Observational Behavioral Coding in the Pediatric Emergency Department: Development of the Emergency Department Child Behavior Coding System.

BACKGROUND: Despite improvements over the past decade, children continue to experience significant pain and distress surrounding invasive procedures in the emergency department (ED). To assess the impact of newly developed interventions, we must create more reliable and valid behavioral assessment tools that have been validated for the unique settings of pediatric EDs. OBJECTIVE: This study aimed to create and test the Emergency Department Child Behavior Coding System (ED-CBCS) for the assessment of child distress and nondistress behaviors surrounding pediatric ED procedures. METHODS: Via an iterative process, a multidisciplinary expert panel developed the ED-CBCS, an advanced time-based behavioral coding measure. Inter-rater reliability and concurrent validity were examined using 38 videos of children aged from 2 to 12 years undergoing laceration procedures. Face, Legs, Activity, Cry, Consolability (FLACC) scale scores were used to examine concurrent validity. RESULTS: The final ED-CBCS included 27 child distress and nondistress behaviors. Time-unit κ values from 0.64 to 0.98 and event alignment κ values from 0.62 to 1.00 indicated good to excellent inter-rater reliability for all but one of the individual codes. ED-CBCS distress (B = 1.26; p < 0.001) and nondistress behaviors (B = -0.69, p = 0.025) were independently significantly associated with FLACC scores, indicating concurrent validity. CONCLUSIONS: We developed a psychometrically sound tool tailored for pediatric ED procedures. Future work could use this measure to better identify behavioral targets and test the effects of interventions to relieve pediatric ED pain and distress.

A Systematic Review of Relationships Between Illness Identity and Health-Related Outcomes in Individuals with Chronic Illnesses.

The aim of the current systematic review is to examine relationships among illness identity and illness-specific variables, adherence, and health-related outcomes. Studies were included if they (a) presented quantitative data on illness identity's relationship with adherence or health-related outcomes, (b) included chronic medical illness samples, (c) were peer-reviewed, and (d) were available in English. PubMed and EBSCOhost were searched. Quality was evaluated using the EPHPP Tool. Twelve papers were included. Moderate evidence supports the relationship between engulfment, enrichment, and illness complexity. Moderate evidence supports relationships between multiple identities and adherence as well as with various health-related outcomes. There is somewhat consistent evidence for associations between engulfment and negative health-related outcomes. It may be important to inform healthcare providers of possible identity challenges that patients face and their associations with adherence and health-related outcomes. Routine illness identity screening may allow for identification of individuals who would benefit from increased support.

The influence of child pain catastrophizing and parent behavior on health-related quality of life in pediatric sickle cell disease.

BACKGROUND: Literature suggests that a child's appraisal of pain and parent responses to pain are critical in predicting health-related outcomes. In youth with sickle cell disease (SCD), few investigations have examined child pain catastrophizing, and even fewer have examined the role that parents play in responding to SCD pain within the family context. The purpose of the current study was to examine the relationship between pain catastrophizing, parent response to child SCD pain, and health-related quality of life (HRQoL). PROCEDURE: The sample (N = 100) included youth with SCD (ages 8-18) and their parent. Parents completed a demographic questionnaire and the Adult Responses to Child Pain Symptoms; youth completed the Pain Catastrophizing Scale and Pediatric Quality of Life Inventory-SCD Module. RESULTS: Findings indicated that pain catastrophizing, parent minimization, and parent encouragement/monitoring significantly predicted HRQoL. Minimizing and encouragement/monitoring parent responses moderated the relationship between pain catastrophizing and HRQoL, such that parent minimizing weakened the relationship and parent encouragement/monitoring strengthened the relationship. CONCLUSIONS: Paralleling pediatric chronic pain literature, findings suggest that pain catastrophizing predicts HRQoL in youth with SCD. However, findings from moderation analyses diverge from the chronic pain literature; data suggest that encouragement/monitoring responses strengthen the negative relationship between child pain catastrophizing and HRQoL. Child pain catastrophizing and parent response to SCD pain may be appropriate targets for clinical intervention to improve HRQoL. Future studies should strive to better understand parent responses to SCD pain.

