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Newsletter of the Knowledge & Research (KaR) Programme on Disability and Healthcare Technology Issue 3 September 2002 Contents 1 Foreword and Introduction
Foreword This newsletter is aimed at organisations and individuals who are active in the fields of disability and healthcare technologies. Please contact the Editors with your ideas and comments for future editions. Aron Cronin, Programme Manager GIC Editor
Healthlink Worldwide Editor
The DFID-funded Knowledge and Research (KaR) Programme on Disability and Healthcare Technology has now been in operation for almost two years. So far, 18 projects have been funded, many of which have been completed or are well under way. A second competition was launched in June 2002 and attracted 75 concept notes (compared to 50 in the first competition). The competition is now closed for 2002. This third issue of the newsletter completes the coverage of projects funded under the first competition. Three of the featured projects focus on the identification and support of children with disabilities in communities in Kenya, Sri Lanka and Uganda. The fourth project concerns the development of a new tool to support the planning of healthcare technologies in an integrated manner, and its pilot implementation in Mozambique. This project is part of a broader initiative supported by the World Health Organization (WHO) and the Government of South Africa. This issue also summarises the
outputs of several initiatives that have been undertaken in the last six months
by the programme. These are designed to further develop and disseminate
knowledge on key issues
KaR ROUND TABLE Disability and education: a key issue facing the South? The first KaR programme round table discussion was held in April 2002, chaired by David Clarke of the Education Department of the Department for International Development (DFID). More than 20 people from NGOs and universities met in London to discuss disability and education in developing countries. In introducing the session, Clarke said, “Although 10% of children in the South are estimated to have a disability or special need, figures from UNESCO indicate that only 1-2% of these complete primary education.” The participants considered two presentations. The first was by Beverly Ashton of Action on Disability and Development [ADD]. Over the past year, ADD has been asking disabled people in the South to identify what would make the biggest difference in their lives. The most common response was increased access to education. Ashton stressed that this is a major problem because disabled children who do not go to school end up as disadvantaged adults. She reported three main reasons why disabled children in the South are often denied access to education: institutional discrimination, environmental factors and attitudinal problems. 1 Institutional discrimination 2 Environmental factors 3 Attitudinal problems The second presentation was by David Constantine and Chris Rushman of Motivation. Motivation started a KaR-funded project at a well established orthopaedic training centre in Moshi, Tanzania, to train disabled people as wheelchair technologists. All students on the first course were disabled people. Lessons learned from this experience include the importance need for a clear course structure and strong course materials, such as manuals and lesson plans. Constantine and Rushman said the course has already had significant results. There is now a competent local team and all the first year students graduated. The course has permanent facilities and a second year of training has started. A major achievement has been that the Tanzanian government has recognised wheelchair technologists as professionals. The discussion that followed focused on how DFID could play a greater role in disability and education. Suggestions included using Clare Short’s international profile to press for educational statistics to include disabled children, requiring DFID-funded NGO programmes to include disabled people, and supporting an international workshop for special education teacher training. A problem that emerged is that it is sometimes unclear who is responsible for disability issues within DFID and which budget such initiatives would be funded from. Clarke acknowledged that people with disabilities had low visibility in DFID. He said there was sometimes a gap between rhetoric and practice, and that there are difficulties in implementing government policy on these issues. Useful contacts and websites USAID website that refers to the Individual
with Disabilities Education Act AFRICAN FEDERATION FOR TECHNOLOGY IN HEALTHCARE Technology and health planning Problems with healthcare technologies abound in developing countries. In many cases an essential technology, like a medical device, is simply not available. However, in other cases, technology may be available but it is not useable for a range of reasons, including
