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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Jun 5, 2020

Supporting the most vulnerable through COVID-19

Learning sign language at home
Learning sign language at home

In Uganda, therapy and rehabilitation services are extremely poor with Kyaninga Child Development Centre (KCDC) as the only organization providing multidisciplinary therapy services (physio, occupational and speech therapy) in western Uganda.

This project is providing 500 therapy sessions to children with disabilities in western Uganda. Each therapy session is provided by a highly trained physiotherapist, occupational therapist, orthopedic officer, speech and language therapist or a special needs education teacher. The children with disabilities attended daily clinic appointments for therapy. For those who were unable to reach the clinic, KCDC staff conducted home visits and an outreach clinic in every sub-county plus school visits for those who are enrolled in school.

Since the beginning of March to the end of May 2020, KCDC has been able to provide 668 therapy sessions. The number of therapy sessions is lower than in the previously submitted report due to restrictions brought about by the Covid-19 global pandemic.

Since March 2020, in response to the Covid-19 global pandemic, the Ugandan government has introduced a set of strict measures to prevent transmission of the virus in Uganda. These measures include:

  • All schools, universities and colleges closed
  • All non-food markets and businesses closed
  • All passenger flights into and out of the country suspended
  • All land borders closed except for cargo trucks
  • All public and private transport suspended
  • All church services and other public gatherings suspended

 

These are still ongoing except that private cars carrying only 3 people have been allowed to operate since the 26th May 2020. These restrictions have negatively affected the provision of therapy sessions to children with disabilities and we were met with a lot of challenges. We prioritized seeing the most vulnerable and at-risk families, those living in extreme poverty, in unstable and neglectful relationships and we found some to have severe malnutrition, and those with feeding difficulties at risk of getting malnutrition.

At the beginning of April 2020, KCDC staff from both the Kabarole and Kasese clinics were able to conduct home visits to the most vulnerable families, delivering buckets of food, therapy programmes and educational materials. They reached a total of 323 families who were really struggling to survive and were all extremely grateful to be thought of during this time. We found 82 children who had severe malnutrition that required additional food and 4 that required hospital admission for management of their condition. Fortunately, all 4 are putting on weight and are now being managed at home with support from KCDC

One of the most severe cases involved a child called Jackline who has developmental delay and was seen regularly for therapy by our speech and language therapist and occupational therapist. Up until now she had never had issues relating to malnutrition and her therapy was generally focused on functional independence and communication.

When we visited Jackline and her grandmother, we found that they were really struggling, surviving on one meal a day, along with two other children that had been sent to stay with them during the lock down. As the grandmother is caring for all the children alone, it wasn’t possible to admit Jackline to the nutrition ward at the hospital so she was sent back home with therapeutic feeds and additional foods from KCDC. We have been monitoring her progress with regular visits to the house and have been delighted to see her doing so well, gaining weight quickly and returning to her usual energetic and cheeky self!!

The 668 therapy sessions have helped the children to gain functional independence, improved developmental milestones, improved malnutrition status, enrollment in school for inclusive education, improved communication, and reduced stigma and created awareness about disability among the family members and community.

With these successful therapy sessions, KCDC will continue with this project to help other CWD’s in the neighboring districts and create more awareness. We will also actively promote trained community members to create more awareness and refer all the children they think that need our therapy intervention for assessment and management.

Contents of the COVID-19 care package
Contents of the COVID-19 care package
Making a home delivery
Making a home delivery
Jackline after 3 weeks of therapeutic feeds
Jackline after 3 weeks of therapeutic feeds

Links:

Feb 3, 2020

Community-Based Rehabilitation

With a new chair to sit with the family
With a new chair to sit with the family

Therapy and rehabilitation services are very poorly distributed across Uganda with only 32% of districts having any rehabilitation therapists or community-based rehabilitation services (MUST 2016). With an estimated 2.6 million children (13%) and 16% of adults living with disabilities in Uganda, there is currently a significant unmet need for therapy and rehabilitation services. 76% of the population is rural dwelling, with high levels of poverty, making access to services, mainly located in the major urban areas, unaffordable and unreachable, leading to poor social, economic and functional outcomes.

Widespread local beliefs that disabilities are an untreatable curse often cause disabled children and their families to be excluded from their communities. This causes increased family stress, financial burdens and a reluctance to seek help, in particular, from health and educational institutions. The poor understanding of disability is a huge barrier to the progress, learning and independence of most disabled children.

