discusses the clinical manifestations of pediatricdisease that are exacerbated by exposure, and provide an overviewof promising strategies for reducing SHS in vulnerable pediatricpopulations. Methods The success of exposure reductionand smoking cessation interventions implemented with parentsof healthy children and those with respiratory disease, in thecontext of their child's health care, is reviewed. Results Concurrentimplementation of multiple levels of intervention, includingclinical interventions within the medical setting, will helpto maximize the reduction in childhood SHS exposure. Conclusion Ongoingintervention research and identification of strategies to capitalizeon opportunities for providing effective SHS counseling in primarycare and specialty clinics will be critical for effective tobaccocontrol among medically at-risk children.     

Exploring the relationship between diabetes self-efficacy,depressive symptoms,and glycemic control among men and women with type 2 diabetes

Depression and low self-efficacy are both associated with worse glycemic control in adults with diabetes, but the relationship between these variables is poorly understood. We conducted a cross-sectional study examining associations between depressive symptoms, self-efficacy, and glycemic control among men (n = 64) and women (n = 98) with type 2 diabetes to see if self-efficacy mediates the relationship between depression and glycemic control. Correlational and mediational analyses examined the relationship between these three variables for the sample as a whole and separately by sex. A significant association between depressive symptoms and glycemic control was found for men (0.34, P < 0.01) but not for women (0.05, P = 0.59). Path analysis suggested that, among men, self-efficacy mediates the relationship between depressive symptoms and glycemic control. We conclude that men with depressive symptoms and type 2 diabetes may need tailored interventions that improve their self-efficacy in order to achieve glycemic control.     

Impaired health-related quality of life in caregivers of youth seeking obesity treatment

Objective To document and identify predictors of caregiverhealth-related quality of life (HRQOL) in a sample of youthseeking obesity treatment and examine whether it moderates therelation between parent proxy and youth self-report HRQOL. Methods Youth(5–18 years) and their caregivers (N = 120) presentingto a pediatric medical weight management program completed thePediatric Quality of Life Inventory^TM and caregivers completedthe Short-Form 36. Results Caregivers were predominantlyoverweight/obese (90%) and half were African-American. CaregiverHRQOL was lower than "healthy" adults, similar to nontreatment-seekingadults with obesity, and better than treatment-seeking adultswith obesity. Caregiver body mass index and socioeconomic statuspredicted caregiver physical HRQOL. Caregiver age predictedcaregiver mental HRQOL. A moderation effect was not detected. Conclusions Giventhe significant degree of overweight and HRQOL impairment incaregivers of youth seeking obesity treatment, further examinationof caregiver functioning in the context of pediatric obesitytreatment outcomes is warranted.     

Sleep quality in young adults with very low birth weight--the Helsinki study of very low birth weight adults

Objective To assess the relationship between very low birthweight (VLBW; <1,500 g) and quality and amount of sleep inyoung adults. Methods We compared 89 VLBW and 78 term-born19- to 26-year-old adults, by actigraphy and the Basic NordicSleep Questionnaire. Results There were no group differencesin sleep quality or amount (p's >.15), although VLBW adultswent to bed on average 36 min earlier (95% confidence interval6–66 min). Shorter gestational age was related to longersleep latency both within VLBW (standardized regression coefficientβ = –.36, p =.040) and term-born adults (β =–.25, p =.029). Conclusion Adults with VLBWhad similar quality and amount of sleep as those born at term,although VLBW adults went to bed earlier, suggesting an advancedsleep phase. Within each group, a lower gestational age wasrelated to a longer sleep onset.     

Effect of peers and friends on youth physical activity and motivation to be physically active

Objective To test whether the presence of a peer or a friendincreases the motivation to be physically active in overweightand non-overweight youth in a laboratory setting. Methods Youthmotivation to be physically active as a function of the socialcontext was measured using a computerized relative reinforcingvalue task to earn points exchangeable for physical and/or sedentaryactivities. Results The presence of a friend (p<.001)increased youth's; motivation to be physically active. The presenceof a peer increased overweight youth's; motivation to be physicallyactive, whereas this was not the case for lean youth (p=.47).Participants biked a greater distance in the presence of a friendthan when alone (p<.001). Overweight youth biked a greaterdistance in the presence of a peer than when alone, while thiswas not the case for lean youth (p=.23). Conclusions Friendshipsmay increase youth's; motivation to engage in physical activityand promote greater physical activity in non-overweight andoverweight youth.     

Web survey of sleep problems associated with early-onset bipolar spectrum disorders

Objective As research on sleep difficulties associatedwith Early-Onset Bipolar Spectrum Disorders (EBSD) is limited,a web-based survey was developed to further explore these problems. Methods 494parents of 4-to-12 year-olds, identified by parents as beingdiagnosed with EBSD, completed a web survey about past and currentEBSD-related sleep problems. The survey included Children'sSleep Habits Questionnaire (CSHQ) items and sleep problems fromthe International Classification of Sleep Disorders 2nd edition. Results Nearlyall parents reported some type of past or current EBSD-sleepproblem. Most occurred during a worst mood period, particularlywith mixed manic-depressive symptoms. Symptoms caused impairmentsat home, school, or with peers in 96.9% of the sample and acrossall three contexts in 64.0% of children. Sleep problems werealso noted after three-day weekends and Spring and Fall DaylightSavings time changes. Conclusions Findings, studylimitations, and implications for treatment and etiology arediscussed.     

Personality predicts quality of life in pediatric patients with unintentional injuries: a 1-year follow-up study

Objective Few studies have charted the course of health-relatedquality of life (HRQoL) in pediatric injury patients, and nostudies so far have examined the extent to which variationsin HRQoL 1 month and 1 year after injury are influenced by thechild’s personality. Method One hundred and seven pediatricinjury victims (6–14 years old) completed an interviewon HRQoL and were rated on the personality domains of the Five-FactorModel by their mothers 1 month and 1 year after the incident.Results HRQoL was compromised after 1 month, particularly inthe physical domain, but improved significantly after 1 year.Lower HRQoL after 1 month was predicted by female gender, injuryseverity, functional status, and neuroticism. After 1 year,lower HRQoL was predicted by concurrent functional status andneuroticism. Conclusions Even if HRQoL in children with unintentionalinjuries returns to normal levels after 1 year, significantvariations remain, which are in part explained by personality.