How does pain work? A qualitative analysis of how young adults with chronic pain conceptualize the biology of pain.

BACKGROUND: Pain science education (PSE) is commonly integrated into treatments for childhood-onset chronic pain. A core component of PSE is learning about, and often reconceptualizing, the biology of chronic pain. Yet, few interventions have been developed specifically for young adults and little is known about how young adults conceptualize the biology of pain. This study used a qualitative methodology to examine how young adults with childhood-onset chronic pain understand the biology of pain, and the language they use in this meaning-making process, which may inform future interventions tailored to this age group. METHODS: We identified a cohort of young adults with childhood onset chronic pain, and a subset of 17 young adults with continuing chronic pain completed individual, semi-structured interviews. Telephone interviews were audio-recorded, transcribed verbatim and analysed using reflexive thematic analysis. RESULTS: We generated four themes that capture participants' conceptualizations of the biology of pain: (1) Something is wrong with the body, (2) An injury has not healed, (3) Nerves fire when they should not, (4) An overactive stress system. CONCLUSION: These conceptualizations, and the language used by young adults with childhood-onset chronic pain to describe them are discussed. Recommendations are provided for how PSE interventions can be tailored for young adults. SIGNIFICANCE: This study provides new qualitative insights reflecting a variety of ways that young adults with childhood-onset chronic pain conceptualize pain. Some conceptualizations of pain align with modern pain science principles (altered function of nervous and endocrine systems) while others conflict (unhealed injury). Health professionals can use these findings to tailor their pain education interventions by leveraging concepts that 'stick' for youth, being aware of, and interrogating, common misconceptions, and offering language and metaphors familiar to youth.

Healthcare Transition Among Young Adults With Childhood-Onset Chronic Pain: A Mixed Methods Study and Proposed Framework.

Chronic pain extends from childhood to adulthood for many young people. The transition from pediatric to adult care is a critical, yet understudied, healthcare task facing young adults with chronic pain. The aims of this observational, sequential mixed methods study were to 1) document the healthcare transition status of young adults with chronic pain (Stage 1, quantitative aim), 2) examine young adults' perspectives of barriers and facilitators of healthcare transition (Stage 2, qualitative aim), and 3) integrate findings to construct a theoretical framework of healthcare transition. A cohort was identified with childhood chronic pain and prior care in one of 15 multidisciplinary pediatric pain clinics across the United States and Canada. Approximately 6 years later, 189 young adults (M age = 21.0; age range = 18-24; 81.5% female) from this cohort with continuing chronic pain completed surveys for Stage 1, and a subsample (n = 17) completed qualitative interviews for Stage 2. Quantitative findings demonstrated that young adults may experience lapses in care, with 41.8% indicating they had not transitioned to adult pain services. Qualitative analysis revealed young adults experienced significant barriers (eg, abrupt departure from pediatric care) as well as facilitators (eg, acceptance of pain prognosis) of healthcare transition. Quantitative and qualitative findings were integrated to construct a healthcare transition framework for chronic pain, which highlights transition as a complex process involving multiple pathways, outcomes, and stakeholders. Advancements in research and practice are needed to develop transition services to bridge gaps in care and optimize health outcomes for young people with chronic pain. PERSPECTIVE: This mixed-methods study demonstrated that 41.8% of young adults with chronic pain experience lapses in adult-centered pain care and identified key barriers and facilitators to successful healthcare transition. Findings were integrated to construct the first healthcare transition framework for youth with chronic pain.

Influence of Gender and Self-Perceived Competence on Psychological Well-Being in Adolescent and Young Adult Cancer Survivors.

Elucidating factors associated with mental health and well-being among adolescent and young adult cancer survivors (AYAs) is increasingly important as this population continues to grow. Adolescence and young adulthood are critical times for developing self-perceived competencies (SPCs), which may be shaped by the cancer experience and may have different consequences based on the person's gender. We assessed whether gender moderated the association between perceived competencies and mental health in 61 AYAs (51% males; 11-20 years old; diagnosed between 0.33 and 17.33 years old). Gender moderated the association of SPC in close friendship, job, and scholastic domains with depression, anxiety, and optimism.

