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1.
Pilot Feasibility Stud ; 10(1): 11, 2024 Jan 19.
Artigo em Inglês | MEDLINE | ID: mdl-38243344

RESUMO

BACKGROUND: Pediatric brain tumor survivors (PBTS) are at risk of physical, cognitive, and psychosocial challenges related to their diagnosis and treatment. Routine follow-up care as adults is therefore essential to their long-term health and quality of life. In order to successfully navigate to adult healthcare, it is recommended that youth develop transition readiness skills. Existing transition readiness interventions often focus on disease management. However, PBTS are also at risk of social competence and cognitive functioning challenges. In this paper, we describe the protocol of this pilot study and the methodology that will be used for the evaluation of the feasibility, acceptability, and preliminary efficacy testing of the first targeted transition intervention workshops specifically designed to meet the needs of PBTS and their caregivers. METHODS: This study will use a mixed method to evaluate three 1 ½-h workshops targeted for dyads (N = 40) of PBTS (14 years or older) and their parents. Dyads will be recruited via a community pediatric cancer organization and the long-term follow-up clinic of a large pediatric hospital. Participants will complete an online survey which includes the Transition Readiness Assessment Questionnaire (TRAQ) before and after the workshops. Each workshop will cover a specific topic related to PBTS transition readiness: disease management, social competence, and cognitive functioning. Workshops will follow the same structure: topic presentation, discussion by a post-transfer survivor or parent, teaching two strategies, and workshop evaluation. Workshops will be co-led by healthcare specialists and patient partners. Feasibility and acceptability will be assessed via recruitment, attendance, retention, and Likert scales, and they will be analyzed by describing and comparing rates. Satisfaction will be measured using satisfaction surveys and audio-recorded focus groups. Qualitative data will be described through thematic content analysis. In order to test the preliminary efficacy of this study, we will compare transition readiness skills pre- and post-workshops using paired samples T test and ANCOVA to examine the impact of workshop on TRAQ skills. DISCUSSION: Results of the study will inform refinement and future broader implementation of targeted transition readiness workshops for the specific needs of pediatric brain tumor survivors.

2.
Child Care Health Dev ; 50(1): e13156, 2024 01.
Artigo em Inglês | MEDLINE | ID: mdl-37535469

RESUMO

BACKGROUND: Transferring from paediatric to adult care can be challenging. Adolescents and young adults (AYAs) with chronic health conditions need to develop a specific set of skills to ensure lifelong medical follow-up due to the chronicity of their condition. The Transition Readiness Assessment Questionnaire-French version (TRAQ-FR) is a 19-item questionnaire measuring such skills. The aims of the study were to (1) describe participant characteristics and (2) identify constructs related to, and predictors of, having learned domain-specific transition readiness skills. METHODS: Participants included 216 AYAs aged 14-20 years (M = 15.93; SD = 1.35; 54.1% male) recruited from five outpatient clinics in a Canadian tertiary hospital. AYAs completed the TRAQ-FR, the Pediatric Quality of Life Inventory 4.0 (PedsQL) and a sociodemographic questionnaire. Descriptive, bivariate and binary logistic regression analyses were conducted. RESULTS: Overall, participants reported significantly higher scores on the Talking with Providers, Managing Daily Activities and Managing Medications subscales than on the Appointment Keeping and Tracking Health Issues subscales (F[41075] = 168.970, p < .001). At the item level, median scores (on a 5-point Likert scale) suggest that AYAs had begun practising five of the 19 skills (median scores ≥4; 'Yes, I have started doing this'), while a median score of 1 ('No, I don't know how') was found for one item ('Do you get financial help with school or work?'). At the subscale level, TRAQ-FR skills and skill gaps were related to AYAs' age, sex and PedsQL scores (ps < .05). CONCLUSION: Older and female AYAs were more likely to have begun practising specific TRAQ-FR subscale skills. Better psychosocial functioning was also related to having learned specific transition readiness skills. AYAs show several gaps in transition readiness. Targeted intervention in transition readiness skill development could take into account AYAs' age, sex and psychosocial functioning for a successful transfer to adult care.


