Interdisciplinary Seminar Series on Disability and Mental Health Disorders in LMICs at the University of Oxford

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Seminar Talk by Prof. Charles Newton and Dr. Melissa Gladstone, 25 April 2016, ‘Identification, diagnosis and management of neurodisabilities in LMICs’

The second session in on-going seminar series on Building capacity on disability in low- and middle-income countries will be given my Prof. Charles Newton and Dr. Melissa Gladstone. The theme of this session is the Identification, diagnosis and management of neurodisabilities in LMICs.

Time: 5pm – 6.30pm
Date: Monday, 25th April 2016
Location: Mawby Room, Kellogg College, 60-62 Banbury Road, Oxford, OX2 6PN [Map].

Details of the two talks are provided below.

Neurodisability in Resource Poor Countries

Prof. Charles Newton

Bio: Professor Charles Newton is the Cheryl & Reece Scott Professor of Psychiatry, Department of Psychiatry and St John’s College, University of Oxford, and the Scientific Director of the Muhimbili-Wellcome Programme, Dar-es-Salaam, Tanzania as well as the Head of Neurosciences, KEMRI-Wellcome Collaborative Programme, Kilifi Kenya. Professor Newton conducts research on the epidemiology and behavioural consequences of children experiencing a range of adversities in the low-income countries of insults, in particular the association of autism and developmental disorders with infections of the central nervous system (particularly malaria, HIV and bacterial meningitis).

Early childhood screening and surveillance for developmental disorders in low income settings

Dr. Melissa Gladstone, Institute of Translational Medicine, University of Liverpool

Abstract
Developmental delay is common in low income settings. More than 200 million children have developmental delay. Structured programmes in high income settings recommend surveillance programmes with the use of developmental tools to assess children to support health workers to make decisions about when children might be likely to need support. Evidence as to the efficacy of these programmes in terms of their specificity and sensitivity is very limited. The most efficacious programmes at present are those for hearing screening and blood spot screening for certain neonatal disorders which cause developmental delay. Furthermore, programmes supporting parents most at risk are most efficacious.

In low income settings, the tools to assess children are not well validated, often not simple to use and are in no way universal. Furthermore, the structures for these programmes are not in place and there are limited services for rehabilitation. Without these structures, children may be identified but no support provided. This may be distressing for families and cause them to spend resources that they do not have hunting for services which do not exist.

Integrated programmes to support developmental stimulation, early communication and nutrition have been shown to be effective in improving short term developmental and long term psychosocial and cognitive outcomes in later life although for these to be effective they will also require infrastructure, funding and clear supervisory structures. Children with disabilities could be incorporated into these programmes and can benefit from these programmes. These do not rely on the developmental age of the child but purely look at provision of support to families. This is likely to be more effective.

A shift from surveillance and screening to provision of integrated support programmes from infancy for children at risk is likely to make the biggest inroads to reducing developmental delay and for supporting parents of children with disabilities. These require good training, supportive supervision and effective integration into systems of care which have adequate resources to enable this.

Bio: Dr Melissa Gladstone is a Senior Lecturer in Paediatric Neurodisability at the Institute of Translational Medicine, University of Liverpool. Her focus is in improving low cost interventions and outcomes for children with neurodevelopmental disorders in low income settings. Together with her team she has developed the Malawi Developmental Assessment Tool (MDAT), a tool to assess child development in rural African settings that has been applied widely in Africa.

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Seminar Talk by Sridhar Venkatapuram, 22 March: ‘Why a health justice approach to disability in LMICs’?

In this first of our seminar series on ‘Building Capacity on disability in low- and middle-income countries’, Dr Sridhar Venkatapuram will ask the question:

‘Why a health justice approach to disability in LMICs?’

Abstract
Considering the lived experience of people with mental and physical disabilities in resource poor settings brings into sharper relief some of the inadequacies in our practical and theoretical efforts at improving social and global equity. In this talk, I will argue how being born with a severe impairment in a LMICs does not constitute a case of double ‘bad luck’ but raises concerns about justice.  Advocating a capabilities approach perspective, I will outline some of its basic components.  And, I will compare and contrast its guidance on social action versus other approaches such as effective altruism, priority setting, and evidence based policies.

