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BACKGROUND: Siblings of youth with cancer have heightened risk for poor long-term psychosocial outcomes. Although sibling psychosocial care is a standard in pediatric oncology, this standard is among those least likely to be met. To address barriers to providing sibling services, a blueprint for systematic psychosocial screening and support of siblings was developed based on feedback from a national sample of psychosocial providers. PROCEDURE: Semi-structured interviews were conducted with a purposive sample of psychosocial care providers (N = 27) of various disciplines working in US pediatric cancer centers, varied in size, type, and extent of sibling support. Interviews queried providers' suggestions for the future of sibling psychosocial care and impressions of a blueprint for sibling service delivery, which was iteratively refined based on respondents' feedback. Interviews were analyzed using applied thematic analysis. RESULTS: Based on existing literature and refined according to providers' recommendations, the Sibling Services Blueprint was developed to provide a comprehensive guide for systematizing sibling psychosocial care. The blueprint content includes: (i) a timeline for repeated sibling screening and assessment; (ii) a stepped model of psychosocial support; (iii) strategies for circumventing barriers to sibling care; and (iv) recommendations for how centers with varying resources might accomplish sibling-focused care. The blueprint is available online, allowing providers to easily access and individualize the content. Providers indicated enthusiasm and high potential utility and usability of the blueprint. CONCLUSIONS: The Sibling Services Blueprint may be a useful tool for systematizing sibling psychosocial care, promoting wider availability of sibling-focused services, and addressing siblings' unmet needs.
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Irmãos , Humanos , Irmãos/psicologia , Feminino , Masculino , Neoplasias/psicologia , Neoplasias/terapia , Criança , Adolescente , Apoio SocialRESUMO
BACKGROUND: Sickle cell disease (SCD) pain is associated with functional impairment, and treatment is often limited to pharmacological approaches with unwanted side effects. Although behavioral interventions exist for non-SCD pain populations, interventions designed to address pain-related impairment in SCD are lacking. METHODS: Twenty youth (9-17 years) with SCD completed a four-week telemedicine pain intervention (NCT04388241). Participants and caregivers completed baseline and post-intervention PROMIS pain measures and the Treatment Evaluation Inventory-Short Form (TEI-SF). Descriptive analyses assessed feasibility and acceptability. Reliable Change Index analyses assessed for significant post-intervention changes in pain functioning. Paired t test analyses compared baseline and post-intervention opioid prescription fills. RESULTS: All participants completed at least one treatment session. Eighteen (90%) youth completed all sessions. Youth (100%) and caregivers (94%) rated the intervention as moderately or highly acceptable on the TEI-SF. Forty-seven percent of caregivers and 44% of youth reported reliably significant improvements in pain interference after the intervention (median T-score differences: 24.8 and 23.5, respectively). Sixty-five percent of caregivers (T-score improvement difference: 19.3) and 31% of youth (T-score improvement difference: 32) reported improvements in pain behaviors. There was no significant difference in opioid prescription fills pre- and post-intervention (P > 0.05). CONCLUSIONS: The Balance Program is feasible, highly acceptable, and can be delivered remotely to reduce barriers to care. Approximately half of youth and caregivers reported significant declines in pain interference following the intervention, with substantial improvements in functioning for treatment responders. Behavioral pain interventions are important adjunctive treatments to uniquely address functional impairment associated with acute and chronic pain in SCD.
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Background: College students experience increased responsibility for healthcare transition. They are at increased risk for depressive symptoms and cannabis use (CU), potentially modifiable predictors of successful healthcare transition. This study investigated how depressive symptoms and CU related to transition readiness, and if CU moderated the association between depressive symptoms and transition readiness for college students. Methods: College students (N = 1,826, Mage=19.31, SD = 1.22) completed online measures of depressive symptoms, healthcare transition readiness, and past-year CU. Regression identified 1) the main effects of depressive symptoms and CU on transition readiness and 2) examined if CU moderated the relationship between depressive symptoms and transition readiness with chronic medical conditions (CMC) status as a covariate. Results: Higher depressive symptoms were correlated with past-year CU (r=.17, p<.001) and lower transition readiness (r=-0.16, p<.001). In the regression model, higher depressive symptoms were related to lower transition readiness (ß=-0.02, p<.001); CU was not related to transition readiness (ß=-0.10, p=.12). CU moderated the relationship between depressive symptoms and transition readiness (B=.01, p=.001). The negative relationship between depressive symptoms and transition readiness was stronger for those with no past-year CU (B=-0.02, p<.001) relative to those with a past-year CU (ß=-0.01, p<.001). Finally, having a CMC was related to CU and higher depressive symptoms and transition readiness. Conclusions: Findings highlighted that depressive symptoms may hinder transition readiness, supporting the need for screening and interventions among college students. The finding that the negative association between depressive symptoms and transition readiness was more pronounced among those with past-year CU was counterintuitive. Hypotheses and future directions are provided.