The prevalence of chronic pain in young adults: a systematic review and meta-analysis.

ABSTRACT: Previous systematic reviews have summarized the prevalence and impact of chronic pain in "average" pediatric (ie, school-age children) and adult (ie, middle-aged individuals) age groups. To the best of our knowledge, this is the first study to describe the prevalence of chronic pain in the subgroup of individuals who fall in between established boundaries of "childhood" and "adulthood"-known as young adulthood. The goal of this research was to meta-analyze prevalence data on pain in young adults based on available data published between 2008 and 2020. Searches were identified with MEDLINE, Embase, and PsycINFO. We included general population and university-based studies presenting prevalence estimates of chronic pain (pain lasting ≥3 months) in young adults. We identified 43 articles providing prevalence estimates across a combined population of 97,437 young adult respondents (age range: 15-34 years), with studies undertaken in 22 countries. Available data allowed for stratification of prevalence according to pain condition. The overall pooled random-effect prevalence rate of chronic pain in young adults was 11.6%, suggesting that 1 in every 9 young adults experience chronic pain worldwide. Prevalence rates varied considerably according to pain condition. Estimates did not vary according to sex, geographic location, and several study methodological characteristics (ie, population type, sampling area, sampling year, investigation period, and assessment method). Overall, young adult chronic pain is common and should be recognized as a major public health concern. Considering the difficulties young adults face accessing adult health care, greater attention is needed to develop transition programs and evidence-based treatments tailored to the unique needs of this age group.

Appraisals of Pain in Pediatric Inflammatory Bowel Disease: A Qualitative Study With Youth, Parents, and Providers.

Background: Pain is a predominant symptom of inflammatory bowel disease (IBD), and is influenced by cognitive, emotional, and behavioral factors. The cognitive-affective model of symptom appraisal (CAMSA) has been used to understand how youth view symptoms in chronic conditions. We sought to (1) determine how youth with IBD and their parents appraise pain, and how their perspectives fit within CAMSA, and (2) explore health care providers' understanding and communication about pain. Methods: Participants included 19 youth ages 10-17 years with chronic IBD pain and their parents, and 5 IBD providers from a gastroenterology clinic. Separate semi-structured qualitative interviews with youth, parents, and providers were conducted. Interview prompts were adapted from CAMSA, previous studies of pediatric pain and symptom monitoring, and a qualitative study in adults with IBD pain. Interviews were analyzed according to principles of reflexive thematic analysis. Results: Three key components of CAMSA (IBD Threat, Fear/Worry, and Biased Attending) were identified in youth and parent dyads. Some youth showed Biased Attending, including difficulty disengaging, while other youth simply monitored pain. The overarching theme for provider interviews was Gastroenterologists view pain as a secondary (rather than primary) treatment issue. Conclusions: CAMSA is potentially applicable to pain appraisal in youth with IBD and their parents. When health care providers communicate about pain, they should consider how symptom uncertainty may be influenced by threat, fear/worry, and biased attending. Further studies are needed to develop and test psychosocial interventions to reduce fear and threat of pain in youth with IBD in partnership with families and providers.

Impact of central nervous system-directed treatment on competence and adjustment among children in early cancer survivorship.