The public talk will be held in the Mawby Room of Kellogg College, Banbury Road 60-62, from 5:00pm – 6:30pm

Everyone is warmly invited. Please let us know if you have any special requirements.

Biography: Sridhar Venkatapuram is a Lecturer in global health and philosophy, and Director of the MSc in Global Health & Social Justice. Sridhar’s research and expertise is in global/public health, human rights, ethics and philosophy. He aims to bridge normative reasoning, particularly about social justice, with relevant natural and social sciences related to human health. He is the author of Health Justice: An argument from the capabilities approach published in 2011 by Polity Press.

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The curse of poverty – a personal reflection on interviewing caregivers of disabled children in two settlements in Kenya

As our team is wrapping up another fieldwork phase here in Kenya, having successfully completed assessments and 32 in-depth interviews in two low-resource settings with caregivers of disabled children (mostly mothers) over the last couple of weeks, it’s time to reflect on some of the things we have learned from the caregivers about their experiences of caring for a disabled child in an environment of scarcity.

Since we last were here, tragically, several of the disabled children we had met on our previous field-visits have died, and one boy simply has “vanished”. No one knows where he is, he just never came back from playing outside.

Caring for a disabled child can be highly strenuous and stressful. But the complexity of caring for a disabled child in environments of extreme scarcity seems infinitely higher, and the mothers’ everyday life struggles, by their own accounts, are never-ending: blamed or even abandoned by their husbands and sometimes by their own families for giving birth to a disabled child, these mothers care for their severely disabled children in simple metal-roofed houses without proper electricity, without running water, without any supportive equipment or affordable health care, while simultaneously looking after their four or five other healthy children. At best, they can earn some money by selling fruits, perhaps, or by doing some casual labour, but often they cannot leave their disabled children to go out and earn a living. More often than not, their disabled children cannot attend school, as education for children with special needs is too expensive, or the children need to be ‘clean’ so as to be admitted to regular schools – an unaffordable luxury for the caregivers, who cannot cover the costs for diapers.

In addition to the lack of material and financial resources, what transpires clearly from the interviews is the social isolation and stigmatization frequently faced by these caregivers and their children: disabilities are highly stigmatized in both locations, as they are in many other parts of East Africa. Many community members perceive disability as a punishment from God, or as the result of a curse, for doing wrong or someone wishing ill on the disabled child’s family. Mostly, the mothers are blamed for it – by their husbands, by their in-laws, and often even by their own families. Disabilities are understood as communicable diseases, and hence as highly ‘contagious’. Consequently, disabled children are often kept hidden indoors, out of sight from neighbours and other community members, for fear of stigmatization and to keep them sheltered from emotional, physical and sexual harm and abuse by the community. The disabled children are not allowed to play with other children, as other parents are afraid their child might catch the same disability. Indeed, one mother tells us that she is not even allowed to put up her laundry on the communal washing-line, as the neighbours fear their children might develop the same disability as her child.

In these environments of scarcity, for caregivers, small care decisions can quickly turn into big ethical dilemmas: should they spend money on basic medication to stop the child having seizures, or use the money to feed their four other children who are healthy? Should they go out and work so as to earn money to feed and dress the four healthy children, while leaving the disabled child unattended locked indoors at home, in danger of being hurt in one of the many fires plaguing the community, or being harmed by intruders (we know of at least one instance where a severely disabled girl, who had been locked indoors, was raped by an intruder while her mother was away at work)? Should the pneumonia of the disabled child be treated in the main hospital, with the bus fare and the medication taking up the entire monthly salary that would otherwise have paid the meals and school fees for the other children?

