“I'm Talking About Pain”: Sickle cell disease patients with extremely high hospital use

2012 ◽  
Vol 8 (1) ◽  
pp. 42-46 ◽  
Author(s):  
Daniel Weisberg ◽  
Gabriela Balf-Soran ◽  
William Becker ◽  
Shan-Estelle Brown ◽  
William Sledge
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease ◽  
Hospital Use

scholarly journals Decreased fetal hemoglobin over time among youth with sickle cell disease on hydroxyurea is associated with higher urgent hospital use

2016 ◽  
Vol 63 (12) ◽  
pp. 2146-2153 ◽  
Author(s):  
Nancy S. Green ◽  
Deepa Manwani ◽  
Mahvish Qureshi ◽  
Karen Ireland ◽  
Arpan Sinha ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Fetal Hemoglobin ◽  
Cell Disease ◽  
Over Time ◽  
Hospital Use

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

2016 ◽  
Vol 21 (12) ◽  
pp. 2893-2902 ◽  
Author(s):  
Shan-Estelle Brown ◽  
Daniel F Weisberg ◽  
William H Sledge
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Family Caregiving ◽  
Hospital Admissions ◽  
Early Death ◽  
Romantic Partners ◽  
Cell Disease ◽  
Parental Obligations ◽  
Resilience Training ◽  
Hospital Use

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.

scholarly journals Sickle Cell Disease Patients With and Without Extremely High Hospital Use: Pain, Opioids, and Coping

2015 ◽  
Vol 49 (3) ◽  
pp. 539-547 ◽  
Author(s):  
Shan-Estelle Brown ◽  
Daniel F. Weisberg ◽  
Gabriela Balf-Soran ◽  
William H. Sledge
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease ◽  
And Coping ◽  
Hospital Use

Hemolysis in sickle cell disease

1974 ◽  
Vol 133 (4) ◽  
pp. 624-631 ◽  
Author(s):  
T. A. Bensinger
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease

Computerized cognitive training in pediatric sickle cell disease: A randomized controlled pilot study.

2020 ◽  
Vol 8 (4) ◽  
pp. 390-401 ◽  
Author(s):  
Taryn M. Allen ◽  
Lindsay M. Anderson ◽  
Samuel M. Brotkin ◽  
Jennifer A. Rothman ◽  
Melanie J. Bonner
Keyword(s):  
Pilot Study ◽  
Sickle Cell Disease ◽  
Cognitive Training ◽  
Sickle Cell ◽  
Cell Disease ◽  
Computerized Cognitive Training ◽  
Randomized Controlled ◽  
Pediatric Sickle Cell Disease
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