RESUMEN
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.
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Neoplasias , Trastornos por Estrés Postraumático , Adolescente , Niño , Preescolar , Comunicación , Femenino , Humanos , Relaciones Madre-Hijo , Madres , SupervivenciaRESUMEN
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.
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Neoplasias Encefálicas , Supervivientes de Cáncer , Ajuste Social , Adolescente , Ansiedad , Neoplasias Encefálicas/psicología , Neoplasias Encefálicas/terapia , Sistema Nervioso Central , Niño , Preescolar , Irradiación Craneana , Depresión , Padre , Femenino , Humanos , Masculino , Madres , Recurrencia Local de NeoplasiaRESUMEN
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.
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Supervivientes de Cáncer , Neoplasias , Adaptación Psicológica , Adolescente , Niño , Preescolar , Femenino , Humanos , Calidad de Vida , SobrevivientesRESUMEN
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.
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Dolor Abdominal/epidemiología , Trastornos del Sueño-Vigilia/epidemiología , Adolescente , Niño , Comorbilidad , Femenino , Humanos , Masculino , SueñoRESUMEN
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.
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Síndrome del Corazón Izquierdo Hipoplásico , Adolescente , Anciano , Atención , Niño , Preescolar , Cognición , Humanos , Proyectos Piloto , Escalas de WechslerRESUMEN
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.
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Dolor Abdominal , Colitis Ulcerosa , Enfermedad de Crohn , Enfermedades Inflamatorias del Intestino , Dolor Abdominal/diagnóstico , Dolor Abdominal/epidemiología , Dolor Abdominal/etiología , Adolescente , Niño , Colitis Ulcerosa/complicaciones , Colitis Ulcerosa/diagnóstico , Enfermedad de Crohn/complicaciones , Enfermedad de Crohn/diagnóstico , Femenino , Humanos , Enfermedades Inflamatorias del Intestino/complicaciones , Enfermedades Inflamatorias del Intestino/diagnóstico , Masculino , Índice de Severidad de la EnfermedadRESUMEN
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.
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Cuidadores , Choque Séptico , Adaptación Psicológica , Niño , Familia , Humanos , Estudios Prospectivos , Calidad de VidaRESUMEN
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.
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Disfunción Cognitiva/fisiopatología , Síndrome del Corazón Izquierdo Hipoplásico/fisiopatología , Adolescente , Niño , Preescolar , Disfunción Cognitiva/etiología , Humanos , Síndrome del Corazón Izquierdo Hipoplásico/complicacionesRESUMEN
Objective: This study aimed to characterize mothers' communication with their children in a sample of families with a new or newly relapsed pediatric cancer diagnosis, first using factor analysis and second using structural equation modeling to examine relations between self-reported maternal distress (anxiety, depression, and posttraumatic stress) and maternal communication in prospective analyses. A hierarchical model of communication was proposed, based on a theoretical framework of warmth and control. Methods: The sample included 115 children (age 5-17 years) with new or newly relapsed cancer (41% leukemia, 18% lymphoma, 6% brain tumor, and 35% other) and their mothers. Mothers reported distress (Beck Anxiety Inventory, Beck Depression Inventory-II, and Impact of Events Scale-Revised) 2 months after diagnosis (Time 1). Three months later (Time 2), mother-child dyads were video-recorded discussing cancer. Maternal communication was coded with the Iowa Family Interaction Ratings Scales. Results: Confirmatory factor analysis demonstrated poor fit. Exploratory factor analysis suggested a six-factor model (root mean square error of approximation = .04) with one factor reflecting Positive Communication, four factors reflecting Negative Communication (Hostile/Intrusive, Lecturing, Withdrawn, and Inconsistent), and one factor reflecting Expression of Negative Affect. Maternal distress symptoms at Time 1 were all significantly, negatively related to Positive Communication and differentially related to Negative Communication factors at Time 2. Maternal posttraumatic stress and depressive symptoms each predicted Expression of Negative Affect. Conclusions: Findings provide a nuanced understanding of maternal communication in pediatric cancer and identify prospective pathways of risk between maternal distress and communication that can be targeted in intervention.