BACKGROUND: Central nervous system (CNS)-directed treatments can cause long-term academic, social, and emotional difficulties for children with cancer. However, limited research has examined the emergence of problems longitudinally and has often stratified risk by diagnosis alone. Therefore, this study compared competence and adjustment in children, who did and did not receive CNS-directed treatment, over the first 3 years following a cancer diagnosis. PROCEDURE: Mothers, fathers, and children (ages 5-18 years at diagnosis) from 217 families reported on the child's competence (academic, social) and adjustment (anxious/depressed, withdrawn/depressed) near a new cancer diagnosis or relapse and 3 years later. Children were categorized into CNS-directed treatment (n = 112; including cranial radiation, intrathecal chemotherapy, and/or neurosurgery) and non-CNS-directed treatment (n = 105) groups. RESULTS: At enrollment, there were few differences in competence and emotional adjustment among children based on treatment or diagnostic group. At 3 years, mothers and fathers reported poorer social competence for the CNS-directed treatment group, and fathers reported poorer school competence for the CNS-directed treatment group. Over time, father ratings of social competence increased for the non-CNS-directed treatment group, but not the CNS-directed treatment group. While father ratings of academic competence declined for the CNS-directed treatment group, mother ratings declined the most for children diagnosed with a brain tumor. All children demonstrated higher anxious/depressed scores over time. CONCLUSIONS: CNS-directed treatment may be a valuable indicator to identify childhood cancer survivors at risk for poor competence during early survivorship. Follow-up screening and supportive services are recommended, as well as additional longitudinal research.

Coping Trajectories and the Health-Related Quality of Life of Childhood Cancer Survivors.

OBJECTIVE: To identify coping trajectories from diagnosis through survivorship and test whether particular trajectories exhibit better health-related quality of life (HRQOL) at 5 years post-diagnosis. METHODS: Families of children with cancer (ages 5-17; M = 10.48, SD = 4.03) were recruited following a new diagnosis of cancer (N = 248). Three follow-up assessments occurred at 1-year (N = 185), 3-years (N = 101), and 5-years (N = 110). Mothers reported on children's coping using the Responses to Stress Questionnaire for Pediatric Cancer. Survivor HRQOL was measured at 5-year follow-up using self-report on the PedsQL 4.0. Longitudinal patterns of coping were derived using Latent Class Growth Analysis and mean-levels of survivor-report HRQOL were compared across classes. RESULTS: Two primary control coping trajectories emerged, "Moderate and Stable" (50%) and "Low-moderate and Decreasing" (50%), with no significant differences in HRQOL across trajectories. Three secondary control coping trajectories emerged, "Moderate-high and Increasing" (54%), "Moderate and Stable" (40%), and "High and Increasing" (6%), with survivors in the last trajectory showing better HRQOL. Two disengagement coping trajectories emerged, "Low and Stable" (85%) and "Low and Variable" (15%), with no significant differences in HRQOL across trajectories. CONCLUSIONS: Coping trajectories were relatively stable from diagnosis to 5 years. A small group of survivors with high and increasing secondary control coping over time, per mother-report, reported better HRQOL. Future research should consider tailoring coping interventions to children with cancer to improve survivors' HRQOL.

Systematic Review: Psychosocial Correlates of Pain in Pediatric Inflammatory Bowel Disease.

BACKGROUND: Pain is a common symptom in pediatric inflammatory bowel disease (IBD) and is associated with poor health outcomes, yet additional knowledge about the psychosocial correlates of pain is needed to optimize clinical care. The purpose of this study is to systematically review the psychosocial factors associated with pain and pain impact in youth diagnosed with IBD within a developmentally informed framework. METHODS: Manual and electronic searches yielded 2641 references. Two authors conducted screening (98% agreement), and data extraction was performed in duplicate. Average study quality was rated using the National Institutes of Health Quality Assessment Tool. RESULTS: Ten studies (N = 763 patients; N = 563 Crohn disease, N = 200 ulcerative/ indeterminate colitis) met the inclusion criteria. Findings showed consistent evidence that higher levels of child depression symptoms and child pain catastrophizing were associated with significantly greater pain and pain impact (magnitude of association ranged from small to large across studies). Greater pain and pain impact were also associated with higher levels of child anxiety symptoms, child pain threat, child pain worry, and parent pain catastrophizing. Within the included studies, female sex and disease severity were both significantly associated with pain and pain impact. Study quality was moderate on average. CONCLUSIONS: There is evidence that child psychosocial factors are associated with pain and pain impact in pediatric IBD; more studies are needed to examine parent- and family-level psychosocial factors. Youth with IBD should be routinely screened for pain severity, pain impact, and psychosocial risk factors such as anxiety/depression.