One day during our fieldtrip, on the way to a village school in a rural, mountainous region – a dusty, and arid area – one of the health workers whispers to me that the village we are going to visit has the reputation of “being cursed”, because of its many disabled children. Indeed, the head-teacher of the local village school tells me that around one fifth of all the children at the school have some sort of impairment, physically or mentally, and that he thinks there are many more disabled children hidden away by their families in their houses and not allowed to come to school. I’m being told that a priest has been called some time ago to investigate the nature of this “curse”, and that, apparently, the priest came to the same conclusion as the villagers – namely, that indeed this village had been cursed, and that there is not very much else to be done, other than saying Mass and to pray.

As I listen to the stories of the caregivers of disabled children in this village, some of whom have more than one disabled child to look after, it becomes clear to me that there is indeed a “curse” on this village. But it seems to me a “curse” of a very different nature – not a ‘supernatural’ one: it is the curse of poverty that seems to have this village in its iron grip. Indeed, as we continue to listen to the caregivers’ stories, our team learns that parents often don’t immunize their children, due to a lack of education and a lack of understanding of the necessity of immunisation. We also learn that the mothers tend to give birth in their houses, without trained assistants attending the birth. If labour is prolonged, there is very little that can be done, as the nearest dispensary with a nurse is around ten kilometers away on foot or motorbike and requires traversing a river. During rainy season, the villagers are often cut off for days from the dispensary, meaning that in the case of an emergency, no medical support is available. And prolonged droughts often mean bad harvests that can lead to malnourishment among expectant mothers and their children.

To me, it seems very clear that there are no ‘supernatural forces’ at work here, but that these are circumstances created by man entirely, by political and structural forces that perpetuate inequality and keep causing ill-health and destitution in this region. Indeed, most of the mothers we talk to seem to be aware very early on that there is “something wrong” with their child, as they put it, but they can’t afford the money for the motorbike and matatu fare to go to the nearest hospital, let alone pay for medication. With the result that perfectly treatable conditions like neonatal jaundice, rickets, malaria and epilepsy go untreated, with often devastating effects on the children.

And yet, despite their suffering and the often enormous pressure exerted on them by their in-laws and their own families to abandon their disabled children, against all odds, these caregivers have decided to stay with their children, to love them and to care for them, come what may.

So it falls to us, those bearing witness, to not just stand by, but to help educate, raise awareness about disability and its causes, and to train health workers so as to cater to the needs of these children and their caregivers, both medically and psychologically. This, to me, seems the way forward to provide these caregivers with the support they so desperately need in caring for their children. This, to me, seems the course to take to ensure that these disabled children are safe, to ensure that they receive the health care provision and the education they need. It seems to me the only way to prevent this curse - the curse of poverty – from striking again, and from affecting future generations.

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Introducing the Oxford Network on Health Care Training, Social Justice & Technology

TRANSPARENT

The Oxford Network on Health Care Training, Social Justice & Technology aims to catalyse innovative interdisciplinary research at the intersection of health care training, social justice and technology in the developing world.

The network offers a shared space for researchers working on issues related to health care training, social justice or technology in low-resource settings, to discuss experiences and insights on methodological and theoretical challenges, and to develop new collaborative research ideas.

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Our mCHW & Fell project findings presented at ‘Crossing Boundaries 2 – Health Research Relevant to LMIC Across Oxford’s Disciplines and Divisions’

On 8 December, Niall Winters presented findings from the ESRC-DFID-funded mCHW project at the Crossing Boundaries 2 Health Research Relevant to LMIC Conference at Said Business School.

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At the same event, Anne Geniets gave a flash talk and presented findings of her collaborative work with Laurenz Langer and Niall Winters on evidence gap map research on the abuse of disabled children in East Africa.

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mCHW Symposium “Mobiles, Development & Global Health Training: A way forward”

On 29th and 30th September, the mCHW team invited 20 representatives and stakeholders, both from academia and from NGOs to a symposium at Kellogg College, University of Oxford, to discuss ways forward in the field of mobiles, development and global health training. The two days were structured in four group sessions.

In the first session, we introduced our own projects to our group by exploring questions such as “What was the aim and what challenges in mHealth were addressed through our projects?” “What was critical to successfully addressing this challenge?” And “What three key impacts did we feel we’ve made through our projects? What technologies were we using?”