Sleep Problems in Pediatric Disorders of Gut-Brain Interaction: A Systematic Review.

OBJECTIVE: Disorders of gut-brain interaction (DGBIs) are common, and findings are mixed on rates of sleep problems (e.g., sleep quality) in pediatric populations. A clear understanding of sleep problems in pediatric DGBIs is needed as sleep challenges might negatively impact symptoms and prognoses. The aims of this systematic review are to (1) describe the prevalence and types of sleep problems in pediatric patients with DGBIs and examine differences by DGBI diagnosis and (2) examine the relationship among sleep problems and pain, mood, and functional outcomes in pediatric patients with DGBIs. METHODS: We searched PubMed, PsycInfo, CINAHL, and Medline in June 2022; articles were included if they enrolled ≤19 years old with a DGBI, used a quantitative assessment of sleep problems, and were available in English. The Effective Public Health Practice Project Quality Assessment Tool for Quantitative Studies was used to assess study quality. We used a protocol to systematically pull and tabulate data across articles with quality assessment ratings. RESULTS: Twenty-four articles with 110,864 participants across 9 countries were included, with most studies being of moderate to weak quality. Patients with DGBIs reported more sleep problems than healthy peers, and some research reviewed found that patients with IBS had more sleep problems than other DGBI diagnoses. Sleep problems in DGBIs were related to worse mood, pain, and functional outcomes. CONCLUSION: Pediatric patients with DGBIs are experiencing sleep problems that can impact outcomes. Screening for sleep problems and targeted treatment is needed to best support these patients.

Social Support in Parents of Children With Cancer: A Systematic Review.

OBJECTIVES: Parents of children with cancer (PCCs) experience stress as they navigate managing their child's illness. Arguably, social support is critical to PCCs' well-being. This review examines the literature on social support in PCCs. METHODS: Studies of social support in PCCs were collected from PsycINFO, CINHAL, and MEDLINE. Data were extracted from 37 studies published between January 2010 and May 2021 related to the conceptualization, measurement, and availability of social support in PCCs. Relationships between PCCs' social support, well-being, and unique parent and child factors were also synthesized. Risks of biases were assessed using domains of the Effective Public Health Practice Project. RESULTS: Social support in PCCs is conceptualized as (a) perceived availability and satisfaction with social support and (b) social support seeking as a coping strategy. Parents of children with cancer report receiving as much or more support than typical adults, but PCCs engage in less social support seeking. Family and significant others are the most prevalent sources of support, and emotional support is the most received type of social support. Social support is positively related to well-being and negatively related to distress, anxiety, and posttraumatic stress. Findings related to social support differences based on parent and child unique factors were minimal and present opportunities for future research. The risk of bias was generally low, with caution that most studies cannot demonstrate directionality of findings due to cross-sectional study designs. CONCLUSIONS: Given the consistent positive association between social support and well-being in PCCs, clinicians should assess and encourage social support for this vulnerable population.

Pandemic-Related Social Disruption and Well-Being in Pediatric Gastrointestinal Diseases.

OBJECTIVE: The coronavirus disease 2019 (COVID-19) pandemic has impacted everyone, but there are few data regarding how the pandemic has influenced the lives of children with gastrointestinal (GI) conditions. This cross-sectional study assessed pandemic-related social disruption (PRSD) in children with inflammatory bowel disease (IBD), celiac disease (CD), and irritable bowel syndrome (IBS), and the potential buffering effect of the parent-child relationship. METHODS: A survey completed between September and December 2020 asked 146 children (ages 8-17) diagnosed with IBD (n = 44), CD (n = 81), or IBS (n = 51) and 185 parents how the pandemic has contributed to social disruption (i.e., financial stability, COVID-19 exposure, school changes, GI needs, and isolation) and their social-emotional well-being. Structural equation modeling was used to examine the role of social disruption on well-being, and the moderating effect of the parent-child relationship. RESULTS: Increased social disruption predicted worse parent, ß = 0.24, p = .02, and child well-being, ß = 0.38, p < .01. The parent-child relationship moderated the relationship between parent and child well-being, ß = 0.21, p = .03. Strong parent-child relationships predicted a positive association between parent and child well-being, ß = 0.23, p = .003, whereas medium, ß = 0.09, p = .14, and poor, ß = -0.06, p = .52, relationships did not. CONCLUSIONS: PRSD negatively impacted the well-being of children with GI conditions, and the parent-child relationship moderated this relationship. These findings are relevant to pediatric psychologists treating the physical and mental health needs of children with GI conditions and their parents.