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Cannabis , Transição para Assistência do Adulto , Humanos , Depressão/diagnóstico , EstudantesRESUMO
PURPOSE/OBJECTIVE: The stressors experienced by parents of children admitted for inpatient rehabilitation likely place parents at high risk for poor psychosocial adjustment; however, no research to date has described parent adjustment during the acute phase of a child's inpatient rehabilitation hospitalization. The present study evaluates parent adjustment processes through the lens of the transactional stress and coping model by assessing a specific cognitive process (i.e., illness uncertainty) and coping methods (i.e., self-care), which may influence parent adjustment during the inpatient rehabilitation. RESEARCH METHOD/DESIGN: Forty-two parents (47.6% White, 86% female) of children newly admitted to a pediatric inpatient rehabilitation hospital were recruited. Parents completed self-report measures of demographics, illness uncertainty, self-care, and depressive, anxious, and posttraumatic stress symptoms. RESULTS: Sixty-six percent of parents reported clinically significant symptoms in at least one domain of distress. Illness uncertainty accounted for 22.2%-42.4% of the variance in parent distress symptoms, after controlling for parent and child age, parent trauma history, and income. Self-care accounted for 35.1%-51.9% of the variance in parent distress symptoms, when accounting for parent and child age, parent trauma history, and income. CONCLUSIONS/IMPLICATIONS: More than half of parents endorsed clinical elevations in anxiety, depression, and/or posttraumatic stress. Illness uncertainty and self-care are likely very important clinical topics to discuss with parents. Future research should seek to not only assess how parent distress changes across time, but also how other cognitive processes, as well as environmental and family factors influence the parent adjustment process. (PsycInfo Database Record (c) 2023 APA, all rights reserved).
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Pacientes Internados , Autocuidado , Criança , Humanos , Feminino , Masculino , Incerteza , Pais/psicologia , Ansiedade/psicologia , Estresse PsicológicoRESUMO
INTRODUCTION: Adolescents and young adults (AYA) with a chronic medical condition (CMC) attending college must learn to manage their own healthcare (i.e., transition readiness). Maturity has been linked to positive outcomes in AYAs. Research has established a positive relationship between transition readiness and quality of life. The current study aimed to examine a model of perceived maturityàtransition readinessàmental and physical quality of life. METHOD: AYA (N = 153) with a CMC completed self-report questionnaires. RESULTS: The perceived maturityâtransition readinessâmental quality of life indirect path was significant (ab = 1.96, 95% CI = 0.53 to 3.62). The perceived maturityâtransition readinessâphysical quality of life direct and indirect paths were not significant. DISCUSSION: Results showed that maturity and transition readiness are positively associated. Transition readiness may be one mechanism by which maturity results in enhanced quality of life. PRACTICE IMPLICATIONS: Findings highlight the value of enhancing strengths such as maturity to promote AYA independence/autonomy.
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Qualidade de Vida , Transição para Assistência do Adulto , Adulto Jovem , Adolescente , Humanos , Inquéritos e Questionários , Doença CrônicaRESUMO
BACKGROUND: Although providing sibling psychosocial services is a standard of care in pediatric oncology, initial survey research suggests that this standard is rarely achieved and siblings' support needs remain unmet. Which sibling psychosocial services are available and how centers provide such services is unknown. To identify targetable services gaps, this qualitative study characterizes current sibling psychosocial care practices at select pediatric cancer centers across the United States. PROCEDURE: Semi-structured interviews were conducted with a purposive sample of psychosocial care providers (N = 27) working across the United States in pediatric oncology centers of varied sizes. Interviews queried providers regarding sibling-focused parent psychoeducation, psychosocial screening, comprehensive assessment, and psychosocial support offerings. Interview data were analyzed using Applied Thematic Analysis. RESULTS: Across cancer centers, sibling care practices did not align with consensus-based recommendations. The nature and availability of sibling-focused psychoeducation, screening, assessment, and support were variable between and within centers. Siblings themselves were largely absent from sibling psychosocial care, and care was rarely sibling-specific. The flow of information about siblings was discontinuous and uncoordinated across the care continuum, resulting in psychosocial care provided reactively, typically in response to parental concerns. CONCLUSIONS: Sibling psychosocial care provision falls short of established care recommendations, leaving sibling psychosocial needs unmet. Findings highlight the need for tools and strategies to facilitate the implementation of sibling psychosocial care across the care continuum, to support siblings' psychosocial functioning across the life course.