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Niall Winters welcoming the participants

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Group discussion on the challenges identified in our individual mHealth projects

 

 

 

 

 

 

 

On the second day, we reflected on how to address the key challenges identified on the previous day, and the new challenges identified over the course of our group discussions. We then moved to discuss how to overcome these barriers, and explored what role technology can play in this process.

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Jade Henry discussing the findings and challenges identified on Day 1

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Group discussions

 

 

 

 

 

 

 

Professor Martin Oliver, of the Institute of Education, UCL, followed with an introduction to and overview of pedagogies in mHealth. A discussion evolved around pedagogies that are currently used in mHealth and whether we should be using new pedagogies; about who these mHealth pedagogies are targeting, and how they are being evaluated. We established that more evaluation needs to happen so as to ensure that the pedagogies reach the target groups identified.

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Professor Martin Oliver discussing pedagogies in mHealth

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Group discussions on mHealth pedagogies

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Reporting back to the plenum what has been discussed in the group

 

 

 

 

 

 

In the final session, we discussed how, together, as researchers and collaborators we can address the challenges and issues raised over the course of the symposium, particularly with regard to the sharing of resources, funding schemes for capacity building, and opportunities for early-career researchers.

The symposium ended with a reflection by the convener, Professor Niall Winters, on future research agendas.

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John Fell Pump-Priming Award: New Project for our research team to address child abuse in the context of disability in Kenya

This new project, jointly led by Niall Winters and Anne Geniets, emerges from the mCHW project. The ESRC-DFID funded mCHW project set out to train community health workers (who are volunteers selected by their communities to assist their community in health matters) and their supervisors (nurses and public health officers) to assess the development of children under five in two low income communities in Kenya. Since no systematic assessment of the development of the children had been conducted in the two communities prior to the mCHW intervention (due to a considerable shortage of qualified medical personnel in Kenya), a large number of children with disabilities were identified. However, the scope of the mCHW project did not allow for an in-depth follow up with these ‘hidden’ disabled children, hardly any of who are in school or nursery. In Kenyan society, as in most of East Africa, children with disabilities are normally kept ‘hidden’ indoors, away from the public out of fear of stigmatization and the widely held belief that disability is a result of witchcraft.

The new project has two foci: First, to facilitate an innovative and interdisciplinary programme of research at the University of Oxford that addresses the gap in health care education in the context of disability in the developing world. Disabled children and their mothers in low-income areas are among the most marginalised and stigmatised groups in developing countries. Disowned by their families and often divorced by their husbands, in addition to their destitution, they suffer from abuse, physical and structural violence, and a lack of affordable health care and education.

Second, in line with the core aim of the University of Oxford’s Social Science divisional research strategy, to “extend the impact and influence of Oxford’s social sciences research beyond academic communities”, and building on the success of our ESRC-DFID funded mCHW project, the project aims to train community health workers, parents and teachers to identify, understand and assess disabilities, thereby raising awareness in the community and contributing to the de-stigmatisation of disability.

Through the use of mobile technology, the proposed interdisciplinary research will gather data to generate new insights into children’s disabilities and the extent of the treatment gap. Analysis of this data will provide a novel perspective on existing care practices and enhance the understanding of the long-term medical and social needs of those with disabilities and their families. This will inform broader work on how to address the persistent stigmatisation, abuse and structural health care inequalities experienced by those with disabilities.

The project aims to develop strong inter-departmental and inter-divisional research at Oxford, working across Departments and their links in East Africa. This will place the research project in a unique position of generating truly interdisciplinary research by drawing on Oxford’s expertise in global health research, mHealth and education in the developing world.

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What is “appropriate technology” for eLearning in Africa?

“What does it really mean to use technology for education and learning in Africa”, asks Niall Winters in his recent contribution to the eLearning Africa Report 2015. “For many”, he writes, “it is an opportunity to provide students with the skills they need to take part in the knowledge economy of the 21st century, a chance for teachers to improve their teaching practice and a means by which self-guided informal learning will flourish”. However, Winters goes on to argue in this brief position piece that “each of these positions is problematic if technology and technology use are not conceptualized in a nuanced and in-depth manner” (p 47). To read why, go to page 47 of the eLearning Africa Report 2015, which can be accessed and downloaded for free here.

