title: Family caregiving for adults with sickle cell disease and extremely high hospital use.
abstract: This study investigated coping with chronic illness in the adult patient-caregiver relationship for sickle cell disease, marked by debilitating acute and chronic pain. One-on-one interviews (N = 16) were conducted with eight primary caregivers of eight adults with extremely high hospital use, severe sickle cell disease with hospital admissions several times monthly over successive years. Caregivers were predominantly parents; two were romantic partners. Caregivers attributed disruptions to the disease's variability, tensions in how much support to give, and adults' inability to fulfill parental obligations. Both groups expressed fears of patients' increasing age, declining health, and early death. Targeted counseling and resilience training is recommended.
authors.affiliation: Yale School of Medicine, USA shan-estelle.brown@yale.edu.
authors.forename: Shan-Estelle
authors.initials: SE
authors.lastname: Brown
authors.affiliation: Brigham and Women's Hospital, USA.
authors.forename: Daniel F
authors.initials: DF
authors.lastname: Weisberg
authors.affiliation: Yale School of Medicine, USA.
authors.forename: William H
authors.initials: WH
authors.lastname: Sledge
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000755:Anemia, Sickle Cell / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D002908:Chronic Disease; D005195:Family Relations / Q000523:psychology*; D005260:Female; D006760:Hospitalization; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D012720:Severity of Illness Index; D018454:Spouses / Q000523:psychology*; D055815:Young Adult
keywords: adults; chronic illness; coping; pain; social support