Study backed by a £1.5m grant to improve HIV/AIDS care in Ghana

This grant is one of the largest of its kind and represents a significant achievement for an early career academic with a background in nursing.

The study, titled ExtraCECI (Extra community-based enhanced care intervention) aims to recruit around 650 patients. A smaller feasibility study of CECI suggested that participants felt the approach had the potential to improve their quality of life.

ExtraCECI will see medics from randomly selected HIV clinics trained to give a holistic assessment of the physical, psychological, social, and spiritual well-being, of their patients. This will then allow them to work together to plan and deliver their care in an outcome-focused approach.

ExtraCECI is now set to get underway this month after being backed by funding from the Medical Research Council. If successful, the results of this research may provide evidence to help make ExtraCECI a part of routine HIV/AIDS care in Ghana, helping those affected for years to come.

Professor Andrea Nolan, Principal and Vice Chancellor of Edinburgh Napier University, said: “Securing such a significant level of backing for this programme of work is a major achievement for Mary.

“Given her background in nursing, she will be well aware of how ExtraCECI has the potential to make a positive difference to people’s lives in Ghana.

Although led by Dr Mary Abboah-Offei from ENU’s School of Health and Social Care and Centre of Biomedicine and Global Health, it will also involve academics and researchers from Kings College London, the University of York, and the University of Ghana. Read the full news story here: https://www.napier.ac.uk/about-us/news/extraceci

Hear from Dr Mary Abboah-Offei:

Dr Abboah-Offei, who is from Ghana, began her journey in healthcare research by working as a nurse in emergency care there. Working as a nurse at Surgical-Medical Emergency Unit of the Korle-bu Teaching Hospital in Ghana provided the opportunity for me to care for patients with various diagnoses including HIV/AIDS. I was particularly drawn to HIV/AIDS as most of the patients I encountered with the disease often deteriorate rapidly due to the shock of discovering that they were HIV positive. I began to investigate how best to care for and support such individuals to improve their well-being, health outcomes, and quality of life. People living with HIV/AIDS (PLWHA) have complex physical, psychological, social, and spiritual needs following diagnosis and poorer health related quality of life (QoL) than the general population. However, the greatest attention has been paid to viral suppression at the expense of broader psychological, social, and spiritual concerns that persist despite treatment advances. Thus, care that addresses the multidimensional concerns of PLWHA requires a person-centered approach, nevertheless, person-centered care (PCC) is an approach that evolved in high-income settings with limited data available to model contextually and culturally appropriate PCC in Ghana.

As a staff nurse, with limited research background, I sought for an opportunity to advocate for PCC for PLWHA in the context of Ghana backed by research evidence. Therefore when I got the opportunity to study masters in nursing at Queen Margaret University, I developed a research proposal to explore the potential of integrating palliative care into HIV/AIDS care for my masters dissertation; knowing fully well that palliative care addresses broader psychosocial and spiritual concerns of patients using a person-centred approach. Considering the duration of the masters programme, I could not implement this proposal, which means that I had to find another opportunity where my proposal can come to fruition. Two years after my masters degree, I won a fully funded scholarship from the Ghana Education Trust Fund to do my PhD at King’s College London using the research proposal I developed for my masters dissertation. At this point I knew the time had finally come to implement my proposal to in order to generate evidence to enable an acceptable and feasible practice of PCC in Ghana. So for my PhD, I followed the Medical Research Council (MRC) guidelines for developing and evaluating complex interventions, where I completed the first two stages (intervention development and feasibility testing) of the MRC framework. The intervention I developed and tested was community-based enhanced care intervention (CECI) with components including : (i) a training programme for healthcare professionals on person-centred communication, (ii) holistic assessment of PLWHA’s symptoms and concerns in the domains of physical, psychological, social, and spiritual wellbeing using a structured tool, (iii) a care plan to facilitate collaborative care planning and delivery, (iv) mentorship support for healthcare professions and fidelity monitoring. The CECI gave us some potential effects that we currently want to test its effectiveness and cost effectiveness, which is also the implementation of stage 3 (Evaluation of effectiveness and cost-effectiveness) of the MRC framework. Key lesson learnt is about the value of involving PLWHA in their care decisions, which is a motivation for adherence and an ‘extra’ component being added for CECI refinement to empower PLWHA to engage, participate and contribute to their care decisions, hence the name ‘ExtraCECI’.

