Mar 1, 2021

Teamwork makes the dream work

Edgar
Edgar

As the world grapples with the coronavirus, public health must be the first level of concern, with the focus being on preventative and containment measures as well as equipping and preparing the global health care systems’ capacity to confront the pandemic. The Ministry of Health in Uganda as of 25th February 2021 warned that the current drop in COVID-19 numbers is not good news. Health ministry officials say the drop in numbers is just the calm before an impending second wave.                              Despite the uncertainties brought by COVID-19, efforts remain strong to ensure the safety of our staff and the families that we work with by wearing masks at all times and frequent hand and equipment washing during and after therapy sessions. 

Since the beginning of 2021, we have started 3 new outreach clinics in the Kasese district (Kyalumba, Kinyamaseke, and Karusandara). These new outreaches have increased the number of new referrals coming in and we are looking into increasing the number of therapists to meet the growing number of children.

We received a volunteer for our Nutrition Department in January from Makerere University who is doing great work in managing malnutrition in children of all age groups. 

“I am a graduate from Makerere University with a bachelor's in Human nutrition. I’m a female aged 27 years and married.  I can manage malnutrition in all age groups and people with special needs like people living with disabilities. With this knowledge and experience, I felt it would be okay to share my knowledge with any organization that worked with children.  It was during that time that I landed on an interesting organization that deals with children with disabilities and this is Kyaninga Child Development Centre (KCDC). I got to know about KCDC and what they do from the internet using their website and their Facebook page. I applied as a volunteer in the nutrition department. I was very excited when I was offered that opportunity to work with them.

During my voluntary time at KCDC, I have learned a lot like how to manage feeding difficulties especially experienced by children with cerebral palsy. This included proper positioning and identifying the right food texture a child can feed on as well as food introduction into the mouth. This was so interesting when being done with the speech therapists. “

Multi-disciplinary working is an important aspect of KCDC’s therapy model, and many of our children benefit from seeing two or three therapists who work together to reach the goals and help a child gain functional independence. An example of the importance of this team-work is shared here:”

Brenda- Physiotherapist

“Edgar, a male child, was brought to KCDC by mum when he was 1year and 4months. He was referred to KCDC by CURE Hospital where she had CIC Training. Our team assessed Edgar and discussed the management plan with the parents. On the first visit, mum was complaining of difficulty in standing and walking and was not mobile. On assessment, he had decreased muscle tone and hypermobility in his feet. He stood with everted feet when placed in standing.

Physiotherapy management involved trampoline exercises, sit-to-stand exercises from a raised stool, walking exercises in a wheeled walker aimed at increasing lower limb strength, independent transfers, standing and gait training.

  • 6 months after therapy, mum reported that Edgar could now crawl independently, stand with minimal support, and was able to sit, stand and move with minimal difficulty.
  • 10 months after therapy. Mum reported that his lower limb strength had greatly increased, transfer from sit to independent standing. 
  • 17 months with therapy, Edgar can now walk with the assistance of a wheeled walker issued by KCDC. He is now more mobile; able to make transfers from floor to chair.
  • 23 months with therapy, Edgar can now walk independently.”

Golden- Orthopedic Officer

“I offered PIEDRO boots and AFOs which we thought would be a good idea for firm support around his hypermobile ankle joints. Each time mum would visit our clinic with Edgar would show appreciation for these shoes because Edgar would place his feet well onto the ground and it would become easier for him to take steps in the shoes than when he had no shoes. Edgar's parents both showed their gratitude when they met us last month and said “we are glad that our son can now walk, may God bless you people of Kyaninga, we are even promising to donate the walker that Edgar was using. It is our prayer that other children also improve.” Edgar's dad also attended our Father’s group meeting and encouraged other parents to continue with therapy and give support to the family especially, fathers. “ 

Another milestone from  multidisciplinary teamwork reported by Patrick an occupational therapist

“Desire a 7-year-old girl,  assessed with Visual impairment at KCDC on 12th Feb 2016

Subjective information and observations supported with past medical records reveal that Desire had visual impairment secondary to the rubella virus that affected the mother during pregnancy. Shortly after birth, the mother consulted clinicians at fort portal regional referral hospital private and they referred her to Mulago hospital for further assessment which she did not because of lack of finances.