Cognitive and Attentional Function in Children with Hypoplastic Left Heart Syndrome: A Pilot Study.

While survival for children with hypoplastic left heart syndrome (HLHS) has improved, compromised cardiac output and oxygen delivery persist, and children show cognitive deficits. Most research has assessed young children on broad cognitive indices; less is known about specific indices in older youth. In this pilot study, cognitive function and attention in youth ages 8 to 16 years with HLHS (n = 20) was assessed with the Wechsler Intelligence Scale for Children - Fifth Edition (WISC-V) and NIH Toolbox Cognition Battery (NTCB); parents completed the Child Behavior Checklist. Children scored significantly lower than normative means on the WISC-V Full Scale IQ, Verbal Comprehension, Visual Spatial, Working Memory, and Processing Speed indices, and the NTCB Fluid Cognition Composite; effect sizes ranged from medium to large. Attention problems had a large significant effect. Child age corresponded to lower visual spatial scores. Findings highlight the importance of assessing multiple cognitive indices for targeted intervention and investigating age and disease factors as potential correlates in larger samples.

Mother-child communication about possible cancer recurrence during childhood cancer survivorship.

OBJECTIVE: Providing opportunities to communicate about possible cancer recurrence may be adaptive for youth in remission, yet parents may experience difficulty guiding discussions related to fears of cancer recurrence (FCR). This study aimed to characterize mother-child discussions about potential cancer recurrence during post-treatment survivorship and to determine predictors of maternal communication. METHODS: Families (N = 67) were recruited after the child's initial cancer diagnosis (age 5-17 years) and mothers self-reported their distress (post-traumatic stress symptoms; PTSS). During survivorship 3-5 years later, mothers were video-recorded discussing cancer with their children. Presence and length of discussion about potential cancer recurrence, triggers for FCR, expressed affect, and conversational reciprocity were examined. Hierarchical regressions were used to assess maternal PTSS near the time of cancer diagnosis and child age as predictors of maternal communication. RESULTS: Three-quarters of dyads spontaneously discussed risk for or fears about cancer recurrence; mothers initiated the topic more frequently than their children. Dyads discussed internal (bodily symptoms) and external (medical, social) triggers of FCR. Higher maternal PTSS at diagnosis predicted significantly lower levels of maternal positive affect (ß = -0.36, p = 0.02) and higher levels of maternal negative affect (ß = 0.30, p = 0.04) during discussion of recurrence 3-5 years later. Older child age significantly predicted higher levels of maternal negative affect (ß = 0.35, p = 0.02). Higher maternal PTSS at diagnosis predicted shorter discussions about recurrence for younger children (ß = 0.27, p = 0.02). CONCLUSIONS: Understanding predictors and characteristics of mother-child discussions about recurrence can guide family-based FCR interventions, particularly those promoting communication as a supportive tool. Both maternal PTSS and child age are important to consider when developing these interventions.

Comorbid Sleep Disturbance in Adolescents with Functional Abdominal Pain.