Consequently, I am very thrilled to have received this funding from the MRC together with my collaborating institutions, whom I have established links with during my PhD and Post-doc period to be able to deliver the ExtraCECI project. King’s College London where I developed and tested CECI will be providing mentorship to support my development as an early carrier researcher as well as lead the capacity strengthening aspect of the project, working with all early career researchers on the project on research leadership and person-centred care skills tailored to researcher needs. University of York where I did my post-doc and have established links with the York Trials Unit, with expertise in cluster randomised controlled trials, the main methodology for the ExtraCECI project. They will also lead capacity strengthening in clinical trial leadership, process evaluation, training early career researchers and to build capacity towards establishing a trials unit in Ghana. Finally, University of Ghana is hosting the ExtraCECI project in Ghana, where majority of project staff will be based, enabling strong low- and middle-income country leadership, making adequate provision for training and support for early career researchers.

I am delighted to have the opportunity to begin this study. Having previously worked in healthcare in my home country, this feels like a way of giving back. Looking back on my journey from working as a nurse and having this vision to improve care outcomes and quality of life for PLWHA about 15 years ago, this meant the world to me because I could have given up along the way. However my passion and determination to be an advocate for person-centred care has brought me this far. I am particularly excited to be leading this project as my ultimate dream would be to see person-centred care adapted as part of routine care for PLWHA as well as replicated to the whole health system in Ghana. Person-centred care puts the individual at the centre of their care, helping them to access the care they need, when they need it, by involving them in their own care decisions.

I hope this wider trial can lead to a better quality of life for people living with these conditions.

The Silent Struggle: Polycystic Ovary Syndrome (PCOS)

A hidden struggle affects many individuals: Polycystic Ovary Syndrome (PCOS).

PCOS is complex, with impacts spanning ethnicities, ages, and geographical regions, yet remains underexplored. PCOS disrupts hormonal balance, affecting ovaries and leading to irregular periods and potential fertility issues. It also goes beyond fertility issues, involving metabolic disruptions, which persist beyond reproductive years.

Breaking the Silence:

Discussing PCOS is challenging due to societal stigma, lack of awareness, and cultural taboos surrounding women’s health. Breaking down these barriers and fostering open conversations about PCOS is essential in creating a supportive environment where individuals can seek help. Understanding the diverse experiences of PCOS sufferers is critical in effectively addressing this common syndrome.

Knowledge empowers:

Providing accurate information on PCOS management is key to empowering those affected. This involves understanding the diverse ways PCOS manifests, exploring treatments, and embracing healthy lifestyles. Regular physical activity, dietary considerations and stress management techniques can significantly improve symptoms and overall well-being.

Building Support Networks:

Living with PCOS doesn’t have to be a solitary struggle.  Joining PCOS communities allows us to share experiences and find strength in one another, breaking down isolation. Connecting with others facing similar challenges allows us to share experiences and exchange advice. Support networks can also shape future resource development. Emotional support, self-care, utilising available resources and acknowledging that each person’s journey with PCOS is unique are important.

Navigating the intricacies of PCOS requires collaboration between individuals, healthcare professionals, and the broader community. Healthcare providers play pivotal roles in diagnosis, intervention, and management of PCOS. Fostering greater understanding of PCOS among healthcare professionals ensures care addresses both physical and emotional aspects of the condition. Public awareness campaigns have a powerful role in dismantling the silence surrounding PCOS, and can reach a wide audience, encouraging open dialogue, and dispelling misconceptions that contribute to the stigma associated with PCOS.