Assuntos
Transição para Assistência do Adulto , Humanos , Masculino , Feminino , Adulto Jovem , Adolescente , Criança , Qualidade de Vida , Canadá , Inquéritos e Questionários , Doença Crônica
3.
Curr Oncol ; 30(9): 8586-8601, 2023 09 19.
Artigo em Inglês | MEDLINE | ID: mdl-37754538

RESUMO

Pediatric Brain Tumor Survivors (PBTS) often experience social, academic and employment difficulties during aftercare. Despite their needs, they often do not use the services available to them. Following a previous qualitative study, we formulated solutions to help support PBTS return to daily activities after treatment completion. The present study aims to confirm and prioritize these solutions with a larger sample. We used a mixed-methods survey with 68 participants (43 survivors, 25 parents, PBTS' age: 15-39 years). Firstly, we collected information about health condition, and school/work experience in aftercare. Then, we asked participants to prioritize the previously identified solutions using Likert scales and open-ended questions. We used descriptive and inferential statistics to analyze data, and qualitative information to support participants' responses. Participants prioritized the need for evaluation, counseling, and follow-up by health professionals to better understand their post-treatment needs, obtain help to access adapted services, and receive information about resources at school/work. Responses to open-ended questions highlighted major challenges regarding the implementation of professionals' recommendations at school/work and the need for timely interventions. These results will help refine solutions for PBTS and provide key elements for future implementation. Translating these priorities into action will need further work involving professionals and decision makers.


Assuntos
Neoplasias Encefálicas , Criança , Humanos , Adolescente , Adulto Jovem , Adulto , Neoplasias Encefálicas/terapia , Emprego , Pessoal de Saúde , Pais , Sobreviventes
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
6.
J Psychosoc Oncol ; 40(6): 790-807, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35016592

RESUMO

A pediatric cancer diagnosis can have a significant impact on the quality of life (QOL) of the child. Diagnosis and treatment impact caregiver anxiety/depression symptoms and family functioning, and these in turn may influence child QOL. However, there has been limited longitudinal examination of the impact of both caregiver anxiety/depression symptoms and family functioning on youth QOL at specific points during the early diagnosis and treatment period.Ninety-six caregivers of youth (diagnosed with leukemia/lymphoma or a solid tumor) reported on their own anxiety/depression symptoms, family functioning, demographic and medical factors, and on their child's generic and cancer-specific QOL shortly after diagnosis (T1) and 6 months later (T2).Caregiver anxiety/depression symptoms were associated with poorer cancer-specific and generic child QOL within and across time points. Family conflict was associated with youth cancer-related QOL at T1.Attendance to caregiver anxiety/depression symptoms and family functioning, beginning early in the cancer trajectory, is an important aspect of family-centered care. Routine psychosocial screening and triage may help identify and intervene to support both caregiver and child psychosocial well-being.


Assuntos
Cuidadores , Neoplasias , Adolescente , Criança , Humanos , Cuidadores/psicologia , Qualidade de Vida/psicologia , Depressão/psicologia , Ansiedade/psicologia , Neoplasias/terapia , Neoplasias/psicologia
7.
J Pediatr Psychol ; 47(6): 662-673, 2022 06 07.
Artigo em Inglês | MEDLINE | ID: mdl-34981125

RESUMO

BACKGROUND: Pediatric brain tumor survivors (PBTS) are at risk of experiencing social competence challenges, but only a limited number of studies have used a qualitative approach to understand their social relationships. We examined PBTS responses to social interview questions within the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2), which includes questions related to their understanding of their own relationships, as well as the construct of friendship more generally. METHODS: Twenty-four PBTS (ages 9-17 years; M = 14.2 years from diagnosis; 50% male; 42% received radiation treatment) completed the ADOS-2. ADOS-2 social interview responses were recorded and transcribed verbatim. Themes were derived using an inductive thematic analysis approach. RESULTS: PBTS reported that they considered trust, acceptance, respect, emotional support, and spending time together to be important aspects of friendships in general. When describing their own social relationships, some PBTS noted a lack of intimacy or closeness, spending time with their friends almost exclusively at school, with structured activities outside of school being an additional basis for friendship. Challenges to their social relationships included loneliness and reliance on family for social support, experiences of teasing and bullying, social skills deficits, and lack of insight into social situations. CONCLUSION: Although PBTS were able to acknowledge many important qualities of friendships in general (e.g., trust, emotional support), these were not necessarily reported in their own friendships. PBTS also appeared to have difficulty identifying whether someone was their friend. These findings offer potential opportunities for supporting PBTS in achieving friendships consistent with their conception of this important relationship.


