Over four years in Kyrgyzstan, we saw significant changes.
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From Luke’s Journal June 2018 | Vol. 23 No.2 | Disarming Disability
Disability is a major cost in terms of dollars and social cost in most countries. In resource-limited nations it is usually a greater issue – with higher incidence, fewer resources, a lack of training for professionals in the area of disability, and many social issues which contribute to making disabled children and disabled adults outcasts, or less able to be engaged in normal social life no matter what their intellectual abilities.1 In addition, there is a lack of good local data to give accurate prevalence statistics and information on causative factors.2,3
Over four years in Kyrgyzstan, with the assistance of UNICEF and other agencies, we have been able to see significant changes in the approach to disability, and also develop national guidelines to assist in the management of children with cerebral palsy (CP). This has been a multi-faceted approach based on the collection of local data, which has shed light on causation and given details of the overall picture of disability. Collaboration at all levels of health and government should assist in leading to a significant reduction in disability over time, and to a more evidenced-based and inclusive approach to children with disability.
Background:
About seven years ago, my wife and I were invited to work in the central Asian republic of Kyrgyzstan alongside other health workers. The initial invitation was to assist with neonatal work. However, things changed during the period between accepting the offer and arrival. The door to work in the area of neonatology closed and, due to work done previously by others, the door to work in the area of paediatric disability opened. This coincided with UNICEF commencing a project to fulfil the UN goal of improving the health outcomes of disabled people. So began a working relationship with UNICEF which has proved to be very fruitful. In addition to UNICEF, work has been greatly assisted by JICA (Japanese International Cooperation Agency) and the Kyrgyzstani Health Ministry.
As a general paediatrician I had looked after many disabled children over my career, but had also been seconded to work in a tertiary paediatric rehabilitation centre in Brisbane over 2000 and 2001. Many of the skills gained there proved valuable in the work in Kyrgyzstan which has evolved and developed over time.
The medical system in most countries in Central Asia is very different from the west. There is a primarily didactic medical education system, with little or no clinical experience during training and very little problem-based learning. The system, inherited when Kyrgyzstan became independent in 1991, was very much based on doing what you had been taught, rather than on analysing data or looking at information gathered locally. Key to this way of thinking is establishing a diagnosis from which treatments or therapies follow.
Initially, the consultation work I was doing at a major hospital was in a very different manner to what I was used to. Up to 130 disabled children underwent two week blocks of therapy every fortnight. Consultation was done in a large room with all the parents bringing their children in together. Each consultation was conducted with all the mothers and other children around, which led to group teaching for many of the parents about issues of disability. This has since changed due to the provision of a different room with better facilities, but this communal education was a useful part of the earlier consultation work. At the same time, data was collected in a basic format. This was later presented to UNICEF and the local Ministry of Health staff which then led to a whole process of training and interventions.
“Pre-existing therapy implemented for children with a diagnosis of CP consisted of massage, hydrotherapy (when at the hospital) and some other therapies, including hot packs. There was little or no understanding of brain plasticity or expectation of improved function.”
Pre-existing therapy implemented for children with a diagnosis of CP consisted of massage, hydrotherapy (when at the hospital) and some other therapies, including hot packs. There was little or no understanding of brain plasticity or expectation of improved function. Aspects of the massage therapy were quite vigorous, with little understanding about why such therapy was prescribed. In addition, many children received a multitude of medicines. It took time to learn what these medications were and, over time, it was realised that most were given routinely, with no evidence to support their use. The parents confirmed that they made little or no difference. It seemed that there was a belief that some medicines could actually repair the brain and that they should be used long term with the hope of eventual recovery. There appeared to be a lack of precision in giving advice to parents about individual cases, and a lack of understanding that good information can be gained from a thorough assessment, which could guide both therapy and assist in predicting longer term outcomes.
The process of change:
The collection of data was useful in delineating the spectrum of disability present. This showed around 80% comprised CP, and about 20% other conditions – including genetic conditions (eg. Down syndrome), metabolic disorders (eg. Morquio syndrome), spina bifida, congenital rubella, spinal muscular atrophy, and others. Some conditions had not been diagnosed but were considered to be some sort of disorder without a name being given. The challenge was to find a diagnosis for these conditions in order to inform the parents about the implications for both them and their child (particularly if there was a risk of recurrence with future pregnancies).
Of the 80 % with some form of CP, around 30% had dyskinesia and 60% spasticity, with the remainder being either hypotonic or a mixture. On further history, we discovered that at least half of the children with dyskinetic CP had had severe neonatal jaundice and was due to kernicterus. A significant portion of these were mothers who were Rh negative with Rh positive husbands or partners. It was also apparent that only about half the women knew their blood group, and of those who were Rh negative, only a few knew what this might mean in terms of issues for the pregnancy. As one mother (who knew she was Rh negative with an Rh positive husband) said, “Why did someone not tell me about anti-D?” She had two normal boys and her third child was severely jaundiced and has severe dyskinetic CP.
