Introducing ARCLIGHT

Over one billion people globally struggle with issues related to mental health, including depression, substance abuse and self-harm. Lack of research in implementation and policy change is further impeded by stigma, capacity shortages, and fragmented service delivery. In collaboration with Guyanese communities and stakeholders, and funded by the British Academy[1], Dr Ann Mitchell (Lecturer in Mental Health Nursing, The Open University, UK) will lead ARCLIGHT[2], an ambitious new research project which will develop, implement and evaluate a capacity building and intervention programme for addressing the challenges of mental health in Guyana. The project will also be supported by Dr Tania Hart (Associate Professor in Mental Health and Learning Disability, de Montfort University), Dr Andrea Berardi (Senior Lecturer in Environmental Information Systems, The Open University), Mark Gaved (Lecturer in Learning Futures, The Open University), Dr Deirdre Jafferally (Research Associate, Cobra Collective), and Gareth Davies (Research Impact Evidence Manager, Research and Enterprise, The Open University). Kerese Collins is our highly qualified project manager.

Guyana is consistently ranked within the top five countries in the world with the highest suicide rates[3]. Mental health services are barely functional, with Guyana’s public health minister describing the country’s national psychiatric hospital as “not fit for human consumption”.  Guyana is also one of the most vulnerable countries in the world with respect to climate change impacts. Increases in extreme weather events, such as heatwaves, floods, droughts and wildfires, and vector-borne disease epidemics such as malaria and dengue, will inevitably exacerbate mental disorders. These disruptive effects will also increase pressures on public services, infrastructure and the wider economy, straining social functioning within families, communities and organisations, thus further deteriorating Guyana’s capacity to mitigate and adapt to climate change and its multiple development challenges.

The research will identify, record and share successful local practices for building community mental health resilience that have evolved to cope with challenging cultural, organisational and environmental conditions, and devise mechanisms to promote these in low resource settings within Guyana and worldwide. What makes this initiative innovative is how it will promote the collection and sharing of positive community stories through freely accessible local communication networks. Building on The Open University’s global leadership role in distance learning, the key outcome will be to establish a BSc honours degree in Mental Health Nursing in Guyana, which has gained enthusiastic support from the Guyanese government, the higher education sector, and civic society. Organisations supporting the project include the University of Guyana, Association of Guyanese Nurses and Allied Professionals, the Cobra Collective, and De Montfort University. The 18-month project started on the 1st of February 2019 and will conclude on the 30th of July 2020.

[1] This research project is funded by the British Academy’s Knowledge Frontiers: International Interdisciplinary Research Projects Programme.

[2] ARCLIGHT stands for ‘Action Research Community Led Initiative Guyana Health Team’.

[3] World Health Organization (2018) World Health Statistics data visualizations dashboard: suicide. (updated 04/05/18). URL: http://apps.who.int/gho/data/node.sdg.3-4-viz-2?lang=en [accessed 24/08/18]

 

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Presentation at The Open University

Mark Gaved presented the progress of the ARCLIGHT project at this year’s 40th anniversary CALRG conference at The Open University (‘Computers And Learning Research Group), 17th June 2019. Mark described the background context – challenges in supporting mental health in Guyana, and drawing from the ARCLIGHT team’s expertise, and the participatory approach to research we are taking.  He discussed how we were exploring the use of digital technologies to help capture stories, building on prior Open University work both in Guyana and in the EU funded MAZI project. There was strong interest in the project’s use of a combination of smartphones as familiar tools for the participants, and ‘offline networking’ Raspberry Pi’s running MAZI software to enable us to collectively gather and reflect on stories in community settings.

Audience members were interested to hear about the diverse range of participant experiences and challenges across Guyana, and how smartphones and networked technologies might be used to support learning  in places where internet connectivity couldn’t be assured. There was lively discussion around how to best support learning with technologies where there were heightened sensitivities to be taken into account: both personal subject matter, and ethical considerations to ensure participants weren’t put at risk. Evaluation was also discussed, and Mark explained how we were using the 6P’s framework developed by The Open University to ensure the impact of co-creation with participants also informs the impact of the developed learning resources.

A live ARCLIGHT MAZIzone was running in the room, and several members of the audience logged in and explored the tools the project is deploying.