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Neoplasias , Reabilitação Psiquiátrica , Humanos , Criança , Irmãos/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Oncologia , Pais/psicologiaRESUMO
OBJECTIVE: Adolescents and young adults in the college setting often report poor sleep hygiene and quality. These sleep difficulties may be related to emotion dysregulation, which is highly relevant to broader adjustment. The current study aimed to empirically identify latent groups of healthy college students with distinct subjective sleep patterns and examine differences in emotion dysregulation between subgroups. METHODS: College students (N = 476; Mage=19.38) completed the Adolescent Sleep-Wake Scale-Revised, Adolescent Sleep Hygiene Scale-Revised, and Difficulties in Emotion Dysregulation Scale. Most participants were White (78%), non-Hispanic/Latinx (85%), and female (77%). Latent profile analysis identified patterns of sleep with maximum likelihood estimation. Bolck-Croon-Hagenaars procedure evaluated differences in emotion dysregulation by class. RESULTS: A three-class model had optimal fit, Bayesian information criterion = 11,577.001, Bootstrapped Parametric Likelihood Ratio Test = -5,763.042, p < .001, entropy = .815. The three profiles identified were good sleep (overall high sleep quality and hygiene; n = 219), moderate sleep (low sleep quality with mix of low and high sleep hygiene; n = 221), and poor sleep (very low sleep quality and hygiene; n = 36). Those in the good sleep group (M = 68.06, SE = 1.5) reported significantly less emotion dysregulation than the moderate sleep group (M = 92.12, SE = 1.67; X2(2) = 98.34, p = .001) and the poor sleep group (M = 99.51, SE = 4.10; p < .001). The moderate and poor sleep groups did not significantly differ, X2(2) = 2.60, p = .11. CONCLUSIONS: Emotion dysregulation differed across three sleep profiles, with participants classified in the good sleep group reporting, on average, the lowest emotion dysregulation, compared to the moderate and poor sleep groups. These findings highlight contextual factors of sleep that may be clinically targeted to promote emotion regulation.
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Distúrbios do Início e da Manutenção do Sono , Transtornos do Sono-Vigília , Adolescente , Teorema de Bayes , Emoções , Feminino , Humanos , Sono , Transtornos do Sono-Vigília/psicologia , Universidades , Adulto JovemRESUMO
BACKGROUND: Siblings of children with cancer are at increased risk for poor long-term psychosocial outcomes. The standard of psychosocial care in pediatric oncology calling for sibling support is not routinely implemented, often leaving siblings with unmet psychosocial needs. Barriers to implementing the sibling standard may exist at multiple levels. This study addresses research gaps regarding multilevel barriers to supporting siblings at the health care system, oncology center, and family levels. PROCEDURE: Qualitative interviews were conducted with psychosocial care providers (N = 27; 18 psychologists, five social workers, three psychiatrists, and one child life specialist) employed at oncology centers within hospitals across the United States, varying in extent of sibling programming and center size. Interviews included questions about providers' roles, oncology center characteristics, existing psychosocial sibling services, barriers to providing systematic sibling assessment, and ideas about how to overcome barriers. Data were analyzed using applied thematic analysis. RESULTS: Qualitative analysis revealed (a) barriers to providing sibling services occur at multiple levels (health care system, oncology center, family); (b) barriers at multiple levels frequently interact with one another; and (c) interacting barriers maintain a cycle: barriers to providing services contribute to limited provision of services, low service provision leads to limited utilization of existing services and underprioritization of siblings, and together this leads to siblings being off the radar, which further limits sibling service provision. CONCLUSION: Addressing health care system and oncology center barriers to implementing sibling assessment and support may be important potential targets for interventions to help ensure that siblings receive needed psychosocial assessment and support.