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Using theory-driven evaluation within the mCHW project

By Martin Oliver

Martin Oliver

 

 

 

 

Our project’s aim – to advance the training and supervision of community
health workers in Kenya, following a participatory approach – creates some
very specific requirements for evaluation. Unlike some intervention
projects, our work with CHWs, CHEWs and other close-to-community actors
isn’t stable. It has to be negotiated at every step, and has responded to
their priorities – for example, in the topics that were selected as the
basis for app development. As a consequence, the project’s evaluation work
can’t make claims about a standardized process or product; it needs to
evaluate a moving target.

In addition, the areas in which we are working are fairly ill-defined,
which has made it very difficult to come up with simple metrics with which
to judge success. The project is funded under the broad aspiration of
‘poverty reduction’, but we expect our influence on this to be diffuse at
best. We also hope that the apps that are developed might reduce mortality
or improve quality of life – but of course, even if they were easy to
measure, which of those is appropriate depends on what the app is created
for, and that decision had to be taken with participants, during the
project. So conventional baselines were hard to establish. It would be
possible to count number of homes CHWs visit, for example, but so many
factors influence this that it doesn’t make much sense to assume this will
be shaped by the app we develop. There are some more promising candidates
- number of referrals made, for example – but it turns out these are
complicated, too, as I’ll discuss below.

So, given the lack of an intervention that could be ‘black boxed’ and the
absence of obvious indicators, conventional experimental approaches to
evaluation were ill-suited to what we were trying to achieve. As a
consequence, we turned to theory-driven evaluation. This approach has been
developed to help make sense of complex situations, and to make judgements
whilst exploring processes of change, and it has gained increasing
traction within the field of international development (Vogel, 2012).

The heart of the approach involves identifying the ‘programme logic’ – the
processes that are thought to connect the inputs to the intended outcomes
- and then looking for evidence that supports or challenges that, or else
helps to develop that change model by providing details or filling in
gaps. It is typically iterative, adding layers of detail over time; this
has meant that it is adaptable, and able to support us throughout the
process of creating the app and delivering it to CHWs. It also involves
working with participants’ ideas about why changes happens (or fails),
making it well-suited to participatory projects.

As an example of how this has worked, we can look at the way in which our
understanding of the links between the app and referrals has developed
over time. Initially, we knew CHWs had many responsibilities, but it
wasn’t even clear which of these we should try to support. Focus groups
with CHWs and CHEWs helped by describing the day-to-day work of CHWs, and
identifying specific actions that could be supported. Referrals were soon
identified as one of these. Follow-on interviews with CHWs helped us to
understand how they went about making the decision about whether or not to
refer a client to a clinic. Some of these decisions were clear; there was
no need for an app to support them. However, some were more challenging,
and with the CHWs, we identified that infant development was one area
where the decision about whether or not to refer was particularly
difficult. There were many decisions that also needed evaluative input
whilst developing the app – Which framework should be used for assessing
development? What should the interface look like? – but, glossing over
these for the moment, there were interesting issues when we came to
evaluate whether or not this app was helping. What became clear was that
this was not a dose/response situation, where adding the intervention
caused a simple, measurable effect. Instead, there were two contrasting
things happening at once, confounding measures: cases that might otherwise
have been missed were now being spotted, increasing referral; but cases
that had been referred ‘just in case’ no longer had to be referred,
reducing referrals.

As a consequence, what this approach to evaluation has let us achieve is
an account of what CHWs do, and how we can help them, that is far better
developed than we had available to us at the start of the project. What we
haven’t been able to do is map the prevalence of particular issues or
decisions. Given the insights we gained during the app development, and
the involvement we have had from close-to-community actors, however, we
feel this was a price worth paying.

References

Vogel, I. (2012) Review of the use of ‘Theory of Change’ in International
development. London: UK Department for International Development.
Available online here.

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