The distinct longitudinal impact of pain catastrophizing on pain interference among youth living with sickle cell disease and chronic pain.

Youth living with chronic sickle cell disease (SCD) pain are at risk for psychosocial distress and high levels of pain catastrophizing that contribute to functional impairment. This study aimed to identify the unique long-term impact of pain catastrophizing on pain impairment among youth with SCD. Youth with chronic SCD pain (N = 63, 10-18 years old, 58.3% female, 95.1% Black or African American) were recruited within comprehensive SCD clinics and completed a battery of measures at baseline and 4-months follow-up. A linear hierarchical regression examined baseline demographic and clinical characteristics (child SCD genotype, age, and average pain intensity), psychosocial functioning (anxiety, depression), and pain catastrophizing as predictors of pain interference at 4-months follow-up. Pain catastrophizing was the only unique predictor of pain interference at 4-months follow-up. Among youth with chronic SCD pain, pain catastrophizing warrants greater consideration as an important predictor that influences pain management and overall functioning.

Behavioral Strategies to Minimize Procedural Distress During In-Office Pediatric Tympanostomy Tube Placement Without Sedation or Restraint.

The purpose of this study was to evaluate behavioral strategies to minimize procedural distress associated with in-office tympanostomy tube placement for children without general anesthesia, sedation, or papoose-board restraints. 120 6-month- to 4-year-olds and 102 5- to 12-year-olds were treated at 16 otolaryngology practices. Mean age of children was 4.7 years old (SD = 3.18 years), with more boys (58.1%) than girls (41.9%). The cohort included 14% Hispanic or Latinx, 84.2% White, 12.6% Black, 1.8% Asian and 4.1% 'Other' race and ethnicity classifications. The in-office tube placement procedure included local anesthesia via lidocaine/epinephrine iontophoresis and tube placement using an integrated and automated myringotomy and tube delivery system. Behavioral strategies were used to minimize procedural distress. Anxiolytics, sedation, or papoose board were not used. Pain was measured via the faces pain scale-revised (FPS-R) self-reported by the children ages 5 through 12 years. Independent coders supervised by a psychologist completed the face, legs, activity, cry, consolability (FLACC) behavior observational rating scale to quantify children's distress. Mean FPS-R score for tube placement was 3.30, in the "mild' pain range, and decreased to 1.69 at 5-min post-procedure. Mean tube placement FLACC score was 4.0 (out of a maximum score of 10) for children ages 6 months to 4 years and was 0.4 for children age 5-12 years. Mean FLACC score 3-min post-tube placement was 1.3 for children ages 6 months to 4 years and was 0.2 for children age 5-12 years. FLACC scores were inversely correlated with age, with older children displaying lower distress. The iontophoresis, tube delivery system and behavioral program were associated with generally low behavioral distress. These data suggest that pediatric tympanostomy and tube placement can be achieved in the outpatient setting without anxiolytics, sedatives, or mechanical restraints.

Biopsychosocial Factors Associated with Parenting Stress in Pediatric Sickle Cell Disease.

