RESUMO
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.
Assuntos
Adaptação Psicológica , Anemia Falciforme/psicologia , Pais/psicologia , Adolescente , Criança , Feminino , Humanos , Masculino , Tamanho da AmostraRESUMO
For children with sickle cell disease (SCD), pain is associated with significant current and future morbidity and mortality. Unfortunately, few evidence-based guidelines exist for the management of pain episodes in children with SCD. To inform empirically based treatment strategies for pain management in pediatric SCD, this review integrates and evaluates the extant literature on psychosocial and pharmacological approaches to the management of pain. Findings reveal a paucity of rigorous investigations of psychosocial and pharmacological pain management interventions in children with SCD. Psychosocial interventions included were primarily cognitive-behavioral in nature, whereas pharmacological approaches targeted non-opioid analgesics (ie, nonsteroidal anti-inflammatory drugs and corticosteroids) and opioid medications (ie, morphine and oxycodone). However, to date there is not a "gold standard" for pain management among children with SCD. Because psychosocial and physiological processes each play a role in the etiology and experience of pain, effective pain management requires multidimensional, comprehensive treatment approaches. Considering the significant impact of pain on functional outcomes and quality of life among children with SCD, additional clinical trials are warranted to ensure that interventions are safe and efficacious.