Social support networks of adults with sickle cell disease

Abstract

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.

Adapting a conceptual framework to engage diverse stakeholders in genomic/precision medicine research

“…Engagement should begin with the establishment of community-vetted processes, including consultation with tribal governments, when appropriate. Other aspects of engagement include integration of communities' knowledge, priorities and concerns to create community and participantcentred programmes; strategies facilitating partnership synergy, promoting colearning and considering the resources required for communities to engage; development of policies, education and training (for both community members and researchers) and integration of community viewpoints in the design, conduct, dissemination and evaluation of research 23,24.…”

Transition in Sickle Cell Disease (SCD): A German Consensus Recommendation

“…It is well known that leaving a familiar environment presents an emotional stress factor. The goal is to improve care for these chronically ill young adults, strengthen compliance and ensure integration into the adult world, including medical care [ 38 , 39 ]. Core Statements Always give the patient the opportunity to transiently return to his pediatric specialist if this is desired (depending on local opportunities).…”

“…It is well known that leaving a familiar environment presents an emotional stress factor. The goal is to improve care for these chronically ill young adults, strengthen compliance and ensure integration into the adult world, including medical care [38,39].…”

Variability in sickle cell knowledge by sickle cell status

“…Support received by those with sickle cell disease may be structured by kinship role (e.g., parents, siblings, and partners) and sickle cell status. For example, siblings with sickle cell disease were more likely to receive support from other siblings with sickle cell disease than siblings with negative or unknown status (Desine et al, 2021). This patterning may reflect differential disease knowledge based on sickle cell status, pointing to a potential need for both patient and family education on sickle cell disease and trait.…”