Rural outreach to 100 children with disabilities

Kyaninga Child Development Centre continues to offer physiotherapy, occupational and speech therapy to children with disabilities in their clinic and through community outreach activities to rural villages in Western Uganda. KCDC staff average visits to 30 children per week through their community outreach activities, where therapy assessment and treatment is conducted in private homes, local health centres, under trees in villages, churches and schools. They are also averaging 10 new clients a month through these activities.

KCDC has had the benefit of a volunteer British speech therapist, Jo, for the past 4 months, who has been training all our staff in speech and language assessment and treatment, and has provided comprehensive speech, language and feeding assessments to over 60 children. Many of these children are unable to speak and have been unable to communicate with their families and in turn have been excluded from community and social activities and attending school because of this lack of communication. By introducing a variety of simple alternative communication methods, including sign language and picture communication, 73% of these children have reached or partially reached their set objectives and families and communities are becoming much more inclusive.

In addition to this Jo was also able to attend a two day training workshop with specialist feeding therapists in Kampala. They were visiting from the UK, teaching basic feeding techniques to mothers in a cerebral palsy education group. Through the training they were teaching the mothers how to correctly position their child, use utensils (different spoons/cups), and prepare food at different textures and basic nutritional advice. 

After completing this workshop Jo returned to KCDC and along with KCDC’s senior Occupational Therapist, Rachel, they set about assessing and advising parents that were identified to have children with feeding difficulties and malnutrition. 

They devised a simple assessment questionnaire and gathered some example cups and spoons.  They have only been assessing children in the past few weeks but have already seen and followed up over 15 children and more are booked in for assessments in future outreach programmes.  It’s exciting to see immediate changes being in made in the way a mum/carer is feeding their child, which is having a direct impact on the safety of their feeding and in the success of moving a child on to the next stage of feeding development e.g. moving onto solid food, chewing or biting skills which previously were not there. 

Many of our children with feeding and swallowing difficulties are also severely malnourished so we also provide basic nutritional advice around what foods are good for building strength and weight as well as providing alternative ways to introduce liquids safely using locally sourced items such as avocado, porridge, mashed papaya and banana. 

Both Jo and Rachel are excited about, and have enjoyed developing, this additional element to the services provided by KCDC and have been really encouraged to see dramatic changes in such a short amount of time.  This also shows that a little bit of training can go a long way in improving a child’s ability to develop essential skills to improve their daily living.

A short testimonial from one of these mothers explains how a little change can go such a long way:

Daniel is two years old and lives with his grandmother, as his mother abandoned him when he was 6 months old. He has severe cerebral palsy and is unable to sit without support. He has been attending KCDC for over 6 months for physiotherapy to improve his head control, trunk strength and hand function, but his grandmother has always complained about how he chokes on his food when she tries to give him anything solid, and he survives on a diet of milk and porridge. This has made him extremely malnourished.

Daniel was seen by Rachel and Jo, under a tree during one of the regular community outreach programmes, where they assessed their feeding technique. They found that his positioning was poor, tilted too far back, she was rushing to put the next mouthful in before checking he had managed to swallow and clear the food, and each mouthful was too big for him to manage.

By changing him into a more upright supported position, using a small spoon to control quantity, and checking his mouth before adding more food, she realized that he can take mashed solid foods without coughing and choking, and that the total time to feed him was reduced. When reviewed 2 weeks later, Daniel’s grandmother reported that he had more interest in food, was coughing much less at every meal and she is already able to increase the range of foods she can give him. She was amazed that he was able to eat such a variety and is now hopeful he can put on weight and be more successful with his physiotherapy progress.

Links:

• Meet the team and see the work we do in Western Uganda
• keep up to date with the latest KCDC activities

In December 2015, Kyaninga Child Development Centre successfully completed the Global Challenge where we were raising money to help reach 100 children with disabilities living in extreme poverty. Thanks to the generous donations given I am happy to share with you the stories of 2 children that we have already been able to help. Joseph is a 17-year-old boy who was referred to us by one of our partner organisations who work in his community. He was born healthy but upon receiving his polio vaccination at the age of 4 he had a strong adverse reaction, which left him severely disabled with no movement in his arms or legs. Due to a lack of rehabilitation services available at the time and poor understanding of disability amongst his family, his only form of care was to be lain on a mattress in the corner of the room. Over the years he became fixed into a curled up position, with only a little hand and elbow movement in his right arm, but he is able to speak and understands well. When we met him he was curled up on a mattress on the floor with his family standing over him. His arms and legs have become extremely stiff from 12 years of no movement and unfortunately it will be difficult to reverse. However, it was important for him to be able to interact better with his family so we suggested sitting him in a chair every day so that he was at eye level with them. We also taught his family about the importance of passive movements to reduce the stiffness in his limbs and also to change his position from lying to sitting regularly to prevent further problems. When we returned a couple of weeks later we were happy to find him sitting in a chair and he told us that although he gets uncomfortable because of his stiffness, he enjoys being able to see his family and interact with them better. He even sits up with them while they have their meals, though currently he is unable to feed himself. We have also noticed an increase in the movement he has in his right hand and arm and there is also a little movement appearing in his left as well. We gave him activities to practice while he is sitting in his chair and, because of the donations we received, we were able to provide a made to measure chair for him so that he can be more comfortable. We will continue to see Joseph on a regular basis to develop the movement that he has with an aim that he will one day be able to feed himself. In December 2015, we conducted one of our community outreach assessment days. The team consisting of physiotherapists, occupational therapists and a doctor assessed over 50 children with disabilities. One of the children that were brought for assessment was Davis, a 5-year-old boy with developmental delay. His mother was concerned that he was unable to walk, had poor speech and some learning impairment. They had never taken him to the hospital to find answers for his disabilities because they couldn't afford the transport to get there even though it was less than 10km from their home. On top of that, they also were also unaware that there was anything that could be done anyway. During their assessment Davis was found to be able to stand with minimal support and had good upper limb function. He is unable to speak but can understand what is said to him. He communicates by pointing only but enjoys a good laugh!!! We advised his family to work on muscle strengthening exercises for his legs and trunk and to practice standing every day. We also decided to build him a set of parallel bars in his garden so that he can practice standing and walking as often as possible. We will also make him a walker so that as he gets stronger he is able to walk further around the house and gardens. His Mum was extremely grateful for the provision of therapy services and the parallel bars, and has already noticed improvements in her son. She said that "even her own family members have never put as much effort as to think of supporting her and her family like this, with such a useful aid" There are many children that we see each week with stories similar to these, often the diagnosis is different but the outcomes are the same: A loss of movement, a loss of independence, reliance on family and inability to interact with family and friends. Our goals are often similar; educate the family on the causes of disability; that it is not witchcraft, the devil, contagious, or a curse, and to reinstate hope and a belief that the child can improve with intervention. We look to strengthen their mobility skills such as sitting and walking, improve on their personal skills such as bathing, feeding, toileting, and interacting with family and friends, and even being enrolled into school. All of this is made possible through the support we receive and so a big Thank You must be said for helping us to achieve these goals!

Links:

• Meet the team and find out more about the work we do
• Find out how our children are progressing with regular updates