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1.
Epilepsy Behav ; 147: 109393, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37619462

RESUMO

OBJECTIVE: A family-tailored education and problem-solving intervention, Supporting Treatment Adherence Regimens (STAR), was developed to address the adherence challenges common in youth with epilepsy and their families. Randomized clinical trial (RCT) results indicated a 21% adherence improvement in the STAR group compared with an education-only (EO) group 12-months post-intervention. The current study examined group differences (STAR vs. EO) in epilepsy-specific knowledge, barriers to medication adherence, problem-solving skills, caregiver emotional distress, and family functioning over time and whether these factors mediated group differences in adherence at 12-months post-intervention. METHODS: Two-hundred children (ages 2-12) with epilepsy and their caregivers were included as RCT participants. Children with new-onset epilepsy and adherence <95% were randomized to receive either the STAR (n = 27) or EO (n = 29) intervention. Caregivers completed questionnaires assessing outcomes of interest at baseline, midpoint of the intervention, post-intervention, and 3-, 6-, and 12-month follow-ups. Regression-based analyses of covariance and longitudinal mixed effect linear models were conducted. RESULTS: Results generally revealed no significant group differences across outcomes of interest at post-intervention or over time. However, one significant model did emerge for social problem-solving skills (b = -1.74, p = 0.04), such that these scores were initially higher in the STAR group compared to the EO group, then decreased slightly in the STAR group over time while remaining stable in the EO group. None of these factors mediated group differences in adherence at 12-months post-intervention. CONCLUSION: Future research should examine other potential mechanisms of treatment change after adherence interventions, such as STAR. Nonsignificant findings can inform the development of future study designs and intervention efforts.


Assuntos
Epilepsia , Adolescente , Humanos , Criança , Epilepsia/psicologia , Grupos de Autoajuda , Inquéritos e Questionários , Protocolos Clínicos , Adesão à Medicação/psicologia
2.
J Palliat Med ; 26(5): 674-683, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36480799

RESUMO

Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns of care among infants who died in the NICU. Method: Retrospective electronic medical record (EMR) review of 476 infants who died following admission to a large regional level IV NICU in the United States over a 10-year period. Demographic, symptom, diagnosis, treatment, and end-of-life characteristics were extracted. Results: About half of infants were male (55.9%, n = 266), average gestational age was 31.3 weeks (standard deviation [SD] = 6.5), and average age at death was 40.1 days (SD = 84.5; median = 12; range: 0-835). Race was documented for 65% of infants, and most were White (67.0%). One-third of infants (n = 138) were seen by fetal medicine. Most infants experienced pain through both the month and week before death (79.6%), however, infants with necrotizing enterocolitis had more symptoms in the week before death. Based on EMR, infants had more symptoms, and received more medical interventions and comfort measures during the week before death compared with the month prior. Only 35% (n = 166) received a palliative care referral. Conclusions: Although the medical profiles of infants who die in the NICU are complex, the overall number of symptoms was less than in older pediatric populations. For infants at high risk of mortality rate, providers should assess for common symptoms over time. To manage symptoms as effectively as possible, both timely and continuous communication with parents and early referral to palliative care are recommended.


Assuntos
Estado Terminal , Unidades de Terapia Intensiva Neonatal , Recém-Nascido , Lactente , Humanos , Masculino , Criança , Idoso , Feminino , Estudos Retrospectivos , Cuidados Paliativos , Morte
3.
J Pediatr Psychol ; 48(2): 144-155, 2023 02 21.
Artigo em Inglês | MEDLINE | ID: mdl-36164839

