Summary of Psychosocial Adjustment

Research findings consistently support the importance of assessing psychosocial functioning in youth with SCD, indicating that the combined stress of chronic illness and other psychosocial challenges can lead to difficulties for these youth and their families (see Table 17-2 for a summary of psychosocial difficulties in SCD). However, significant variability exists within children who have SCD, with many children and their caregivers exhibiting remarkable strength and resilience while coping with this disease (Barakat et al. 2006; levers-Landis et al. 2001). Psychosocial interventions should therefore be developed with considerations of both the unique risks and protective factors that affect psychosocial well-being in children with SCD and their families.

Table 17-2. Psychosocial adjustment in pediatric sickle cell disease

Domain of functioning

Findings in pediatric SCD

Emotional/behavioral well-being

High rate of internalizing symptoms (up to 50%) Low rate of externalizing symptoms

Health-related quality of life

Limitations in physical, psychological, and social functioning

Peer relations/social functioning

Limited participation in social activities Fewer friends

Low rates of participation in athletic and extracurricular activities

Adolescents' adjustment

Stress during transition from pediatric to adult care

Increased difficulties forming peer relationships

Increased social anxiety related to disease-related pain

Decreased self-esteem

Limited independence due to illness

Stress related to delayed puberty/maturation

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