Exploring Resilience and Adaptation in Adolescents with Sickle Cell Disease

Living with sickle cell disease (SCD) can be a significant adversity due to disease-related symptoms and complications. Compounding these challenges, SCD predominantly affects ethnic minority populations already vulnerable to societal stigmatization, discrimination, and health disparities. It is important to recognize the negative impact of this chronic illness on psychosocial functioning; however, there is value in utilizing a strengths-based approach to determine how to promote adaptation to a challenging life-long disease. The current study explored the association among pain characteristics, adolescent, caregiver, and family protective factors, and functioning outcomes. Another primary aim of this study was to apply the protective factor model of resilience based in resilience theory to pediatric SCD by evaluating the moderating effect of adolescent, caregiver, and family protective factors on the relation between SCD pain burden and functioning outcomes. 93 12- to 18-year-olds with SCD and their caregivers were recruited from a large Southeastern children’s hospital. Adolescents completed measures assessing pain intensity and frequency, general and pain-specific protective factors, and functional outcomes. Caregivers completed measures assessing demographic and disease variables, psychological flexibility, and family functioning. Correlation analyses revealed that the majority of variables were related in expected directions and supported previous research. Adolescent protective factors were generally associated with one another and increased functional ability and quality of life. With the exception of family functioning, caregiver and family variables were not related to primary outcomes. After controlling for demographic, pain, and disease variables, moderation analyses showed that adolescent pain acceptance buffered the relation between SCD pain burden and quality of life. Contrary to hypotheses, moderating effects were not significant for the remaining adolescent, caregiver, and family protective factors. Findings highlight the importance of continuing to identify individual, caregiver, family, and broader environmental protective factors and evaluate resilience mechanisms among adolescents with SCD. Pain acceptance may also be a critical variable to target in future pain-focused interventions. Utilizing a strengths-based approach might lead to novel clinical avenues to empower youth to positively adapt to a chronic illness characterized by pain