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OBJECTIVES: Research and clinical expertise have emphasized the mental health needs of parents and caregivers of medically complex children. Evidence-based interventions are available for adult mental health, including those designed specifically for caregivers caring for children with a variety of health-care needs. This paper describes practical and legal considerations of 3 possible pathways for psychologists to address the needs of caregivers within pediatric hospital settings. METHODS: Literature regarding the mental health needs of caregivers of children with medical conditions, evidence-based interventions, and pediatric subspecialty psychosocial guidelines was reviewed. Relevant legal and ethical obligations for psychologists were also summarized. RESULTS: The mental health needs of caregivers of medically complex children are often high, yet programmatic, institutional, legal, and ethical barriers can limit access to appropriate care. SIGNIFICANCE OF THE RESULTS: Integration of screening and treatment of caregivers' mental health within the pediatric hospital setting is one pathway to addressing caregivers' needs. The development of programs for caregiver mental health screening and treatment within pediatric hospital settings will enhance the well-being of children and families and reduce legal and ethical risks for pediatric psychologists. Consultation with institutional compliance, legal/risk, and medical records departments and the creation of electronic medical records for the caregiver may be useful and practical opportunities for integration.
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OBJECTIVES: This study examined whether children with distinct brain disorders show different profiles of strengths and weaknesses in executive functions, and differ from children without brain disorder. METHODS: Participants were children with traumatic brain injury (N=82; 8-13 years of age), arterial ischemic stroke (N=36; 6-16 years of age), and brain tumor (N=74; 9-18 years of age), each with a corresponding matched comparison group consisting of children with orthopedic injury (N=61), asthma (N=15), and classmates without medical illness (N=68), respectively. Shifting, inhibition, and working memory were assessed, respectively, using three Test of Everyday Attention: Children's Version (TEA-Ch) subtests: Creature Counting, Walk-Don't-Walk, and Code Transmission. Comparison groups did not differ in TEA-Ch performance and were merged into a single control group. Profile analysis was used to examine group differences in TEA-Ch subtest scaled scores after controlling for maternal education and age. RESULTS: As a whole, children with brain disorder performed more poorly than controls on measures of executive function. Relative to controls, the three brain injury groups showed significantly different profiles of executive functions. Importantly, post hoc tests revealed that performance on TEA-Ch subtests differed among the brain disorder groups. CONCLUSIONS: Results suggest that different childhood brain disorders result in distinct patterns of executive function deficits that differ from children without brain disorder. Implications for clinical practice and future research are discussed. (JINS, 2017, 23, 529-538).
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Lesões Encefálicas Traumáticas/fisiopatologia , Neoplasias Encefálicas/fisiopatologia , Disfunção Cognitiva/fisiopatologia , Função Executiva/fisiologia , Inibição Psicológica , Memória de Curto Prazo/fisiologia , Acidente Vascular Cerebral/fisiopatologia , Adolescente , Lesões Encefálicas Traumáticas/complicações , Isquemia Encefálica/complicações , Isquemia Encefálica/fisiopatologia , Neoplasias Encefálicas/complicações , Criança , Disfunção Cognitiva/etiologia , Feminino , Humanos , Masculino , Testes Neuropsicológicos , Acidente Vascular Cerebral/complicaçõesRESUMO
Parents and caregivers of children with cancer are both resilient and deeply affected by the child's cancer. A systematic review of published research since 1995 identified 138 studies of moderate quality indicating that parent distress increases around diagnosis, then returns to normal levels. Post-traumatic symptoms are common. Distress may be impairing for vulnerable parents and may impact a child's coping and adjustment. Moderate quality evidence and expert consensus informed a strong recommendation for parents and caregivers to receive early and ongoing assessment of their mental health needs with access to appropriate interventions facilitated to optimize parent, child, and family well being.
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Neoplasias/psicologia , Pais/psicologia , Psicologia/normas , Padrão de Cuidado/normas , Criança , Humanos , Estresse PsicológicoRESUMO
OBJECTIVE: To examine the role of temperament (i.e., surgency/positive affect, negative affect, and effortful control) in the social behavior of pediatric brain tumor survivors and comparison classmates. METHODS: Parent-, peer-, and self-report data were collected for 75 children after treatment for a brain tumor, and 67 comparison classmates. Tests of mediation and moderated mediation were run to examine whether effortful control accounted for group differences in social behavior and whether this indirect effect was moderated by surgency/positive or negative affectivity. RESULTS: Peers described survivors as lower in Leadership-popularity and higher in Sensitivity-isolation and victimization than comparison classmates. Parent and self-report of surgency/positive affect revealed survivors were lower on this dimension. Survivors were rated by parents as demonstrating less effortful control. Effortful control did not consistently account for group differences in social behavior. There was limited evidence of moderated mediation. CONCLUSIONS: Research on the implications of potential changes in temperament following treatment is warranted.
