Barriers to supportive care during the Ebola virus disease outbreak in West Africa: Results of a qualitative study

© 2018 Loignon et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Background During the 2013–2016 West Africa Ebola outbreak, supportive care was the only non-experimental treatment option for patients with Ebola virus disease (EVD). However, providing care that would otherwise be routine for most clinical settings in the context of a highly contagious and lethal pathogen is much more challenging. The objective of this study was to document and deepen understanding of barriers to provision of supportive care in Ebola treatment units (ETUs) as perceived by those involved in care delivery during the outbreak. Methods This qualitative study consisted of 29 in-depth semi-structured interviews with stakeholders (decision-makers, physicians, nurses) involved in patient care delivery during the outbreak. Analysis consisted of interview debriefing and team-based transcript coding in NVivo10 software using thematic analysis. Findings Participants emphasized three interconnected barriers to providing high-quality supportive care during the outbreak: 1) lack of material and human resources in ETUs; 2) ETU organizational structure limiting the provision of supportive clinical care; and 3) delayed and poorly coordinated policies limiting the effectiveness of global and national responses. Participants also noted the ethical complexities of defining and enacting best clinical practices in low-income countries. They noted tension between, on one hand, scaling up minimal care and investing in clinical care preparedness to a level sustainable in West Africa and, on the other, providing a higher level of supportive care, which in low-resource health systems would require important investments. Conclusion Our findings identified potentially modifiable barriers to the delivery of supportive care to patients with EVD in West Africa. Addressing these in the inter-outbreak period will be useful to improve patient care and outcomes during inevitable future outbreaks. Promoting community trust and engagement through long-term capacity building of the healthcare workforce and infrastructure would increase both health system resilience and ability to handle other outbreaks of emerging diseases

COVID-19 in sub-Saharan Africa: impacts on vulnerable populations and sustaining home-grown solutions

© 2020, The Canadian Public Health Association. This commentary draws on sub-Saharan African health researchers’ accounts of their countries’ responses to control the spread of COVID-19, including social and health impacts, home-grown solutions, and gaps in knowledge. Limited human and material resources for infection control and lack of understanding or appreciation by the government of the realities of vulnerable populations have contributed to failed interventions to curb transmission, and further deepened inequalities. Some governments have adapted or limited lockdowns due to the negative impacts on livelihoods and taken specific measures to minimize the impact on the most vulnerable citizens. However, these measures may not reach the majority of the poor. Yet, African countries’ responses to COVID-19 have also included a range of innovations, including diversification of local businesses to produce personal protective equipment, disinfectants, test kits, etc., which may expand domestic manufacturing capabilities and deepen self-reliance. African and high-income governments, donors, non-governmental organizations, and businesses should work to strengthen existing health system capacity and back African-led business. Social scientific understandings of public perceptions, their interactions with COVID-19 control measures, and studies on promising clinical interventions are needed. However, a decolonizing response to COVID-19 must include explicit and meaningful commitments to sharing the power—the authority and resources—to study and endorse solutions

Effective practices of international volunteering for health : perspectives from partner organizations

Abstract: The demand for international volunteer experiences to promote global health and nutrition is increasing and numerous studies have documented the experiences of the international volunteers who travel abroad; however, little is known about effective practices from the perspective of partner organizations. This study aims to understand how variables such as the skill-level of volunteers, the duration of service, cultural and language training, and other key variables affect partner organizations’ perceptions of volunteer effectiveness at promoting healthcare and nutrition..

Action to protect the independence and integrity of global health research

Storeng KT, Abimbola S, Balabanova D, et al. Action to protect the independence and integrity of global health research. BMJ GLOBAL HEALTH. 2019;4(3): e001746

Joint Healthcare Professional and Patient Development of Communication Tools to Improve the Standard of MS Care

INTRODUCTION Effective communication between patients and healthcare professionals (HCPs) is important to enhance outcomes in multiple sclerosis (MS). However, in practice, patients often report a disconnect in communication. Communication tools to aid patient-HCP communication have a long history of use in many chronic conditions. For example, symptom diaries have been shown to enhance outcomes in cancer, headache and sleep disorder management. MS in the 21st Century, a Steering Group of HCP specialists and patients with MS (PwMS), has created two communication tools designed for use by both patients and their HCPs. METHODS The Steering Group first identified prominent issues in patient-HCP communication through group discussions and survey data. Following this, a series of workshops led to the development of two communication tools as potential solutions to these identified issues in communication. RESULTS The two most prominent issues identified were HCP time constraints during appointments and the misalignment of patient and HCP priorities-the communication tools developed through the workshops were created to address these. The "myMS priorities" tool [see supplementary materials] is designed to maximize the use of consultation time while the "myMS commitments" tool [see supplementary materials] aims to improve patient-HCP shared decision-making. CONCLUSIONS The MS in the 21st Century Steering Group adopted a broad, iterative and collaborative approach in the development of these tools to help ensure they would be as useful as possible to both HCPs and PwMS. These tools have been developed through shared patient-HCP expertise and are based on existing tools in other therapy areas as well as a review of the existing literature and data from MS in the 21st Century Steering Group surveys. The next steps will focus on the validation of these tools through testing them in real-world environments and clinical trials. FUNDING Merck KGaA, Darmstadt, Germany

Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: A combined perspective from the MS in the 21st Century Steering Group

BACKGROUND: Patient engagement is vital in multiple sclerosis (MS) in order to optimise outcomes for patients, society and healthcare systems. It is essential to involve all stakeholders in potential solutions, working in a multidisciplinary way to ensure that people with MS (PwMS) are included in shared decision-making and disease management. To start this process, a collaborative, open environment between PwMS and healthcare professionals (HCPs) is required so that similarities and disparities in the perception of key areas in patient care and unmet needs can be identified. With this patient-centred approach in mind, in 2016 the MS in the 21st Century Steering Group formed a unique collaboration to include PwMS in the Steering Group to provide a platform for the patient voice. METHODS: The MS in the 21st Century initiative set out to foster engagement through a series of open-forum joint workshops. The aims of these workshops were: to identify similarities and disparities in the perception and prioritisation in three key areas (unmet needs, the treatment burden in MS, and factors that impact patient engagement), and to provide practical advice on how the gaps in perception and understanding in these key areas could be bridged. RESULTS: Combined practical advice and direction are provided here as eight actions: 1. Improve communication to raise the quality of HCP-patient interaction and optimise the limited time available for consultations. 2. Heighten the awareness of 'hidden' disease symptoms and how these can be managed. 3. Improve the dialogue surrounding the benefit versus risk issues of therapies to help patients become fully informed and active participants in their healthcare decisions. 4. Provide accurate, lucid information in an easily accessible format from reliable sources. 5. Encourage HCPs and multidisciplinary teams to acquire and share new knowledge and information among their teams and with PwMS. 6. Foster greater understanding and awareness of challenges faced by PwMS and HCPs in treating MS. 7. Collaborate to develop local education, communication and patient-engagement initiatives. 8. Motivate PwMS to become advocates for self-management in MS care. CONCLUSION: Our study of PwMS and HCPs in the MS in the 21st Century initiative has highlighted eight practical actions. These actions identify how differences and gaps in unmet needs, treatment burden, and patient engagement between PwMS and HCPs can be bridged to improve MS disease management. Of particular interest now are patient-centred educational resources that can be used during time-limited consultations to enhance understanding of disease and improve communication. Actively bridging these gaps in a joint approach enables PwMS to take part in shared decision-making; with improved communication and reliable information, patients can make informed decisions with their HCPs, as part of their own personalised disease management