Evidence Based Practices

Children with developmental disabilities are often neglected, excluded from social activities such as birthdays and other gatherings, having children with developmental disabilities is often considered a curse in most families, children are discriminated against, stigmatized in homes, in schools, in institutions, and in the community (ACPF, 2011). In a survey conducted by Bella Smiles for Children Developmental Disabilities in Uganda, the most diagnosed children developmental disability was Autism Spectrum Disorder (ASD) at 58% (Rusoke et al., 2020). The observable effects were epilepsy and behavioural disorders. Some syndromes such as Rett were not diagnosed at all, and considered as rare CDDs in Uganda, this was attributed to lack of sufficient information on how to diagnose such developmental disabilities. ).

Trends in general disabilities among children in Uganda (0-17yrs) is increasing, as the year 2014, of 57.2% (19,874,000) children in Uganda, 5.82% have a disability (UNICEF 2014). The prevalence of children with disabilities is projected to increase to 16% by the year 2021 (National Action Plan for children with developmental disabilities, 2016/17-2020/21; World Bank, 2021). 

Our goal is to generate evidence-based approaches for managing children with developmental disabilities through research, partnerships and training, and outreach to families having children living with developmental disabilities.

• Forging partnerships with children specialists – dentists, pediatricians, nutritionists, & neurologists aimed to advance testing, treatment and care for CDD in Uganda.

• Generating evidence practices through field research activities in Uganda.

• Building capacity of volunteers and interns through training and community volunteerism.

• Conducting consultative meetings with doctors & other specialists to document clinical experiences, and propose ways of promoting patient values.

• Documenting family experiences and insights on management of child-specific developmental disability, through outreach surveys.

We hope with evidence based practices we will have the following outcomes:

• Clinical experiences documented on management on children developmental disabilities.

• Scientific data driven evidence-based research conducted on CDDS in Uganda.

• Children developmental disabilities management and planning enhanced.

• Evidence generated on patient values, expectations management and general care for CDD.

• Well trained healthcare workforce to diagnose, treat and care for children with developmental disabilities.

• Increased screening of newborn children and early interventions developed for with children developmental disabilities.

The project is expected to be cover the four administrative regions of Uganda. The four administrative regions are the Northern, Eastern, Central and Western regions. These contain 134 districts. The 134 districts shall be targeted to collect evidence through research and partnerships, and outreach strategies. These aim to generate sufficient evidence-based practices that can enhance management of children development disabilities through one year of the project implementation. About 2,027,148 children in Uganda are estimated to be children with general disabilities (MGLSD, 2019). This proposed programme intends to diagnose and provide treatment for about three hundred children across the country with specific developmental disabilities such as Rett, Autism, Cerebral Palsy, Edwards and Downs syndrome. For 2022 with limited funding we were able to diagnose fifty children and the three hundred are waiting to be diagnosed.

BSDD shall ensure that the parents and caregivers of children with developmental disabilities are actively participating in the entire project so that they own the project through skilling on use of CDD equipment, equip them with knowledge on caring for CDD, so that they do not consider the project as some sort of charity. Participation of families during documentation of experiences and insights on management of CDDs shall help in establishing the actual number of CDD in Uganda.

The sewing machines are going to be utilized to make diapers which will be sold to those in Uganda and given freely to our children, wipe, aprons oven gloves which we are already making and selling as vendors in Washington State all proceeds go to supporting the families.

From the clothes items, we run a thrift store where families are given vouchers to come and pick clothes and the remaining items are sold to the public to raise money to help us run some activities. 

The program will comprise of the following members

The board comprises the president, secretary, and treasurer who will guide and monitor the project implementation.

Director: Ritah Ayo. She will be responsible for the overall administration and management of the project. Ritah shall be deputized by Simple Nyanjura Byaruhanga.

About the Project Director: Ritah doubles as the Country Director for Bella Smiles for Developmental Disabilities (BSDD) in Uganda. she has held the position since July 2020, when BSDD started her operations in the country. She hails from the Eastern part of Uganda, Ritah is a graduate of MA in Human Rights and Development, a holder of Bachelor degree in Developmental Studies with experience in implementation of projects on community health in central Uganda.

Program Director: Simple Nyanjura Byaruhanga  holds a degree in social work and is pursuing her master’s in public health. She has worked with organizations like Red Cross during her internship while at university. She is caring and very passionate about children and has experience working with communities and children.

