RESUMO
Childhood cancer challenges academic success and school engagement, yet little research has described these hardships. This study documented parental perspectives of the educational barriers and unmet needs of youth treated for cancer (n = 102). Treatment-related physical sequelae were noted as common problems interfering with school attendance and engagement. One-fourth of parents reported worse academic performance since diagnosis; however, many never had their child evaluated (63.3%) or enacted formalized educational accommodations (55%). Findings reflect educational challenges across the continuum of cancer care and survivorship, and highlight the importance of education of school staff on both acute and long-term effects of cancer treatment.
RESUMO
Clinical trial research forms the foundation for advancing treatments; yet, children with sickle cell disease (SCD) are currently underrepresented. This qualitative study examines decision-making processes of youth with SCD and their caregivers regarding enrollment in clinical trial research. A subsample of participants from a study of clinical trial decision making among youth with health disparity conditions, 23 caregivers and 29 children/teens/young adults with SCD (age, 10 to 29 y), indicated whether or not they would participate in hypothetical medical and psychosocial clinical trials and prioritized barriers and benefits to participation via card sort and semistructured interviews. Audio recordings were transcribed and coded for themes. Participants reported that concerns of potential harm most affected their decision. Secondary factors were potential benefit, manageable study demands, and trust in the medical staff. Caregivers weighed potential harm more heavily than their children. Young children were more likely to endorse potential benefit. Overall, participants stated they would be willing to participate in research if the potential benefit outweighs potential harm and unmanageable study demands. To optimize recruitment, results suggest addressing potential harm first while highlighting potential benefits, creating manageable study demands, and endorsing the future benefits of research to the sickle cell community.
Assuntos
Anemia Falciforme/prevenção & controle , Cuidadores/psicologia , Ensaios Clínicos como Assunto/psicologia , Tomada de Decisões , Participação do Paciente/psicologia , Pesquisa Qualitativa , Sujeitos da Pesquisa/psicologia , Adolescente , Adulto , Anemia Falciforme/psicologia , Atitude Frente a Saúde , Criança , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Seleção de Pacientes , Pediatria , Medição de Risco , Confiança , Adulto JovemRESUMO
The ways in which a family copes with the physical and psychosocial burdens of sickle cell disease (SCD) can influence the child and family functioning. However, few studies have examined SCD-related stressors beyond pain or how children and parents cope with these stressors. This study aimed to describe child coping and parent attempts to help their children cope (ie, coping assistance) with a range of SCD stressors by using a triangulated mixed methods design. We also explored convergence between findings from qualitative interviews and quantitative coping inventories. Fifteen children (aged 6 to 14 years) with SCD and their parents (N=15) completed semistructured interviews and self-report measures to assess SCD-related stressors, coping, and coping assistance strategies. Findings indicate that children experience numerous stressors related to SCD and its treatment, including, but not limited to, pain. To manage these stressors, families employ a range of approach and avoidance-oriented coping strategies. Quantitative and qualitative assessments provided complementary and unique contributions to understanding coping processes among children with SCD and their parents. Examining a broad range of stressors and integrating multiple assessment methods helps improve our understanding of coping with pediatric SCD, which may inform clinical practice and family-focused intervention development.