Amoako Yaw Ampem, Ackam Nancy, Omuojine John-Paul, Oppong Michael Ntiamoah, Owusu-Ansah Abena Gyawu, Abass Mohammed Kabiru, Amofa George, Ofori Elizabeth, Frimpong Michael, Bailey Freddie, Molyneux David Hurst, Phillips Richard Odame
Kumasi Centre for Collaborative Research in Tropical Medicine, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana.
School of Medicine and Dentistry, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana.
PLoS Negl Trop Dis. 2021 Jun 1;15(6):e0009454. doi: 10.1371/journal.pntd.0009454. eCollection 2021 Jun.
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.
布鲁里溃疡病（BUD）若未得到早期医疗干预，会导致残疾和畸形。人们普遍认识到在布鲁里溃疡病护理中照护工作的广泛作用，然而，与之相关的照护者负担却鲜为人知。在本文中，我们评估了加纳布鲁里溃疡病患者的照护者在提供支持时所承受的负担。
方法/主要发现：这项定性研究于2019年8月至10月在加纳的3个地区进行。用当地的特维语对布鲁里溃疡病患者的照护者进行了13次半结构化访谈。数据被翻译成英语，编码为宽泛的主题，并采用直接内容分析法分析结果。结果显示，照护者因其照护角色面临财务、心理和健康问题。
结论/意义：本研究发现家庭成员承担着巨大的照护者负担。它还凸显了照护者所经历的心理负担以及疾病流行社区内对该疾病的了解有限。需要进一步开展研究，以量化不同经济水平下布鲁里溃疡病的照护者负担，以便更好地理解可能的照护者干预措施对患者结局的影响。
