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1.
Curr Oncol ; 31(8): 4546-4558, 2024 Aug 09.
Artículo en Inglés | MEDLINE | ID: mdl-39195322

RESUMEN

Affect recognition has emerged as a potential mechanism underlying the social competence challenges experienced by pediatric brain tumour survivors (PBTSs). However, many social interactions were altered during the pandemic, with the widespread use of masking potentially impacting affect recognition abilities. Here, we examine affect recognition in PBTSs and typically developing youth (TD) after the onset of the global pandemic. Twenty-three PBTSs and 24 TD between 8 and 16 years old were recruited and completed two performance-based affect recognition tasks (full and partial facial features) and a self-reported questionnaire on mask exposure in their social interactions. Their parents completed parent proxy questionnaires on their child's social adjustment and sociodemographics. The scores between the PBTSs and TD did not differ significantly in full (t(45) = 1.33, p = 0.19, d = 0.39, 95% CI [-0.69, 3.40]) or partial (t(37.36) = 1.56, p = 0.13, d = 0.46, 95% CI [-0.47, 3.60]) affect recognition, suggesting similar affect recognition between the two groups. These skills were also not significantly correlated with social adjustment or mask exposure (p > 0.05). However, the combined sample had significantly better scores in affect recognition when exposed to partial facial cues versus full. Additionally, participants obtained lower scores on a measure of full facial affect recognition and higher scores on a measure of partial affect recognition compared to pre-pandemic data. The pandemic may have influenced affect recognition across youth, underscoring the importance of further research into its lasting impact on the social competence of youth.


Asunto(s)
Neoplasias Encefálicas , COVID-19 , Supervivientes de Cáncer , Humanos , COVID-19/epidemiología , COVID-19/psicología , Niño , Adolescente , Masculino , Femenino , Supervivientes de Cáncer/psicología , Neoplasias Encefálicas/psicología , Reconocimiento Facial , SARS-CoV-2 , Afecto
2.
J Palliat Med ; 2024 Jul 24.
Artículo en Inglés | MEDLINE | ID: mdl-39047058

RESUMEN

Background: Children with complex and chronic conditions receiving palliative care will likely experience many transitions during their life and their treatments. Transition periods for children with life-limiting conditions and their families can be bewildering and highly anxiety-inducing. However, clinical observations seem to point to a more heterogenous care offer, including a lack or discontinuity of services, at the expense of their quality of life. Objective: This paper aims to establish a portrait of the existing literature and identify research gaps on the multiple transitions experienced by this population. Design: A scoping review is provided, following a PRISMA protocol. MEDLINE, PubMed and CINAHL were consulted. The search strategy is based on three key concepts: (1) palliative care/complex condition, (2) child/adolescent, and (3) transition. Articles were screened with the help of Covidence. Results: A total of 72 articles are included for analysis. The aimed population is either identified by age group or by medical status. Respondents are most often parents rather than the children themselves. Transitions include: reaching adulthood, changes in care environment, changes in medical status, and school integration. Conclusion: The discussion notices a definitional murkiness about transitions and highlights the fact that the multifaceted and complex nature of transition over time is largely ignored. New research should involve a diversity of participants and include children's voices. Recommendations include clearer concept definitions, health care policies that adopt an ecosystemic approach, and professional training in the systemic family approach in palliative care.

3.
Pilot Feasibility Stud ; 10(1): 11, 2024 Jan 19.
Artículo en Inglés | MEDLINE | ID: mdl-38243344

RESUMEN

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.

4.
Curr Oncol ; 30(9): 8586-8601, 2023 09 19.
Artículo en Inglés | MEDLINE | ID: mdl-37754538

RESUMEN

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.


Asunto(s)
Neoplasias Encefálicas , Niño , Humanos , Adolescente , Adulto Joven , Adulto , Neoplasias Encefálicas/terapia , Empleo , Personal de Salud , Padres , Sobrevivientes
5.
J Psychosoc Oncol ; 40(3): 347-365, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-34859737

RESUMEN

PURPOSE: Adolescents and young adult survivors of pediatric brain tumors (AYA-PBTS) often experience difficulties with social skills, pursuit of studies and employment. This study explored pediatric long-term survivors' perspective on their post-treatment needs and ways to improve resources and interventions. METHODS: We used an original method of three sequential focus group interviews by adding the perspectives of survivors (15-22 years), parents and health professionals (total N = 22). Participants were recruited using purposive sampling from the long-term follow-up clinic at a Canadian tertiary hospital. We used computer-assisted analysis to draw themes from each group and compare thematic content across groups. RESULTS: Categorization of participants' responses resulted in three domains: personal life, education and work. Participants mentioned the improvement of communication tools to facilitate access to timely information, the organization of counseling to improve employment integration, and tailoring interventions to optimize the return to daily activities in aftercare. Subsequent inductive analysis revealed three overarching trends among groups: multipurpose social networking, AYA-PBTS-specific information websites and transition tools and procedures. CONCLUSION AND IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: This study identified solutions for AYA-PBTS' specific needs in aftercare. This population needs up-to-date post-treatment information and refined outreach procedures. Future research should define and prioritize these suggested solutions.