Assuntos
Transtorno Autístico , Neoplasias Encefálicas , Adolescente , Neoplasias Encefálicas/psicologia , Criança , Feminino , Amigos/psicologia , Humanos , Relações Interpessoais , Masculino , Sobreviventes
8.
Pediatr Blood Cancer ; 69(5): e29578, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35084106

RESUMO

BACKGROUND: Pediatric cancer diagnosis and treatment can have detrimental mental health effects on parents (caregivers) and their children/adolescents (youth). Psychosocial screening and intervention have been recognized as standards of care in pediatric oncology. The most effective psychosocial interventions to support those in need post screening have not been determined. AIMS: This qualitative study aimed to investigate the perceived benefits and challenges for caregiver and youth participants in the screening-intervention arm of an Enhanced Psychosocial Screening Intervention (EPSI) pilot study. METHODS: EPSI consists of a psychosocial navigator (PSN) who shares screening results conducted near diagnosis (T1) and monthly for 1 year (T2) with treating teams and families. All 17 caregiver-youth dyads who had completed EPSI were invited to participate in a semi-structured interview. RESULTS: Ten caregivers and nine youth participated. Identified themes were grouped into benefits and challenges of EPSI: feeling supported and cared for (support comes to us regularly, having someone to talk to); and feeling empowered through knowledge of resources and services were perceived as benefits. Caregivers were challenged by feeling overwhelmed, and youth by screening questions perceived as too repetitive. CONCLUSIONS: Regular monthly contacts for a year by the PSN with screening results and recommendations were perceived as beneficial by youth newly diagnosed with cancer and their caregivers who participated in EPSI. Feeling that support came to them and they had someone to talk to was a critical component. While information about psychosocial resources was not always used right away, it did evoke feelings of being empowered.


Assuntos
Neoplasias , Intervenção Psicossocial , Adolescente , Cuidadores/psicologia , Criança , Humanos , Oncologia , Neoplasias/diagnóstico , Neoplasias/psicologia , Neoplasias/terapia , Projetos Piloto
9.
Appl Neuropsychol Child ; 11(3): 412-421, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-33501845

RESUMO

Research shows promise for cognitive interventions for children diagnosed with brain tumors. Interventions have been delivered approximately 5 years postdiagnosis on average, yet recent evidence shows cognitive deficits may appear near diagnosis. The present study assessed the feasibility and initial effects of working memory training in children with brain tumors delivered soon after diagnosis and followed 2 years postdiagnosis. Children completed baseline assessments 10 months postdiagnosis and were randomized to complete adaptive or nonadaptive (i.e., control) Cogmed Working Memory Training. Children were administered the WISC-IV Working Memory Index (WMI) and NIH Toolbox Cognitive Battery (NTCB), and parents completed attentional and executive function measures at four time points. On average, participants completed half of prescribed Cogmed sessions. Retention for the three follow-up assessments proved difficult. For both Cogmed groups, WMI and NTCB scores significantly improved immediately postintervention compared to baseline scores. Significant differences were not maintained at the remaining follow-ups. There was preliminary evidence for improved executive function at the final follow-up on parent-reported measures. Working memory training closer to diagnosis proved difficult, though results suggest evidence of cognitive improvement. Future studies should continue to examine potentially efficacious interventions for children with brain tumors and optimal delivery windows to maximize impact.


Assuntos
Neoplasias Encefálicas , Memória de Curto Prazo , Neoplasias Encefálicas/complicações , Neoplasias Encefálicas/psicologia , Criança , Função Executiva , Humanos , Aprendizagem , Sobreviventes
10.
Psychooncology ; 31(5): 735-744, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-34813129