In 2001, an extensive audit of healthcare technology management in more than 100 health facilities showed that these problems are widespread in South Africa. In many cases, when plans are made to introduce a particular technology these associated factors are not considered. This is partly due to the fact that current planning is vertical i.e. it considers needs for facilities, medical devices, drugs and human resources separately. In response to this, the World Health Organization (WHO) and the Medical Research Council of South Africa have been developing the Essential Healthcare Technology Package (EHTP) since 1995. This is a planning method that seeks to ensure that all technologies needed for any particular medical intervention are available. It is both a process and a computer programme that offers planners a tool to plan health services in a logical and integrated manner. Technologies are divided into four main categories, medical devices, pharmaceuticals, human resources and facilities. EHTP is a way to make plans that ensure that all components needed from each of these categories are available for a procedure to be carried out. A powerful software package has been developed to facilitate the use of the EHTP planning method. This software constructs a matrix that shows procedures / interventions on one axis and the technologies needed to conduct them on the other. This matrix becomes three dimensional when different levels of healthcare, e.g. primary, secondary, tertiary, are considered. The software produces generic solutions that need to be adapted and modified to specific country settings. With an audit of current healthcare technology management, and using EHTP to assess what is needed, a country can identify the gap between what technologies it has and what more it needs. The KaR programme has contributed towards the funding of two parts of the EHTP project, a simulation tool and the use of EHTP in Mozambique. The simulation tool will allow either a generic EHTP database or one modified for a particular country to simulate the technologies needed to deal with a range of clinical scenarios, e.g. malaria in primary health care settings in Mozambique. It will also be able to cost the technologies, and predict the consequences of the lack of any component part, e.g. skilled human resources. The responsibility for healthcare technology management in Mozambique currently falls within the Maintenance Department. There are considerable problems with healthcare technology management in Mozambique. These include:
The Maintenance Department has made some efforts to address these problems. It is training staff, particularly those working at secondary and tertiary level, and deploying staff who have basic and elementary training at district level. It is estimated that a medium-level technician and a basic electrician could solve 80% of problems that arise at district level. Staff within the department would like to replace the idea of maintenance with that of technology management. The EHTP project is involved in three activities in response to the problems: integrating two software systems, linking the two systems to EHTP and piloting the use of EHTP. 1 Integrating two software programmes into one healthcare technology management system The first of these is the Maintenance Information System [MIS], which was developed in Mozambique in 1997-98, based on experience gained in other developing countries. MIS provides an inventory of all equipment within the ministry and tracks all maintenance work being done. It is currently being used extensively, particularly for documenting work carried out. Limitations in its use include the quality of data entered, the lack of detailed information on infrastructure and the system’s inability to generate brief reports for provincial medical staff. The second programme is the Healthcare Technology Management Information System [HTM_IS], which is a database that was developed between January and August 2002. HTM_IS focuses on infrastructure management. It includes data sets for the health unit as a whole as well as individual buildings and rooms. Some restructuring of the MIS programme will be needed before the two programmes can be integrated. Once this is done, integration could be carried out in 3-4 months. 2 Linking these two systems to EHTP The main constraint is that the Mozambican systems and EHTP use different nomenclatures. The Maintenance Department is re-structuring the MIS programme to make it compatible with EHTP. 3 Piloting the use of EHTP in a planning process for a national health programme The KaR-funded parts of the EHTP project will come together when the simulation tool is tested to simulate the health technology needs of a particular programme operating within Mozambique. For further information contact Peter Heimann
on pheimann@mrc.ac.za VOLUNTARY SERVICE OVERSEAS (VSO) Community-based rehabilitation in Kenya
Since 1984, Education Assessment and Resource Centres (EARCs) have been set up
throughout Kenya to identify disabled children and arrange for their
educational needs to be met. This is mostly done through units in regular
schools rather than through separate special schools. EARCs were established
as part of a programme supported by the
Danish development agency, DANIDA. They are managed by co-ordinators who
report to District Education Officers from the Kenyan The level of services offered by EARCs had to be drastically reduced when DANIDA withdrew support in 1998. Following this, problems with the centres have been reported, including a failure to identify some disabled children. Also, children who are referred from EARCs for other services often end up not attending those services as EARC personnel are unable to provide follow-up support. Voluntary Service Overseas (VSO) has a programme called the Special Needs Education Support Project (SNESP), which supports the work of EARCs in 10 districts. Based on this work, VSO and MOEST obtained KaR funding, along with support from the European Union, Canadian International Development Agency, and a number of European Community trust funds, to introduce communitY-based rehabilitation approaches to these districts. Community-based rehabilitation (CBR) is a strategy to enable disabled people to gain a better quality of life by increasing their rights and opportunities within the home and the wider social setting. The four main components of good CBR practice are the social integration of disabled people (including involvement in decision making); involving local community leaders; using simplified technology and local resources; appropriate, accessible and local services. The new KaR-funded CBR programme started in September 2001. Its aims include:
Key components of the CBR approach being promoted include:
A key factor in the success of the programme has been a strong working relationship with MOEST. The project has also benefited from a local approach to implementation, as different districts build upon existing community structures. Indications are that local CBR personnel are identifying increased numbers of disabled children, and improving their access to education services. The project has experienced challenges when trying to mobilise community support. Similar challenges were faced during an earlier attempt to introduce CBR, when in 1989 the Kenyan Ministry of Health tried to use the approach in a number of districts. The VSO project has found it easier to mobilise communities in rural areas than in towns. The EARC in Mombasa had to try working in three different parts of the town before establishing a strong and active group in the Likoni area. It has also taken a long time to effectively mobilise communities generally. However, coordinators felt that this stage of the work was essential if communities are to own the programme.
For further information contact Wambui Kennedy (Project Coordinator, SNESP)
on Wambui.Kennedy@vsoint.org INSTITUTE OF CHILD HEALTH Women’s groups act as change agents in Kenya Studies show that nearly a half of all disabled children in low-income countries have communication problems. This is one of the largest sub-groups of disablement – approximately 20 million children worldwide and half a million in Kenya alone. Most disabled children with communication problems live in rural areas of low income countries and come from very poor homes. Services for them are almost non-existent. There is an urgent need to develop and evaluate innovative service strategies with this population group. One project that aims to address this need is a study called Evaluating the impact of a community-based rehabilitation (CBR) intervention using women’s groups for children with communication disabilities. This project evaluates the impact of a community-based intervention by women’s groups, which is designed to improve the communication ability and quality of life of disabled children who have communication problems. The study has four phases. The first phase involved developing measurement tools and an intervention plan. Individual interviews, focus group discussions and participatory workshops took place with all the relevant stakeholders. The intervention plan also drew from information collected in Uganda and Zimbabwe. The first phase included:
The second phase of the project involved the identification of 334 children from a previous neurological impairment study. These children responded negatively to at least one of the four communication-related questions in the ‘10 disability questions’. These questions were originally validated in Bangladesh as a screening tool for identifying disabled children. This phase is now complete. The children will be assessed for communications skills and quality of life using the measurement tools. The next phase of the project involves assigning approximately half of the 334 children to an intervention group and the remainder to a control group. Fifty-two active women’s groups have already been identified and 8 of these groups will be randomly selected to participate in an awareness-raising session with the research team. Each group will work out intervention plans for about 20 children. The plans will be individually tailored for each child. They may include respite care and support for the mothers, to encourage a more inclusive approach to child rearing, and technical advice on stimulating children and making aids. The intervention phase will take place over the next nine months. The final phase will be an evaluation of the intervention in terms of impact on communication skills and quality of life. At the end of the study there will be:
Lessons learned so far
For more information about the project, please
contact Dr Sally Hartley on
s.hartley@ich.ucl.ac.uk INSTITUTE OF CHILD HEALTH Field-testing the Access Portfolio In many developing countries, children with moderate or mild disabilities are not identified until they reach school age. This delay in identifying disabled children means that intervention has less impact because it happens at a later stage in a child’s development. This in turn means that disabled children participate less in their communities. The Access Portfolio has been developed by the World Health Organization (WHO), Disability And Rehabilitation (DAR), and the Centre for International Child Health (CICH), UK. It aims to improve early identification of, and appropriate intervention for, children with disabilities. The portfolio consists of a package for screening and simple early intervention advice for parents and carers, which can be easily administered by primary healthcare staff. It is in three sections. Section 1 contains tools that enable the users to describe the community