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Neoplasias , Reabilitação Psiquiátrica , Criança , Humanos , Oncologia , Avaliação das Necessidades , Neoplasias/psicologia , Neoplasias/terapia , Irmãos/psicologiaRESUMO
OBJECTIVE: Neurocognitive impairments and psychological distress are among the most common difficulties experienced by children treated for cancer. Elevated rates of suicidal ideation (SI) are documented among cancer survivors, and a link between neurocognitive deficits and SI is evident, yet the relationship between SI and pediatric cancer-related neurocognitive effects has not yet been studied. PARTICIPANTS AND METHODS: Participants were 166 pediatric cancer patients (57.8% Brain Tumor, 31.3% leukemia, 10.8% other cancers) aged 6-23 (M = 11.57, SD = 3.82; 45.8% female) referred for neuropsychological surveillance. SI prevalence was measured by parent, teacher, or patient endorsement of self-harm related items on informant-report measures (e.g., the Child Behavior Checklist). Executive functioning (Behavior Rating Inventory of Executive Function), ADHD symptoms (ADHD Rating Scale), and performance-based measures were compared between those with SI and those without. RESULTS: 17.5% of pediatric cancer patients experienced SI, of which 44.7% had self-endorsement only, 58.5% parent-endorsement only, 20.6% teacher-endorsement only, and 24.1% had two endorsements. Those with SI had significantly greater impairments in global executive composite scores by both parent- and teacher-report (ps < 0.05). Parents of children with SI endorsed significantly more inattention symptoms (M = 6.10, SD = 15.48) than those without SI (M = 50.56, SD = 8.70; p < 0.01), but hyperactivity symptoms did not differ. Intellectual and executive function performance did not differ between those with and without SI (ps > 0.1). CONCLUSIONS: An elevated number of children treated for cancer experience SI and related neurocognitive problems. Screening for SI and further assessment of the connection between executive functioning and SI in pediatric cancer populations is needed.
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Transtorno do Deficit de Atenção com Hiperatividade/complicações , Neoplasias Encefálicas/psicologia , Sobreviventes de Câncer/psicologia , Transtornos Neurocognitivos/complicações , Ideação Suicida , Adolescente , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Transtorno do Deficit de Atenção com Hiperatividade/psicologia , Neoplasias Encefálicas/terapia , Criança , Cognição , Função Executiva , Feminino , Humanos , Masculino , Transtornos Neurocognitivos/psicologia , Testes Neuropsicológicos , Prevalência , Adulto JovemRESUMO
INTRODUCTION: The present study aimed to evaluate the feasibility and efficacy of CogmedRM, a computerized, home-based working memory (WM) training program, in children with NF1. METHOD: A pre-post design was used to evaluate changes in performance-based measures of attention and WM, and parent-completed ratings of executive functioning. Children meeting eligibility criteria completed CogmedRM over 9 weeks. Primary outcomes included compliance statistics and change in attention and WM scores. RESULTS: Thirty-one children (52% male; M age = 10.97 ± 2.51), aged 8-15, were screened for participation; 27 children (87%) evidenced WM difficulties and participated in CogmedRM training. On average, participants completed 19.7 out of 25 prescribed sessions, with an adherence rate of 69%. Participants demonstrated improvements in short-term memory, attention, and executive functioning (all Ps < .05). CONCLUSION: Results suggest that computerized, home-based WM training programs may be both feasible and efficacious for children with NF1 and cognitive deficits.
