title: Understanding the social networks of parents of children with sickle cell disease.
abstract: 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.
authors.affiliation: Cincinnati Children's Hospital Medical Center/University of Cincinnati College of Medicine, Cincinnati, OH 45229, USA. lisa.vaughn@cchmc.org
authors.forename: Lisa M
authors.initials: LM
authors.lastname: Vaughn
authors.forename: Daniel
authors.initials: D
authors.lastname: McLinden
authors.forename: Farrah
authors.initials: F
authors.lastname: Jacquez
authors.forename: Lori
authors.initials: L
authors.lastname: Crosby
authors.forename: Shalonda
authors.initials: S
authors.lastname: Slater
authors.forename: Monica
authors.initials: M
authors.lastname: Mitchell
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000755:Anemia, Sickle Cell / Q000628:therapy*; D002648:Child; D054626:Consumer Health Information; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D057226:Information Seeking Behavior; D020407:Internet / Q000706:statistics & numerical data; D008297:Male; D008875:Middle Aged; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D010817:Physician-Patient Relations; D012944:Social Support; D035502:Trust; D055815:Young Adult