OBJECTIVE/BACKGROUND: Sleep disturbances have been commonly reported as comorbid in youth with pain conditions, but prior research specific to functional abdominal pain (FAP) is limited. This study describes individual factors associated with increased risk for sleep disturbance and characterizes the relationship between sleep disturbance and pain-related variables. PARTICIPANTS: Participants included 278 adolescents (age 11 to 17 years, M age = 15 years; 89% Caucasian; 65% female) with FAP. METHODS: Participants reported on sleep disturbances, abdominal pain severity, functional disability, somatic symptoms, and healthcare utilization. RESULTS: Female adolescents reported greater sleep disturbance than male adolescents (t(276) = 5.52, p < .001, Cohen's d = 0.70) and increased age was associated with greater sleep disturbance (r =.20, p =.001). In hierarchical regressions controlling for age, sex, and abdominal pain, greater sleep disturbance was significantly associated with greater functional disability (ß =.32), non-gastrointestinal somatic symptoms (ß =.35), and emergency department visits (ß =.29). CONCLUSIONS: Results suggest that sleep disturbance is common and should be assessed in youth presenting with FAP and may be a potential target for intervention.

Biopsychosocial Correlates of Presence and Intensity of Pain in Adolescents With Inflammatory Bowel Disease.

Background: There is growing consensus that pain in pediatric inflammatory bowel disease (IBD) is not fully explained by disease-related processes. However, previous studies have largely measured individual biological, psychological, or social risk factors for pain in isolation. Further, not all youth with IBD presenting to clinic will report presence of pain, and those who do vary in their reports of pain intensity. This study therefore extends prior research by determining biopsychosocial correlates of both presence and intensity of pain in adolescents with IBD, in order to inform targeted pain management intervention approaches. Methods: Adolescents with IBD followed at SickKids, Toronto, and their parents were consecutively enrolled from outpatient clinic. IBD characteristics (diagnosis, time since diagnosis, patient-reported disease activity) were collected. Adolescents reported on current pain (NRS-10), internalizing symptoms (Strengths and Difficulties Questionnaire), and pain catastrophizing (Pain Catastrophizing Scale-Child). Parents reported on protective responses to child pain (Adult Responses to Child Pain) and pain catastrophizing (Pain Catastrophizing Scale-Child). Hurdle models were conducted to examine predictors of presence and intensity of pain in the same model. Biological (patient-reported disease activity, IBD diagnosis subtype, illness duration), psychological (internalizing symptoms, pain catastrophizing), and social (parent pain catastrophizing, parent protective responses) factors were entered as predictors, adjusting for age and sex. Results: Participants included 100 adolescents (12-18; Mean = 15 years) with IBD (60% Crohn's Disease, 40% Ulcerative Colitis or IBD-unclassified) and 76 parents. The majority of the sample was in clinical remission or reported minimal symptoms. Half of participants reported no current pain; for those reporting pain, intensity ranged 1-7 (M = 3.43, SD = 1.98). Disease activity (OR = 53.91, p < 0.001) and adolescent internalizing symptoms (OR = 7.62, p = 0.03) were significant predictors of presence of pain. Disease activity (RR = 1.37, p = 0.03) and parent protective responses (RR = 1.45, p = 0.02) were significant predictors of intensity of pain. Conclusions: Results suggest that the experience of pain in pediatric IBD is biopsychosocially determined. Patient-reported disease activity and internalizing symptoms predicted presence of pain, while disease activity and parent protective responses predicted intensity of pain. While medical intervention in pediatric IBD is focused on disease management, results suggest that depression/anxiety symptoms as well as parent protective responses may be important targets of pain management interventions in pediatric IBD.

Abdominal Pain After Pediatric Inflammatory Bowel Disease Diagnosis: Results From the ImproveCareNow Network.