Shortly after assessment, we referred Desire to Ruharo eye center in Mbarara for further visual assessment before resuming therapy. From there she was diagnosed with visual impairment/ total blindness that cannot be corrected by other medical means and devices such as glasses.

After assessment at 2 years, Desire presented with;

  • Learning difficulties inability to play and explore with challenges to engage in self-care like feeding
  • Behavioral challenges characterized by rocking, self-beating, and dropping objects
  • Social challenges and communication difficulties with the inability to socialize/ interact with strangers
  • Delayed milestones with difficulties in sitting, transfers, walking

After analysis treatment was to be interdisciplinary, with priorities emphasized on;

  • Improving learning abilities through sensory integration
  • Training milestones such as sitting, transfers, standing, etc
  • Improving behavior and communication through reinforcement and communication strategies

Through ongoing therapeutic intervention both at home and clinic Desire has been able to;

  • Sit, stand independently and walk holding on to objects
  • Transfer from one position to the other such as up and down to bed
  • Improved learning abilities and behavior with the ability to explore some textures
  • Improved self-care with ability to feed self on the cup with minimal spilling

As the main goal of therapy to achieve independence/ full potential we work towards increasing engagement in basic activities of daily living such as self-feeding, cleaning dressing, grooming, and improving sensory integration abilities as Desire may need to rely on other senses like tactile, auditory, smell due to loss of vision.”

Through our partnership with Habitat for Humanity, a Non-Government Organisation that provides social housing support for vulnerable rural households, especially women and children through the construction of homes with a ventilated pit latrine, shower stall, and water tank, Desire’s family was blessed with a new spacious house with rails that have helped improve her functional independence.

We look back on last year and see positives in the progress that children have made in their developmental milestones due to families being home more, new projects that we started, and new staff we have welcomed. We are thankful for health and for our supporters that have enabled us to continue working and reaching families in need of help and hope.

Desire's house
Desire's house
Oct 30, 2020

Working closely with families to support Children with Disabilities in the 'New Normal'

The COVID-19 pandemic is not a short term disruption but it is going to take months before our lives go back to normal and due to the exponential nature of the spread of coronavirus, the Government of Uganda is not leaving anything to chance. In response to the COVID-19 global pandemic, the Ugandan Government introduced a set of strict measures in mid-March 2020, to prevent the transmission of the virus in the country. These restrictions were put in place as the healthcare system would be unable to cope with the high numbers of cases seen in other countries, with only 135 intensive care beds and 104 working ventilators in Uganda.

On September 20, President Museveni announced changes to the existing restrictions including opening of Entebbe International Airport and all land borders, allowing schools to re-open on October 15 for Finalists, permitting places of worship to gather with groups of 70 persons or less, lifted restrictions on movement to and from border districts, and allowing open air activities to resume without spectators.

Containment of Covid-19 has ruptured everyday social and economic exchange in Uganda, with lockdown measures posing challenges to people who need to work to survive. Both fear of Covid-19, and adjusting to the lockdown imposed on 31 March 2020, have radically changed every day social lives across Uganda, as in many other countries. Global literature from the Lancet, UNICEF and the World Bank has shared data on the long term impact of COVID 19 on children globally. It is predicted that children will be the prime causalities of the global economic crisis caused by COVID 19. Children are experiencing increased risk of abuse and significant risks associated with increased poverty including increased risk of malnutrition.

The World Food Programme warns of a hunger pandemic post pandemic with 6.7 million children at risk, the majority of these children will be in Sub Sahara Africa. With increased risks of malnutrition in pregnancy and early childhood there is also increased risk of developmental delay and children needing additional support to reach their full potential. In addition to this while most things have reopened it is unlikely schools will reopen until 2021, meaning a whole academic year has been lost. This is likely to mean that many children, particularly those with disabilities may never return to school

 

KCDC continues to provide quality services to children with disabilities and their families in the current new normal by working more individually with families, providing food supplements (Milk powder) to children suffering from malnutrition, supporting their health and wellbeing through home rehabilitation and community outreach programmes whilst working safely and responsibly within national and global guidelines that include using face masks and shields, sanitizing, washing hands and physical distancing. Since the beginning of 2020 we have received a total number of 400 new referrals and the numbers keep increasing by day due to the growing desperate need for our services. Our multi-disciplinary team has to date provided more than 5367 therapy sessions.

