Improving access to asthma care for children and adolescents in Uganda
Lead Research Organisation:
Makerere University
Department Name: College of Health Sciences
Abstract
Asthma is the commonest long-term disease in children across the world, but mainly affects those in low-income countries like Uganda. They suffer from severe and frequent asthma symptoms and attacks, and this leads to very frequent emergency clinic visits and hospital admissions. A lot of scare financial resources are spent on these visits, children miss school, and their caregivers miss work, driving families deeper into poverty and contributing to the widening health gap within and between countries. Both the affected children and their caregivers experience psychosocial challenges including stigma, which contributes to the overall poor quality of life of the affected persons and their families. The uncontrolled asthma symptoms also increase the risk of developing other long-term diseases like Chronic Obstructive Pulmonary Disease. Therefore, it is extremely important that children with asthma symptoms are identified early and given appropriate care to minimize the physical, economic and psychosocial problems described above. However, evidence from research in Uganda and similar countries shows that many children with asthma symptoms are not diagnosed and/or treated appropriately even when they frequently interface with health systems. This is partly due to the inadequate knowledge and skills of healthcare providers, and lack of innovative and locally relevant ways to improve identification of children with asthma symptoms. This study aims to understand whether innovations like checking every child and adolescent visiting primary care health facilities for asthma symptoms can lead to an increase in the number of children diagnosed with asthma, and whether education about asthma directed to patients and their caregivers can lead to improvements in the understanding of asthma, use of medicines and subsequent reduction in frequency of symptoms. The study will describe how and whether the training and mentoring of healthcare workers in the health facilities can lead to improvements in identifying and managing children with asthma symptoms. The study will also describe the psychosocial challenges faced by children and adolescents with asthma, and their caregivers. The health facilities in the study site (Jinja district in South Eastern Uganda) will be randomly divided into two groups. In one group, the healthcare workers will be given a standard form to be used to check for asthma symptoms among children and adolescents who will present with symptoms of lung diseases such as cough and difficult breathing. The second group will continue their usual practices of care. Data on the number of children diagnosed with asthma before and during the study will be collected and compared to determine whether the routine checking for asthma symptoms can increase the number of children diagnosed with asthma. A similar approach will be used in another study in which community health workers will be oriented about asthma and participate in educating the patients about asthma and asthma care, and how this can lead to better health for the affected children. In addition, healthcare workers in one health facility will be trained and mentored on diagnosis and management of the children and adolescents with asthma. The process will also involve holding discussions on the best approaches to be used, and documentation of the whole process to derive lessons which can be used in future similar research aimed at finding out if training and mentorship can lead to good control of asthma symptoms. This will be a pilot study. The data on psychosocial challenges will be collected by conducting individual and group explorative interviews. It is anticipated that the findings from the study will inform efforts to integrate asthma care into routine primary care services using evidence-based interventions.
Technical Summary
Asthma is the commonest non-communicable disease in children and adolescents but is under-diagnosed. Many children have severe and uncontrolled symptoms due to sub-optimal care, and this affects their growth and development, academic achievements, and co-curricular activities. Uncontrolled asthma increases the risk of Chronic Obstructive Pulmonary Disease, is associated with high healthcare costs, missed workdays for caregivers and poor quality of life for the affected children and their caregivers. Low- and middle-income countries (LMICs) disproportionately suffer high asthma-related morbidity and mortality. Despite the availability of comprehensive standard guidelines on asthma care like the Global Initiative for Asthma guidelines, many children with asthma symptoms remain undiagnosed and/or get sub-optimal care, leading to poor symptom control. Studies in Africa have indicated poor adherence to asthma guidelines, low knowledge and skills of healthcare workers and poor access to medicines and diagnostics for asthma, as factors that are partly responsible for the high asthma morbidity and mortality. We aim to investigate how to improve the diagnosis and management of children with asthma through interventions that are relevant to the local context, building on the NIHR-funded ACACIA (Achieving Control of Asthma in Children In Africa) study that identified a high burden of asthma in school adolescents. Specifically, we shall investigate 1) The feasibility, acceptability and effectiveness of routine screening for asthma symptoms in children and adolescents with respiratory illnesses, 2) the feasibility, acceptability and effectiveness of needs-directed training and clinical mentorship in improving the diagnosis and management of children with asthma, 3) the feasibility, acceptability and effectiveness of community health worker-led asthma education in improving asthma outcomes and 4) the psychosocial challenges experience by children and adolescents with asthma.