Caregivers of children with sickle cell disease (SCD) experience significant physical and emotional hardship with their child's disease management. Little is known about the potential contributors to parenting stress in pediatric SCD. The present study aimed to identify child and caregiver biopsychosocial factors associated with disease-related parenting stress in pediatric SCD. Participants included 74 caregiver-youth dyads. Parenting stress was associated with increased child pain frequency, more missed school days, and increased healthcare utilization, and inversely correlated with caregiver mental health and social-emotional functioning. Parenting stress also partially explained the relationship between child pain frequency and healthcare utilization after controlling for parent depression and anxiety. Parenting stress may play a unique and critical role in pediatric SCD and underscore the impact parenting stress may have on youth in medical and academic settings. Further research is warranted to determine risk factors and appropriate interventions for parenting stress to improve comprehensive patient care.

Psychosocial risk and health care utilization in pediatric sickle cell disease.

INTRODUCTION: Pain and complications related to pediatric sickle cell disease (SCD) are associated with higher health care utilization. In other pediatric chronic conditions, psychosocial screening can help identify children and families at risk of increased health care utilization to guide resource allocation, address treatment needs, and improve care. This study aimed to investigate the utility of psychosocial screening in predicting increased health care utilization among youth with SCD. METHODS: Youth with SCD (n = 74, 8-18 years) and their parents were recruited from comprehensive SCD clinics. Parents completed the Psychosocial Assessment Tool (PAT), which categorized family psychosocial risk into one of three categories: Universal (minimal distress), Targeted (elevated distress), and Clinical (persistent distress). Youth reported on their pain characteristics, and health care utilization was extracted from medical chart review. Differences in health care utilization were evaluated using analysis of variance (ANOVA) and moderation analyses. RESULTS: Based on PAT risk, families were categorized into Universal (56.8%), Targeted (29.7%), and Clinical (13.5%) risk groups, with no significant group differences across demographic variables. Patients in the Targeted group reported significantly higher pain frequency than those in the Universal group (F[2, 66] = 3.7, p < .05). The association between pain frequency and health care utilization significantly varied on the basis of psychosocial risk, such that Clinical psychosocial risk strengthened the connection between pain frequency and health care utilization (ß = .2, t = 2.1, p < .05). CONCLUSIONS: Integrating the PAT into routine clinical care may help health care providers identify families in need of greater psychosocial or medical support to further optimize SCD management.

Pain and QOL in Pediatric Sickle Cell Disease: Buffering by Resilience Processes.

OBJECTIVE: Sickle cell disease (SCD) is a group of inherited blood disorders. The central feature of this chronic condition is pain. Several identified risk factors exacerbate the impact of pain on quality of life (QOL) in SCD; however, there are relatively fewer investigations of strengths-based resilience variables that might buffer the influence of pain on living with SCD. The purpose of this study was to examine strength-based resilience processes in youth with SCD and their parents. Grounded in an ecological resilience-risk model, we evaluated whether adolescent and parent protective factors (pain acceptance, mindfulness, and psychological flexibility) moderated the relation between adolescent-reported pain burden and QOL. METHODS: Ninety-three 12- to 18-year-old adolescents with SCD and their parents participated. Adolescents completed assessments of pain characteristics, pain acceptance, mindfulness, and QOL. Parents completed instruments measuring demographic and disease variables and parent psychological flexibility. RESULTS: Pain variables were associated with protective factors in predicted directions. Adolescent acceptance and mindfulness were positively correlated with QOL. Parent psychological flexibility and adolescent QOL were not related. After controlling for demographic, pain, and disease variables, moderation analyses indicated that adolescent pain acceptance buffered the relation between SCD pain burden and QOL. Moderation analyses were not significant for adolescent mindfulness or parent psychological flexibility. CONCLUSIONS: Results suggest that strengths-based factors may play an important role for adolescents' QOL within the context of SCD pain. Interventions that enhance teenagers' ability to accept pain might be particularly useful to improve QOL in adolescents living with SCD pain.

Parental Psychosocial Distress in Pediatric Sickle Cell Disease and Chronic Pain.