KCDC’s Street Business School Programme has registered 200 businesses started by the graduates of the 4 cohorts of the SBS training, including the one associated with HFHU. Feedback received from graduates through focus group discussions revealed that all members have maintained and restarted their business following the Covid-19 lockdown. One member was quoted saying “We are now able to provide for our families, make repairs on our homes, pay for medical costs and we no longer feel isolated and ridiculed by our communities.”

During this quarter, we also partnered with The Everret and Austin Project to give out four wheelchairs to children living with Muscular Dystrophy in Kasese District. Muscular Dystrophy is a genetic condition that worsens overtime causing progressive muscle weakness starting around age 8-9 with the lower limbs resulting in an inability to walk, followed by upper limb weakness and loss of hand function and finally it causes difficulty breathing due decreased muscle strength and power in the chest. It is a difficult condition for families to fully understand and often they spend a lot of time and money searching for a cure, we run a small family support group to increase understanding and offer peer support for this devastating condition. Wheelchairs are essential to allow the child to continue attending school and engaging with life in the family and community.

In addition, the Everret and Austin Project provided packages to thirty families that were struggling with economic hardships related to ongoing COVID 19 restrictions. The packages consisted of basic food stuffs, sugar and soap to meet immediate needs for a few weeks. The packages also included few kilograms of beans that were specifically meant to be planted to help sustain the families in the middle to longer term. The Kasese team is happy to report that most families have used the current rainy season to plant these seeds and we hope that soon, they will be ready to harvest!

The impact of the pandemic has be been devastating however, some children with language difficulities have benefited from the lockdown in the area of language development since they spent more time with their parents and other family members at home. A significant number of children seen for speech therapy have a history of insufficient Language stimulation and as a treatment strategy in this scenario, modification of a child’s enviromnent and encouragement of quality time with children has been used. During home visits our therapists, special needs teachers and social workers met with the family members of the CWD and together they supported the child. With continous follow up, the outcome has been remarkable ie most children with delayed language and history of under stimualtion have greatly improved.                              

Natasha a 5 yr old girl with delayed language is an example of several children with language delay who have shown notable improvement strongly linked to the stimulation made possible by the lockdown. She had 2 word attempts /aa..aa/ for “tata” (yes/Dad) and /aai/ for bye in 2018 during initial assessment. With speech therapy sessions and some carry- efforts by the often busy family members, Natasha’s Language gradually improved to consistent single word utterance and 2-word phrase attempts as of Jan 2020. Following over 3 Months of lockdown when most Family members stayed at home with Natasha this resulted to more stimulation, her language improved exponentially to consistent 3-word utterance, 4-word sentence attempts and following complex instructions.

Links:

Oct 8, 2020

Working closely with families to support CWDs in the 'New Normal'

 

The COVID-19 pandemic is not a short term disruption but it is going to take months before our lives go back to normal and due to the exponential nature of the spread of coronavirus, the Government of Uganda is not leaving anything to chance. In response to the COVID-19 global pandemic, the Ugandan Government introduced a set of strict measures in mid-March 2020, to prevent the transmission of the virus in the country. These restrictions were put in place as the healthcare system would be unable to cope with the high numbers of cases seen in other countries, with only 135 intensive care beds and 104 working ventilators in Uganda.

On September 20, President Museveni announced changes to the existing restrictions including opening of Entebbe International Airport and all land borders, allowing schools to re-open on October 15 for Finalists, permitting places of worship to gather with groups of 70 persons or less, lifted restrictions on movement to and from border districts, and allowing open air activities to resume without spectators.