they work in, to determine which services, if any, already exist, and who supplies them. This helps with the selection of suitable identification, advice and intervention materials. Section 2 contains questions and assessment materials appropriate for the community situation, which help identify children with impairments. Section 3 contains advice materials for parents and carers of children with impairments. The portfolio aims to involve primary health care services in identification, referral or advice in areas where there are no disability services. Field-testing of the Access Portfolio is now underway in Sri Lanka and Uganda. This will assess the ease of use and value of the Portfolio to fieldworkers and beneficiaries, and evaluate how the portfolio assists in the early identification of disabilities. In Sri Lanka, field-testing is being carried out in collaboration with the University of Kelaniya, Colombo. The project is taking place in the Kurunegala district, northeast of the capital. In Uganda, field-testing is being carried out by the Ministry of Health, working in partnership with COMBRA, a local non-government organisation, in the Mukono district east of the capital Kampala. Each project will last for six months, during which time an estimated 600 children will be seen in each country. CICH staff have worked together with local project coordinators to initiate field-tests. A training curriculum was prepared that helps workers become familiar with basic disability issues, and competent and confident in the use of the portfolio. Twelve public health midwives were trained in Sri Lanka, 11 nurses in Uganda. Two local coordinators in each country were trained to monitor field activities, provide advice and motivation to the field workers, and deal with any problems. In addition, local disability specialists – a medical doctor in Sri Lanka, an occupational therapist and a physiotherapist in Uganda – were appointed to check 10% of all children seen in the project. These checks will provide an independent assessment of the field workers’ evaluations. In Sri Lanka, the field workers advertise that they have been trained to identify children with disabilities, and how to give appropriate advice. They encourage concerned parents or carers to bring their child to the local clinic. These children are seen during the normal course of work. In Uganda, each field worker holds special clinics on one day each month, which are advertised in the community. This difference in approach illustrates the flexible way in which the Access Portfolio can be used. If a child is found to have a disability then the parent or carer is given guidance and written advice sheets in their local language. If appropriate the child is referred to specialised services - in Sri Lanka a paediatrician, in Uganda a rehabilitation professional and/or specialised medical services. Both projects are still in the early stages. However, early indications from Sri Lanka suggest field workers feel that the training has given them more confidence, even when carrying out their other duties. Likewise, field workers in Uganda report that information learned from using the Access Portfolio is beneficial to them in all contexts, not only when carrying out Access project work. After field testing and any necessary modifications, the Access Portfolio will be recommended by WHO/DAR for use through WHO regional and country offices.
For more information about the Access Portfolio, contact Karen Edwards on
K.Edwards@ich.ucl.ac.uk KaR LESSONS LEARNED Learning from our experiences One of the key aims of this KaR programme is to share lessons learned by the projects funded under the programme. This is a way of celebrating successes and achievements, but also means sharing when things do not go according to plan. In this way others can learn what works and what does not when embarking on similar work. Much of this sharing is being done by the organisations running the individual projects. Additionally, the Programme Management Centre (GIC Limited and Healthlink Worldwide), has set up a number of ways of sharing lessons across the programme. Examples include these newsletters, this website and the round table meetings currently being held. The lessons-learned pack (available in January 2003) is another way of sharing knowledge and experience. The Programme Management Centre visited a number of projects in the UK, India and Africa to review progress and collect information on lessons learned for this publication. Material has also been contributed by other organisations and individuals involved in KaR-funded projects. The pack will include project descriptions, lessons learned from specific projects, and a summary of lessons learned from across the programme. Lessons learned across the programme can be considered in three groups: First, there are lessons related to various stages of the project cycle, including design, set-up and implementation. Second, there are lessons relating to the management of projects. These include the advantages and disadvantages of working with other organisations, and the importance of:
Thirdly, there are lessons relating to sharing
knowledge and learning. This may occur within an organisation or between
organisations with KaR projects. There are, however, a number of constraints
within the programme that currently
Examples linking these general programme-wide
lessons to individual projects will be included in the learning pack. The pack
will also include examples of specific lessons learned by individual projects.