Asunto(s)
Neoplasias Encefálicas , Supervivientes de Cáncer , Neoplasias , Adolescente , Cuidados Posteriores/psicología , Neoplasias Encefálicas/psicología , Neoplasias Encefálicas/terapia , Canadá , Supervivientes de Cáncer/psicología , Niño , Humanos , Neoplasias/psicología , Sobrevivientes , Adulto Joven
6.
Patient Educ Couns ; 103(9): 1830-1838, 2020 09.
Artículo en Inglés | MEDLINE | ID: mdl-32418681

RESUMEN

OBJECTIVES: This is a quality assessment of a research design developed for a collaborative study on adolescents and young adults who survived a brain tumor. METHODS: A descriptive and critical mixed methods approach was used to assess the design itself, the quality and information power of the database and the integration of collaborators. Project documentation, field notes and transcripts from focus groups interviews(n = 19) were used for the evaluation, which was based on the Consolidated Criteria for Reporting Qualitative Research. RESULTS: The design proved to be pertinent to resolve methodological stakes in a "fragile field". The mobilisation of collaborators as members of a "Sherpa team" in all phases of the project helped the team create a progressive focus approach well-adapted for data gathering and analysis as well as produce a high-quality database. CONCLUSION: The Nesting Dolls Design including the didactic approach developed along the deployment of the project helped researchers, clinicians and resource patients/parents understand the research procedures and the roles of all collaborators. This fostered a meaningful engagement in the project. PRACTICE IMPLICATIONS: Resources and time for training, communication and supervision are necessary to reach the objectives of collaborative research involving novices and are worth the time and efforts.


Asunto(s)
Supervivientes de Cáncer , Conducta Cooperativa , Padres , Médicos , Garantía de la Calidad de Atención de Salud , Neoplasias Encefálicas/terapia , Femenino , Grupos Focales , Investigación sobre Servicios de Salud , Humanos , Entrevistas como Asunto , Masculino , Proyectos de Investigación , Adulto Joven
7.
J Clin Psychol Med Settings ; 26(3): 353-363, 2019 09.
Artículo en Inglés | MEDLINE | ID: mdl-30421157

RESUMEN

Transition from pediatric to adult health care setting is a challenge for young patients because of the psychosocial issues they may present that could hinder their commitment to treatment and medical care. Psychologists play a key role in supporting these patients. They intervene with the most vulnerable ones for whom the current transitional practice does not necessarily meet their specific needs and help them to develop an appropriate level of autonomy despite medical condition. To date, few studies have described their clinical practice in this field. This study aimed to gather in-depth information about the elements that characterize their different roles in transition care. Following a semi-structured interviews with ten pediatric psychologists, we conducted a thematic content analysis to identify common themes among participants. The results indicate that the psychologists' practice focuses on four main aspects: assessment, intervention, education, and liaison. Their recommendations point towards a better organization of health care services and a reflection on the best practices in psychology. These results highlight the specific roles that pediatric psychologists play in the transition process within the health care environment.


Asunto(s)
Rol del Médico , Psicología Infantil/métodos , Psicología , Transición a la Atención de Adultos , Adulto , Estudios de Evaluación como Asunto , Femenino , Humanos , Entrevistas como Asunto , Masculino , Investigación Cualitativa
8.
Artículo en Inglés | MEDLINE | ID: mdl-25120531

RESUMEN

Recent discoveries highlight the emerging role of estrogens in the initiation and progression of different malignancies through their interaction with stem cell (SC) compartment. Estrogens play a relevant role especially for those tumors bearing a gender disparity in incidence and aggressiveness, as occurs for most thyroid diseases. Although several experimental lines suggest that estrogens promote thyroid cell proliferation and invasion, their precise contribution in SC compartment still remains unclear. This review underlines the interplay between hormones and thyroid function, which could help to complete the puzzle of gender discrepancy in thyroid malignancies. Defining the association between estrogen receptors' status and signaling pathways by which estrogens exert their effects on thyroid cells is a potential tool that provides important insights in pathogenetic mechanisms of thyroid tumors.

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