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Instrução por Computador/métodos , Memória de Curto Prazo/fisiologia , Neurofibromatose 1/fisiopatologia , Neurofibromatose 1/terapia , Terapia Assistida por Computador/métodos , Adolescente , Criança , Função Executiva , Estudos de Viabilidade , Feminino , Humanos , Masculino , Testes Neuropsicológicos , Projetos Piloto , Resultado do TratamentoRESUMO
INTRODUCTION: Pediatric brain tumor survivors (PBTS) are at risk for both neurocognitive impairments and psychological difficulties, yet these two domains have historically been discretely examined, with assessment of psychosocial outcomes rarely included in studies of cognitive outcomes. Taking a person-centered approach, the current study aimed to more comprehensively evaluate PBTS late effect profiles, including both neurocognitive and psychological sequelae, and predictors of these profiles. METHOD: PBTS (N = 89) were assessed in a pediatric neuropsychological clinic between May 2009 and May 2018, diagnosed at least 1 year prior, and off-treatment for at least 3 months (Mage = 6.57 years, SD = 4.53; 46.1% female). Parent- and teacher-report of psychological symptoms, and performance-based measures of neurocognitive functioning were examined using latent profile analysis. The R3STEP procedure identified predictors of class membership. RESULTS: The optimal model identified four classes characterized by: (1) average functioning across all measures ("Average," n = 47), (2) average psychosocial functioning and impaired neurocognitive functioning ("Cognitive Deficit," n = 25), (3) elevated social problems and significant neurocognitive impairments ("Social/Cognitive Deficit," n = 9), and (4) impaired visual planning and problem-solving and elevated parent-reported psychosocial problems, but average processing speed, working memory, and teacher-reported psychosocial outcomes ("Discrepant," n = 8). Ethnicity, race, radiation treatment, and diagnoses of neurofibromatosis 1, hydrocephalus, and cerebellar mutism syndrome were significant predictors of class membership (ps < 0.05). CONCLUSION: The present study identified distinct phenotypes with unique patterns of relations among neurocognitive and psychological domains. These findings are a vital first step toward identifying those at highest risk for poor outcomes and informing interventions that effectively address interrelated treatment targets for specific groups.
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Neoplasias Encefálicas , Transtornos Cognitivos , Criança , Feminino , Humanos , Masculino , Memória de Curto Prazo , Testes Neuropsicológicos , Fenótipo , SobreviventesRESUMO
OBJECTIVE: To identify possible subgroups of health care utilization (HCU) patterns among adolescents and young adults (AYAs) with a chronic medical condition (CMC), and examine how these patterns relate to transition readiness and health-related quality of life (HRQoL). METHODS: Undergraduates (N = 359; Mage=19.51 years, SD = 1.31) with a self-reported CMC (e.g., asthma, allergies, irritable bowel syndrome) completed measures of demographics, HCU (e.g., presence of specialty or adult providers, recent medical visits), transition readiness, and mental HRQoL (MHC) and physical HRQoL (PHC). Latent class analysis identified four distinct patterns of HCU. The BCH procedure evaluated how these patterns related to transition readiness and HRQoL outcomes. RESULTS: Based on seven indicators of HCU, a four-class model was found to have optimal fit. Classes were termed High Utilization (n = 95), Adult Primary Care Physician (PCP)-Moderate Utilization (n = 107), Family PCP-Moderate Utilization (n = 81), and Low Utilization (n = 76). Age, family income, and illness controllability predicted class membership. Class membership predicted transition readiness and PHC, but not MHC. The High Utilization group reported the highest transition readiness and the lowest HRQoL, while the Low Utilization group reported the lowest transition readiness and highest HRQoL. CONCLUSIONS: The present study characterizes the varying degrees to which AYAs with CMCs utilize health care. Our findings suggest poorer PHC may result in higher HCU, and that greater skills and health care engagement may not be sufficient for optimizing HRQoL. Future research should examine the High Utilization subgroup and their risk for poorer HRQoL.
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Aceitação pelo Paciente de Cuidados de Saúde , Qualidade de Vida , Adolescente , Doença Crônica , Humanos , Análise de Classes Latentes , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVE: A subset of parents of children with disorders/differences of sex development (DSD) including ambiguous genitalia experience clinically elevated levels of anxious and depressive symptoms. Research indicates that uncertainty about their child's DSD is associated with parent psychosocial distress; however, previous studies have been cross-sectional or correlational in nature. The current study is the first to examine the longitudinal trajectory of the relationship between caregiver-perceived uncertainty about their child's DSD and caregiver anxious and depressive symptoms across the first 12 months following genital surgery in young children, or if surgery was not performed, the first 12 months following study entry. METHODS: One hundred and thirteen caregivers (Mage = 32.12; 57.5% mothers; 72.6% Caucasian) of children (N = 70; Mage = 9.81 months; 65.7% female) with DSD were recruited from 12 DSD specialty clinics in the United States. Caregivers completed psychosocial measures at baseline, 6 and 12 months following genitoplasty, or study entry if parents elected not to have surgery for their child. RESULTS: Caregiver illness uncertainty and both anxious and depressive symptoms were highest at baseline and decreased over time (ps < .05). Caregiver illness uncertainty predicted symptoms of anxious and depressive symptoms across all time points (ps < .05). CONCLUSIONS: Caregivers' perceptions of uncertainty about their child's DSD are highest soon after diagnosis, and uncertainty continues to predict both anxious and depressive symptoms across time. Thus, the initial diagnostic period is a critical time for psychological assessment and intervention, with parent illness uncertainty being an important clinical target.
