REHABILITATION OF 300 CEREBRAL PALSY CHILDREN

Family care group model By Ruth Nakalembe

In the last couple of months, we have been very busy at CFU. 8Medical staff, 6 lead/expert mothers, and 4 Community Health Workers (CHWs) were trained in rehabilitative skills to support children with Cerebral palsy in the Family Care Groups (FCGs). They were also trained to screen children in the community for Cerebral palsy and refer them for detailed evaluation at the CFU.  Based upon the degree and types of their disabilities, multiple children and mothers are placed into Community Family Care Groups led by CHWs and Lead Mothers who have been trained using the Ubuntu teaching modules for childhood disabilities to improve caretaker care of their children with Cerebral Palsy and provide peer support.  Multiple assessment tools are administered at baseline (Caregiver and Nutrition Clinical Assessments, PEDQoL, MDAT, GMFM, Family Inventory & Satisfaction questionnaires using REDCap apps) and periodically through the three-year program to evaluate progress.  Community educational programs are established to overcome cultural stigmas about CP.

To date, a total of 50 children with Cerebral palsy have been enrolled in the program. 65% of the caregivers said they were not accepted in their communities; 75% were unemployed and separated from their husbands. The typical medical conditions faced by these children are malnutrition, malaria, pneumonia, and diarrhea.

 5 Family care groups have been formed within the different parishes with improvements observed in the care/function of the children and community awareness.  Enrolled mothers have gained confidence, identified many additional children with Cerebral palsy, and have become more involved in their communities.  In these different family care groups, the caretakers are taken through a number of modules. Below are the modules that are implemented in the family care groups (see figure 1)

The Family care groups are a platform that can be used to deliver health services like community rehabilitation. These groups offer the opportunity to increase access to community rehabilitative services to children with cerebral palsy. The parents in the groups facilitate their peers, this alone develops their soft skills like communication and managing the group. 

"I have shared my experiences and through sharing, others have trusted me, and they share with me their experiences and this gave me hope my child will get better. The knowledge and interaction with other mothers and their disabled children give me confidence. I have been able to relate freely with others and it has reduced my stigma" (Lead mother from one of the Family care groups in Kilokole, Kawempe division, Kampala district.)  

Self-stigma is being handled when these caregivers with cerebral palsy children meet up in small care groups. The care group platform allows them, caretakers, to learn that they are not alone and get an opportunity to learn together about cerebral palsy from health workers.  "...It gave me confidence and I got to know what happened to my child and I appreciated the fact I was not alone." (One of the caretaker from katoogo Family care group) See pictures of the care groups during their weekly meetings in the community.

In the above photo, katoogo FCG during the session of learning how to position the child.

Thank you for your support.

• Family_care_group_Qtr_3_report.pdf (PDF)
  

Child and Family Foundation in partnership with baby Ubuntu conducted five days of training on cerebral palsy targeting Caregivers, Village health teams, community leaders, and staff. The training commenced on the 6^th of June and ended on the 10^th of June, in attendance were 19 participants (14F/5M) conducted in CFU space. The training was fully officiated by the Ubuntu coordinator Racheal with a remarkable opening to the participants majorly giving a brief background of how Ubuntu evolved and why this training. During the training, the standard definition of early childhood intervention was disseminated to mean a process of providing specialist interventions and support services early in life after the onset of identifying a problem. It was shared that the first year of a cerebral palsy-affected child was a very sensitive development period for motor, skills, communication, and self-care. Due to early brain injury, we were advised to give timely support to the child and family immediately after identification in form of family support, counseling, therapy, positioning, feeding along with several other anticipated unknown challenges of childhood disability.

The major aim of this program training was to supplement the getting to know the cerebral palsy program to include children as young as 6 months. Through earlier interventions designed to enhance a child’s development in the first few years after birth, we had greater opportunities to positively influence the caregiving environment and participation of the child’s participation of the child in the family and community life as well as limit developmental and cognitive imparities.

Training content/modules

During the training, several modules were disseminated including Getting started (About the program, Running session, Conducting a home visit), Know your child, Positioning and carrying, Eating and drinking, Learning to move, Communicating, Play and stimulation, Everyday activities, Togetherness and belonging Our community.

Aims/Objectives of conducting the training

• To increase the knowledge and confidence of caregivers regarding their children’s condition and their needs
• To encourage positive attitudes toward having a child with a disability within the family
• To improve problem-solving and peer support amongst caregivers
• To promote the inclusion of children within the family and community
• To equip participants with skills to care for their children and promote optimum development and reduce further disability eg  contracture, limb, deformities
• To enable early identification and management of malnutrition
• To support parents in identifying common health problems seizures and pain and assist them to treat them quickly.

The training approach Used for the training

• Participatory approach
• Specialized trainers from Baby Ubuntu
• Training facilitator manuals
• Case studies
• Best practices as shared by caregivers and parents

Training Reflection

What went well during the training?

The togetherness of all participants (medical, program. caretakers VHT)

The participatory approach of the training

Use of sieve as a food preparation process for CP affected children’s feeding

Ice breakers were brilliant

Being invited to attain the training was appreciated by the participants

Feeding training sessions

Encouragement and hope attained as training progressed showed caregiver had support and were not alone

Use of locally available materials to create play toys and role play

Feed backing session was very educative

Roll play despite differences in work and roles

Hands-on especially on the positioning of Cerebral palsy children

What did not go well during the training?/Challenges

Poor time management by participants

Language barriers especially when it came to role play

Luganda manuals in Luganda challenging for caregivers to read as much as they spoke and understood Luganda.

First-time use of kits for some caregivers to use during training

Inability to read for some of the community members or caregivers

Evaluation forms were challenging to answer and conceptualize

Module two is very challenging and the need or emphasis for further training on it specifically

Best practices shared and learned during training

• Learned better ways of working with children living with Cerebral Palsy children
• Learned better ways to handle stigma and fear of children living with Cerebral Palsy.
• Learnt child protection guidelines specifically for children living with cerebral palsy
• Attained positioning techniques for handling and caring for children with cerebral palsy
• Practicing patient handling  children with cerebral palsy
• Attained skills in feeding and supporting techniques
• Attained skill in capacitating communities to fight stigma
• Created a team to support and handle cerebral palsy in the communities

Recommended applicable ways to implement the CP project

Use empowerment process where we build capacities of communities and caretakers for sustainability and continuity of the project.

 Keep focused on children and families specifically leaving with the condition while using targeted needs-based assistance.

As an implementing organization takes positive and negative criticism as a learning and stepping stone to the growth of the project.

Staff attaining skills in basic counseling that are key in working and handling beneficiaries living and those affected by the condition.

Use of locally available materials that are readily available to implement cerebral palsy programming and create play materials for children

Pictorial representation of activity training conducted photos @ Dr harriet#.

All participants were given knowledge and guidance on how to use the training guide in relation to the attached training aid. We were also enlightened on the age bracket under consideration by Ubuntu which was 4 years below but still guidance was given that there was another packed program for children between 5 to17 years. Activities geared towards developmental milestones were disseminated. Pretest and posttest were taken and results are yet to be shared by the Ubuntu Team. Tips and resources were shared plus at the end of the training, we perused through what seemed to be working well, challenges that in turn would be used for building plans for monitoring and evaluation.