Understanding the Social Networks of Parents of Children with Sickle Cell Disease

Although there is substantial literature documenting the challenges of pediatric sickle cell disease (SCD) for children and their parents, there is limited research identifying how parents prioritize their needs and use their social networks to manage information regarding their child's SCD in terms of physical and mental health. We examined parents' perceived needs regarding child health issues as they relate to SCD; who and what sources of information are utilized by parents regarding SCD; the frequency with which they consult these resources; and the level at which they trust them. Parents in this study reported that mothers, physicians, the Internet, and books were key sources of support, guidance, and counsel regarding the health needs of children with SCD. These three sources were rated high in importance, trust, frequency of contact, and perceived supportiveness toward mental and physical health needs.