Chikumbu Edith F, Bunn Christopher, Kasenda Stephen, Dube Albert, Phiri-Makwakwa Enita, Jani Bhautesh D, Jobe Modu, Wyke Sally, Seeley Janet, Crampin Amelia C, Mair Frances S
Social Sciences Team, Malawi Epidemiology and Intervention Research Unit, Lilongwe, Malawi.
College of Social Sciences, University of Glasgow, Glasgow, Scotland, United Kingdom.
PLOS Glob Public Health. 2022 Mar 24;2(3):e0000139. doi: 10.1371/journal.pgph.0000139. eCollection 2022.
Multimorbidity (presence of ≥2 long term conditions (LTCs)) is a growing global health challenge, yet we know little about the experiences of those living with multimorbidity in low- and middle-income countries (LMICs). We therefore explore: 1) experiences of men and women living with multimorbidity in urban and rural Malawi including their experiences of burden of treatment and 2) examine the utility of Normalization Process Theory (NPT) and Burden of Treatment Theory (BOTT) for structuring analytical accounts of these experiences. We conducted in depth, semi-structured interviews with 32 people in rural (n = 16) and urban settings (n = 16); 16 males, 16 females; 15 under 50 years; and 17 over 50 years. Data were analysed thematically and then conceptualised through the lens of NPT and BOTT. Key elements of burden of treatment identified included: coming to terms with and gaining an understanding of life with multimorbidity; dealing with resulting disruptions to family life; the work of seeking family and community support; navigating healthcare systems; coping with lack of continuity of care; enacting self-management advice; negotiating medical advice; appraising treatments; and importantly, dealing with the burden of lack of treatments/services. Poverty and inadequate healthcare provision constrained capacity to deal with treatment burden while supportive social and community networks were important enabling features. Greater access to health information/education would lessen treatment burden as would better resourced healthcare systems and improved standards of living. Our work demonstrates the utility of NPT and BOTT for aiding conceptualisation of treatment burden issues in LMICs but our findings highlight that 'lack' of access to treatments or services is an important additional burden which must be integrated in accounts of treatment burden in LMICs.
多重疾病(存在≥2种长期病症)是一项日益严峻的全球健康挑战,但我们对低收入和中等收入国家(LMICs)中患有多重疾病的人群的经历知之甚少。因此,我们进行了以下探索:1)马拉维城乡患有多重疾病的男性和女性的经历,包括他们的治疗负担经历;2)检验规范化过程理论(NPT)和治疗负担理论(BOTT)在构建这些经历的分析描述方面的效用。我们对农村(n = 16)和城市地区(n = 16)的32人进行了深入的半结构化访谈;16名男性,16名女性;15名年龄在50岁以下;17名年龄在50岁以上。对数据进行了主题分析,然后通过NPT和BOTT的视角进行概念化。确定的治疗负担的关键要素包括:接受并理解患有多重疾病的生活;应对由此对家庭生活造成的干扰;寻求家庭和社区支持的工作;在医疗系统中周旋;应对缺乏连续护理的情况;实施自我管理建议;协商医疗建议;评估治疗;重要的是,应对缺乏治疗/服务的负担。贫困和医疗保健提供不足限制了应对治疗负担的能力,而支持性的社会和社区网络是重要的促成因素。更多地获取健康信息/教育以及资源更充足的医疗系统和更高的生活水平将减轻治疗负担。我们的工作证明了NPT和BOTT在帮助概念化LMICs中治疗负担问题方面的效用,但我们的研究结果强调,无法获得治疗或服务是一个重要的额外负担,必须纳入LMICs治疗负担的描述中。