RESUMO

OBJECTIVE: Caregiver expressed emotion (EE), an interview-based measure of emotional valence within an interpersonal relationship, is associated with psychosocial outcomes across multiple conditions. Guided by a model implicating a bidirectional role of "Chronic Family Stress" in the unfolding of EE in family environments, the current study examined demographic, medical, and family-level variables in association with EE in caregivers of children with spina bifida (SB). METHODS: Data were combined from 2 distinct studies of families with a child with SB, resulting in a sample of 174 (ages 8-17). Linear regressions examined the family stressors and child variables in association with maternal and paternal warmth and criticism, as coded from EE interviews. RESULTS: Higher levels of family stress were associated with paternal criticism (p = .03), while having non-Hispanic White children was associated with both maternal and paternal criticism (ps < .005). Having children younger in age (ps < .01) and without a shunt (ps < .01) was associated with higher warmth. CONCLUSIONS: Family stressors, absence of the negative impacts of systemic racism, shunt status, and age appear to be associated with the expression of EE in caregivers of a child with SB. Findings highlight multiple assessment considerations, including assessing EE when children are younger to engage caregivers with children with SB when they are more likely to be expressing more warmth. Pinpointing factors associated with caregiver EE in SB will help to better identify families at risk for high levels of criticism and also aid in the development of targeted prevention and intervention programs.


Assuntos
Emoções Manifestas , Disrafismo Espinal , Criança , Humanos , Adolescente , Cuidadores/psicologia , Família/psicologia , Disrafismo Espinal/psicologia , Demografia
4.
J Pediatr Psychol ; 47(10): 1195-1206, 2022 10 19.
Artigo em Inglês | MEDLINE | ID: mdl-35818344

RESUMO

OBJECTIVE: This study examined marital satisfaction among parents of youth with spina bifida (SB) over an 8-year period and investigated the usefulness of the double ABCX model for understanding factors that predict change in marital satisfaction across child age. METHODS: Data from five time points of a longitudinal investigation of psychosocial outcomes in youth with SB were included. Mothers and fathers of children with SB (aged 8-17) reported on marital satisfaction and components of the double ABCX model. Change in marital satisfaction was examined across child age with components of the double ABCX model, as well as interactions between components, as predictors. RESULTS: Marital satisfaction was significantly higher in the present sample than in a normative sample of married couples. Although there were no significant changes in marital satisfaction for either parent as a function of child age, there was significant variability for the intercept and slope of maternal and paternal marital satisfaction within the sample. Family support predicted a higher intercept, and mental health symptoms predicted a lower intercept, for maternal and paternal marital satisfaction. More stressors and SB-related family stress predicted a lower intercept for paternal marital satisfaction. Family support and family stress attributed to SB moderated the relationship between child vulnerability and maternal marital satisfaction. Observed family cohesion and child psychosocial quality of life moderated the relationship between family stressors and paternal marital satisfaction. CONCLUSION: Findings demonstrate the usefulness of the double ABCX model for this population.


Assuntos
Qualidade de Vida , Disrafismo Espinal , Criança , Masculino , Feminino , Adolescente , Humanos , Qualidade de Vida/psicologia , Satisfação Pessoal , Pais/psicologia , Pai/psicologia , Disrafismo Espinal/psicologia
5.
J Pediatr Psychol ; 47(8): 916-928, 2022 08 12.
Artigo em Inglês | MEDLINE | ID: mdl-35303090

RESUMO

OBJECTIVE: The aim of this study was to examine whether maternal parenting behaviors (i.e., warmth, behavioral/psychological control) moderate the association between central nervous system (CNS)-directed treatment and adjustment among pediatric cancer survivors at 3 years post-diagnosis or relapse. METHODS: Three years after their child's cancer diagnosis or relapse, mothers (N = 84) reported on their child's academic and social competence, as well as their internalizing and externalizing problems. Children (N = 84; Mage = 13.21 years, 52.4% male) reported on maternal parenting behaviors. Using medical chart data, children were separated into CNS (i.e., received cranial radiation, intrathecal chemotherapy, and/or neurosurgery; N = 45) or non-CNS-directed treatment (N = 39) groups. Twelve moderation models were tested when examining two-way interactions between CNS treatment group and maternal parenting behaviors. RESULTS: Children in the CNS-directed treatment group demonstrated significantly worse academic and social competence. Moderation analyses revealed four significant two-way interactions between CNS treatment group and maternal parenting behaviors when predicting children's adjustment. High levels of maternal behavioral control buffered the negative impact of CNS-directed treatment on children's social competence. In addition, maternal warmth had a contrasting effect, as CNS-directed treatment was associated with worse academic competence at high levels of warmth. Analyses with psychological control revealed that low levels of this parenting style were not protective against internalizing or externalizing problems among those with CNS-directed treatment. CONCLUSIONS: Children who receive CNS-directed treatment may benefit from a different pattern of parenting during early cancer survivorship. Findings highlight the importance of considering the broader family context when conceptualizing the impact of illness-related factors on adjustment among pediatric cancer survivors.