OBJECTIVES: Although abdominal pain is a hallmark symptom of pediatric inflammatory bowel disease (IBD), limited research has examined pain during the first year after diagnosis. The purpose of the present study is to examine prevalence, predictors, and impact of abdominal pain during the 12 months after pediatric IBD diagnosis using data from the ImproveCareNow (ICN) Network. PATIENTS AND METHODS: Participants consisted of 13,875 youth (age 8-18 years, 44% female, 81% Caucasian) with IBD (65% Crohn's disease; 27% ulcerative colitis, 8% indeterminate colitis) enrolled in the ICN Network with data from clinic visits during the first year after diagnosis (1-22 visits; mean = 3.7). Multivariable mixed effects logistic regression models were conducted to analyze the presence versus the absence of abdominal pain, activity limitations, and decrements in well-being. RESULTS: The percentage of youth reporting abdominal pain decreased significantly during the first year after diagnosis and yet a sizeable group reported continued pain at 12 months (55.9% at diagnosis; 34.0% at 12 months). Multivariable analyses revealed that greater time since diagnosis (odds ratio [OR] = 0.98, P < 0.001), higher disease severity (OR = 11.84, P < 0.001), presence of psychosocial risk factors (OR = 2.33, P = 0.036), and female sex (OR = 1.90, P < 0.010) were significant correlates of continuing abdominal pain. Abdominal pain was significantly associated with decrements in well-being (OR = 5.11, P < 0.001) as well as limitations in activity (OR = 9.31, P < 0.001), over and above the influence of disease severity. CONCLUSIONS: Abdominal pain is prevalent and impactful, even when controlling for disease activity, during the first year after pediatric IBD diagnosis. Results from the present study can inform screening and tailored pain management intervention efforts in pediatric IBD.

Understanding the Psychosocial and Parenting Needs of Mothers with Irritable Bowel Syndrome with Young Children.

Women of childbearing age experience the highest prevalence of irritable bowel syndrome (IBS), yet little is known about their psychosocial and parenting needs, which may influence their children's experience of future gastrointestinal or pain-related conditions. The aims of this study were to conduct qualitative interviews to understand the psychosocial and parenting needs of mothers with IBS who have young school-age children, and to assess mothers' potential interest in and acceptability of a preventive parenting intervention program. Ten mothers with IBS who have young (age 5-10), healthy children were interviewed. Interviews were coded with thematic analysis and three themes were identified: (1) Guilt about how IBS impacts children, (2) Worry that children will develop IBS, and (3) Already on high alert for children's health. All mothers expressed interest in an Internet-based preventive intervention and identified tools and strategies they would want included. Results demonstrate that mothers experience guilt about how IBS has impacted their children in their daily lives, concern that they need to pay attention to children's early signs and symptoms that could indicate gastrointestinal problems, and worry about children developing IBS in the future-suggesting that a preventive intervention may address important concerns for this population.

Longitudinal Trajectories of Caregiver Distress and Family Functioning After Community-Acquired Pediatric Septic Shock.

OBJECTIVES: To identify trajectories and correlates of caregiver distress and family functioning in families of children who survived community-acquired septic shock. We hypothesized that: 1) a substantial subset of families would demonstrate trajectories of persistent elevated caregiver distress and impaired family functioning 12 months after hospitalization and 2) sociodemographic and clinical risk factors would be associated with trajectories of persistent distress and family dysfunction. DESIGN: Prospective cohort. SETTING: Fourteen PICUs in the United States. PATIENTS: Caregivers of 260 children who survived community-acquired septic shock. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Caregivers completed ratings of distress on the Brief Symptom Inventory and of family functioning on the Family Assessment Device at baseline, 1, 3, 6, and 12 months after hospitalization. Results from group-based trajectory modeling indicated that 67% of the current sample was characterized by persistent low caregiver distress, 26% by persistent moderate to high distress that remained stable across 12 months (high-risk caregiver distress group), and 8% by initial high distress followed by gradual recovery. Forty percent of the sample was characterized by stable high family functioning, 15% by persistent high dysfunction across 12 months (high-risk family functioning group), 12% by gradually improving functioning, and 32% by deteriorating function over time. Independently of age, child race was associated with membership in the high-risk caregiver distress group (non-white/Hispanic; effect size, -0.12; p = 0.010). There were no significant sociodemographic or clinical correlates of the high-risk family functioning group in multivariable analyses. CONCLUSIONS: Although the majority of families whose children survived community-acquired septic shock were characterized by resilience, a subgroup demonstrated trajectories of persistently elevated distress and family dysfunction during the 12 months after hospitalization. Results suggest a need for family-based psychosocial screening after pediatric septic shock to identify and support at-risk families.