BACKGROUND: Pediatric sickle cell disease (SCD) management can result in considerable caregiver distress. Parents of youth with chronic SCD pain may face the additional challenge of managing children's chronic pain and chronic illness. This study examined associations between parent psychological distress and child functioning and the moderating role of chronic pain among youth with SCD. METHODS: Youth presenting to pediatric outpatient comprehensive SCD clinics and their primary caregivers completed a battery of questionnaires. Parents reported on parenting stress, parent mental and physical health, and family functioning. Children completed measures of pain characteristics, depressive symptoms, catastrophic thinking, functional disability, and quality of life. RESULTS: Patients (N = 73, Mage = 14.2 years, 57% female) and their caregivers (Mage = 41.1 years, 88% mothers, 88% Black) participated. Worse parent functioning was associated with worse child pain, functioning, quality of life, and depressive symptoms. Beyond the effects of SCD, chronic SCD pain magnified the negative associations between parenting stress frequency and child quality of life, parent physical health and child quality of life, and parent depressive symptoms and child depressive symptoms. CONCLUSIONS: Chronic pain may exacerbate the relations between parent and child functioning beyond the effects of SCD alone. The management of both SCD and chronic pain may present additional challenges for parents that limit their psychosocial functioning. Family-focused interventions to support parents and youth with chronic SCD pain are warranted to optimize health outcomes.

Pica in Pediatric Sickle Cell Disease.

Pica is the developmentally inappropriate consumption of non-nutritive items for at least one month. Pica can lead to many adverse outcomes, but the exact pathophysiology of pica is unknown or variable across populations. Several studies have evidenced that there is a high prevalence of pica among youth with sickle cell disease (SCD). However, the lack of knowledge regarding the correlates of pica contributes to overlooking the condition, inaccurate diagnoses, and a lack of evidence-based treatments once pica is identified. This review examines the literature to develop a biopsychosocial model of pica in SCD. Elucidating the potential relationships among the proposed biological, psychological, and social factors, and pica will inform our understanding of this phenomenon in pediatric SCD and may guide future research and clinical recommendations.

A Systematic Review of Medication Adherence Interventions in Pediatric Sickle Cell Disease.

OBJECTIVE: Adherence to medication regimens is of critical importance in sickle cell disease (SCD). Most notably, data indicate that hydroxyurea, penicillin, and iron chelators increase life expectancy and decrease comorbid medical problems (e.g., strokes). However, average pediatric SCD adherence rates are only 55-74%. Studies have introduced interventions for pediatric SCD adherence, but no review has synthesized these data. METHODS: We conducted a systematic review of interventions for enhancing medication adherence in pediatric SCD. There were 9 studies that met inclusion and exclusion criteria. The Pediatric Self-Management Model provided a framework for organizing the modifiable factors targeted by existing interventions. RESULTS: The 9 studies had high risk of bias levels and most targeted hydroxyurea. All studies used multiple measures of adherence, the interventions were multicomponent, and most included behavioral or technological interventions. There was variability in terms of whether the intervention targeted the individual, family, community, or healthcare system. CONCLUSIONS: Consistent with the broader adherence literature, targeting knowledge alone was insufficient in increasing adherence. Findings suggest that reminders and targeting self-efficacy were key to success. In addition, addressing multiple domains in an intervention yielded larger effects on adherence. Although these results are promising, this review highlights several limitations of the extant literature, including a paucity of intervention studies and several methodological weaknesses, such as small sample sizes, few randomized controlled trials, and variable measures of adherence. Recommendations for advancing scientific understanding of adherence promoting interventions in pediatric SCD are provided.

Topical Review: State of the Field of Child Self-Report of Acute Pain.