Assuntos
Neoplasias , Poder Familiar , Criança , Comportamento Infantil/psicologia , Feminino , Humanos , Masculino , Comportamento Materno , Mães/psicologia , Poder Familiar/psicologia , Recidiva
7.
Child Care Health Dev ; 48(4): 623-633, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35043413

RESUMO

BACKGROUND: Although the academic difficulties of children with spina bifida (SB) are well-documented, there is limited literature on parents' views of their children's school experiences and school-related supportive services. Thus, the current study examined parents' school-related concerns, as well as perceived areas of strength, among children with SB. METHODS: Using a mixed-methods approach, 30 families (29 mothers and 19 fathers) of children with SB (ages 8-15 years) completed questionnaires and interviews. Content analysis was used to generate themes from interview data about parents' school-related concerns and perceptions of their child's strengths. RESULTS: Overall, six themes emerged when assessing both parents' concerns and perceived strengths. Some parents did not endorse school concerns or strengths for their child. However, other parents described concerns related to academic performance, cognitive abilities, lack of school support, missed school and/or class time and disengagement, as well as strengths such as academic skills, cognitive abilities, persistence, self-advocacy and agreeableness. Despite parents' concerns about their children's academic performance, quantitative data revealed that less than 50% of children had received a neuropsychological evaluation and/or academic accommodations; additional quantitative data supported the qualitative findings. CONCLUSIONS: The mixed-methods approach used in this study provides a richer understanding of parents' experiences in the school setting when they have a child with SB. Results can inform clinical practice, identifying a need to improve academic support for children with SB and help parents manage education-related stressors.


Assuntos
Pais , Disrafismo Espinal , Adolescente , Criança , Feminino , Humanos , Mães/psicologia , Pais/psicologia , Instituições Acadêmicas , Disrafismo Espinal/psicologia , Inquéritos e Questionários
8.
Child Psychiatry Hum Dev ; 53(3): 418-429, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-33599886

RESUMO

The present research examined recognition of basic (happy, fear, sad) and self-conscious (pride, embarrassment, guilt) emotions from situational contexts in children with Autism Spectrum Disorder (ASD) and neurotypical children (Study 1). Results showed that children with ASD were less accurate in recognizing fear, embarrassment, and guilt situations than neurotypical children. Additionally, the research explored whether recognition of these emotions from situational contexts could be improved in children with ASD after a 4-week computerized emotion intervention (Study 2). Following the intervention, children showed better recognition of embarrassment and guilt, but no improvement in recognizing fear. In children with ASD, significant negative relations were found between ASD symptomatology and recognition of guilt (Study 1), although ASD symptomatology did not impact the intervention's efficacy (Study 2). Additional explanations for these findings are provided.


Assuntos
Transtorno do Espectro Autista , Transtorno do Espectro Autista/psicologia , Transtorno do Espectro Autista/terapia , Criança , Emoções , Culpa , Felicidade , Humanos , Reconhecimento Psicológico
9.
Health Psychol ; 40(10): 692-701, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-34881937

RESUMO

OBJECTIVE: For youth with spina bifida (SB) there is a growing need to understand how responsibilities for health care are transferred from family- to self-management over time. The current study examined trajectories of responsibility for medical tasks in youth with SB across adolescence, as well as executive functioning/attention and parenting behaviors as predictors of growth. METHOD: As part of a larger, longitudinal study, 140 youth with SB (ages 8-15 at time 1; Mage = 11.43) reported on their responsibility for relevant medical tasks across five time points. Attention and executive functioning were assessed via performance-based and parent/teacher-report methods. Parenting behaviors consisted of acceptance, behavioral control, and psychological control and were assessed via observational and parent-report. RESULTS: Growth curve analyses revealed significant increases in youth medical responsibility across all SB tasks over time. Attention, executive functioning, maternal behavioral control, and paternal psychological control emerged as predictors of growth parameters in responsibility for communicating about SB and managing health care appointments. CONCLUSION: Results indicated that youth with SB obtain increasing responsibility for their health care over time. The transfer of responsibility for SB management may differ based on individual (i.e., the child's neuropsychological abilities) and family level (i.e., parenting behaviors) factors. Further research is needed to understand how growth in medical responsibility relates to changes in other aspects of SB self-management across development, such as medical adherence. (PsycInfo Database Record (c) 2021 APA, all rights reserved).


