Caregiver burden in Buruli ulcer disease: Evidence from Ghana

Amoako, Yaw Ampem, Ackam, Nancy, Omuojine, John-Paul, Oppong, Michael Ntiamoah, Owusu-Ansah, Abena Gyawu, Boat, Harriet, Abass, Mohammed Kabiru, Amofa, George, Ofori, Elizabeth, Okyere, Portia Boakye, Frimpong, Michael, Bailey, Freddie, Molyneux, David ORCID: https://orcid.org/0000-0001-8537-7947 and Phillips, Richard Odame (2021) 'Caregiver burden in Buruli ulcer disease: Evidence from Ghana'. PLoS Neglected Tropical Diseases, Vol 15, Issue 6, e0009454.

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Abstract

Background
Buruli ulcer disease (BUD) results in disabilities and deformities in the absence of early medical intervention. The extensive role of caregiving in BUD is widely acknowledged, however, associated caregiver burden is poorly understood. In this paper we assessed the burden which caregivers experience when supporting patients with BUD in Ghana.

Method/ principal findings
This qualitative study was conducted in 3 districts in Ghana between August and October 2019. 13 semi-structured interviews were conducted on caregivers of BUD patients in the local language of Twi. Data was translated into English, coded into broad themes, and direct content analysis approach was used to analyse results. The results show the caregivers face financial, psychological and health issues as a consequence of their caregiving role.

Conclusion/ significance
This study found significant caregiver burden on family members. It also highlighted the psychological burden caregivers experience and the limited knowledge of the disease within endemic communities. Further research is needed to quantify the caregiver burden of BUD at different economic levels in order to better understand the impact of possible caregiver interventions on patient outcomes.

Author summary
Buruli ulcer disease (BUD) is a stigmatizing skin condition caused by the bacteria, Mycobacterium ulcerans. The disease results in permanent functional limitations in the absence of early medical intervention. The disabling BUD conditions, financial constraints and frequent hospital visits support the role of caregiving for affected individuals. Caregiver burden is poorly understood although the role and need for caregiving is widely recognised in BUD. This study identified a previously unrecognized burden on the caregivers of BUD patients in 3 endemic districts in Ghana. Specifically, we identified significant financial and psychological pressure on affected families in meeting healthcare related costs and physical care while also providing for their own and other family members’ needs. We also highlight the emotional burden experienced by caregivers, their reduced work productivity, the barriers caregivers face in accessing healthcare with BUD patients and the limited support available for caregivers. Our study highlights the serious social consequences of BUD in Ghana. Further quantitative research within different economic regions affected by BUD is warranted to better understand the caregiver burden of BUD.

Item Type:	Article
Subjects:	QW Microbiology and Immunology > Bacteria > QW 125 Actinibacteria, Actinomycetales. WA Public Health > Health Problems of Special Population Groups > WA 395 Health in developing countries WC Communicable Diseases > Infection. Bacterial Infections > Other Bacterial Infections. Zoonotic Bacterial Infections > WC 302 Actinomycetales infections. Mycobacterium infections WC Communicable Diseases > Tropical and Parasitic Diseases > WC 680 Tropical diseases (General) WY Nursing > WY 20.5 Research (General)
Faculty: Department:	Biological Sciences > Department of Tropical Disease Biology
Digital Object Identifer (DOI):	https://doi.org/10.1371/journal.pntd.0009454
Depositing User:	Cathy Waldron
Date Deposited:	03 Jun 2021 11:14
Last Modified:	03 Jun 2021 11:14
URI:	https://archive.lstmed.ac.uk/id/eprint/17954

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