Social support networks of adults with sickle cell disease

J Genet Couns. 2021 Oct;30(5):1418-1427. doi: 10.1002/jgc4.1410. Epub 2021 Apr 12.


Sickle cell disease (SCD) can cause both physical and psychological complications, such as severe pain and depression. These effects often necessitate social and caregiving support. Few studies have assessed support networks within the adult SCD population. Here, we describe the support networks of adults with SCD and identify who in these networks (1) provides emotional support, (2) is dependable during crisis situations, including social and financial adversities, and (3) provides assistance in health crises. Forty-nine adults with SCD completed surveys and social network assessments through interview. Generalized mixed-effects linear regression models were fitted to investigate the composition of support provision within these personal networks. Our findings indicate that parents and 'other important people' (e.g., friends, spouses) play key roles in the support provided to those with SCD. Siblings with SCD appeared to be more emotionally supportive than unaffected siblings. With much research centered around the pediatric and adolescent SCD populations, focus needs to extend to adults and the individuals involved in their care and disease management. Understanding the flow of support within these networks can help genetic counselors and healthcare providers to better identify both social ties that serve as support resources and less supportive relationships for individuals living with SCD and other chronic genetic conditions that might be targeted for intervention.

Trial registration: NCT02156102 NCT01633021.

Keywords: family; psychosocial; sickle cell disease; sickle cell trait; social support networks; support.

Publication types

  • Research Support, N.I.H., Intramural

MeSH terms

  • Adolescent
  • Anemia, Sickle Cell* / therapy
  • Child
  • Humans
  • Pain
  • Parents
  • Social Support
  • Surveys and Questionnaires

Associated data