Assuntos
Poder Familiar , Disrafismo Espinal , Adolescente , Criança , Pai , Humanos , Estudos Longitudinais , Masculino , Pais
10.
J Pediatr Psychol ; 46(9): 1076-1090, 2021 09 27.
Artigo em Inglês | MEDLINE | ID: mdl-34382081

RESUMO

OBJECTIVE: This review synthesizes the literature on benefit-finding and growth (BFG) among youth with medical illnesses and disabilities and their parents. Specifically, we summarized: (a) methods for assessing BFG; (b) personal characteristics, personal, and environmental resources, as well as positive outcomes, associated with BFG; (c) interventions that have enhanced BFG; and (d) the quality of the literature. METHODS: A medical research librarian conducted the search across PubMed, Scopus, PsycInfo, Google Scholar, and Cochrane Library. Studies on BFG among children ages 0-18 with chronic illnesses and disabilities, or the parents of these youth were eligible for inclusion. Articles were uploaded into Covidence; all articles were screened by two reviewers, who then extracted data (e.g., study characteristics and findings related to BFG) independently and in duplicate for each eligible study. The review was based on a systematic narrative synthesis framework and adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (PROSPERO registration number: CRD42020189339). RESULTS: In total, 110 articles were included in this review. Generally, BFG capabilities were present across a range of pediatric health conditions and disabilities. Correlates of both youth and parent BFG are presented, including personal and environmental resources, coping resources, and positive outcomes. In addition, studies describing interventions aimed at enhancing BFG are discussed, and a quality assessment of the included studies is provided. CONCLUSIONS: Recommendations are provided regarding how to assess BFG and with whom to study BFG to diversify and extend our current literature.


Assuntos
Adaptação Psicológica , Pais , Adolescente , Criança , Pré-Escolar , Humanos , Lactente , Recém-Nascido
11.
Pediatr Blood Cancer ; 68(9): e29220, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34245215

RESUMO

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.


Assuntos
Neoplasias Encefálicas , Sobreviventes de Câncer , Ajustamento Social , Adolescente , Ansiedade , Neoplasias Encefálicas/psicologia , Neoplasias Encefálicas/terapia , Sistema Nervoso Central , Criança , Pré-Escolar , Irradiação Craniana , Depressão , Pai , Feminino , Humanos , Masculino , Mães , Recidiva Local de Neoplasia
12.
J Pediatr Rehabil Med ; 14(4): 583-596, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33935116

RESUMO

PURPOSE: The purpose of this longitudinal study was to evaluate the internal consistency reliability and construct validity of the Adolescent/Young Adult Self-Management and Independence Scale-II (AMIS-II), an interview-based measure of self-management for youth with chronic health conditions. METHODS: A diverse sample of adolescents and young adults (AYA) with spina bifida (SB) (n = 64 AYA; mean 20.88; age range 18-25 years) completed an AMIS-II interview. Six years earlier, parents from 55 families completed questionnaires that assessed children's responsibility for SB-related care (Sharing of Spina Bifida Management Responsibilities) and their ability to perform skills across condition-related tasks (The Spina Bifida Independence Survey). Parents also reported on child's communication skills, adaptive behaviors, and independent management of finances (Adaptive Behavior Assessment System-Second Edition; Scales of Independent Behavior-Revised). Descriptive and correlational analyses were conducted to assess the construct validity and the internal consistency reliability of the AMIS-II. RESULTS: The AMIS-II demonstrated excellent internal consistency reliability (AMIS-II total scale α= 0.95; subscales α= 0.90 -0.91). Evidence in support of construct validity was found in associations between the AMIS-II and measures of child responsibility for SB-related care, ability to perform condition-related skills, and adaptive behaviors (r's = 0.378 -0.777; p's < 0.05). CONCLUSION: This study provides further evidence of strong reliability and validity for the AMIS-II. Additional research with this measure will facilitate a better understanding of factors related to self-management behaviors in adolescents and young adults with spina bifida.