OBJECTIVE: Children experience acute pain with routine and emergent healthcare, and untreated pain can lead to a range of repercussions. Assessment is vital to diagnosing and treating acute pain. Given the internal nature of pain, self-report is predominant. This topical review reflects on the state of the field of pediatric acute pain self-report, and proposes a framework for acute pain assessment via self-report. METHOD: We examine self-report of acute pain in preschool-age children through adolescents, and we detail a three-step process to optimize acute pain assessment. RESULTS: The first step is to decide between a pain screening or assessment. Several 0-10 self-report scales are available for pain screenings. Assessment requires specification of the goals and domains to target. Core criteria, common features, modulating factors, and consequences of acute pain provide a framework for a comprehensive pain assessment. Whereas there are some measures available to assess aspects of these domains, there are considerable gaps. Last, it is important to integrate the data to guide clinical care of acute pain. CONCLUSIONS: Self-report of acute pain is dominated by single-item intensity scales, which are useful for pain screening but inadequate for pain assessment. We propose a three-step approach to acute pain assessment in children. However, there is a need for measure development for a comprehensive evaluation of the core criteria, common features, modulating factors, and consequences of pediatric acute pain. In addition, there is limited guidance in merging data found in multifaceted evaluations of pediatric acute pain.

Racism and Health-Related Quality of Life in Pediatric Sickle Cell Disease: Roles of Depression and Support.

INTRODUCTIONS: Sickle cell disease (SCD) is the most commonly inherited blood disorder in the United States, and it predominately affects the Black community. SCD is characterized by a number of symptoms, including unpredictable pain, which can lead to hospitalizations. Data indicate that people with SCD experience racism and ample data indicate that racism predicts depressive symptoms and impaired health-related quality of life (HRQOL). In contrast, research suggests that social support might buffer the impact of racism on depression. The aim of this study was to explore associations among perceived racism, depressive symptoms, and HRQOL in adolescents with SCD. Consistent with the literature, it was predicted that perceived racism would predict HRQOL through depression, and social support would moderate the negative impact of racism on depression. METHODS: In a cross-sectional design, 75 inpatient adolescents with SCD completed measures of perceived racism, depressive symptoms, HRQOL, and social support. RESULTS: This results indicated a moderated mediation model with greater perceived racism predicting more depressive symptoms, which in turn related to poorer HRQOL; greater access to social support from individuals with SCD strengthened the perceived racism-depressive symptom association. CONCLUSIONS: Findings suggest a model for how racism, depressive symptoms, HRQOL, and social support might interact in hospitalized adolescents with SCD. Longitudinal or experimental designs are needed to substantiate directionality among these variables. Results highlight several areas for future research and clinical avenues to improve the welfare of youth with SCD.

Illness-Related Parenting Stress and Maladjustment in Congenital Heart Disease: Mindfulness as a Moderator.

OBJECTIVE: Congenital heart disease (CHD) is characterized by structural defects to the heart or the coronary blood vessels and often requires surgical repair. Raising an infant or toddler with CHD can be challenging and lead to high parenting stress and maladjustment. The parenting literature suggests that mindfulness may buffer parenting stress. The purpose of this study was to examine whether mindfulness might moderate the relationship between illness-related parenting stress and maladjustment in parents of infants and toddlers with CHD. METHODS: Parents of infants and toddlers with CHD attending an outpatient clinic provided background information and completed measures of illness-related parenting stress, mindfulness, and maladjustment. RESULTS: Results indicated that illness-related parenting stress was associated with maladjustment, and mindfulness moderated this relationship. Specifically, illness-related parenting stress was related to maladjustment at low and average levels of mindfulness; at high mindfulness, there was no association between illness-related parenting stress and maladjustment. CONCLUSIONS: Consistent with the broader literatures, our sample of parents of infants and toddlers with CHD reported high illness-related parenting stress and maladjustment. Building on other studies demonstrating the benefits of mindful parenting, our results suggest that engaging in mindfulness might thwart the association between illness-related parenting stress and maladjustment in parents of infants and toddlers with CHD.

Pediatric pain screening identifies youth at risk of chronic pain in sickle cell disease.