RESUMO

OBJECTIVE: Psychosocial screening is a standard of care in pediatric oncology, but there is limited information about how to intervene after screening. This pilot trial aimed to determine feasibility of the novel Enhanced Psychosocial Screening Intervention (EPSI) and explore its preliminary efficacy outcomes. We examined rates of recruitment, retention, intervention acceptability, and monthly distress screening completion, as well as exploratory efficacy outcomes (Patient-Reported Outcomes Measurement Information System: depression, anxiety and fatigue; distress thermometer, pain and sleep). METHODS: Parallel-group randomized pilot trial: Caregiver-youth (10-17 years at enrollment, newly diagnosed with cancer) dyads were randomly allocated to either EPSI or standard care with 1:1 ratio allocation. EPSI consists of having a Psychosocial Navigator who shares screening results conducted near diagnosis and monthly for one year with treating teams and families, and provides recommendations tailored to screening results. RESULTS: Enrollment rate was 54% (38 dyads); retention was 90% and acceptability 86% (caregivers) and 76% (youth). Exploratory symptoms of depression, anxiety, distress and fatigue outcomes consistently improved mainly for caregivers. CONCLUSIONS: Results suggest EPSI is feasible and acceptable and exploratory mental and physical efficacy outcomes are promising for use in a future confirmatory multisite efficacy trial.


Assuntos
Cuidadores , Neoplasias , Adolescente , Ansiedade/psicologia , Cuidadores/psicologia , Criança , Fadiga/diagnóstico , Humanos , Neoplasias/psicologia , Projetos Piloto
11.
Pilot Feasibility Stud ; 7(1): 143, 2021 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-34274016

RESUMO

BACKGROUND: A pediatric cancer diagnosis and its treatment can have a detrimental effect on the mental health of children and their families. Screening to identify psychosocial risk in families has been recognized as a standard of care in pediatric oncology, but there has been limited clinical application of this standard thus far. A significant impediment to the implementation of psychosocial screening is the dearth of information on how to translate psychosocial screening to clinical practice, and specifically, how to follow-up from screening results. This manuscript aims to describe a protocol of a new intervention examining the feasibility and acceptability of mapping via a Psychosocial Navigator (PSN) psychosocial screening results to specific recommendations of resources for families based on measured risk for psychosocial distress and mental health symptoms. METHODS: The pilot randomized control trial (RCT) consists of dyads of youth (10-17 years) newly diagnosed with cancer and their primary caregiver. This RCT includes two arms (intervention and control group), with each group completing measurements near diagnosis and 1 year later. After the initial assessment, dyads in the intervention group receive monthly screening results and recommendations from the study PSN that are tailored to these results. The patient's primary healthcare team (nurse, social worker, oncologist) also receive the risk, distress, and mental health results as well as the recommendations from the PSN. DISCUSSION: This study addresses a significant barrier to the implementation of psychosocial screening in pediatric oncology: specifically, the limited knowledge of how to follow-up from screening results. Findings from this pilot will inform a future definitive RCT to test the effectiveness of the intervention on patient and family mental health outcomes. This project has implications for enhancing clinical care in pediatric oncology, as well as other pediatric populations. STRENGTHS AND LIMITATIONS OF THIS STUDY: This is the first study of screening and follow-up using a psychosocial navigator. This study involves both patient and caregiver report. The small sample size necessitates a future larger study to investigate the effects of intervention. TRIAL REGISTRATION: NCT04132856 , Registered 10 October 2019-retrospectively registered.

12.
Health Psychol Behav Med ; 9(1): 619-635, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34285826

RESUMO

PURPOSE: The Health state descriptive system includes standardized self-administered instruments for measuring Health-Related Quality of Life (HRQoL) respectively among adolescents, and children. The objectives of the current study were: (1) to translate and adapt the pediatric-adolescent version 16D and 17D from English into French (Canada), (2) to demonstrate their feasibility in pediatric conditions. METHODS: The translation methodology combined forward and back translations, and cognitive debriefing with eight adolescents and eight children. Four bilingual translators were involved in the process. We administered the translated versions to two clinical samples, being treated for Primary immunodeficiency (PID, n = 48, aged 14.1 years, 20 girls), and having recovered from pediatric Acute Lymphoblastic Leukemia (ALL, n = 153, aged 14.7 years, 77 girls). RESULTS: Cognitive debriefing indicated that that the instructions, items, and response options were clear, easy to understand, and easy to answer. Adjustments were made for clarity. Translated versions were highly usable (measurement completion >90%). HRQoL levels were high for both samples (range 0.85-0.96). Participants reported lower levels if they were adolescents, particularly if they were girls. Older boys with PID reported a lower HRQoL than their counterparts with a history of ALL. PID and ALL patients mainly reported issues with discomfort and pain, concentration/learning, physical appearance, and psychological distress and sleeping, although to a different degree. CONCLUSION: The French-language versions of the 16D and 17D are easy to administer and may be used to identify problematic domains. Greater availability of translated versions of short evaluation tools may facilitate broader uptake of screening practices in pediatric care.