Kyaninga Child Development Centre's (KCDC) baseline surveys showed the need for a holistic, community-based rehabilitation service across western Uganda. This holistic approach needs to tackle the lack of knowledge regarding disability in children, and provide training to parents, caregivers, teachers, health care and community workers in the diagnosis, care and management of a child with a disability. 

By partnering with local health centres, KCDC is able to provide reliable, high quality therapy and education services (physio, occupational, speech and orthopaedic therapy and special education) that are more easily accessible to families, while ensuring holistic healthcare provision for the child and their family. Training village health teams and healthcare workers in identification and management of disability leads to increased understanding and awareness of disability and development, ensuring timely referrals that can prevent secondary disability and complications.

Community-based rehabilitation (CBR) is a multi-sector approach developed by the World Health Organisation (WHO) to increase access to rehabilitation services in resource-poor settings and improve the equalisation of opportunities and social inclusion of people with disabilities (PWDs). Children with developmental disabilities, including those with cognitive, motor, vision, speech and behaviour challenges, lack access to rehabilitation due to the limited number of specialist health facilities, high treatment costs, limited training of health care workers (HCWs) and caregivers, and social stigma within their communities.

Using CBR, KCDC provides low-cost, high-quality therapy to CWDs; train local stakeholders, including parents, HCWs, teachers, and community leaders; and raise awareness on disability within communities. This reduces stigma and discrimination and increase uptake of rehabilitation services that improves the quality of life for CWDs and their families.

The CBR has five components:

  1. Therapy services: provide access to physical, occupational, speech, and orthopaedic therapy for CWDs in health centres, homes, schools, and orphanages
  2. Capacity-building for stakeholders: train caregivers, teachers, and HCWs on the proper care of CWDs, and teach leaders how to advocate for CWDs
  3. Health education and peer support for caregivers: enhance caregivers’ understanding of disability, create support groups for parents
  4. Economic empowerment for parents: provides opportunities for mothers of CWDs to earn a living to support their child’s ongoing rehabilitation costs and augment their family’s income
  5. Community awareness: develop informational materials to raise awareness on disability within the community

KCDC has employed CBR for more than five years in Western Uganda and has proven to increase the quality of life for CWDs and their families by 23%. Since 2014, KCDC has worked with more than 2,700 children with a wide range of physical, intellectual and communication disabilities and provided training to more than 470 teachers, healthcare and community workers. 

This is the story of Stella, sadly a fairly typical story here in Uganda for the families that we work with, but demonstrates the importance of the work we do:

Two years ago, in a small community health centre in western Uganda a little girl was born.

“Pushing was really hard and it took such a long time. My baby was really tired and weak when she was born, and the doctor sent us to another hospital for extra care, but that was over 150km away from home and my family. I was really scared and alone, and no-one told me what was going on. The staff eventually dismissed me, saying that she would be ok”.

The first few months were really difficult. The baby struggled to breastfeed, didn’t gain weight as she should and was always very quiet. At 6 months old the baby was very floppy and weak and was unable to sit or hold her head up to look around, like all the other babies her ages. Her mother started to look for answers…

‘I thought that disability was caused by witchcraft and her disability was my fault. I cried every day and hated ... the burden she caused’

“At first, I thought that one of my neighbours had bewitched her, and I was really resentful towards them. I spent a lot of money and time visiting traditional healers trying to find a cure”.

Eventually a healthcare worker referred her to KCDC.

“At KCDC they explained about the causes of disability and invited me to join the early intervention programme. Through the group and the regular therapy sessions I got my hope back, I understood more about what had happened and I met other mamas with babies like mine. I felt less stressed and more comfortable”

‘The exercises and positions that I learnt in the group helped so much, my daughter can sit and is now learning to walk.”

“I learnt about feeding; before I didn’t know how to prepare foods properly and my baby vomited every time I tried to feed her, and she got thinner and thinner. I learnt that the food wasn’t smooth enough for her and was causing the choking and vomiting. Her feeding has really improved now, she now longer vomits and can even now chew foods as well. She is finally getting fatter”.

Her mother now works with KCDC as an expert mother facilitating the early intervention programme for other families in her lcoal communities.

‘As an expert mother I want to teach other Mamas about disability so that they understand clearly. From my own experience, understanding properly has really helped me. I want to share the importance of the need to love and care for our babies and to have hope’.

Home visits are essential for family engagement
Home visits are essential for family engagement
Physiotherapy in the grounds of the health centre
Physiotherapy in the grounds of the health centre

Links:

 
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