Presentation: ARCLIGHT: offline networked tools for collecting positive mental health stories in Guyana

Authors:  Andrea Berardi, Kerese Collins, Gareth Davies, Mark Gaved, Tania Hart, Ann Mitchell

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Reflections on Mental Health in Guyana

Reflections from Kerese Collins, ARCLIGHT Project Manager

I first became aware of issues around mental health in Guyana around 2012. I had just returned home to Guyana after completing studies in Trinidad, and for reasons that now evade me I began to pay keen attention to the incidences of suicidal attempts among our people. As far as I was concerned, I had felt that 1 suicide was one too many. Eventually, I began to compile a list of the headlines in an effort to identify any trends I had noticed.

A few days later, my list-making project was interrupted when the WHO released their statistics, declaring that Guyana was the country with the highest suicide rate per capita. Suddenly, there were conversations, conferences and social media posts. Mental health came into view.

I was not surprised, but I do remember thinking, “Did we really need an international body to make this declaration before realizing what was happening in our own backyard?”

One of the challenges we face in Guyana is that of a heavy dependence on “outside” influences. We assume that anything from outside must be true, trustworthy and superior, whether or not its value has been tested. The result – we often feel there is not much we can offer.

But I have always believed that there is deep wisdom to be uncovered in the hearts of the Guyanese people. We have lived through diverse challenges, tragedies and disadvantages, spread over decades and for some reason, we just keep going. We just need to figure out how to tap in to that wisdom and learn from our past so that we could pioneer a better future.

This is why I appreciate Participatory Action Research (PAR). PAR embraces collaboration, rather than imposition of values and theories. It seeks to engage with those experts who live at the community level to learn from them. A result is the emergence of an empowered people, whose internal skills and history are among their most valuable assets. This is what I am most excited about.

What if we are more resilient than we ever dreamed possible? What if we could solve our own problems by being open about our common struggles? What if we focused on our stories of victory and success? What if there was more to our common experiences than pain and shame and doom?

The possibilities are endless.

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Reflections on a Guyana visit

Dr Tania Hart, from De Montfort University reflects on her visit to Guyana in May 2019

The World Health Organisation have identified 10 key threats to world health in 2019, one of which is weak primary health care systems (WHO, 2019).  WHO clearly sums up the benefits of good primary health care by stating it is the most efficient method of improving health outcomes, advancing universal health and achieving the United Nations sustainable development goal 3: of ensuring healthy lives and promoting well-being and better health for all ages. A good primary health care system, as seen in many high income countries, does not only prevent disease by managing vaccination programs, supporting the chronically ill and promoting better  palliative care, but most importantly, it  can also successfully empower people and communities by placing a greater emphasis on promoting and preventing better health and detecting early health care problems. This focus on empowering individuals to promote their own well-being and resilience is ARCLIGHT’s key emphasis.

In 2008, Guyana’s laid out its mental health sector strategy in a World Health Organisation commissioned document. This document stated that Guyana’s number one priority at the time should be, promoting better mental health and the need for movement of mental health care into the primary health care system. It also stated improvements in mental health can only come about through prevention (WHO Aims Report, 2008 Pp7). I would agree that this is where the focus should be. Having visited Guyana, however, I have seen firsthand, the complexity, of introducing a primary care system that places some of its focus on mental health. This is because despite Guyana’s small population of approx. 773,000, its primary mental health services are literally non-existent.  Non-Government organizations (NGO’s) are presently filling the gap as much as they can when it comes to mental health care. Plus stretched hospital services and a handful of qualified mental health practitioners, including psychiatrists, psychologists, psychotherapists, counsellors and general nurses, are trying their best to promote the mental health of the population, however services remain fragmented and not all inclusive.

This blog therefore outlines some of my key reflections, after visiting and talking to people who play a central role in operationalising and strengthening the primary care provision in Guyana’s capital of George Town and beyond.  These people, being university lecturers developing  training programmes in nursing and psychology and nursing officers overseeing nursing services throughout the 10 regions in Guyana. (The photo is taken outside the Nursing School in George Town, and standing between ARCLIGHTS project team members, at the very centre of our picture, is the Deputy Nursing Matron who spoke to us).

I feel the University of Guyana will undoubtedly be one of the most important players in strengthening Guyana’s primary health care provision. This is because at present there are only a small number of professionally qualified mental health workers. Presently their School of Health train general nurses and medics, but it does not run a pre-registration mental health nursing programmes, nor does it run post registration programmes which focus on mental health and wellbeing.  There are however plans, with the Building of  UG’s impressive School of Behaviour Sciences, to begin promoting more proactively a new psychology programme, which aims to ensure Guyana has a larger pool of psychology and counselling graduates who can be utilised to help develop Guyana’s mental health service provision from primary, secondary and tertiary care delivery. Thus psychology graduates will have an important role in promoting better mental health in Guyana, breaking down the taboos and stigma associated with mental health and detecting and treating mental illness.