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Cuidadores , Pais , Ansiedade/diagnóstico , Criança , Pré-Escolar , Estudos Transversais , Depressão/diagnóstico , Feminino , Humanos , Masculino , IncertezaRESUMO
BACKGROUND: Pediatric brain tumor survivors (PBTS) are at significant risk for psychological adjustment difficulties, including greater depressive and anxious symptomology. Systematic reviews have identified this heightened risk among youth with medical conditions, but these reviews have not been specific to PBTS. Therefore, the current study aimed to directly examine the psychological adjustment of PBTS as compared to healthy peers. PROCEDURE: A systematic review and meta-analysis was conducted using PubMed, PsychInfo, and Academic Search Premier databases. The search yielded 2833 articles, with 22 articles meeting inclusion criteria. RESULTS: A statistically significant overall medium effect size (Hedge's g = 0.32) indicated that PBTS exhibited poorer overall psychological adjustment relative to healthy comparison groups. Studies that included younger children were associated with larger between-group differences. When evaluating specific outcomes, PBTS had relatively higher levels of depressive symptoms (Hedge's g = 0.36), anxious symptoms (Hedge's g = 0.11), and general distress (Hedge's g = 0.22), but not more externalizing problems. CONCLUSIONS: The present study confirmed that PBTS are indeed at greater risk for psychological adjustment difficulties relative to healthy comparison groups. These findings highlight the importance of psychosocial screening among this population. Given that depressive symptoms were the most elevated relative to healthy peers, investigation of such symptomatology among PBTS is particularly important.
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Neoplasias Encefálicas/psicologia , Sobreviventes de Câncer/psicologia , Ajustamento Emocional/fisiologia , Qualidade de Vida , Neoplasias Encefálicas/terapia , Criança , Humanos , Prognóstico , Taxa de SobrevidaRESUMO
OBJECTIVE: Little is known about relations between domains of psychosocial risk among pediatric cancer populations. The Psychosocial Assessment Tool 2.0 (PAT2.0) is one internationally validated screening measure that can examine these relations. This study aimed to examine risk profiles and predictors of these patterns exhibited by American and Dutch families. METHODS: Caregivers of children newly diagnosed with cancer (N = 262; nUSA=145, nNL=117) completed the PAT2.0 as part of larger studies conducted in the United States and the Netherlands. Latent profile analysis and multinomial logistic regression examined differences in demographic and medical variables across risk profiles. Domains assessed included Family Structure/Resources, Child Problems, Sibling Problems, Family Problems, Caregiver Stress Reactions, and Family Beliefs. RESULTS: Four groups were identified: "Low-Risk" (n = 162) defined by generally low risk across domains; "Moderate-Caregiver" (n = 55) defined by elevated Caregiver Stress Reactions domain; "Moderate-Children" (n = 25) defined by elevated Child Problems and/or Sibling Problems, and "Elevated-Risk" (n = 20) marked by generally high overall risk. Dutch families had higher odds of being in the Elevated-Risk group, compared to the Low-Risk group. Caregiver age, gender, and educational attainment predicted group membership. Families classified as Targeted or Clinical had higher odds of being in the Moderate or Elevated risk groups. CONCLUSION: The PAT2.0 appears to identify largely similar patterns of risk, suggesting that families experience common psychosocial difficulties in both American and Dutch societies. The two Moderate groups demonstrated specific risk sources, suggesting that evaluation of domain patterns, rather than reliance on PAT2.0 risk level, could be of clinical benefit.
