Family caregiving for adults with sickle cell disease and extremely high hospital use

Bibliographic Data

ID4226916
AuthorsShan-Estelle Brown (0000-0003-2559-0628, Yale School of Medicine, USA), Daniel F Weisberg (Brigham and Women's Hospital), William H Sledge (0000-0002-1478-4358, Yale School of Medicine, USA)
Year2016
Volume21
Issue12
Pages2893-2902
Publication date2016-12-01
Open AccessYes
TypeARTICLE
VenueJournal of Health Psychology (JOURNAL)
Journal identifiersISSN: 1359-1053 • E-ISSN: 1461-7277
PublisherSAGE Publications Inc (PUBLISHER)
DOI10.1177/1359105315588215
PMID26078296
OpenAlexW2238992103
LanguageEN
Citations received4
References cited35

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

Disease · Psychiatry · Chronic Disease Management Strategies · Hemoglobinopathies and Related Disorders · Iron Metabolism and Disorders · Medicine · Gerontology · Internal Medicine · Pediatrics

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