REHABILITATION OF 300 CEREBRAL PALSY CHILDREN

1. Introduction

On 26^th February 2025 a sensitization meeting was conducted for local leaders to raise awareness about Cerebral Palsy (CP) rehabilitation services and their role in supporting affected families.

1.1 Opening Remarks

The meeting was officially opened by the CFU Administrator, who represented the Executive Director (ED), who welcomed the local leaders to CFU and provided a brief introduction to the organization, including:

The mission and vision of CFU

The services offered at the medical center

 The importance of community partnerships in supporting children with cerebral palsy

1.3 Objectives of Senstiztion meeting

The key objectives of the sensitization meeting were to:

1. 1. Increase local leaders’ awareness and understanding of Cerebral Palsy (CP) and its impact on children and their families.

   2. Share available rehabilitation services and how families can access them.

   3. Address common misconceptions and stigma associated with CP within the community.

   4. Clarify the role of local leaders and VHTs in supporting children with CP and linking families to services.

   5. Promote collaboration between CFU, local leaders, and the community to strengthen inclusive support for children with disabilities.

2. Attendance

A total of 30 participants attended the meeting, including:LC1 and LC2 Chairpersons, Vice Chairpersons, Secretaries for Women Affairs, VHT Coordinators, Youth Leaders,Village Health Teams (VHTs) and Religious Leaders

Participants were drawn from the 10 parishes which included: Makerere 1, Makerere 3, Wandegeya, Bwaise 1, Bwaise 2, Bwaise 3, Kawempe 2, Komamboga, Mpererwe and Kanyanya

3. Key Topics Covered

3.1 Understanding Cerebral Palsy (CP)

•  CP is a lifelong condition caused by brain damage that affects movement, muscle tone, and coordination.
•    Causes: Brain injury before, during, or shortly after birth due to birth complications, infections, or lack of oxygen.
•  Types of CP: Spastic (stiff muscles), Dyskinetic (uncontrolled movements), Ataxic (balance issues), and Mixed.
•  Prevalence: Globally, CP affects 2-3 per 1,000 live births, but numbers may be higher in Uganda due to limited healthcare access.
•   Misconceptions: CP is not a disease, not contagious, and not caused by witchcraft.

3.2 Rehabilitation Services for Children with CP

•  Physiotherapy: Helps improve movement and muscle control.
•  Occupational Therapy: Assists children in developing daily living skills.
•  Speech Therapy: Supports children with communication difficulties.
•  Assistive Devices: Wheelchairs, braces, and walkers aid mobility.
•  Community-Based Rehabilitation (CBR): Ensures services are accessible at the grassroots level.
•  

3.3 Challenges Faced by Children with CP and Their Families 

• Physical Challenges: Difficulty in walking, talking, eating, and performing daily tasks.
•  Social and Emotional Impact: Families face stigma, discrimination, and isolation.
•  Financial constraints: Therapy, assistive devices, and transport to rehabilitation centers are costly.
•  Caregiver Burnout: Many caregivers experience stress, exhaustion, and financial strain.
•   Lack of Awareness: Many families do not know about available services.
•  Geographical Barriers: Limited access to rehabilitation centers in underserved areas.
•  Limited Trained Professionals: Few specialists in CP care and rehabilitation.
•  Limited Awareness & Misinformation: Many families still hide their children due to stigma.
•  High Expectations from Caregivers:

•  Frustration & Loss of Hope:

o Some caregivers gave up on seeking help because they felt organizations only took photos of their children without offering tangible support.

o As a result, some caregivers no longer want to engage with CP-related programs.

3.5 Addressing Stigma & Misconceptions

•  Common Misconceptions:
   CP is a curse →  It is a medical condition.
   CP is contagious →  It is not a disease.
   Children with CP cannot learn →  Many can go to school and be productive.
•  Effects of Stigma:

o Families isolate their children, preventing them from getting help.

o Children with CP face discrimination at school and in social spaces.

o Caregivers experience emotional and financial stress.

•  How Leaders Can Address Stigma:
   Educate communities through awareness campaigns.
   Promote disability rights and inclusion.
   Engage cultural and religious leaders to spread positive messages.
   Lead by example—visit affected families and offer community support.

The Role of Local Leaders in Supporting CP Rehabilitation

•  Mobilizing Community Support: Raising awareness about CP and available services.
•  Linking Families to Services: Ensuring caregivers are linked to rehabilitation centers.
•  Addressing Stigma: Educating communities to accept and support children with disabilities.
•  Advocating for Inclusive Policies: Encouraging schools and local government to support CP-friendly programs.
•  Economic Empowerment: Support income-generating activities for caregivers
•  One participant requested referral books to assist a child in his community in accessing CP assessment services.
•  Some VHTs were provided with referral books to help link children with CP to appropriate healthcare services.

3.6  Lessons learnt

1.  Caregivers have high expectations from organizations, leading to disappointment and disengagement when support is limited to training.
2.  Frustration and loss of hope among caregivers hinder the uptake of CP rehabilitation services.
3.  Local leaders are willing to help, but they need better information and resources to link caregivers with services.
4.  VHTs play a key role in supporting caregivers and identifying children with CP.
5.  Continuous engagement is necessary to rebuild caregivers’ trust in available services.
6.  Improve caregiver engagement and support to manage expectations and ensure long-term involvement.
7.  Enhance communication from organizations about the type of support available.
8.  Distribute referral books to more local leaders and VHTs to facilitate CP assessments.
9.  Introduce counselling services for caregivers to address frustrations and prevent disengagement.
10.  Strengthen partnerships between community leaders, health workers, and rehabilitation centers for better service delivery.

5. Recommendations from Local Leaders

Increase community awareness campaigns to reduce stigma.

 Train more local leaders and VHTs on CP rehabilitation services.
 Introduce income-generating projects to ease caregivers’ financial burden.
 Advocate for CP services in local health centers to improve accessibility.
 Develop caregiver support groups to sustain engagement and motivation.

7. Conclusion & Call to Action

The meeting successfully raised awareness among local leaders about CP and highlighted the need for realistic caregiver expectations, better communication, and continued engagement.

Call to Action:

 Local leaders should actively refer caregivers to CP services using the referral books provided.
 Organizations should improve transparency on available support to prevent false expectations.