Daily Peer Victimization Experiences of Adolescents With and Without Chronic Pain: Associations With Mood, Sleep, Pain, and Activity Limitations.

This study aims to 1) examine the temporal influence of peer victimization on mood, sleep quality, pain, and activity limitations in clinical and community samples of youth, and 2) test mood and sleep as mediators of peer victimization-pain pathways. One hundred fifty-six adolescents (n = 74 chronic pain group) completed a week of online diary monitoring assessing their daily peer victimization experiences, negative mood, sleep quality, pain intensity, and pain-related activity limitations. In multilevel models controlling for group status, person-mean peer victimization (averaged across days) significantly predicted worse mood, pain, and activity limitations (all Ps < .01) while daily victimization predicted worse mood (P < .05). Results from within-person mediation indicated a significant indirect effect of daily peer victimization on next-day activity limitations, through daily negative mood. Results from between-person mediation indicated that negative mood significantly mediated the relation between peer victimization and pain and the relation between peer victimization and activity limitations. Peer victimization is associated with negative health indicators in clinical and community samples of youth and may exert its influence on pain and pain-related activity limitations through negative mood. PERSPECTIVE: This article examines the temporal influence of peer victimization on pain in adolescents with and without chronic pain, and examines mood and sleep quality as mechanisms linking victimization to pain. This information may be useful for pain prevention researchers as well as providers who assess and treat pain in childhood.

Long-term trajectories of depression symptoms in mothers of children with cancer.

OBJECTIVE: To identify trajectories of depression symptoms in mothers of children with cancer from diagnosis/relapse through 5 years and examine maternal factors at diagnosis/relapse predicting membership in these trajectories. METHOD: Mothers (n = 327; Mage = 37.6 years, SD = 7.7 years; 85.9% White) reported depression symptoms near the time of their child's diagnosis/relapse and then again at 1-, 3-, and 5-years postdiagnosis/relapse. Mothers also reported perceived stress, coping (primary control, secondary control, and disengagement coping), and spirituality near the time of diagnosis. Latent class growth analysis was used to identify latent trajectories of depression symptoms, and a 3-step multinomial logistic regression tested covariate predictors of membership in the trajectories. RESULTS: Three trajectories were identified: "low depression symptoms" (63.3%), "moderate depression symptoms" (31.5%), and "high depression symptoms" (5.2%). Mothers who used more primary and secondary control coping were more likely to be in the low depression symptom trajectory as compared with the moderate (OR = 1.64, p = .024 and OR = 1.38, p = .013, respectively) or high trajectories (OR = 1.99, p = .008 and OR = 1.81, p = .001, respectively). CONCLUSIONS: Although mothers of children with cancer generally displayed improved mental health further from diagnosis, mothers with more depression symptoms after diagnosis/relapse displayed substantial stability in depression symptoms over the 5 years. Mothers of children with cancer may benefit from early screening of mental health and coping strategies, as well as interventions to bolster effective coping for those with elevated depression symptoms. (PsycINFO Database Record (c) 2020 APA, all rights reserved).

Cognitive Function in Pediatric Hypoplastic Left Heart Syndrome: Systematic Review and Meta-Analysis.