Social workers: Social workers shall be recruited and these shall be responsible for mobilization and conducting initial level village meetings and orientation sessions.

Trainers: Trainers from each region (pediatricians) who are experts with qualifications in children's developmental disabilities management shall be hired to facilitate training and workshops.

Volunteers, and interns: Several volunteers and interns shall be allowed to participate in the project, to build capacity for diagnosis, treatment, and care when funds have been secured. BSDD shall also accord international volunteers/interns to train at their facility on payment of a moderate fee as shall be agreed upon by the Board of Directors. Internship and volunteer-ship are expected to enhance both research and hands-on experience in the several therapeutical programs at BSDD hospital complex in Uganda. 

So far we have been able to diagnose over two hundred and sixty-four children in four districts in Uganda. After the diagnosis, we have not been able to provide evidence-based treatment services like Speech, Occupational, physical, and ABA therapies due to funding. We have also done alot of awareness through social media, book, and traditional Ugandan Music to reduce the stigma associated with children who are affected by Intellectual Developmental Disabilities.  We have also identified the main challenges to why most families are not diagnosing their children and focused on training and more support most reasons being;

Intercultural religious beliefs

Extreme Poverty

Lack of information

Poor infrastructure in Uganda especially health, education, and roads

Shame 

We have been very proactive by engaging the parents and caregivers by finding them where they are and diagnosing the children at home or in their communities.

Also through empowerment, we have started empowering parents through parent to parent, mentorship and financial initiatives to address the extreme poverty and also the lack of information and intercultural religious challenges.

We are looking for partnerships and collaborations and also monetary funds to continue our current programs and have sustainability in our organization. The main challenge is finding volunteers especially Therapists, pediatricians, special education teachers, and other professionals willing to offer services to the clients we currently have and these are marginalized populations. The Organization does not charge families any money to have the children diagnosed and will not be charging  for services . 

We are using inclusive child health services that cater to the diverse needs for children with Intellectual Developmental Disabilities.

We are incorporating assistive technology using tools like;

Sensory integration tools: These tools can help children who have sensory processing disorders.Like weighted blankets, sensory toys 

he use of technology to enhance learning is an effective approach for many children.

I hope this information helps. Let me know if you have any other questions.

Learn more

Currently, we are using herbal medicine for most of the symptoms that most children are experiencing. The most common complaints are 

Lack of sleep

constipation

pain

We have a small scale herbal farming utilizing herbal plants like rosemary, lavender, Aloe vera  and other herbs . 

Evidence-based practices can significantly improve the lives of children with special needs. A systematic umbrella review conducted by Tracey Smythe et al. The study focused on prevalent disabilities worldwide and identified evidence-based interventions. The authors found that access to comprehensive care and support for children with disabilities is crucial for their well-being and overall development. This requires establishing inclusive child health services that cater to diverse needs. 

Our goal is to generate evidence-based approaches for managing children with developmental disabilities through research, partnerships and training, and outreach to families having children living with developmental disabilities.

• Forging partnerships with children specialists – dentists, pediatricians, nutritionists, & neurologists aimed to advance testing, treatment and care for CDD in Uganda.

• Generating evidence practices through field research activities in Uganda.

• Building capacity of volunteers and interns through training and community volunteerism.

• Conducting consultative meetings with doctors & other specialists to document clinical experiences, and propose ways of promoting patient values.

• Documenting family experiences and insights on management of child-specific developmental disability, through outreach surveys.

Expected Outcomes

• Clinical experiences documented on management on children developmental disabilities.

• Scientific data driven evidence-based research conducted on CDDS in Uganda.

• Children developmental disabilities management and planning enhanced.

• Evidence generated on patient values, expectations management and general care for CDD.

• Well trained healthcare workforce to diagnose, treat and care for children with developmental disabilities.

• Increased screening of newborn children and early interventions developed for with children developmental disabilities.

The project shall rely on a system of mid-term reviews, annual progress reports, research conducted and, a feedback questionnaire survey on family insights and experiences on management of children with developmental disabilities in Uganda as part of the reporting metrics. A detailed monitoring and evaluation matrix shall be developed when funds are granted. Data shall be collected using questionnaires and other online tools such as google forms. These designed depending on the category of respondents.

With the help of volunteers, they will be trained on how to interpret the questionnaires before they collect the date. The information will then be reviewed by the supervisor and entered into the data system upon which a report will be generated.