My concern, however, as a nurse, is it is nurses and midwives that make a substantial contribution to health-delivery systems in primary care, acute care and community care settings and that new workforce development is good, however, it is nurses who are best placed to lead strategic and operational health development. Once suitably qualified in mental health they will have the expertise to offer holistic care and because they are at the front line of health care delivery are arguably best placed to help promote, protect and manage health care problems across populations. I come to this conclusion from speaking to Guyana’s nurse academics and nurse matrons who at the forefront of health care management and learnt the following from them:

  1. Post graduate modules related to mental health and primary care are much needed in Guyana. Presently there are no nurses qualified in mental health nursing. Neither are their school nurse training programmes or health visiting programmes that focus on the promotion of wellbeing, child and family mental health.
  2. The Guyanese trained nurses are well appraised because they are taught to a high level clinically. This is because they cannot rely on other allied professionals to do things, like take blood, pass nasal gastric tubes etc. so they are trained to an advanced clinical level. Mental health, however, is an aspect presently overlooked in their repertoire of skills and it is the mental health skills and health promotion skills that have the potential to advance their practice yet further. Possibly making them some of the best qualified nurses in the world.
  3. Concerning, however, is a present shortage of nursing staff in Guyana. Low pay often means nurses are going abroad to work in better paid jobs. Plus private hospitals in Guyana often pay higher wages than public institutions. This brain drain therefore means there are very few well qualified and experienced nurses available to lead strategic workforce changes or operationalise new ways of working and policy around mental health.

The Deputy Nursing Office travels to many of the remote areas of Guyana, ensuring the quality of nursing is assured. The key challenge she faces is finding staff to work in the remoter areas of the country. This she said was mainly due to young newly qualified nurses not wanting to relocate to places where life is quieter. I could not help reflect on the fact it is perhaps the vast, sometimes impassable, geographical terrain that will be Guyana’s real challenge, when it comes to strengthening their primary health care mental health care provision. This is why, Dr Andrea Berardi’s work exploring the resiliency of people living in the very remote areas of region 9 of the Rupununi will be invaluable. Arguably Digital technology (an aspect of our own ARCLIGHT project), will have to play a key part in the promotion of mental health, (as it is beginning to do so in the UK for different reasons associated with the growing aging population and health care capacity). It is technology, which has the potential to enable geographical divides to be crossed and nurse consultation to happen more easily. For example ensuring the availability of digitally available self-help materials as well as ensuring the accessibility of telehealth consultations, all of which will be invaluable. Teleconferencing however is still the technology of tomorrow in extremely remote areas of the world like in some parts of Guyana.

WHO do, however, place an emphasis on the urgency of digital technology development in order to tackle today’s health care challenges, stating:

 “The delivery of health care services, where distance is a critical factor, by all health care professionals using information and communication technologies, for the exchange of valid information for diagnosis, treatment, and prevention of disease and injuries, research and evaluation, and for the continuing education of health care providers, in all the interests of advancing the health of individuals and their communities”.

(World Health Organization, 2010)

The ARCLIGHT project is using innovative digital technology in the form of a Raspberry Pi computer. This very small computer creates its own Wi-Fi zone, termed a MAZIzone. This means people in remote areas, who do not have access to conventional Wi-Fi, can up load materials, from any SMART device, to the Raspberry Pi and also download any materials stored on the device. For instance we will upload self- help materials and our research participants will upload materials they wish to share. Notably the Open University are presently using this type of technology to distribute training guides in the form of PDF’s via a MAZIzone document sharing NextCloud tool (the equivalent of a Dropbox).

In summary I am of the firm opinion it is the nursing workforce who can be utilized to help develop Guyana’s mental health primary care system, both strategically and operationally, as they already have developed a nursing infrastructure which ensures even those in the most remote communities have some way of accessing nursing support for physical problems. Therefore the next step is to ensure they have access to training so they can offer accessible mental health provision and this training should not only place an emphasis on managing mental illness but also equip nurses to promote resiliency, wellbeing and positive mental health or ‘brain health’ more widely via for example school wellbeing programmes or community well-being projects..

It is ARCLIGHT’s goal, through action research methods and participatory approaches, that are encouraging co-produced knowledge, to explore more about how Guyanese people cope with adversity, how they bounce back from hardship, what they draw upon when faced with difficulties and how they understand mental health, both positive mental health and negative mental health and what they need in their communities to promote better brain health. By exploring this in more detail we hope to utilise such information in the development of a mental health educational programme which places an emphasis on primary care provision that better promotes, prevents, detects and treats Guyanese people.