OBJECTIVE: Despite surgical palliation, children with hypoplastic left heart syndrome (HLHS) have compromised cardiac functioning and increased risk for cognitive deficits. We quantitatively reviewed the empirical data from this literature. METHODS: The present meta-analysis included 13 studies reporting cognitive function for children with HLHS between the ages of 2 years and 6 months and 17 years that used standardized assessments of Full Scale IQ (FSIQ), Verbal IQ (VIQ), and Performance IQ (PIQ). Differences in cognitive function were assessed relative to normative data, and we examined sample mean age and publication year as moderators. RESULTS: Large effects were found for FSIQ (g = -.87, 95% CI [-1.10, -.65], M = 86.88) and PIQ (g = -.89, 95% CI [-1.11, -.68], M = 86.56), and a medium effect was found for VIQ (g = -.61, 95% CI [-.84, -.38], M = 90.82). All models demonstrated significant heterogeneity. Meta-regression analyses of effect size via Hedges' g on child age revealed a significant effect on FSIQ (coefficient = -.07, 95% CI [-.12, -.01], p < .01, R2 = .40) indicating a loss of 1.1 FSIQ points across studies with each increased year of mean sample age. CONCLUSIONS: Deficits in FSIQ may reflect chronic brain injury or failure to make expected gains as children age. This review highlights the importance of early intervention in this population, and the need for longitudinal studies analyzing more specific domains of cognitive function and potential moderators.

iCanCope with Sickle Cell Pain: Design of a randomized controlled trial of a smartphone and web-based pain self-management program for youth with sickle cell disease.

Many adolescents with sickle cell disease (SCD) experience recurrent and chronic pain, which has a negative impact on their health-related quality of life (HRQL). Cognitive-behavioral therapy (CBT) interventions can lead to improvement in pain and HRQL, yet due to barriers to care, most youth with SCD will not receive these interventions. To address this need for innovative programs targeting youth with SCD pain, we developed iCanCope, a tailored smartphone and web-based program that delivers a pain self-management intervention to youth with SCD. We describe the rationale, design, and implementation of a three-site parallel group randomized controlled trial with a sample of 160 adolescents with SCD and their parent caregivers. The iCanCope program includes pain self-management skills training (personalized CBT-based coping skills such as deep breathing, relaxation, and cognitive skills), goal setting, and social support. The attention control group is provided with access to a self-guided website with education about SCD. Assessments will occur at baseline (T1), immediately after completion of the intervention (12 weeks; T2) and at 6 months post-intervention (T3). Primary outcomes include coping strategies and pain intensity; secondary outcomes include physical, social, and emotional functioning, treatment satisfaction, health service use and caregiver response to youth pain behavior. Potential mediators (goal setting, self-management, and perceptions of social support) and moderators (e.g., demographic factors) will also be tested. The objective is to offer an effective, convenient, and low-cost psychosocial intervention to youth with SCD to enhance their self-management of pain.

Longitudinal associations among maternal depressive symptoms, child emotional caretaking, and anxious/depressed symptoms in pediatric cancer.

Research has shown that children experience increased emotional distress when engaging in emotional caretaking of a parent. The current study is the first to examine this process in families in which the source of the stress is the child's illness. Prospective associations were tested among mothers' depressive symptoms near the time of their child's cancer diagnosis, mothers' expressed distress and their child's emotional caretaking during an interaction task, and child anxious/depressed symptoms at 1 year postdiagnosis. Families (N = 78) were recruited from two pediatric hospitals soon after their child's (Ages 5-18) new diagnosis or relapse of cancer. Mothers reported on their own depressive symptoms and their child's anxious/depressed symptoms near the time of diagnosis or recurrence (Time 1) and 1 year later (Time 3). At Time 2 (4 months after Time 1), mother-child dyads completed a video-recorded discussion of their experience with cancer that was coded for observed maternal expressed distress (anxiety, sadness) and observed child emotional caretaking. Maternal expressed distress during the interaction was significantly related to more emotional caretaking behaviors by both boys and girls. Results of a moderated mediation model showed that child emotional caretaking at Time 2 significantly mediated the relation between maternal depressive symptoms at Time 1 and child anxious/depressed symptoms at Time 3 for girls but not for boys. The findings suggest that children's emotional caretaking behaviors contribute to subsequent anxious/depressed symptoms for girls, but not for boys, with cancer. (PsycINFO Database Record (c) 2018 APA, all rights reserved).