BACKGROUND: This study aimed to evaluate the preliminary validation and application of a pain screening tool to identify biopsychosocial risk factors for chronic pain in pediatric sickle cell disease (SCD) and classify youth with SCD into prognostic risk groups. METHOD: Youth presenting to a pediatric SCD clinic completed the Pediatric Pain Screening Tool (PPST), a brief 9-item self-report questionnaire developed for rapid identification of risk in youth with pain complaints. Youth also completed a battery of standardized patient-reported outcomes, including pain characteristics, pain burden, functional disability, pain interference, depressive symptoms, pain catastrophizing, and fear of pain. Healthcare utilization was extracted from medical chart review. RESULTS: Seventy-three 8- to 18-year-olds (94% Black, 57% female) with SCD participated. The PPST demonstrated discriminant validity that ranged from fair to excellent (area under the curves (AUC) = 0.74-0.93, P values < 0.001) for identifying significant pain frequency, disability, pain interference, and psychosocial distress. Receiver operating characteristic curve analyses indicated that previously established cutoff scores were appropriate for the SCD sample. Participants were classified into low-risk (28.8%), medium-risk (38.4%), and high-risk (32.9%) groups, with significant group differences across measures, F(18, 116) = 6.67, P < 0.001. The high-risk group reported significantly higher pain intensity, pain frequency, pain burden, functional disability, pain interference, and depressive symptoms relative to both low-risk and medium-risk groups (P values < 0.005). CONCLUSIONS: The high-risk group demonstrated a pain and psychosocial profile consistent with chronic SCD pain. The PPST may be useful for efficiently identifying youth with chronic SCD pain or those at risk of poor outcomes.

Emotion-Focused Avoidance Coping Mediates the Association Between Pain and Health-Related Quality of Life in Children With Sickle Cell Disease.

Sickle cell disease (SCD) is associated with pain and decreased health-related quality of life (HRQOL). Coping strategies influence pain but have not been evaluated as mediating the relation between pain and HRQOL in pediatric SCD. The current study examined whether pain-related coping mediates the association between pain and HRQOL in children and adolescents with SCD. In total, 104 children and adolescents 8 to 18 years of age (Mage=12.93 y) with SCD attending outpatient clinics completed pain intensity, HRQOL, and pain-related coping measures. Multiple mediation analyses were used to examine whether pain-related coping mediated the pain and HRQOL relation and whether types of coping (ie, approach, emotion-focused avoidance, problem-focused avoidance) were independent mediators. Total indirect effects for models examining physical and psychosocial HRQOL were not significant. After controlling for covariates, emotion-focused avoidance significantly mediated the association between pain and physical HRQOL (effect: -0.023; bootstrapped SE: 0.018; 95% confidence interval: -0.0751, -0.0003) but not the pain and psychosocial HRQOL relation. Approach and problem-focused avoidance were not significant mediators. Coping with pain in pediatric SCD is an important avenue for clinical intervention and additional research. Among children with SCD reporting high pain intensity, interventions should emphasize negative impacts of emotion-focused avoidance coping and integrate other empirically supported coping strategies to improve HRQOL.

Parenting Stress, Sleep, and Psychological Adjustment in Parents of Infants and Toddlers With Congenital Heart Disease.

OBJECTIVE: Parents of children with chronic medical needs report increased parenting challenges, poor sleep, and maladjustment. The impact of parenting stress on both sleep and adjustment has yet to be evaluated for parents of infants and young children with congenital heart disease (CHD). We studied the relations among parenting stress, sleep, and adjustment in parents of infants and toddlers with CHD. We expected that sleep quality would mediate the relationship between parenting stress and adjustment. METHODS: Sixty-nine parents of infants and toddlers with CHD were evaluated on self-report measures of illness-related parenting stress (Pediatric Inventory for Parents), sleep (Pittsburgh Sleep Quality Index), and psychological adjustment (Brief Symptom Index-18). RESULTS: The parents of infants and toddlers with CHD reported elevated levels of parenting stress, sleep problems, and maladjustment. The positive relationship between parenting stress and parent maladjustment was mediated by sleep quality. CONCLUSIONS: Findings suggest that parents of infants and toddlers with CHD report high parenting stress, poor sleep, and maladjustment. Analyses indicate the stress-adjustment relationship is mediated by quality of sleep. Given the multiple demands on parents of infants and children with CHD, it is important to attend to parents' overall functioning and mental health. Our findings highlight targets for intervention to improve the well-being of parents of young children with CHD.