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Etnicidade , Neoplasias , Pais , Estresse Psicológico , Cuidadores , Criança , Feminino , Humanos , Países Baixos/epidemiologia , Pais/psicologia , Medição de Risco , Estresse Psicológico/epidemiologia , Inquéritos e Questionários , Estados UnidosRESUMO
This article provides recommendations for adapting the pediatric medical home (PMH) model for health care needs of youth in foster care. Recommendations are based on key informant interviews regarding experiences at an established PMH for youth in foster care. Major clinic recommendations include expanding the PMH framework to include proficiency in Medicaid billing, promoting true interdisciplinary care teams, improving care accessibility via phone consultation, providing a stable place for medical records to be housed, delivering services throughout stages of the child welfare case, incorporating all family members, and implementing trauma-informed practice. Preliminary evidence suggests that the PMH model of care may be ideal for addressing the complex and often underserved needs of youth in foster care and their families. The present recommendations provide a logistical framework for establishing a clinic that thoughtfully considers the unique needs of this population. Future research is needed to examine best practices for implementation.
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Cuidados no Lar de Adoção , Assistência Centrada no Paciente/organização & administração , Guias de Prática Clínica como Assunto , Adolescente , Criança , Acessibilidade aos Serviços de Saúde , Necessidades e Demandas de Serviços de Saúde , Humanos , Entrevistas como Assunto , Medicaid , Estados UnidosRESUMO
Adverse childhood experiences (ACEs) are known to contribute to long-term harmful effects on mental health in young adults. Research has demonstrated that having a chronic medical condition (CMC) can also be conceptualized as being a potentially traumatic experience, and that young adults with a CMC are also at risk for negative adjustment. Emotion dysregulation, or difficulty identifying and regulating one's emotions, is common among individuals with ACEs, and is a predictor of young adult adjustment. Given the mediational link between ACEs, emotion dysregulation, and young adult adjustment, it is likely that emotion dysregulation may demonstrate a similar linkage to adjustment in individuals with a CMC. The current study compared the effects of ACEs and having a CMC on depressive and anxious symptoms, while also examining emotion dysregulation as a possible mediator for both ACEs and CMC on adjustment outcomes, specifically depressive and anxious symptoms. College students (N = 1911) completed online questionnaires that assessed history of ACEs, emotion regulation difficulties, adjustment, and chronic illness status. Path analyses demonstrated a significant correlation between ACEs and depressive and anxious symptoms, as well as having a CMC and depressive and anxious symptoms. Furthermore, emotion dysregulation demonstrated a significant mediation between ACEs and negative adjustment, as well as between having a CMC and negative adjustment. This study highlights the importance of emotion dysregulation in understanding outcomes for individuals with a CMC and/or ACEs.
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Experiências Adversas da Infância/estatística & dados numéricos , Emoções , Adolescente , Ansiedade/psicologia , Criança , Feminino , Humanos , Masculino , Saúde Mental , Estudantes/psicologia , Inquéritos e Questionários , Adulto JovemAssuntos
Transtorno Depressivo Maior , Transtornos do Sono-Vigília , Criança , Depressão , Família , Humanos , EstudantesRESUMO
PROBLEM: Pediatric cancer places both parents and children at risk for psychosocial difficulties, including a specific risk for diminished quality of life. Previous research has identified relationships between parent and child psychosocial adjustment outcomes (e.g., depression, anxiety), yet the relationships between parent adjustment and child quality of life have yet to be comprehensively evaluated via meta-analysis. ELIGIBILITY CRITERIA: A systematic review and meta-analysis were conducted using EBSCO, with PsychINFO, MEDLINE, Academic Search Premiere, and Health Source: Nursing/Academic Edition. SAMPLE: Fourteen studies met inclusion criteria. RESULTS: Fourteen correlations from 1646 parents of children with cancer were evaluated, resulting in a medium-magnitude correlation between parent psychosocial adjustment and child quality of life (râ¯=â¯0.23, pâ¯<â¯.001). Additional analyses evaluating the relationship between parent psychosocial adjustment and child social/emotional quality of life resulted in a medium-magnitude correlation (râ¯=â¯0.24, pâ¯<â¯.001). CONCLUSIONS: A significant relationship exists between parent psychosocial adjustment and child quality of life. However, this relationship appears slightly less strong than those found in meta-analyses evaluating other child psychosocial adjustment outcomes. IMPLICATIONS: Parent distress is an important factor to evaluate in the context of pediatric cancer, as it appears to have implications for child quality of life, in addition to other child psychosocial adjustment outcomes.