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Neoplasias Encefálicas/psicologia , Grupo Associado , Comportamento Social , Sobreviventes/psicologia , Temperamento , Adolescente , Criança , Feminino , Humanos , Masculino , Pais/psicologia , Isolamento SocialRESUMO
BACKGROUND: Due to the devastating late effects associated with cranial irradiation in young children with central nervous system (CNS) tumors, treatment for these patients has evolved to include the use of intensive chemotherapy to either avoid or postpone irradiation. While survival outcomes have improved, late effects data in survivors treated on such regimens are needed. OBJECTIVE: This multi-institutional study comprehensively describes late effects in survivors treated on the Head Start I/II protocols. METHODS: Survivors of CNS tumors treated on Head Start I/II protocols were enrolled. Late effects data were collected using a validated parent-report questionnaire. Social, emotional, and behavioral functioning and quality of life were assessed using parent-report on the BASC-2 and CHQ-PF50 questionnaires. RESULTS: Twenty-one survivors (medulloblastoma = 13, sPNET = 4, ATRT = 1, ependymoma = 3) were enrolled. Ten (48%) were irradiation-free. Late effects (frequency; median time of onset since diagnosis) included ≥ grade III hearing loss (67%; 3.9 years), vision (67%; 4.1 years), hypothyroidism (33%; 4 years), growth hormone (GH) deficiency (48%; 4.7 years), dental (52%; 7.1 years), and no cases of secondary leukemia. Irradiation-free (vs. irradiated) survivors reported low rates of hypothyroidism (0/10 vs. 7/11; P = 0.004) and GH deficiency (2/10 vs. 8/11; P = 0.03). The BASC-2 and CHQPF-50 mean composite scores were within average ranges relative to healthy comparison norms. Neither age at diagnosis nor irradiation was associated with these scores. CONCLUSIONS: Irradiation-free Head Start survivors have lower risk of hypothyroidism and GH deficiency. Secondary leukemias are not reported. With extended follow-up, survivors demonstrate quality of life, social, emotional, and behavioral functioning within average ranges.
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Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Neoplasias do Sistema Nervoso Central/tratamento farmacológico , Transtornos do Crescimento/induzido quimicamente , Perda Auditiva/induzido quimicamente , Hipotireoidismo/induzido quimicamente , Sobreviventes , Transtornos da Visão/induzido quimicamente , Adolescente , Adulto , Neoplasias do Sistema Nervoso Central/complicações , Criança , Pré-Escolar , Feminino , Seguimentos , Transtornos do Crescimento/diagnóstico , Transtornos do Crescimento/mortalidade , Perda Auditiva/diagnóstico , Perda Auditiva/mortalidade , Humanos , Hipotireoidismo/diagnóstico , Hipotireoidismo/mortalidade , Lactente , Masculino , Prognóstico , Inquéritos e Questionários , Taxa de Sobrevida , Transtornos da Visão/diagnóstico , Transtornos da Visão/mortalidade , Adulto JovemRESUMO
OBJECTIVE: To examine the extent to which stress, coping, and temperament accounted for variability in adjustment among children with cancer. METHODS: Seventy-five mothers of children with cancer (ages 5-17) completed questionnaires regarding their child's cancer-related stress; coping; temperament characteristics including positive affect (PA), negative affect (NA), and effortful control (EC); and symptoms of anxiety and depression. Assessments occurred within one year of initial diagnosis or relapse (M = 5.74 months; SD = 4.72). RESULTS: Cancer-related stress was positively associated with symptoms of depression in children. NA was positively associated with symptoms of anxiety and depression. Primary control coping moderated the association between NA and depression, and primary and secondary control coping mediated this association. CONCLUSION: Results partially support the utility of an integrated model including cancer-related stress, coping, and NA in identifying children at risk for internalizing symptoms during treatment. Additional research is needed to inform interventions for this population.