Monitoring and Evaluation experts shall be hired to conduct mid-term and long-term evaluations of the evidence-based projects of BSDD through interviews, focus group discussions and review of video tapes and voice recordings.

A project report status template will be used to capture the milestone, achievements and risk assessment on the progress of the report. 

So far we are integrating data management tools and using our social media platforms to do most of the outreaches and our work. 

In Uganda due to extreme poverty and nature of the way people live , we are partnering with the United Nations to leverage technoly.

United Nations Capital Development Fund (UNCDF) has developed and piloted a Digital Community Entrepreneur (DCE) model to drive access to digital products and services in rural communities in Uganda. The pilot of the model focused on smallholder farmers working within the maize, seed oil and dairy value chains. DCEs are young people (between 18 to 35 years old) working within a community, with good business acumen and are trusted by the community. These young people earn income from selling products including phones, airtime, data top-ups as well as mobile money services within their communities on which they earn a commission. The DCEs work as role models or peer educators tasked with training and supporting farmers in the use of new digital solutions. Through training, the DCEs are able to build the capacity of rural farmers to effectively share digital knowledge and skills with other farmers within their villages.

We have only six people writing on this at this time. 

Three years  

Our current have a diverse team and most of the team members are in Uganda and in Tacoma Washington.

Our core values are embedded in respect, kindness, compassion, integrity, collaboration and inclusion.

We  ensure that the parents and caregivers of children with developmental disabilities are actively participating in the entire project so that they own the project through skills on the use of CDD equipment, equip them with knowledge on caring for CDD, so that they do not consider the project as some sort of charity. Participation of families during the documentation of experiences and insights on the management of CDDs shall help in establishing the actual number of CDD in Uganda.

The sewing machines are going to be utilized to make diapers which will be sold to those in Uganda and given freely to our children, wipe, aprons oven gloves which we are already making and selling as vendors in Washington State all proceeds go to supporting the families.

From the clothes items, we run a thrift store where families are given vouchers to come and pick clothes and the remaining items are sold to the public to raise money to help us run some activities.

Multi-stakeholder engagement:

BSDD shall work with other partners such as CBOs, hospitals and clinics working to improve welfare of children with developmental disabilities in Uganda. BSDD shall also work with district health officials and local councils while documenting best research evidence, insights and experiences on management of CDD in Uganda. This strategy is aimed to increase support for funding, and project visibility.

Expanding resource and donor base:

After securing the initial funding, BSDD will always engage new donors and other stakeholders in funding research, the organization will continuously apply for competitive research grants aimed at generating evidence which will guide best practices for the management of CDD in Uganda.

Fundraising: BSDD shall also get involved in fundraising activities such charity walks, car washes, installing donation boxes in banks, reaching out to corporate organizations for funding, and charging a moderate fee for international volunteers who come to train at BSDD facility in Uganda. 

BSDD shall ensure that the parents and caregivers of children with developmental disabilities are actively participating in the entire project so that they own the project through skilling on use of CDD equipment, equip them with knowledge on caring for CDD, so that they do not consider the project as some sort of charity. Participation of families during documentation of experiences and insights on management of CDDs shall help in establishing the actual number of CDD in Uganda.

The sewing machines are going to be utilized to make diapers which will be sold to those in Uganda and given freely to our children, wipe, aprons oven gloves which we are already making and selling as vendors in Washington State all proceeds go to supporting the families.

From the clothes items, we run a thrift store where families are given vouchers to come and pick clothes and the remaining items are sold to the public to raise money to help us run some activities.

Multi-stakeholder engagement:

BSDD shall work with other partners such as CBOs, hospitals and clinics working to improve welfare of children with developmental disabilities in Uganda. BSDD shall also work with district health officials and local councils while documenting best research evidence, insights and experiences on management of CDD in Uganda. This strategy is aimed to increase support for funding, and project visibility.

Expanding resource and donor base:

After securing the initial funding, BSDD will always engage new donors and other stakeholders in funding research, the organisation will continuously apply for competitive research grants aimed at generating evidence which will guide best practices for management of CDD in Uganda.

Fundraising: BSDD shall also get involved in fundraising activities such charity walks, car washes, installing donation boxes in banks, reaching out to corporate organisations for funding, and charging a moderate fee for international volunteers who come to train at BSDD facility in Uganda.