References:

WHO AIMS Report on Mental Health in Guyana (2008) Available at: https://www.who.int/mental_health/guyana_who_aims_report.pdf

WHO information related to primary health care available at:

https://www.who.int/primary-health/en/

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Offline networked learning

ARCLIGHT will be using innovative, low cost technologies to help promote our work, and collect and share stories of positive mental health. We will be using small, portable, battery powered Raspberry Pi computers that can be connected to from people’s own smartphones or other WiFi enabled devices. This will allow people to log in and view a website running on the Raspberry Pi, to leave messages in a Guestbook, and to share files, uploading their own and downloading others.

For the last three years, the European Union funded MAZI project (www.mazizone.eu)  has been developing a set of tools – the MAZI toolkit – and in ARCLIGHT we’ll be taking the toolkit, trying it out, and customising and improving it for use in our community settings. The tools have been built with community based learning in mind, and designed to work ‘offline’ away from the internet. People accessing the toolkit via the Raspberry Pi will have the same experience as visiting a website, except this website isn’t connected to the internet, it’s just on the computer in the same room as them.  We see this as a way of taking advantage of the widespread ownership of WiFi enabled devices (such as smartphones, laptops, and tablets) to help share and create knowledge in places where there’s limited or no internet connectivity. We call this ‘offline networked learning’.

In many places people use and own smartphones, laptops, or tablets, and have ‘domesticated’ them into their everyday activities: they don’t need training in how to use these tools that are already familiar and part of their daily lives. These are powerful devices, which enhance the kind of learning activities people can engage in. For ARCLIGHT, we can ask people to use their own devices to take photos, audio record their personal stories, make videos, and even write texts. What we’d then like to do is to work with community members to share these thoughts with others, and to work together to generate shared creations that can be stored and shared with others. The researchers would like to then take this collection of stories and use them to help build an evidence base that can inform a nurse training programme. What we need therefore is a way of sharing these stories that community members have generated on their own devices. In places where there is highly developed infrastructures we’d be asking people to connect to the internet and share their creations via a website.

However, we’re also aware that in many places there’s very limited internet and cellphone connectivity, or none at all, or that it’s too expensive or otherwise problematic to use. In these situations, the Raspberry Pi computers running the MAZI toolkit will come into its own. The researchers can ask people to bring their own devices along to a workshop, and we can all work together, creating and recording stories and sharing them with each other, wherever we are, even if there’s no electricity or internet connectivity. The researchers will be able to then upload the stories over the internet to a secure space when they are next at a location where they can connect to the wider internet, as well as drawing down other resources made by other groups, and sharing these further stories in the next community workshops.

Mark Gaved 18/04/2019

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Dr Helena A. Mitchell: Reconnecting with my Guyanese roots through PAR

Making the reconnection

My interest in participatory action research (PAR) really developed following the successful completion of a PhD study. This involved a group of Guyanese women living with Type 2 diabetes in England. Like me they had migrated during the 60’s and 70’s. Many of my family members in Guyana had the condition, often dismissing it as “a touch of sugar”. As a nursing professional I was acutely aware of the complications that leaving the condition untreated could cause. This became the impetus for a methodology that could give a voice for people to talk about their experiences of living with diabetes when also faced with dealing with migration and a colonial past. I felt our voices, as Guyanese women, were not being heard.

In the 1980’s I was a community psychiatric nurse. This role heightened my awareness of women’s mental health problems and championed their cause for improved community mental health services. This developing interest in feminism led to a Master’s Degree in Women Studies. “Being heard and given a voice” was a common call and I firmly believed in the feminist slogan of “personal should be made political”.

Returning to Guyana.

PAR inevitably changes you, sometimes painfully, sometimes in exciting and sustaining ways. My experience is that it brings about beneficial and sustainable change so my commitment to this methodology continues. It has led to British Academy funding for a research project in Guyana where I will lead a team of researchers.

This community mental health resilience project has generated international interest because of its transferable outcomes potential. ARCLIGHT, the official project name, commenced in February 2019 and is due to complete in July 2020. This ground breaking PAR study aims to explore mental illness resiliency within complex communities and encourage behavioural change. Participatory action research methods will identify record and share successful local practices evolved over time to cope with challenging personal, cultural, organisational and environmental stressors and conditions.

As a researcher I feel committed to honouring the participants’ experiences and ensuring genuine and life changing collaboration.

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