13.
Qual Life Res ; 30(8): 2387-2404, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-33723696

RESUMO

INTRODUCTION: Assessing health-related quality of life (HRQoL) is an increasingly important aspect of standard care in pediatric oncology. Currently, there is a gap in the availability of French questionnaires to assess the quality of life of French-speaking pediatric brain tumor (PBT) patients, which has important implications in the care of this population. The first aim of this study was to translate the original English Pediatric Quality of Life Inventory™ (PedsQL) brain tumor module version into French. The second aim was to describe the stability, repeatability and convergent validity of the French PedsQL brain tumor module. METHODS: A total of 61 PBT patients were included in this study. Among them, 15 children and 20 parents participated in the translation process. As part of the validation study, 48 children and 48 parents answered the PedsQL brain tumor module twice, and the PedsQL generic core scales and the patient-reported outcomes measurement information system (PROMIS-37 pediatric profile v2.0) questionnaire were administered once to the participants. The mean age of the 25 boys and 23 girls was 8.3 ± 4.8 years. For temporal stability, we used intraclass correlation coefficients (ICCs), for repeatability, we used the Bland and Altman method to assess the accuracy at a 1-week interval, and we used Pearson's correlation coefficients for convergent validity between the PedsQL brain tumor module, PedsQL general module and the PROMIS. RESULTS: Temporal stability for the parent proxy-reports (average ICC = 0.98) and the child self-reports (average ICC = 0.98) were excellent. There was a high absolute stability over a 1-week interval for the parent proxy-reports (ICC > 0.96) and child self-reports (ICC > 0.96). Convergent validity between parent proxy-reports and child self-reports was supported by positive correlations for five subscales. Children reported higher scores in cognitive problems and the movement and balance parameters than their parents and reported lower scores on the worry parameter than their parents. CONCLUSION: The strong psychometric properties of the French version of the PedsQL brain tumor module indicate that it is a validate and reliable questionnaire to measure HRQoL in PBT patients. The availability of a French version of the PedsQL brain tumor module supports the wider dissemination of the assessment of HRQOL in PBT patients.


Assuntos
Neoplasias Encefálicas , Qualidade de Vida , Criança , Feminino , Humanos , Recém-Nascido , Masculino , Pais , Psicometria , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Inquéritos e Questionários
14.
Pediatr Blood Cancer ; 68(3): e28826, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33320998

RESUMO

OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative to parents and oncologists. METHODS: Families of adolescents (aged 10-17) were recruited at two pediatric institutions following a new diagnosis or relapse. Seventy-four adolescents, 68 mothers, and 40 fathers participated at enrollment; 76 adolescents, 69 mothers, and 35 fathers participated one year later. The adolescent's primary oncologist reported on prognosis only at enrollment. Participants rated the likelihood of the adolescent's survival in five years, as well as reporting prognosis communication and sources of information. RESULTS: Most oncologists (65%) and fathers (63%) discussed prognosis in numerical terms with the adolescent at baseline, which was greater than mother report (49%) of discussions of numerical prognosis with adolescents. Adolescents reported a better prognosis than oncologists, but comparable with mothers at diagnosis and one year. Adolescents' prognosis estimates were stable over time (P > .05). At diagnosis, adolescent-father (P = 0.025) and adolescent-oncologist (P < 0.001) discrepancies were larger for youth with advanced than non-advanced cancer. Adolescents whose parents received numerical prognosis estimates from the oncologist, and whose fathers reported providing numerical prognosis estimates had more accurate understandings of prognosis (P < 0.05). CONCLUSIONS: Adolescent prognosis estimates were comparable with those of parents at diagnosis and one year but more favorable than that of oncologists. Although additional research is needed, results suggest discrepancies in prognosis estimates between family members and oncologists, particularly for adolescents with advanced cancer.