Assuntos
Autogestão , Disrafismo Espinal , Adolescente , Adulto , Criança , Humanos , Estudos Longitudinais , Reprodutibilidade dos Testes , Disrafismo Espinal/terapia , Inquéritos e Questionários , Adulto Jovem
14.
Child Neuropsychol ; 27(4): 447-467, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33386061

RESUMO

Little is known about how youth with spina bifida (SB) acquire adaptive functioning skills across development. Therefore, the current study examined: (1) trajectories of adaptive functioning in youth with SB as they transitioned from childhood into adolescence, and (2) neuropsychological functioning as a potential risk factor for long-term adaptive functioning difficulties. Participants (n = 131 youth with SB) were recruited as part of a larger ongoing longitudinal study. Growth curves were used to examine changes over time across six adaptive functioning skills: communication, self-direction, functional academics, social, self-care, and home living skills. Additionally, youth's attention and executive functioning (i.e., working memory, planning/organizational skills, cognitive flexibility, inhibition) were assessed via questionnaires and performance-based assessments, and entered as predictors in the models. Youth's communication, self-direction, functional academics, self-care, and home living skills increased over time across age, whereas youth's social skills did not. Scaled scores for youth's social, communication, self-direction, and functional academics skills were generally within normal limits, whereas those for self-care and home living skills fell in the borderline range. Better attention and executive functioning predicted a higher intercept for many adaptive functioning abilities at 11.5 years old, above and beyond the influence of IQ. However, these variables did not predict growth in adaptive functioning. Results indicate that youth with SB acquire skills across development to better meet the demands of daily life. However, youth with poorer neurocognitive functioning may demonstrate adaptive functioning deficits in early childhood and benefit from timely intervention.


Assuntos
Atenção/fisiologia , Desenvolvimento Infantil , Função Executiva/fisiologia , Habilidades Sociais , Disrafismo Espinal/psicologia , Criança , Feminino , Humanos , Estudos Longitudinais , Masculino , Inquéritos e Questionários
15.
J Patient Saf ; 17(8): 531-540, 2021 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-32175958

RESUMO

OBJECTIVE: The aim of the study was to validate a revised version of the Second Victim Experience and Support Tool (SVEST-R). The SVEST survey instrument was developed to measure the emotional and professional impact of medical errors and adverse patient events on healthcare providers and can help healthcare organizations evaluate the effectiveness of support resources. METHODS: An SVEST-R was completed by 316 healthcare providers from seven neonatal intensive care units affiliated with a large, pediatric hospital. The original 29-item measure was expanded to 43 items to assess eight psychosocial domains (psychological distress, physical distress, colleague support, supervisor support, institutional support, nonwork-related support, professional self-efficacy, resilience) and two employment-related domains (turnover intentions, absenteeism) associated with the second victim experience. Seven additional items assessed desired forms of support (e.g., time away from the unit). A confirmatory factor analysis evaluated the factor structure of the modified measure. RESULTS: The initial confirmatory factor analysis did not reveal an acceptable factor structure; thus, eight items were removed because of inadequate factor loadings or for conceptual reasons. This resulted in an acceptable model for the final 35-item measure. The final version included nine factors (i.e., psychological distress, physical distress, colleague support, supervisor support, institutional support, professional self-efficacy, resilience, turnover intentions, and absenteeism), with Cronbach α ranging from 0.66 to 0.86. CONCLUSIONS: The SVEST-R is a valid measure for assessing the impact of errors or adverse events on healthcare providers. Importantly, the SVEST-R now includes positive outcomes (i.e., resilience) that may result from the second victim experience.