The Role of PCOS Relief (Charity Number: SC051494)

PCOS Relief has a vital role in empowering those with PCOS, including those from ethnic minority communities. By providing tailored support, resources, and information, PCOS Relief aims to bridge the gap in access to care and create a safe space to connect and share experiences.

PCOS Relief is committed to data-driven support, and promotion of research to illuminate nuances of the condition across diverse populations, whilst pushing for improved healthcare outcomes for all. Through initiatives such as culturally sensitive support groups, educational workshops, and advocacy campaigns, PCOS Relief will dismantle the stigma surrounding the condition and empower individuals from all backgrounds to take control of their health. For further information, visit https://pcosrelief.org/

Conclusion:

By equipping ourselves with knowledge, seeking support, and fostering open conversations, we can break the silence and build a future where PCOS is understood, managed, and ultimately destigmatised. Together, we can create a world where those affected by PCOS are not defined by their condition but empowered to live life on their terms.

Next steps:

Join us on Thursday 7 March, 6:00 – 8:30pm, at Edinburgh Napier University, to discuss the lived experience of PCOS, how a diagnosis is made, and what it really means, as well as what support exists (both medical and beyond). We will showcase local research that aims to make a difference in understanding and treating this disease. But most importantly, we want you to ask the questions that matter, we want you to tell us what’s required.

This event is a joint initiative between Edinburgh Napier University and the charity PCOS Relief. It is open to all, so if you want to learn more about what PCOS is, and how it affects people, please come along.

REGISTER TODAY

The Connection Between Cattle, Methane, and Human Health: Improving Animal Health for Sustainable Livestock Production

It may not be initially apparent, but there is a significant link between cattle, methane emissions, and human health. The agricultural sector is a major contributor to greenhouse gas emissions, and a substantial portion of these emissions come from ruminant animals like cattle, sheep, and goats. These animals rely on microbes in their stomachs to digest plant material, but this digestive process also produces methane, a highly potent greenhouse gas.

While there is a growing discussion about reducing livestock consumption in wealthier countries, many individuals in lower-middle-income countries (LMICs) struggle with protein deficiency, leading to various health issues, particularly in young children. As the African population continues to increase, the demand for livestock products is also on the rise, but this poses challenges in terms of sustainability and climate resilience. How can we meet the growing demand for animal products while minimizing the environmental impact of livestock production?

One approach is to focus on improving animal health. Currently, disease accounts for a significant loss of animal production worldwide, with even higher numbers in LMICs. An ongoing project aims to measure the specific effects of various conditions on productivity and greenhouse gas emission intensity (the amount of GHG produced per kilogram of product). While the results are still preliminary, recent findings have shown:

Miscarriage among Tanzanian dairy cattle leads to a loss of milk and meat production, increasing the GHG emissions intensity of existing products by up to 14%. These losses could have supplied the protein needs of 1 million Tanzanians.

The mortality rate of beef calves within the first year of life in Kenya increases the GHG emissions intensity of Kenyan beef products by 6% and results in a loss of production that could have supplied beef to 3.6 million Kenyans.

By focusing on improving animal health, we can work towards sustainably increasing livestock production while minimizing its environmental footprint. Addressing these issues is crucial for meeting the protein needs of individuals in LMICs and ensuring the long-term health of both people and the planet.

This work is a collaboration between, Edinburgh Napier University, The International Livestock Research Institute (ILRI), The Mazingira Centre (ILRI), The Centre for Tropical Livestock & Genetics, The Roslin Institute, Washington State University, The Nelson Mandela Institute (Arusha, Tanzania), Mekelle University (Ethiopia), FAO, The Global Research Alliance and the Environmental Defense Fund.

 Funding was obtained from the Environmental Defense Fund and Bill & Melinda Gates Foundation.