Oct 27, 2017

The challenges of accessibility in rural communities in western Uganda

Peter at home
Peter at home

Accessibility is something we take very seriously at Kyaninga Child Development Centre.

Imagine that your 7-year-old child is unwell, with a severe fever and you suspect it is malaria. You know that they need healthcare and medication urgently, that right now, every second counts. Since the last time they had malaria, when you delayed getting to the health centre, they lost their ability to sit independently, to speak and can no longer attend school. You know that further delays in seeking healthcare will probably make your childs disability worse.

But you are a peasant farmer, growing just enough food to feed your family, and maybe sell a little after a good harvest. But there is no spare money for life’s luxuries, such as local transport, new clothes or a mobile phone. Because of this poverty, you live very deep in the village, 30 kilometres from town and about 8 kilometres from the main road: 8 kilometres down a steep, rutted, bumpy, dirt road. In the rainy seasons the road is frequently impassable, and often quite unsafe for use by vehicles. You will need to walk this road, carrying your child, to reach the health centre and that medical attention that you desperately need.

What would you do?

This is a scenario faced by so many families that Kyaninga Child Development Centre works with, living in the mountains and rural villages across the western region of Uganda. Families like Peluce and her 5 children. Her 7-year-old son is Peter, and at the age of 4 he had severe malaria that left him disabled because she was unable to reach the health centre, and she has been struggling to get any help or therapy for him -  the government physiotherapists are based in town, 30km away.

That was until she heard about Kyaninga Child Development Centre, who provide free physio, occupational and speech therapy services, at her home, so she doesn’t have to walk those 8km, leaving her children home alone for hours. KCDC uses their 4-wheel drive vehicle to carry the therapists, medical and therapy equipment to reach those who need us most, but have no access. Now, after regular visits by the KCDC team, Peter is able to sit independently again, is starting to move around and pull himself to standing and is learning to communicate through gestures and pictures as he learns to speak again. We will continue to visit Peluce and Peter and work with them to help regain his abilities and skills so that he can return to school and participate in family and village life again.

Our extensive outreach services are an innovative and unique feature of our rehabilitation/ therapy services.  The majority (57%) of our children and their families  are visited either in their homes or at local health centres. This reduces on the transport costs for families living deep in the village and already facing financial hardship and makes our services more easily accessible to a larger number of families.

Our community outreach services mean that we are able to support more children with disabilities to reach their full potential and have a positive impact on more families and communities.

Our vehicles are essential in enabling us to provide these services. We currently have 1 car (and driver) and 1 motorbike. We are currently in urgent need of a second car and driver; this would enable us to expand our services and further increase our accessibility and impact by 60%.

This year 32% of our children have been seen as part of our health centre outreach programme. That is 1130 children seen on outreach visits so far this year!  We currently visit 11 local health centres across the district. Outreaches enable us to see many children who live local to the health centre and makes for an effective use of our time and resources. We work hard to maximise our impact during our outreaches; we take a several members of our therapy team (physiotherapists, occupational Therapists, speech therapists and our orthopaedic officer) to ensure we meet the diverse needs of the children we see.  During our outreaches, the families also get to meet and share experiences which gives rise to peer support and a sense of growing hope and optimism.   

A further 25% of children and families have been seen at home as part of our home visit programme. This is 880 home visits conducted this year to date! We group our children for home visits into clusters, so we go out for a whole morning or afternoon and see several children who live in 1 geographical area. Home visits enable us to meet more of the family and educate them about the child’s condition and how to support their development. Our physiotherapists can work on positioning in the home environment and where appropriate building parallel cars to help develop standing and walking. Our occupational therapists can practically work on developing independence in personal care, feeding and other activities at home. Our speech therapists can develop custom made communication boards using photos of items used at home.

Currently we limit the frequency of home visits and outreaches are every 2-4 weeks because of how busy our vehicles are! A second car would mean that we could reach more health centres as part of our outreach programme and also visit the existing health centres more regularly. It would also enable us to see more children on home visits and do more regular home visits to those we already see. Increasing the frequency of the services we offer will enable us to have a greater impact on the children’s development.

The area we cover is large and very rural. The average distance to our outreaches is 61 kilometres and the average distance for home visits is 38 kilometres. As you can imagine our vehicles are in constant use, often with discussion and debates in the office about where the car is going to and who needs it most!  Our staff team has expanded greatly in the last year; meaning we can see many more children but are often limited by the availability of a suitable vehicle. The majority of our journeys are on dirt roads, which during the 2 long rainy seasons (each lasting 2-3 months) can become very muddy, slippy and difficult to pass and make journeys on the motorcycle difficult due to the risk of getting a very cold and wet.