“Most of the severe spastic quadriplegic children had been ex-premature infants. Around 5% of children had been normal until they had some acute event…”
Most of the severe spastic quadriplegic children had been ex-premature infants. Around 5% of children had been normal until they had some acute event – usually a febrile illness which required their admission to hospital. These then ended up with some sort of brain damage, either as a result of the illness (some had had meningitis) or maybe as a result of treatments given or not given (presumably resulting in hypoxic brain damage). Given that we only had access to parental or carer history it was not possible to clarify these issues further.
Data was presented to UNICEF staff and to Ministry of Health workers, which, because it was local and relevant, spurred them on to take appropriate action:
1. The data on the problem of Rh isoimmunisation has led to a new national policy advocating for all Rh negative women to receive two doses of anti-D, at 28 weeks and post delivery. They are also to receive it at other times of potential sensitisation, such as in the case of threatened or actual miscarriage, abdominal trauma, and so on. The issue of funding is still being worked out as mothers currently pay for this individually. There is also the bigger issue of ensuring that all women know their blood group before conception, or in early pregnancy. The estimated incidence of Rh negative in the southern population is 4%, and in the north probably around 5 or 6%. While this may sound low, this equates to around 6000 pregnancies annually being affected by this issue. Although this policy was updated in 2017, actual implementation will take time.4,5
2. The need for advanced paediatric life support training was recognised. With the assistance of the Japanese Government and UNICEF, trainers from Lithuania came on two occasions during late 2015 to train groups from the north and south of the country. On the first occasion, a group was selected to become trainers and then trained and mentored during their first training. This has now led to more than two hundred doctors and nurses being trained in acute paediatric life support. The course was held over two days, utilising mannikins and simulation in the training and testing of candidates. Evaluation of this training has shown that this trained group scored 30% higher than similar colleagues who had not been trained.
3. As it was evident that there was a dearth of skills in the allied health professions for assessing and managing children with disability, UNICEF funded training in this over one month in 2015. In 2017, the Japanese government (through their aid group JICA), funded two weeks of training to upskill local health professionals in current ways of assessing children with disability. They did this using the GMFCS (gross motor function classification scale6) and MACS (manual ability classification scale7). Healthcare professionals were taught how to plan and implement the basics of therapy with a view to seeing improved function. They did this using the ICF (international classification of function and disability) model, which is a holistic approach to therapy involving the family and child in decision-making. It incorporates diagnosis, how the disability manifests in this diagnosis, how this affects activities and participation in day-to-day activities, what the child or family wish for in terms of improvements, and how the environment impacts all of this. As there is no real equivalent of physiotherapist or occupational therapist in Kyrgyzstan, doctors and the existing therapists have been upskilled in this ICF approach. Changes have been seen in the few years since this was implemented, which has encouraged local staff to learn and to think more about function rather than just diagnosis.
4. Along with this training, the Australian Cerebral Palsy database has been modified and is now established as a local database. (This database is also used in New Zealand, Sri Lanka, Bangladesh and other countries.) Over seven hundred children are now registered, though it will take more funding and expertise to collect data on children from other parts of the country. This data allows information from all maternity hospitals to be collated, and also for data on specific conditions to be examined.
5. Since it was seen that a proportion of children ended up with permanent brain damage following acute illnesses, the immunisation schedule was broadened to reduce this. Changes have been implemented in 2017 which should become widespread in 2018.
6. The training given in 2015 and 2017 noted big gaps in understanding many of the issues associated with children with disability. The idea persists that if we do the right things that brain damage can be cured. If only!! In 2016, a grant from the Australian embassy in Moscow established a telemedicine link with good internet access at the Ak Cyy hospital which is now becoming a tertiary training hospital. Education sessions now run weekly between this hospital and four other centres across the country. This is vital in continuing to improve the knowledge and clinical skills of the professional carers of disabled children. Most doctors do not have ready access to the internet. Nor do they have access to up-to-date written reference materials. Therefore, this area of work in education, and in educating professionals as to how to look up information and analyse data, is an ongoing process. In addition to this teaching, a large number of up-to-date, evidence-based guidelines have been developed for national use throughout the government-health-based internet system.8
Other issues:
The incidence of CP in Kyrgyzstan has been estimated at around 20,000 of the 27,000 children who receive disability pensions. This translates to around 1% of the paediatric population under 14 years of age. It is likely that in reality this is higher, as there are children in remote villages who may not be registered. In Kyrgyzstan there is a shame associated with having a disabled child, and many mothers are divorced as a result. Perhaps a quarter of these children are left in the care of grandparents. This means that CP is around five times more common in Kyrgyzstan than in Australia (where incidence is around 2.5 – 3.6/1000 live births2). Although there is limited data, we are now collecting information on some of these social issues via the CP register. In time, this will give additional information which will help support children with disability.
Information on the data which has been collected and analysed so far has been presented at local medical forums, at health ministry meetings and at meetings organised by the World Bank and other key agencies in Kyrgyzstan. The change that is likely to make the most impact is the implementation of the Anti-D programme for mothers who are Rh negative. This, combined with effective management of neonatal jaundice using international guidelines, could potentially see the reduction in the numbers of children with CP by up to 30%.
