REHABILITATION OF 300 CEREBRAL PALSY CHILDREN

SENSITIZATION REPORT FOR LOCAL LEADERS ON CEREBRAL PALSY FAMILY-DIRECTED REHABILITATION
1. Introduction
In this quarter we conducted sensitization meeting for local leaders to raise awareness about Cerebral Palsy (CP) rehabilitation services and their role in supporting affected families.
 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 with in Kawempe 

 Key Topics Covered

 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.

 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

 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.

Challenges Identified by Local Leaders
• Limited Awareness & Misinformation: Many families still hide their children due to stigma.
• High Expectations from Caregivers:
o Some caregivers expect financial support, school fees, or material aid from organizations.
o They often feel disappointed when organizations focus on training and awareness instead of direct financial assistance.
• 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.

 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

Referral System
• A Chairperson from Makerere 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.
Lessons Learned
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.

 Recommendations from Local Leaders
1. Improve caregiver engagement and support to manage expectations and ensure long-term involvement.
2. Enhance communication from organizations about the type of support available.
3. Distribute referral books to more local leaders and VHTs to facilitate CP assessments.
4. Introduce counselling services for caregivers to address frustrations and prevent disengagement.
5. Strengthen partnerships between community leaders, health workers, and rehabilitation centers for better service delivery.

 General Recommendations
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.

 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.
Continuous engagement with caregivers is essential to rebuild trust and encourage participation.

Empowering Families Through Home-Based Rehabilitation: Quarterly Report on Occupational Therapy Support for Children with Cerebral Palsy"

1. Introduction

This quarter, our program prioritized home-based rehabilitation for children with cerebral palsy (CP), emphasizing functional skills development and caregiver support in the home setting. This approach aimed to enhance caregiver knowledge and skills for daily care while addressing the individual rehabilitation needs of each child. Our occupational therapist (OT) led this component, conducting assessments and training sessions within family homes, ensuring that each child's unique challenges and needs were met with tailored, practical interventions.

2. Key Objectives and Activities

Individualized Home Assessments:

Conducted thorough in-home evaluations of 20 children with CP, assessing motor skills, adaptive abilities, and the home environment.

Identified specific needs for each child, including positioning, mobility aids, feeding support, and communication tools.

Caregiver Training and Skill-Building Sessions:

Provided hands-on training for caregivers in daily routines, positioning techniques, and adaptive skills to promote each child’s independence and comfort.

Demonstrated therapy exercises caregivers could incorporate into their daily activities, such as play-based exercises to enhance fine and gross motor skills.

Addressed specific concerns, such as preventing contractures, improving feeding techniques, and managing behavioral challenges.

Home Adaptations and Environmental Modifications:

Recommended modifications to optimize each home’s environment for therapy and safe mobility, including suggestions for low-cost aids and adjustments to common areas to prevent falls and improve accessibility.

Introduced creative ways to use household items for therapeutic activities, reducing the need for specialized equipment that may be financially out of reach.

Follow-Up and Progress Monitoring:

Conducted follow-up visits for 15 children to monitor progress, troubleshoot issues with therapy adherence, and adjust treatment plans as necessary.

Held feedback sessions with caregivers to understand challenges, review progress, and provide additional support or adjustments to home exercises.

3. Achievements and Outcomes

Improved Caregiver Confidence: Training sessions increased caregiver understanding of CP and enhanced their ability to manage daily activities and exercises with confidence.

Enhanced Child Participation in Activities of Daily Living: Children displayed improvements in functional skills, such as sitting posture, self-feeding, and interactive play, resulting from structured home exercises.

Positive Behavioral Changes: Caregivers reported decreased frustration and improved mood in children due to increased engagement in daily routines and purposeful activities.

Successful Environmental Adjustments: Homes were modified to support safer and more accessible environments, leading to a reduction in child injuries related to mobility challenges.

4. Challenges Encountered

Resource Limitations: A lack of access to specialized equipment, such as standing frames and adaptive feeding tools, limited some interventions. Families often had to use improvised alternatives.

Caregiver Availability and Fatigue: Some caregivers found it challenging to consistently implement exercises due to work schedules or caregiving fatigue, impacting the continuity of certain therapy exercises.

Transportation Barriers for Follow-Up Visits: Due to limited transportation options, follow-up visits for remote families posed logistical challenges, which impacted the frequency of check-ins for some participants.

5. Lessons Learned

Flexibility in Intervention Delivery: Customizing interventions with low-cost solutions and everyday household items increased caregiver compliance and minimized costs.

Importance of Support Networks: Engaging extended family members and local support groups improved caregiver resilience and promoted a shared responsibility for the child's care.

Need for Emotional and Mental Health Support for Caregivers: Caregiver stress is a significant factor; incorporating occasional mental health check-ins or support resources would be beneficial in future quarters.

6. Recommendations and Next Steps

Expand Access to Low-Cost Adaptive Equipment: Seek partnerships with local organizations or donors to provide affordable or donated mobility aids and other necessary equipment.

Develop a Remote Follow-Up Option: Create a remote follow-up system (e.g., phone or video consultations) to support families in hard-to-reach areas and ensure ongoing guidance in implementing therapy activities.

7. Conclusion

This quarter’s focus on home-based care for children with cerebral palsy, led by our occupational therapist, made a positive impact on caregiver capabilities and children’s daily functioning. By equipping families with knowledge, skills, and home-modification strategies, we helped foster a supportive and sustainable environment for children with CP. Moving forward, we will address identified challenges by pursuing low-cost equipment solutions, enhancing caregiver support, and refining our follow-up methods.