Containment of Covid-19 has ruptured everyday social and economic exchange in Uganda, with lockdown measures posing challenges to people who need to work to survive. Both fear of Covid-19, and adjusting to the lockdown imposed on 31 March 2020, have radically changed every day social lives across Uganda, as in many other countries. Global literature from the Lancet, UNICEF and the World Bank has shared data on the long term impact of COVID 19 on children globally. It is predicted that children will be the prime causalities of the global economic crisis caused by COVID 19. Children are experiencing increased risk of abuse and significant risks associated with increased poverty including increased risk of malnutrition.

The World Food Programme warns of a hunger pandemic post pandemic with 6.7 million children at risk, the majority of these children will be in Sub Sahara Africa. With increased risks of malnutrition in pregnancy and early childhood there is also increased risk of developmental delay and children needing additional support to reach their full potential. In addition to this while most things have reopened it is unlikely schools will reopen until 2021, meaning a whole academic year has been lost. This is likely to mean that many children, particularly those with disabilities may never return to school

 

KCDC continues to provide quality services to children with disabilities and their families in the current new normal by working more individually with families, providing food supplements (Milk powder) to children suffering from malnutrition, supporting their health and wellbeing through home rehabilitation and community outreach programmes whilst working safely and responsibly within national and global guidelines that include using face masks and shields, sanitizing, washing hands and physical distancing. Since the beginning of 2020 we have received a total number of 400 new referrals and the numbers keep increasing by day due to the growing desperate need for our services. Our multi-disciplinary team has to date provided more than 5367 therapy sessions.

KCDC’s Street Business School Programme has registered 200 businesses started by the graduates of the 4 cohorts of the SBS training, including the one associated with HFHU. Feedback received from graduates through focus group discussions revealed that all members have maintained and restarted their business following the Covid-19 lockdown. One member was quoted saying “We are now able to provide for our families, make repairs on our homes, pay for medical costs and we no longer feel isolated and ridiculed by our communities.”

During this quarter, we also partnered with The Everret and Austin Project to give out four wheelchairs to children living with Muscular Dystrophy in Kasese District. Muscular Dystrophy is a genetic condition that worsens overtime causing progressive muscle weakness starting around age 8-9 with the lower limbs resulting in an inability to walk, followed by upper limb weakness and loss of hand function and finally it causes difficulty breathing due decreased muscle strength and power in the chest. It is a difficult condition for families to fully understand and often they spend a lot of time and money searching for a cure, we run a small family support group to increase understanding and offer peer support for this devastating condition. Wheelchairs are essential to allow the child to continue attending school and engaging with life in the family and community.

In addition, the Everret and Austin Project provided packages to thirty families that were struggling with economic hardships related to ongoing COVID 19 restrictions. The packages consisted of basic food stuffs, sugar and soap to meet immediate needs for a few weeks. The packages also included few kilograms of beans that were specifically meant to be planted to help sustain the families in the middle to longer term. The Kasese team is happy to report that most families have used the current rainy season to plant these seeds and we hope that soon, they will be ready to harvest!

The impact of the pandemic has be been devastating however, some children with language difficulities have benefited from the lockdown in the area of language development since they spent more time with their parents and other family members at home. A significant number of children seen for speech therapy have a history of insufficient Language stimulation and as a treatment strategy in this scenario, modification of a child’s enviromnent and encouragement of quality time with children has been used. During home visits our therapists, special needs teachers and social workers met with the family members of the CWD and together they supported the child. With continous follow up, the outcome has been remarkable ie most children with delayed language and history of under stimualtion have greatly improved.                              

Natasha a 5 yr old girl with delayed language is an example of several children with language delay who have shown notable improvement strongly linked to the stimulation made possible by the lockdown. She had 2 word attempts /aa..aa/ for “tata” (yes/Dad) and /aai/ for bye in 2018 during initial assessment. With speech therapy sessions and some carry- efforts by the often busy family members, Natasha’s Language gradually improved to consistent single word utterance and 2-word phrase attempts as of Jan 2020. Following over 3 Months of lockdown when most Family members stayed at home with Natasha this resulted to more stimulation, her language improved exponentially to consistent 3-word utterance, 4-word sentence attempts and following complex instructions.


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