Two examples are featured in boxes 1 and 2.
KaR STUDY ON DISABILITY AND HEALTHCARE TECHNOLOGY To what extent is technology important when considering disability and poverty? This KaR programme focuses on both disability and health care technology and aims to minimise the detrimental effects of disability on the lives of many poor people in developing countries. The programme supports projects to develop new technologies, adopt newly-developed technologies, or contribute to the wider use of a successful technology. However, this approach raises questions about what technology is and the extent to which it is important in the lives of disabled poor people in developing countries. The Programme Management Centre (GIC Limited and Healthlink Worldwide) has commissioned a study to look into these issues. This will help establish priorities for funding and criteria for making funding decisions. The study will also be of value to others who have to make similar decisions about resource allocation. The study will build on the DFID document, Disability, Poverty and Development (February 2000), which explores the relationship between disability and poverty and identifies areas that should be targeted to ensure equal rights and opportunities for disabled people. It does not, however, look specifically at technology. The University of East Anglia is conducting the study. A multidisciplinary team led by Professor David Seddon will look at:
The team presented preliminary thoughts to staff from the Programme Management Centre and DFID in June 2002. They concentrated on three main areas, defining the terms being used, engaging critically with the terms of reference, and advocating for involvement of disabled people at all stages of projects and programmes. A clear understanding of the terms disability, poverty, and technology is central to the study. The team drew a clear distinction between impairment and disability, with disability defined as “a complex system of social restrictions placed on people with impairment by a highly discriminatory society”. Poverty is multiple deprivation and not simply lack of income. For many disabled people, poverty is “both chronic and intractable”. Technology is defined as “the application of knowledge in an appropriate way to meet people’s expressed needs and demands”. Adopting this definition of technology would move the KaR programme even further beyond a focus on ‘hard’ technologies, e.g. pieces of equipment and their management. The team also raised questions about whether it is possible to determine in advance the types of technological innovations that will have the biggest impact on the lives of poor people given that disability, poverty and technology are linked. This means that it may be difficult to say that the programme should focus on one particular type of technology, e.g. wheelchairs, rather than another, e.g. spectacles, because contexts and social settings vary so much from one place to another. The team was also sceptical as to whether figures relating to prevalence of impairments could be used to determine what kinds of interventions should be given priority in a particular place. The team referred to a number of examples of successful technical interventions from around the world, such as the Jaipur Limb project. The final report will consider these examples in more detail. However, initial analysis of the terms of reference of the study suggests that involving disabled people, their carers and communities in decision-making about projects is a key factor in their success. For example, initial reflection on the section on sustainability led to the conclusion that projects are more likely to be sustainable if they provide services that disabled people want. This means that involvement of disabled people in project planning and design is not an ideological position but a pragmatic one. The study will provide concrete guidelines for the programme’s funding decisions. It also seeks to raise broader issues relating to the programme’s focus and to how DFID and other organisations approach disability. Project summaries The following projects were approved in the first competition and have been in implementation since June 2001. Disability Projects 1. Prefabrication of knee-ankle-foot
orthoses
2. WorldMade wheelchairs
3. Mechanical Braille
writer
4. Community-based rehabilitation
5. Instrument to improve
childrens' communication
6. Testing of the access
portfolio
Healthcare Technology Projects 7. The development and
integration of the EHTP with a Healthcare Technology Management System
8. Preparation of procedure
guides
9. Production and distribution
of electronic information materials
10. Controlling malaria
and trypanosomiasis
11. International HCT
management centre
The following projects were approved in January 2001 under the fast-track procedure and were implemented in 2001. 1. Training of wheelchair
technologists
2. Health information
systems processes and technologies
3. Medical equipment maintenance
training
4. Research into the economic
impact of uncorrected vision
5. Creation of a global
knowledge network
6. International good
practice on disability
10 KaR Programme newsletters, websites and contact details DFID KaR newsletters
DFID KaR programme websites
The main EnG-KaR website, which gives an overview of the programme and links to the other sites, is at www.dfid-engkar.org.uk
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