Assuntos
Unidades de Terapia Intensiva Neonatal , Erros Médicos , Criança , Pessoal de Saúde , Humanos , Recém-Nascido , Organizações , Reprodutibilidade dos Testes , Inquéritos e Questionários
16.
J Pediatr Psychol ; 46(3): 341-350, 2021 03 18.
Artigo em Inglês | MEDLINE | ID: mdl-33236095

RESUMO

OBJECTIVE: To examine the predictive role of social skills in youth with spina bifida (SB) on growth in medical responsibility across development. METHODS: As part of a larger, longitudinal study, 140 youth with SB were assessed across four time points (ages 8-22 across time points). Mixed-effects models were investigated for change with: (a) no predictors (i.e., change in medical responsibility across age; time was examined using the participant's age, centered at 11.5 years); (b) social variables (i.e., observed social behaviors, parent- and teacher-reported social skills) as predictors; and (c) social variables as predictors with intelligence quotient, lesion level, and sex as covariates. RESULTS: Significant growth with age was identified for medical responsibility (p < .0001). Observed, parent-reported, and teacher-reported social skills did not significantly predict this growth; however, all three predicted the intercept for medical responsibility at 11.5 years of age (ps ≤ .047). Parent-reported social skills remained a significant predictor of the intercept at 11.5 years of age when including the covariates (p = .008). CONCLUSIONS: Children with SB who exhibited more positive social skills were more likely to a have higher level of medical responsibility in late childhood, but higher levels of social skills were not associated with a more rapid increase in responsibility over time. Identifying existing social strengths and promoting the practice of prosocial skills may have additional benefits to children with SB, including their acquisition of medical responsibility.


Assuntos
Habilidades Sociais , Disrafismo Espinal , Adolescente , Adulto , Criança , Humanos , Estudos Longitudinais , Pais , Comportamento Social , Adulto Jovem
17.
J Child Fam Stud ; 29(4): 1081-1093, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-33343178

RESUMO

OBJECTIVES: Bereaved siblings experience more externalizing problems compared to non-bereaved peers and norms; however, the mechanisms explaining this phenomenon have not been empirically examined. This study tested the serial indirect effects of sibling bereavement on adolescents' externalizing problems through parent distress (i.e., internalizing symptoms) and parenting (i.e., parenting behaviors, parent-adolescent communication). METHODS: During home visits, 72 bereaved adolescents (ages 10-18) whose brother/sister died from cancer and 60 comparison peers reported about their externalizing problems and their mothers' and fathers' parenting behaviors (warmth, behavioral control, psychological control) and parent-adolescent communication (open communication, problematic communication). Mothers and fathers reported their own internalizing symptoms. RESULTS: Bereaved siblings reported more externalizing problems (p =.048) and bereaved mothers reported more internalizing symptoms relative to the comparison group (p =.015). Serial multiple mediation models indicated that elevated externalizing problems were partially explained by both bereaved mothers' internalizing symptoms and parenting and communication (less warmth [CI: 0.04, 0.86], more psychological control [CI: 0.03, 0.66], and more problematic mother-adolescent communication [CI: 0.03, 0.79]), with a significant indirect effect also emerging for open mother-adolescent communication [CI: 0.05, 1.59]. Bereaved fathers did not significantly differ in internalizing symptoms from comparison fathers (p =.453), and no significant indirect effects emerged for fathers. CONCLUSIONS: Elevated externalizing problems in bereaved siblings may result from mothers' distress and the impact on their parenting and communication. Targeting adjustment and parenting in bereaved mothers following a child's death may reduce externalizing problems in bereaved siblings. Research to evaluate family-centered interventions is needed.

18.
J Pediatr Psychol ; 45(10): 1199-1207, 2020 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-32930722

RESUMO

OBJECTIVE: Children diagnosed with cancer experience stress associated with their diagnosis and treatment and are at heightened risk for problems in social adjustment. This study investigated the association between coping with cancer-related stress and problems in social adjustment across the first year after a pediatric cancer diagnosis. METHODS: Mothers of children (ages 5-17 years) with cancer (N = 312) were recruited from two children's hospitals. Mother's reported on their child's social adjustment and coping near diagnosis (T1) and 12 months (T2). RESULTS: Primary, secondary control, and disengagement coping were significantly associated with concurrent social adjustment at 12 months. The bivariate associations between baseline primary and secondary control coping and social problems 12 months later were no longer significant in a multivariate regression model. CONCLUSIONS: These findings inform our understanding of the association between coping with cancer-related stress and social adjustment of children diagnosed with cancer. Interventions teaching primary and secondary control coping strategies for cancer-related stressors may offer some benefit to concurrent youth social adjustment. Further research is needed on how best to support social adjustment in this population over time.