“One thing has been clear – the information has been difficult and shocking for some local professionals to take in. However, many are now able to see how they can effect change.”
We have roughly calculated that only five months of disability pension is required to pay for two doses of Anti-D. (In reality it is likely to be more costly, but the costs are still very low compared to the costs of a disability pension for life, and very small in terms of the improved outcomes). However, it is not a simple task. Education, awareness, enabling people access to the information they need for self-care, access for practitioners to good up-to-date guidelines for therapies – all are required to bring about change. One thing has been clear – the information has been difficult and shocking for some local professionals to take in. However, many are now able to see how they can effect change. By contrast, the existing system has been managed on people doing what they were told, not thinking about it nor analysing information. This mindset will take time to change.
Information was presented to the Departments of Education and Labour and Social Development, who are involved with education and special education, and the provision of disability pensions and aids, respectively. This has been of assistance in enabling them to see that many children with milder disabilities could attend normal schools (some children with disability have been excluded from normal schools). It has also revealed what number of aids, such as wheelchairs, are likely to be required for the population studied. These departments have become more active in seeking how best to utilise this information – specifically, to enable more children to be appropriately equipped so that they can function at the best level they can. This process, too, will take time.
Disabling disability and changing attitudes will take time, but things are changing. In the main city, a parent support group is established and part of their project is to increase the amount of accurate information available to parents and families. There are some rural villages where local people have established support and basic therapy centres for disabled children. These are seeing improved outcomes. In a shame-based society, there is often much shame placed on women with disabled children. This will be slow to change, but with supportive and informed parents and better access to good information, understanding of disability is improving. Key people have been supporting these changes at various levels in the community. Changes in management leading to improved outcomes have encouraged many, and also changed the attitudes and expectations of many professionals involved in the disability area. The basic data that has been collected and presented clearly has been a catalyst for local people to bring about change within their country and to follow through on this at whatever level they can.
“One of the key gifts we bring as a western-trained professionals is our education and training. It is hard for local people to understand the rigour of our training and the system in which we have trained.”
One of the key gifts we bring as a western-trained professionals is our education and training. It is hard for local people to understand the rigour of our training and the system in which we have trained. But it is this gift which gives us the ability to collect and analyse information and give a local perspective, so that the local professionals can understand and act on it. There has clearly been much good will from many people to see these changes begin to take place.
“You shall know the truth and the truth shall set you free.”
These words from John 8:32 frequently come to mind. One of the key issues that has enabled success has been engagement with local professionals at all levels. This has been one of the most satisfying things for me as a professional. In a shame-based culture, it is important to understand that in order to gain trust and engage local professionals you work, not by looking at what is being done incorrectly, but by looking at how things can be done better. In particular, seeing how improved outcomes will be achieved by changes in therapies and improved use of medications. This enables them to see things differently and has facilitated the move to change. However, it has taken significant time and discussion. Evidence-based medicine (EBM) is a new concept for many and has not been part of basic training. However, this is changing and the improved outcomes they see using EBM is encouraging the change. But it will take time…
Dr Nick Woolfield
Dr Nick Woolfield and his wife Fay have been living and working in the Central Asia country of Kyrgyzstan since 2013. Nick’s main work as a paediatrician has evolved to be in the area of paediatric disability. They work with a local NGO, STLI (www.STLI.org) whose aims are to develop people to develop their country. They have four adult children living in Australia.
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References:
1. Slusher TM et al: Filtered sunlight, solar powered phototherapy and other strategies for managing neonatal jaundice in low resource settings. Early Human Development (2017), http://dx.doi.org/10.1016/j.earlhumdev.2017.09.008
2. Oskoui M, Coutinho F, Dykeman J, et al. An update on the prevalence of cerebral palsy: a systematic review and meta-analysis. Dev Med Child Neurol 2013; 55:509.
3. Rosenbloom L. Definition and classification of cerebral palsy. Definition, classification, and the clinician. Dev Med Child Neurol Suppl 2007; 109:43.
4. https://www.ncbi.nlm.nih.gov/pubmed/10796088
5. McBain RD1, Crowther CA, Middleton P. Anti-D administration in pregnancy for preventing Rhesus alloimmunisation. Cochrane Database Syst Rev. 2015 Sep 3;(9):CD000020. doi: 10.1002/14651858.CD000020.pub3.
6. Ann-Christin Eliasson , Lena Krumlinde-Sundholm, Birgit Rösblad , Eva Beckung (The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability Dev Med Child Neurol 2006: 48;7 https://doi.org/10.1017/S0012162206001162
7. Novak I, McIntyre S, Morgan C, et al. A systematic review of interventions for children with cerebral palsy: state of the evidence. Dev Med Child Neurol 2013; 55:885.
8. https://www.canchild.ca/system/tenon/assets/attachments/000/000/058/original/GMFCS-ER_English.pdf