Caregiver Perception of Sickle Cell Disease Stigma in Ghana: An Ecological Approach.
Ghana
Sickle cell disease
caregivers
ecological systems theory
stigma
Journal
Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners
ISSN: 1532-656X
Titre abrégé: J Pediatr Health Care
Pays: United States
ID NLM: 8709735
Informations de publication
Date de publication:
Historique:
received:
14
07
2020
revised:
01
08
2020
accepted:
01
08
2020
pubmed:
5
9
2020
medline:
16
10
2021
entrez:
5
9
2020
Statut:
ppublish
Résumé
Sickle cell disease (SCD) stigma is a major community health issue. The challenges of caring for someone with SCD can be overwhelming. We explored stigma and related factors for caregivers of pediatric patients with SCD in Kumasi, Ghana. Guided by the Ecological Systems Theory, we used in-depth interviews with a semistructured guide to learn about the perception of stigmatization for Ghanaian caregivers of patients with SCD. Overall, participants were knowledgeable about SCD. We identified three themes, including (1) blame for SCD, (2) public misconception about SCD, and (3) shame for the financial burden of SCD. Findings demonstrate the need to design an SCD stigma reduction program for caregivers, families, and the community. Providers need to consider SCD stigma and interaction with multiple ecological levels, including the family, community, health care system, culture, and health policy in Ghana. Findings can be used as a catalyst to explore the reduction of stigmatization in other sub-Saharan countries.
Identifiants
pubmed: 32883582
pii: S0891-5245(20)30209-1
doi: 10.1016/j.pedhc.2020.08.002
pmc: PMC7738399
mid: NIHMS1619356
pii:
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Pagination
84-90Subventions
Organisme : FIC NIH HHS
ID : D43 TW009345
Pays : United States
Informations de copyright
Copyright © 2020 National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.
Références
JAMA. 2014 Sep 10;312(10):1033-48
pubmed: 25203083
Issues Ment Health Nurs. 2018 Aug;39(8):675-686
pubmed: 29652215
Ethn Health. 2011 Aug-Oct;16(4-5):465-81
pubmed: 21797730
J Natl Med Assoc. 2010 Nov;102(11):1050-5
pubmed: 21141294
Ethn Health. 2011 Aug-Oct;16(4-5):343-59
pubmed: 21797722
N Engl J Med. 2019 Jan 10;380(2):121-131
pubmed: 30501550
Medicine (Baltimore). 2019 Mar;98(13):e14600
pubmed: 30921178
Am J Trop Med Hyg. 2017 Mar;96(3):735-740
pubmed: 27994105
Am J Health Promot. 1996 Mar-Apr;10(4):282-98
pubmed: 10159709
Health Soc Care Community. 2010 May;18(3):289-95
pubmed: 20113365
BMC Psychol. 2018 Oct 20;6(1):50
pubmed: 30342559
Health Soc Work. 2008 Aug;33(3):211-20
pubmed: 18773796
Br J Psychiatry. 2007 Mar;190:248-54
pubmed: 17329746
J Health Psychol. 2020 Jun 26;:1359105320935986
pubmed: 32588661
Res Nurs Health. 2001 Dec;24(6):518-29
pubmed: 11746080
J Pediatr Psychol. 2020 Jun 1;45(5):561-572
pubmed: 32374404
J Health Psychol. 2016 May;21(5):808-20
pubmed: 24997169
J Genet Couns. 2014 Apr;23(2):192-201
pubmed: 23881472
Int J Hematol Res. 2017;3(1):171-179
pubmed: 30035240