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Adaptação Psicológica , Neoplasias/psicologia , Papel do Doente , Temperamento , Adolescente , Ansiedade/diagnóstico , Ansiedade/psicologia , Criança , Transtornos do Comportamento Infantil/diagnóstico , Transtornos do Comportamento Infantil/psicologia , Pré-Escolar , Mecanismos de Defesa , Depressão/diagnóstico , Depressão/psicologia , Feminino , Humanos , Controle Interno-Externo , Masculino , Modelos Psicológicos , Recidiva Local de Neoplasia/psicologia , Determinação da Personalidade/estatística & dados numéricos , Psicometria , Medição de RiscoRESUMO
PURPOSE: The purpose of this review was to synthesize current knowledge about anxiety among adolescent survivors of pediatric cancer and highlights areas for future research. METHODS: Systematic literature searches were conducted in five databases for articles published anytime before December 28, 2015. Manuscripts were reviewed by a team of six coders. Included manuscripts reported outcomes relevant to anxiety, worry, and post-traumatic stress in survivors of pediatric cancer (age at the time of study: 10-22 years) who were off treatment. RESULTS: Twenty-four articles met inclusion criteria. Included results were categorized into the following domains: post-traumatic stress, anxiety, cancer-related worry, and interventions. With the exception of post-traumatic stress, there was little research about anxiety in this population; however, studies generally indicated that adolescent survivors of pediatric cancer are at elevated risk for anxiety, post-traumatic stress symptoms, and cancer-related worry. CONCLUSIONS: This review provides preliminary evidence that anxiety is a relevant, but understudied, psychosocial outcome for adolescent survivors of pediatric cancer. More research is needed to better understand the presentation of anxiety in this population, its effect on survivors' quality of life, and possible areas for intervention.
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Ansiedade/psicologia , Sobreviventes de Câncer/psicologia , Qualidade de Vida , Transtornos de Estresse Pós-Traumáticos/psicologia , Adolescente , Adulto , Ansiedade/diagnóstico , Ansiedade/terapia , Estudos de Casos e Controles , Criança , Estudos Transversais , Feminino , Humanos , Estudos Longitudinais , Masculino , Fatores de Risco , Autorrelato , Índice de Gravidade de Doença , Transtornos de Estresse Pós-Traumáticos/terapia , Adulto JovemRESUMO
PURPOSE OF REVIEW: In the advanced stages of illness, families with dependent children experience disruption across all dimensions of family life. The need for family support during palliative care is well recognized, yet little is understood about how parents and their children navigate these difficult circumstances. This review summarizes the current body of research on parenting challenges in advanced cancer. RECENT FINDINGS: To date, the study of parental cancer has focused predominantly on the early stages of disease and its impact on children and adolescents. Less is known about how families with minor children prepare for parental loss. Evidence suggests that having dependent children influences parents' treatment decisions at the end of life, and that a central concern for children and parents is optimizing time spent together. Parents may feel an urgency to engage in accelerated parenting, and maintaining normalcy remains a consistent theme for the ill and healthy parent alike. There is a growing evidence base affirming the importance of responsive communication prior to death. SUMMARY: Advancing knowledge about the parenting experience at the end of life is critical for ensuring effective support to the entire family, as it accommodates and prepares for the loss of a vital member.
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Relações Familiares , Neoplasias/psicologia , Poder Familiar/psicologia , Assistência Terminal/organização & administração , Doente Terminal/psicologia , Comunicação , Objetivos , Humanos , Cuidados Paliativos/organização & administração , Índice de Gravidade de DoençaRESUMO
OBJECTIVE: To assess self-perceptions of social behavior among children treated for a brain tumor and comparison children. To investigate group differences in the accuracy of children's self-perceptions as measured by discrepancies between self and peer reports of social behavior and to understand if these phenomena differ by gender. METHOD: Self and peer reports of social behavior were obtained in the classrooms of 116 children who were treated for an intracranial tumor. Social behaviors were assessed using the Revised Class Play, which generates indices for 5 behavioral subscales: Leadership-popularity, Prosocial, Aggressive-disruptive, Sensitive-isolated, and Victimization. A child matched for gender, race, and age was selected from each survivor's classroom to serve as a comparison. Abbreviated IQ scores were obtained in participants' homes. RESULTS: Relative to comparison children, those who had undergone treatment for a brain tumor overestimated their level of Leadership-popularity and underestimated levels of Sensitive-isolated behaviors and Victimization by peers. Female survivors were more likely than male survivors to underestimate Sensitive-isolated behaviors and Victimization. CONCLUSION: Following treatment for a brain tumor, children (particularly girls) may be more likely than healthy children to underestimate peer relationship difficulties. These discrepancies should be considered when obtaining self-report from survivors and developing interventions to improve social functioning.