Experience of living with type 1 diabetes in a low-income country: a qualitative study from Liberia

Abstract

IntroductionWhile epidemiological data for type 1 diabetes (T1D) in low/middle-income countries, and particularly low-income countries (LICs) including Liberia is lacking, prevalence in LICs is thought to be increasing. T1D care in LICs is often impacted by challenges in diagnosis and management. These challenges, including misdiagnosis and access to insulin, can affect T1D outcomes and frequency of severe complications. Despite the severe nature of T1D and growing burden in sub-Saharan Africa, little is currently known about the impact of T1D on patients and caregivers in the region.MethodsWe conducted a qualitative study consisting of interviews with patients with T1D, caregivers, providers, civil society members and a policy-maker in Liberia to better understand the psychosocial and economic impact of living with T1D, knowledge of T1D and self-management, and barriers and facilitators for accessing T1D care.ResultsThis study found T1D to have a major psychosocial and economic impact on patients and caregivers, who reported stigma, diabetes distress and food insecurity. Patients, caregivers and providers possessed the knowledge necessary to effectively manage T1D but insufficient community awareness leads to delayed diagnosis, often in an emergency department. Most patients reported receiving free services and materials, though the cost of transportation to clinic visits and recommended foods is a barrier to disease management. Many providers noted the lack of national T1D-specific guidelines and registries. Policy-makers reported a lack of prioritisation of and resources for T1D. These barriers, combined with scarcity and expense of appropriate foods, pose severe barriers for self-management of T1D.ConclusionT1D was found to have a significant impact on patients and caregivers, and informants identified several key individual and systems-level barriers to effective T1D care in Liberia. Addressing these concerns is vital for designing sustainable and effective programmes for treating patients living with T1D.

Evaluating implementation of Diabetes Self-Management Education in Maryland County, Liberia: protocol for a pilot prospective cohort study

“…Qualitative interviews conducted at this site found that challenges to diabetes management include high levels of poverty and food insecurity, low levels of literacy and numeracy, and high temperatures causing insulin damage, increasing the risk of diabetic ketoacidosis hospitalisation. 12 Patients travel long distances to the clinic monthly for consultations and insulin refills. All health services, medications, insulin and diabetes necessities (ie, glucometer, test strips, lancets and syringes) are provided to patients at no cost.…”

“…Frequency of SMBG and missed insulin doses were identified as priority self-management behaviours by local providers and in the qualitative assessment of T1D care in rural Liberia. 12 DSME mentors will collect data on core NCD providers’ utilisation of DSME, the use of the patient assessment tool, and frequency of referrals for interdisciplinary care by directly observing patient interactions and completing a mentoring checklist. Similar checklists have been effective in promoting retention of learning and improved quality of care for PLWD in rural Rwanda.…”

“…After learning more about the lived experience of PLWIDD in Liberia, local providers and leadership identified the need for a different approach to patient education, and have led the process of adapting DSME to local context and culture. 12 Study outcomes, specifically implementation outcomes, are designed to assess the effectiveness of this adaptation. A PAB will be established in phase 1 of the study, which will provide formative feedback to study staff and lead any process improvement initiatives related to clinic flow and structure.…”

Living with type 1 diabetes in Neno, Malawi: A qualitative study

“…This methodology follows that used in our previous qualitative study in Liberia and utilizes similar interview tools. 13…”

“…Our team previously conducted a qualitative study on T1D care at PIH-supported PEN-Plus clinics in Liberia and here we describe a similar study in Malawi to further build on this body of evidence. 13 In this study, we examine the impact of living with T1D, knowledge of the disease and self-management, and facilitators and barriers to T1D care at two clinics in Neno.…”