Another wonderful opportunity that a second car would give us is to enable us to pick up children from their homes and bring them in to access the centre and our new hydrotherapy pool and give options for more intensive therapy sessions at the centre with access to a wider range of therapeutic equipment and toys. 

This is one of our main rural roads
This is one of our main rural roads
Impassable roads in the rainy season
Impassable roads in the rainy season
Our essential piece of equipment
Our essential piece of equipment

Links:

Jul 31, 2017

Living with disability - Parent education and peer support groups

Albert and his mother Prossy
Albert and his mother Prossy

When your child is born you have such high hopes and dreams for their future, but for some parents whose babies have difficulties at birth it can be a very different story.

If a baby is born prematurely, is deprived of oxygen due to a long or difficult delivery or is severely unwell in the first few months of life, this can lead to brain damage and the baby developing cerebral palsy. Babies and children with cerebral palsy have difficulty co-ordinating movements of their arms, legs and trunk due to having very stiff or very weak muscles. This can cause them to not acheive their developmental milestones at the same time as other children, activities such as head control, sitting, crawling and walking can be delayed or never achieved. They can often also have feeding or swallowing difficulties which can result in malnutrition, and cause further delay and disability.  

The earlier we can offer education, support and therapy intervention to the child and their parents, the better the long-term outcomes are for the whole family.

At KCDC, we offer education and support groups for parents of children under 2-years with cerebral palsy. The programme consists of 10 sessions, teaching parents and caregivers what cerebral palsy is, and covers practical topics such as feeding, positioning, play and communication. The groups are run by a member of the KCDC staff and an expert mother, who has been through the programme themself, and has a child of her own with cerebral palsy, so fully understands the challenges faced by the participants

The programme aims to help the parents maximise their child’s development, wellbeing and quality of life. The group also aims to provide peer support to the parents, allowing them to meet, share experiences and challenges, and learn with other parents of children with cerebral palsy.

Prossy has really enjoyed the group sessions and has noticed positive changes in her son, Albert who is 19 months old. She had a very long labour and delivery and Albert had a very difficult start to life in the special care unit at the local hospital.

“The group has helped me a lot in improving my son. Before he was not sitting at all, now he is sitting with little support. I have learnt about communication, play and feeding…now he can eat, he can laugh and play and is always happy!”

She also spoke about how the group had impacted on her and her family. She had been forced to drop out of her studies to become and nursery school teacher, to care for her son because her family rejected him and would not help her. When she attended the first few groups she appeared sad and anxious, and did not interact much with the other mothers. 

“Now I can leave him with my grandmother, sister of his father when I go to school, they take good care of him. My family used to say to me - you are wasting your time with that boy, but now they understand and encourage me. I am happy that I will be finishing my studies in November and will be a teacher.”

“I feel very happy finding other mothers here. I was always sad before, but now I don’t feel lonely”

Prossy and the other mothers in the group developed a strong bond and have asked to keep meeting up now that the group sessions have finished. They met again this week and the room was filled with laughter. One week, one of the mamas who couldn’t attend the session as her baby had been admitted to hospital, so the whole group went to the ward to see her and her son to check on them. A lovely heart-warming testimony to the power of the groups and peer support.

This year, KCDC has completed 2 groups and currently has 3 more groups running and 2 more about to start in different communities across the Kabarole district. Each group involves 6-10 parents and their children. By the end of 2017, we hope to have reached at least 50 families and caregivers of children with cerebral palsy. Each 10 session programme 

Since the start of the year we have had over 60 referrals of under 2 year olds with Cerebral Palsy and we have completed 1 group programme and are in the process of running a further 4 groups. Each 10 session programme costs $240 / £180 to run and will impact up to 10 children, their families and communities.

Practising correct feeding techniques with Miracle
Practising correct feeding techniques with Miracle
Peer learning and support
Peer learning and support
Prossy with her peer support group
Prossy with her peer support group

Links:

May 8, 2017

Capacity building of healthcare workers in the identification of children with disabilities

12-year-old Emmanuel sits by his mother
12-year-old Emmanuel sits by his mother

There are reportedly 9,349 children (2-17 years) living in the Kabarole district of Uganda with a disability (Uganda Bureau of Statistics 2014). Since the beginning of our pilot outreach programme in January 2015, KCDC has worked with 670 children with disabilities. That is an incredible achievement for a newly established organisation, but clearly demonstrates the need to expand the programme as we have only reached 6.8% of our target population.