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Comunicación , Trastornos Mentales/psicología , Relaciones Madre-Hijo/psicología , Madres/psicología , Neoplasias/psicología , Adolescente , Adulto , Trastornos de Ansiedad/psicología , Niño , Preescolar , Trastorno Depresivo/psicología , Análisis Factorial , Femenino , Humanos , Masculino , Medio Oeste de Estados Unidos , Madres/estadística & datos numéricos , Estudios Prospectivos , Recurrencia , Trastornos por Estrés Postraumático/psicologíaRESUMEN
AIM: Previous research investigating outcomes after pediatric intracerebral hemorrhage (ICH) has generally been limited to global and sensorimotor outcomes. This study examined cognitive outcomes after spontaneous ICH in school-aged children with serial assessments over 2 years after stroke. METHOD: Seven children (age range 6-16y, median 13; six males, one female; 57% white, 43% black) presenting with spontaneous ICH (six arteriovenous malformations) were assessed at 3 months, 12 months, and 24 months after stroke. The Pediatric Stroke Outcome Measure (PSOM) quantified neurological outcome and Wechsler Intelligence Scales measured cognitive outcomes: verbal comprehension, perceptual reasoning, working memory, and processing speed. RESULTS: PSOM scales showed improved neurological function over the first 12 months, with mild to no sensorimotor deficits and moderate overall deficits at 1- and 2-year follow-ups (median 2-year sensorimotor PSOM=0.5, total PSOM=1.5). Changes in cognitive function indicated a different trajectory; verbal comprehension and perceptual reasoning improved over 24 months; low performance was sustained in processing speed and working memory. Age-normed centile scores decreased between 1- and 2-year follow-ups for working memory, suggesting emerging deficits compared with peers. INTERPRETATION: Early and serial cognitive testing in children with ICH is needed to assess cognitive functioning and support children in school as they age and cognitive deficits become more apparent and important for function. WHAT THIS PAPER ADDS: In children with intracerebral hemorrhage (ICH), motor function improved between 3 months and 24 months. Improvements in cognitive function were variable between 3 months and 24 months. Working memory centiles declined, suggesting emerging deficits compared with peers. Processing speed improved but remained significantly below the 50th centile. Cognitive impact of ICH may increase with age in children.
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Hemorragia Cerebral/complicaciones , Trastornos del Conocimiento/etiología , Adolescente , Niño , Trastornos del Conocimiento/diagnóstico , Comprensión , Femenino , Humanos , Inteligencia , Pruebas de Inteligencia , Estudios Longitudinales , Masculino , Memoria a Corto Plazo/fisiología , Examen Neurológico , Pruebas Neuropsicológicas , Evaluación de Resultado en la Atención de SaludRESUMEN
Objective: To review research on observed family communication in families with children with chronic illnesses compared with families with healthy, typically developing children, and to integrate findings utilizing a unifying family communication framework. Method: Topical review of studies that have directly observed family communication in pediatric populations and included a typically developing comparison group. Results: Initial findings from 14 studies with diverse approaches to quantifying observed family communication suggest that families with children with chronic illnesses may demonstrate lower levels of warm and structured communication and higher levels of hostile/intrusive and withdrawn communication compared with families with healthy, typically developing children. Conclusion: An integrative framework of family communication may be used in future studies that examine the occurrence, correlates, and mechanisms of family communication in pediatric populations.
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Enfermedad Crónica/psicología , Comunicación , Relaciones Familiares/psicología , Adolescente , Niño , Preescolar , Femenino , Humanos , MasculinoRESUMEN
Objectives: To examine parent-child communication (i.e., openness, problems) and child adjustment among youth with advanced or non-advanced cancer and comparison children. Methods: Families (n = 125) were recruited after a child's diagnosis/relapse and stratified by advanced (n = 55) or non-advanced (n = 70) disease. Comparison children (n = 60) were recruited from local schools. Children (ages 10-17) reported on communication (Parent-Adolescent Communication Scale) with both parents, while mothers reported on child adjustment (Child Behavior Checklist) at enrollment (T1) and one year (T2). Results: Openness/problems in communication did not differ across groups at T1, but problems with fathers were higher among children with non-advanced cancer versus comparisons at T2. Openness declined for all fathers, while changes in problems varied by group for both parents. T1 communication predicted later adjustment only for children with advanced cancer. Conclusions: Communication plays an important role, particularly for children with advanced cancer. Additional research with families affected by life-limiting conditions is needed.