Assuntos
Comunicação , Neoplasias/patologia , Neoplasias/psicologia , Oncologistas/psicologia , Pais/psicologia , Adolescente , Criança , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Neoplasias/terapia , Prognóstico , Inquéritos e Questionários
15.
J Pediatr Psychol ; 46(1): 80-90, 2021 01 20.
Artigo em Inglês | MEDLINE | ID: mdl-33377489

RESUMO

BACKGROUND/OBJECTIVES: Pediatric brain tumor survivors (PBTS) are at risk of experiencing challenges in social adjustment. However, the specific social behaviors of PBTS have rarely been directly assessed. This pilot study explores the first novel use of the Autism Diagnostic Observation Schedule, second edition (ADOS-2), to evaluate the social behaviors of PBTS. METHODS: Twenty-six PBTS (ages 9-17 years; M = 7.8 years from diagnosis; 52% male; 41% received radiation treatment) completed the ADOS-2. The proportion of the sample experiencing impairment was examined descriptively across all items of the ADOS-2, as well as by a summary "overall score" created for this study, and using the ADOS-2 "diagnostic algorithm" scores for autism. Social adjustment, cognitive, medical, and demographic variables were explored as correlates of the ADOS-2 "overall score". RESULTS: Study recruitment was 34%, impeded by distance from the tertiary-care center. The percentage of PBTS experiencing detectable impairments ranged from 0% to 50% across ADOS-2 items. Cranial radiation treatment, lower IQ, and slower cognitive processing were associated with higher impairment on the ADOS-2 "overall score". CONCLUSION: The ADOS-2 can be used to assess the discrete social behaviors of PBTS. This study provides a foundation for future investigations using the ADOS-2 to assess social behaviors in this population. Identifying specific social behavior difficulties in PBTS is key to refining much needed targeted social skills interventions for this population.


Assuntos
Neoplasias Encefálicas , Sobreviventes , Adolescente , Criança , Feminino , Humanos , Masculino , Projetos Piloto , Comportamento Social , Habilidades Sociais
16.
Appl Neuropsychol Child ; 10(4): 340-347, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-31887256

RESUMO

The aim of this study was to examine the feasibility of cognitive assessment from pre-surgery through 2-year follow-up in a sample of pediatric brain tumor (BT) patients. We sought to investigate cognitive function over the course of diagnosis and treatment, and as a function of presenting problems, tumor location, treatment type, and tumor severity. Using a prospective, longitudinal design, standardized IQ measures were administered to pediatric BT patients (ages 6-16) prior to surgery (n = 25), 6 months post-diagnosis (n = 24), and 24 months post-diagnosis (n = 23). Group differences emerged based on tumor severity and treatment type at multiple time points, including prior to surgical intervention; children with high grade tumors performed more poorly than children with low grade tumors, and children receiving surgery plus adjuvant therapy performed more poorly than children who received surgery only. When considered together, an analysis of covariance demonstrated that tumor grade significantly accounted for variability in cognitive functioning, while treatment type did not. Although there is overlap clinically between tumor severity and treatment received, results suggest that tumor severity is an important factor contributing to variability in cognitive functioning and should also be considered when monitoring risk for cognitive deficits in children diagnosed with BT.


Assuntos
Neoplasias Encefálicas , Transtornos Cognitivos , Adolescente , Neoplasias Encefálicas/cirurgia , Criança , Cognição , Seguimentos , Humanos , Estudos Prospectivos
17.
Cancer Nurs ; 44(3): 197-204, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-32000176

RESUMO

BACKGROUND: Children and adolescent survivors of brain tumors may experience impairments in social competence. OBJECTIVE: This qualitative randomized controlled substudy aimed to investigate the outcomes of a social skills intervention group by interviewing these children and adolescents and their caregivers following group participation. INTERVENTIONS/METHODS: Children and adolescents were randomized to the Social Skills Intervention Program or the attention control group. Using purposive sampling, 12 patients (average age, 11.42 years) and 12 caregivers were interviewed following group participation. The Social Skills Intervention Program consists of eight 2-hour manualized sessions delivered weekly; each session was structured around a social skill (eg, making friends, bullying) through arts and crafts and cognitive-behavioral strategies. The sessions in the control group were structured around daily themes (eg, summer activities) doing arts and crafts. Interviews were analyzed using content analysis. RESULTS: Themes unique to the intervention program included improved self-control and self-acceptance, reduced feelings of sadness, and improved problem solving. Themes common to both groups included group bonding over similar experiences, increased social confidence with peers and family, and reduced acting out. CONCLUSIONS: This study uncovered additional unique intervention effects not captured by quantitative measures: improved self-control and problem solving and benefits of the group experience in general. IMPLICATIONS FOR PRACTICE: Findings support the need for group socialization opportunities for children with brain tumors. Nurses can promote socializing opportunities for children and adolescent survivors of brain tumors during and after medical treatment ends to prevent social competence deterioration.