Assuntos
Neoplasias , Ajustamento Social , Adaptação Psicológica , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Mães , Apoio Social , Estresse Psicológico
19.
J Pediatr Psychol ; 45(6): 673-684, 2020 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-32483627

RESUMO

OBJECTIVE: This study examined: (a) the nature and prevalence of pain in youth with spina bifida (SB) (b) common coping responses to pain, and (c) longitudinal, bi-directional associations between internalizing symptoms and pain characteristics. METHODS: Data were collected from youth (N = 140, 53.6% female, ages 8-15 at Time 1) and their parents and teachers at two time points spaced 2 years apart. Youth reported on several pain characteristics and coping responses. Multiple informants reported on child internalizing symptoms. Evaluation of Aims 1-3 was based on descriptive analyses, bivariate correlations, and linear and logistic regressions. RESULTS: About 25% of the sample reported chronic pain (e.g., experiencing pain one or more times per week over the past 3 months) at Time 1 or 2, with roughly one-third of this chronic pain subsample reporting chronic pain both time points. Pain was usually rated as mild in intensity for the full sample and most commonly experienced in the head, abdomen, and back, and described as "aching." Youth with chronic pain reported significantly higher pain intensity and tended to use condition-specific methods to cope with pain (e.g., taking off braces). In 2 of 10 analyses, internalizing symptoms at Time 1 were associated with chronic pain and pain intensity at Time 2. CONCLUSIONS: Roughly one-fourth of youth with SB are at risk for experiencing chronic pain, highlighting the need for increased assessment and treatment of pain in this population. Youth psychological functioning appears to more often precede, rather than being a consequence of pain symptoms.


Assuntos
Adaptação Psicológica , Dor , Disrafismo Espinal , Adolescente , Criança , Família , Feminino , Humanos , Masculino , Dor/epidemiologia , Dor/etiologia , Disrafismo Espinal/complicações , Disrafismo Espinal/epidemiologia
20.
J Pediatr Psychol ; 45(6): 695-706, 2020 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-32567662

RESUMO

OBJECTIVE: To examine the reliability and validity of a new observational measure of parental scaffolding, as well as the impact of parental scaffolding on academic and social outcomes among youth with spina bifida (SB). METHODS: As part of a larger study, 137 families of youth with SB participated in family interaction tasks and self-report questionnaires at the baseline assessment. Teachers also reported on youth's academic independence and competence, as well as social skills. Guided by previous research and theoretical formulations, a rational approach to measure development was employed whereby maternal and paternal scaffolding composites were created using the Family Interaction Macro-coding System (Holmbeck, Zebracki, Johnson, Belvedere, & Hommeyer (2007). Parent-child interaction macro-coding manual. Unpublished coding system. Chicago: Loyola University Chicago). RESULTS: The scaffolding measure demonstrated acceptable interrater and scale reliabilities. Additionally, both the maternal and paternal scaffolding composites were significantly associated with scores from self-report questionnaires of parenting behaviors in the expected directions. Maternal scaffolding was positively associated with IQ, academic competence, academic independence, and social self-control in youth with SB, whereas paternal scaffolding was positively associated with social cooperation and social self-control. Differences in scaffolding emerged between mothers and fathers, as well as across demographic variables. CONCLUSION: Initial findings support the use of the scaffolding measure. Future research should continue to examine the utility of this scaffolding measure in families of youth with SB.


Assuntos
Poder Familiar , Disrafismo Espinal , Adolescente , Chicago , Criança , Feminino , Humanos , Masculino , Pais , Reprodutibilidade dos Testes , Inquéritos e Questionários
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