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Comunicación , Ajuste Emocional , Neoplasias/psicología , Relaciones Padres-Hijo , Adolescente , Adulto , Estudios de Casos y Controles , Niño , Preescolar , Femenino , Humanos , Estudios Longitudinales , Masculino , Recurrencia Local de Neoplasia/patología , Recurrencia Local de Neoplasia/psicología , Neoplasias/diagnóstico , Neoplasias/patologíaRESUMEN
OBJECTIVE: The purpose of this study was to prospectively examine adolescent and maternal posttraumatic stress symptoms (PTSS) and maternal communication from time near cancer diagnosis to 12-month follow-up to identify potential risk factors for adolescent PTSS. METHODS: Forty-one adolescents with cancer (10-17 years, 54% female) and their mothers self-reported PTSS at T1 (two months after cancer diagnosis) and T3 (1-year follow-up). At T2 (3 months after T1), mother-adolescent dyads were videotaped discussing cancer, and maternal communication was coded with macro (harsh and withdrawn) and micro (solicits and validations) systems. RESULTS: Adolescent PTSS at T1 was associated with adolescent PTSS at T3. Greater maternal PTSS at T1 predicted greater harsh maternal communication at T2. There was an indirect effect of maternal PTSS at T1 on adolescent PTSS at T3 through maternal validations at T2. CONCLUSIONS: Findings underscore the importance of maternal PTSS, maternal communication, and subsequent adolescent PTSS over the course of treatment of childhood cancer. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.
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Relaciones Madre-Hijo , Madres/psicología , Neoplasias/psicología , Trastornos por Estrés Postraumático/psicología , Sobrevivientes/psicología , Adaptación Psicológica , Adolescente , Adulto , Femenino , Humanos , Estudios Longitudinales , Masculino , Neoplasias/diagnóstico , Factores de Riesgo , Trastornos por Estrés Postraumático/diagnósticoRESUMEN
OBJECTIVE: To compare rates of alcohol and tobacco use in youth with and without chronic pain and to identify risk factors for use. METHODS: Participants included 186 youth (95 mixed chronic pain; 91 without chronic pain; 12-18 years old) who reported current alcohol and tobacco use, pain intensity, activity limitations, loneliness, and depressive symptoms. RESULTS: Adolescents with chronic pain were less likely to use alcohol compared with adolescents without chronic pain (7.4% vs. 22%), and as likely to use tobacco (9% vs. 8%). Across groups, youth with higher depressive symptoms, less loneliness, and fewer activity limitations were more likely to endorse alcohol and tobacco use. Exploratory analyses revealed that risk factors for substance use differed among youth with and without chronic pain. CONCLUSIONS: Chronic pain may not increase risk for tobacco and alcohol use in adolescents. Research is needed to understand use of other substances in this medically vulnerable population.
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Consumo de Bebidas Alcohólicas/epidemiología , Dolor Crónico/psicología , Fumar/epidemiología , Adolescente , Consumo de Bebidas Alcohólicas/psicología , Niño , Depresión/epidemiología , Depresión/psicología , Femenino , Humanos , Soledad , Masculino , Prevalencia , Factores de Riesgo , Fumar/psicologíaRESUMEN
OBJECTIVE: To examine observed autonomy-promoting and -inhibiting parenting behaviors during preadolescence as predictors of adjustment outcomes in emerging adults with and without spina bifida (SB). METHODS: Demographic and videotaped interaction data were collected from families with 8/9-year-old children with SB (n = 68) and a matched group of typically developing youth (n = 68). Observed interaction data were coded with macro- and micro-coding schemes. Measures of emerging adulthood adjustment were collected 10 years later (ages 18/19 years; n = 50 and n = 60 for SB and comparison groups, respectively). RESULTS: Autonomy-promoting (behavioral control, autonomy-relatedness) and -inhibiting (psychological control) observed preadolescent parenting behaviors prospectively predicted emerging adulthood adjustment, particularly within educational, social, and emotional domains. Interestingly, high parent undermining of relatedness predicted better educational and social adjustment in the SB sample CONCLUSIONS: Parenting behaviors related to autonomy have long-term consequences for adjustment in emerging adults with and without SB.