Based on the children we have treated to date, we have been able to identify some key statistics which highlight the severity of the problems being faced in the region, and why our work is so necessary:

  • 42% of children seen have cerebral palsy resulting from illness in pregnancy, difficulties during birth or early childhood illness such as malaria or jaundice
  • 21% have a developmental delay also resulting from difficulties during birth or early childhood illness
  • 13% have severe speech/language difficulties
  • 9% have congenital orthopaedic conditions such as club foot
  • 7% have Down’s syndrome
  • 7% have an acquired brain injury from either severe malaria, bacterial or viral infection or through injury.

And of all these children:

  • 27% suffer from severe malnutrition
  • 25% have a form of epilepsy

To reach many of these children, who are living in extreme poverty in rural communities, with limited access to health care and education, KCDC began their community outreach programme – which this GlobalGiving project is raising money to support. The programme runs monthly clinics at 8 local health centres, as well as 5 local schools and individual homes.

This year, we have focused on building the capacity of healthcare workers in these health centres, particularly midwives, nurses and community health workers. The objectives being to increase their understanding of what cerebral palsy and other disabilities are, how they are caused – to dispel the local myths of curses and the devil -  and to increase their ability to identify and manage a child with a disability and be able to give the correct advice to families and caretakers.

We have run 2 half-day workshops, for 85 medical and nursing staff and students at the regional referral hospital and a local hospital, and 2 full-day workshops for 31 nurses and midwives from 14 local health centres. Following this training, we provided information posters and disability registration books to each of the 14 health centres, which has already generated 52 new referrals that may well have been missed before the training.

One health centre who has been particularly pro-active following the training is Rwimi Health Centre III, located 45 km from Fort Portal town, at the border with the neighbouring district. They had registered 34 children with disabilities who had attended their health centre in the first 3 months of 2017, and so KCDC arranged an outreach day to provide assessment, therapy intervention and education to the children and their parents and caregivers.

The children were aged between 9 months and 14 years, with a wide range of disabilities, including cerebral palsy, developmental delay, speech/language delay, autism and Down’s syndrome and none of the children or their families had received counselling or intervention for their disability before this day. Most families were unaware that rehabilitation was possible, and those that did know, were unable to afford the transport costs to travel to Fort Portal, where there is physiotherapy at the regional referral hospital and our centre, KCDC. The outreach programme will continue to vist Rwimi health centre on a monthly basis to follow up with these children and any new referrals that are made.

Children like 12-year-old Emmanuel, who has athetoid cerebral palsy, but has never received any rehabilitation and spends all day at home, while his mother, Sarafina, works in the garden growing food to feed the family, washing, cleaning and looking after his 3 younger siblings. Emmanuel does not have an intellectual disability and understands everything that he is told. He really enjoys hearing what his older brother learns each day at school, and wishes he could join him. But nobody thinks he can go to school because of his disability.

Emmanuel learnt to sit at the age of 5 years, and can move around the floor on his hands and knees but has never learnt to stand or walk. He finally learnt to feed himself last year, but still can’t do other personal care activities such as bathing or dressing and undressing. His speech is difficult to understand, because of the spasticity affecting the muscles in his face and tongue, and the spasticity has also caused his hands to become tightly fisted.

Despite these challenges, the KCDC team saw a lot of potential in Emmanuel and he and his mother were really excited and motivated to work with us. We will be working on functional independence with him, encouraging him to participate in washing and dressing, and working on improving his mobility in crawling and attempting to stand. He will also need a wheelchair so that he can go out into the community with the rest of his family. We will create a communication board so that he can make his needs known more clearly and explore options for school for him with his family.

However, this could have been a very different outcome for Emmanuel if he had received therapy intervention at a younger age. Physiotherapy could have helped him to sit earlier, and to learn to walk with a walking aid. Occupational therapy would have helped him to feed himself, wash and dress himself with assistance rather than relying fully on his mother, and would have helped him learn to write. Making splints for his hands and feet would have helped his mobility and prevented the fisting that has occurred. With a communication board from an early age, and speech therapy to help his oral motor skills, Emmanuel would have been more likely to be integrated into school and his local community, with the family and community having a greater understanding of his disability and his abilities.

This is one boy among hundreds who demonstrate the urgent need for our community outreach programme, who have no other access to urgently needed therapy and rehabilitation services that can change a life.

Healthcare workers learning about cerebral palsy
Healthcare workers learning about cerebral palsy
Teaching the importance of positioning for feeding
Teaching the importance of positioning for feeding

Links:

 
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