Description | East Africa-Liverpool Lung Health Group |
Organisation | University of Liverpool |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | The collaboration involves academic researchers from the University of Liverpool UK, Aga Khan University in Nairobi Kenya and Makerere University Lung Institute Uganda (MLI). I participated in a partnership grant application although we were not successful. I also participate in discussing research ideas targeting upcoming grant calls, and the monthly meetings to discuss clinical cases and upcoming evidence in paediatric lung health |
Collaborator Contribution | The partners participate in the writing research grants, case presentations and scientific discussions. They also help to coordinate the group and keep us engaged. |
Impact | There are no outputs yet from the collaboration. We have had grant applications but not successful. The team comprises Clinicians from UK, Kenya and Uganda |
Start Year | 2023 |
Description | Troubled Breathing |
Organisation | University of Lausanne |
Country | Switzerland |
Sector | Academic/University |
PI Contribution | We organized and successfully delivered a one-day stakeholder engagement workshop. The workshop aimed at bringing together stakeholders on air pollution and respiratory health, to discuss the understanding, interventions/actions, perspectives of citizens around air pollution and health. We also discuss how this can shape the research on air pollution as a key risk factor for respiratory diseases in asthma particularly in low-income countries. |
Collaborator Contribution | The partners supported the technical preparations for the workshop (technical content, led the presentation and discussions) and visited institutions involved in air quality monitoring in urban places in Uganda. |
Impact | The workshop report provided insights into the perspectives, activities, potential roles of various stakeholders in engaging with communities and understanding how to incorporate citizen science in research on air pollution and health. It was noted that this has been a missing link and potentially responsible for the low impact of many air pollution intervention. The workshop also involved a Scientist from University of Glasgow, UK who is part of the partnership. We are currently developing a research project around this and plan to apply for a grant to conduct research on citizen science, air pollution and health. We have enrolled one Early Career Researcher based at Makerere University Lung Institute, Makerere University and the team will provide mentorship support |
Start Year | 2024 |
Description | A stakeholder meeting on improving asthma care in Nabisunsa Girls' Secondary School |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Schools |
Results and Impact | The aim of the stakeholder meeting was to discuss ways through which the care of students with asthma can be improved. The activity was prompted by results from a study that had shown that students with asthma, teachers and parents face a lot of challenges regarding asthma care, especially during the school term, including several asthma exacerbations leading to school absenteeism m, stress to the child, school and parents. Our team organized a meeting with the students with asthma, their parents/guardians, the school nurse and teachers. The meeting was conducted at school and started with a presentation on asthma (description, signs and symptoms, goal principles of care, asthma medicines). It was followed by an open discussion on what the participants thought about asthma and care, and key issues raised included the repeated exacerbations, sub-optimal care at home and at school, triggers within the school environment especially dust, and the anxiety experienced by parents and school due to uncontrolled asthma among the students. The poorly-equipped school bay was also discussed. Outcome- participants proposed some solutions including parents being more involved in supporting the care of their children like ensuring that they have the right medications, provide them with warm/extra sweaters, learn more about asthma and available support. It was also agreed that the school nurses required onjob training to manage asthma exacerbations. The school promised to tackle the issue of air pollution in the school by paving the dusty areas and start on the process of transitioning to cleaner cooking energy and technologies. Parents pledged to be involved in efforts to increase awareness about asthma. A group of parents with asthma was formed and plans are underway action the issues that were raised using a participatory approach. |
Year(s) Of Engagement Activity | 2024 |
Description | Engagement workshop for National level stakeholders in childhood asthma |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Policymakers/politicians |
Results and Impact | The one-day stakeholder engagement workshop aimed to increase awareness about the burden of asthma in children in Uganda and highlight the challenges faced by children with asthma, their caregivers, the health and school systems, with a focus on care. The workshop also highlighted the anticipated contribution from the study towards bringing the gaps in care through simple interventions at primary care settings. The workshop was attended by 62 participants including the Director of Clinical services and Commissioners from the Ministry of Health, school teachers, caregivers of children with asthma, healthcare practitioners including physicians and paediatricians, Presidents of Uganda Paediatric Association, Adolescent Health Specialist, Lectures from health training institutions, health care planners and administrators from Jinja district and regional referral hospital, Community Advisory Board members, representatives of the Trial Steering Committee and researchers. The discussions highlighted the roles of the ministries of health in the cascade of asthma care including having trained health workers and school nurses/doctors, availability of medicines and diagnostics as well as ongoing surveillance on the burden of asthma through the monthly health facility reports. Caregivers of children with asthma, school teachers and health care providers shared experiences on the challenges they face while caring for children with asthma including delayed diagnosis and frequent use of costly but ineffective antibiotics and cough syrups. There was a call on the Ministry of Health to put asthma care among the top priorities in the country and accordingly plan for the much- needed training of health workers, medicines and supplies and health education using various platforms including media. The Ministry of Health officials applauded the efforts of researchers in providing evidence on practical solutions to addressing the asthma care challenges in Uganda including delayed diagnosis, healthcare worker capacity strengthening and asthma education through local community health workers. They specifically requested for the sharing of results as soon as they were available. They indicated that the proposed research held a promise to increase the identification of children with asthma and this information would be captured in the monthly reports, and this would help the country to know the burden of asthma and inform plans. |
Year(s) Of Engagement Activity | 2024 |
Description | Radio talk show on asthma |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Public/other audiences |
Results and Impact | The radio talk show was about asthma. It was aimed at increasing awareness about asthma in the general population, through highlighting the burden, common symptoms approaches to management. We also addressed common myths and misconceptions about a diagnosis of asthma and inhalers. The radio station is in a rural setting and covers 3 districts with a population of about 1.5M people. However, the total number of people reached for this talk show is not known due to difficulties in obtaining such data. However, we noted that there was a regular health talk show at the same time and that it was popular, based on the call-ins. It was a one-hour talk show during which there was an opportunity for the listeners to call in and ask questions. Based on the questions raised, it was noted that the awareness about asthma is still a big challenge, with many people referring to people with asthma symptoms as having allergy or allergic cough. It was also noted that many people still treat asthma symptoms with antibiotics, and chronic care for asthma was non-existent in many health centres. Regarding inhaler use, there is low awareness about inhalers in general, but even in a few cases where people know about them, there are many fears and doubts about there effectiveness in treating asthma because mot people are used to tablets and injections. Inhalers are also not available in many health facilities and people have to purchase them in private pharmacies and this was noted to be a big barrier to asthma care. The radio talk show highlighted many areas related to this project (improving access to asthma care for children and adolescents in Uganda) which will be explored during data collection to inform interventions for improvements. It was a one-hour talk |
Year(s) Of Engagement Activity | 2024 |