Assuntos
Neoplasias Encefálicas/psicologia , Sobreviventes de Câncer/psicologia , Habilidades Sociais , Adolescente , Terapia Comportamental/métodos , Cuidadores/psicologia , Criança , Amigos , Humanos , Grupo Associado , Resolução de Problemas
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.
Health Psychol ; 39(5): 381-390, 2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-31971403

RESUMO

OBJECTIVE: Diagnosis and treatment of childhood cancer can impact the mental health of the family. Early psychosocial risk screening may help guide interventions. The primary aim of this study was to evaluate if an intervention (providing psychosocial risk information to the patient's treating team) would result in decreased depression symptoms in caregivers, in general, and relative to initial psychosocial risk. A secondary aim was to examine intervention effects in a small sample of patient and sibling self-reported outcomes. METHODS: We randomly allocated families to the intervention group (IG, treating team received PAT summary) or control group (CG, no summary). One hundred and twenty-two caregivers of children newly diagnosed with cancer completed measures of depression and anxiety and psychosocial risk 2-4 weeks from diagnosis (T1) and 6 months later (T2). Patients and siblings completed self-report measures of depression and anxiety. RESULTS: There was no significant difference in caregiver depression symptoms between the IG and CG at T2. However, in the context of psychosocial risk, caregivers in the IG showed improvement in depression scores compared to CG when risk was high near diagnosis (Ms = 6.68 vs. 9.76, respectively, d = .60). Similar results were found in anxiety scores. Intervention effects with patients and siblings were inconclusive. CONCLUSIONS: Sharing psychosocial risk information with the treating team had measurable impact on mental health outcomes only if caregivers had initial high psychosocial risk. This study contributes to our understanding of mapping psychosocial screening and resources to improve outcomes in families managing childhood cancer. (PsycInfo Database Record (c) 2020 APA, all rights reserved).


Assuntos
Detecção Precoce de Câncer/métodos , Programas de Rastreamento/métodos , Saúde Mental/normas , Neoplasias/psicologia , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino
20.
Support Care Cancer ; 28(4): 1717-1723, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-31292754

RESUMO

BACKGROUND: Psychosocial screening has been proposed as a core standard of care in pediatric oncology. However, there has been limited application of this standard thus far. Understanding healthcare provider (HCP) attitudes towards psychosocial screening is an important element towards furthering implementation initiatives of standard screening practices in pediatric oncology. OBJECTIVE: To compare HCP perceptions of the utility of a psychosocial risk summary by discipline (oncologist, nurse, social worker), risk level (Universal, Targeted, Clinical) derived from the Psychosocial Assessment Tool (PAT), and time (shortly after a child's diagnosis [T1] and 6 months later [T2]). METHOD: All participating HCPs (oncologists, nurses, social workers) were asked to rate how useful they found the psychosocial risk summary using a visual analogue scale (VAS). RESULTS: The psychosocial risk summary was perceived as equally useful across providers (oncologists, nurses, social workers) and PAT risk levels at T1. At T2, the psychosocial risk summary was perceived as more useful by oncologists and nurses than social workers, and summaries indicating elevated risk were perceived as more useful than those indicating low risk. Overall, healthcare providers reported greater utility of psychosocial risk summary near diagnosis compared with 6 months later, largely driven by lower utility ratings reported by social workers at T2. CONCLUSION: Understanding perceived utility and factors affecting perceived utility is a key component to designing effective implementation strategies for systematic psychosocial screening. Active engagement of HCPs in the screening process is critical in improving implementation of psychosocial screening throughout pediatric cancer treatment.


Assuntos
Família/psicologia , Programas de Rastreamento/métodos , Neoplasias/psicologia , Angústia Psicológica , Psicometria/métodos , Adulto , Idoso , Atitude do Pessoal de Saúde , Criança , Feminino , Pessoal de Saúde , Humanos , Masculino , Oncologia , Pessoa de Meia-Idade , Oncologistas , Psicologia , Pesquisa , Assistentes Sociais
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