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Adaptación Psicológica , Conflicto Familiar/psicología , Responsabilidad Parental/psicología , Disrafia Espinal/psicología , Adolescente , Niño , Femenino , Humanos , Control Interno-Externo , Estudios Longitudinales , Masculino , Autonomía Personal , Valores de Referencia , Autocuidado/psicología , Ajuste Social , Trastornos Relacionados con Sustancias/psicología , Adulto JovenRESUMEN
OBJECTIVE: To examine associations between sociodemographic factors (single parenthood, family income, education level, race), stress, and psychological distress among pediatric cancer patients and their mothers. METHODS: Participants completed measures assessing sociodemographic variables, depressive symptoms, posttraumatic stress symptoms, general stress, and cancer-related stress within the first year of the child's (ages 5-17 years) cancer diagnosis or relapse. Mothers (N = 318) provided self-reports and parent report of their children; children aged 10-17 years (N = 151) completed self-reports. RESULTS: Each sociodemographic variable demonstrated unique associations with mothers' and children's stress and distress in bivariate analyses. A cumulative sociodemographic risk measure was positively correlated with all stress and distress variables. In regression analyses predicting mothers' and children's distress, independent and cumulative sociodemographic measures were no longer significant when accounting for levels of stress. CONCLUSIONS: Findings highlight the need to consider the ecological context of pediatric cancer, particularly the impact of sociodemographic disadvantage on stress and distress in this population.
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Trastorno Depresivo/complicaciones , Madres/psicología , Neoplasias/complicaciones , Neoplasias/psicología , Estrés Psicológico/complicaciones , Adolescente , Adulto , Actitud Frente a la Salud , Niño , Preescolar , Trastorno Depresivo/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Factores Socioeconómicos , Estrés Psicológico/psicología , Adulto JovenRESUMEN
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.
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Dolor Crónico , Adolescente , Humanos , Adulto Joven , Niño , Dolor Crónico/terapia , Biología , Investigación CualitativaRESUMEN
OBJECTIVE: Little is known about how participation in internet-based behavioral interventions influences outcomes in youth with health conditions. This study describes participation in an online behavioral pain management intervention for families of adolescents with chronic pain. METHODS: 26 adolescent-parent dyads were randomized to the intervention arm of a controlled trial evaluating a cognitive-behavioral pain intervention. Participation was measured by the number of logins, messages, completion of interactive fields, and behavioral assignments. Associations between content of messages from participants and treatment outcomes were evaluated. RESULTS: Most participants (92.3%) logged in and completed assignments. Over half of participants initiated messages to the online coach. A greater number of messages sent by adolescents containing rapport or treatment content predicted positive treatment outcomes. CONCLUSIONS: Most families actively participated in the intervention. Interaction with an online coach may increase the benefit of this Internet behavioral pain management treatment program for adolescents.
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Terapia Conductista , Dolor Crónico/terapia , Internet , Terapia Asistida por Computador , Adolescente , Niño , Dolor Crónico/psicología , Femenino , Humanos , Masculino , Manejo del Dolor , Autocuidado , Resultado del TratamientoRESUMEN
The aims of this study were to (a) assess and compare sleep disturbances (including daytime and nighttime sleep patterns) in adolescents with depressive disorders and healthy peers, (b) examine the prevalence of pain in adolescents with depressive disorders and healthy peers, and (c) examine pubertal development, pain intensity, and depressive symptom severity as predictors of sleep disturbance. One hundred six adolescents (46 depressed, 60 healthy), 12 to 18 years (M = 15.10 years; 67% female; 77% Caucasian) completed subjective measures of sleep, presleep arousal, fatigue, and pain. Participants also underwent 10 days of actigraphic monitoring to assess nighttime and daytime sleep duration, sleep efficiency, and wake after sleep onset. Results indicated that youth with depression exhibited greater sleep disturbances on subjective and actigraphic sleep variables than healthy controls. Depressed youth also reported more frequent and severe pain than healthy youth. Linear regression analysis indicated that pain intensity and depressive symptoms predicted worse sleep quality across groups. The interaction term was also significant, such that adolescents with high levels of depressive symptoms had poor sleep quality when pain intensity levels were high. These results indicate that sleep is important to assess in youth with depression, and that pain may be an important target for sleep intervention in this population.
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Trastorno Depresivo/complicaciones , Dolor/complicaciones , Trastornos del Sueño-Vigilia/etiología , Actigrafía , Adolescente , Estudios de Casos y Controles , Niño , Trastorno Depresivo/psicología , Fatiga/etiología , Fatiga/psicología , Femenino , Humanos , Modelos Lineales , Masculino , Dolor/psicología , Dimensión del Dolor , Escalas de Valoración Psiquiátrica , Trastornos del Sueño-Vigilia/psicologíaRESUMEN
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.