Therapists, parents and caregivers are in the front-line of caring for individuals affected by cerebral palsy, and of assisting with their treatment. Historically, individuals in rural and under-developed areas have had no or limited access to regular therapy and training to assist them with skills development. This very often compromised the level of primary care and therapy that individuals with cerebral palsy could obtain in these areas. Experience has shown that a 1-hour session a month is very unlikely to benefit a child’s development, unless there is very good carry-over to the home environment where the child spends the other 700 hours of the month with the family and/or caregiver(s). If the child can be handled and positioned on a daily basis in a beneficial and therapeutic way, it could have a greater impact on the development of that child than a monthly therapy session can.
To address this problem – and to improve the level of daily care available to individuals affected by cerebral palsy, especially in rural and under-developed areas – the Cerebral Palsy Association (Eastern Cape) identified a need to transfer skills to parents and caregivers in the following ways:
- Develop training programmes in basic therapeutically-correct skills used in everyday activities for parents and primary caregivers of individuals affected by cerebral palsy;
- Present these training courses to parents and primary caregivers;
- Present group facilitation / “train-the-trainer” workshops to empower facilitators to present these groups in a manner based on adult education principles. Training facilitators from local communities will help to transfer skills into the communities.
- Develop community-based support structures to support parents and caregivers within their local communities.
- Support community-based therapists with specialised skills for the management of cerebral palsy.
- Further development of the pool of specialised therapeutic skills relevant to the treatment of individuals affected by cerebral palsy.
In 2005 the Cerebral Palsy Association initiated the Hambisela project as a Centre of Excellence in Therapy for Cerebral Palsy, to develop and promote excellence in therapy for cerebral palsy through community-based programmes.
In 2008, Hambisela completed a series of seven training modules in the “Getting to know Cerebral Palsy” series, which are successfully used for training of caregivers. These modules include introduction (what is CP?), evaluating your child (basic steps in normal development), positioning your child, communication, everyday activities, feeding and play.
Responding to a need for a more effective communication method for rural African communities, Hambisela introduced a storyline element to the content of the modules, in the revision of the original materials into this ‘Narrative Version”. The series essentially includes the original content (with some revision and consolidation), but presented in six modules against the background of a story of the experience of a family in a village community. Stories help people to remember information better and we hope this make carry-over of information easier. We also experienced that caregivers often relate to the stories and this helps them to feel more open about sharing their own stories.
Aims of the Project
The overall objective of the Hambisela project is to empower and develop the skills of therapists, parents and caregivers of children with cerebral palsy in the community.
The series aims to:
- Enable therapists, families and caregivers to provide a basic level of beneficial, therapeutic, ongoing care for their child affected by cerebral palsy
- Enhance their understanding of cerebral palsy
- Provide opportunities for groups of parents to meet and support each other as they face similar challenges in raising a child with a disability.
The Hambisela training material was developed to follow a participatory approach. Therapists, parents and caregivers are guided to discover the underlying therapeutic principals used, and not attend lectures. In this way they learn and understand why certain ways of handling are suggested. Families and communities can be empowered through this program as their understanding of disability is enhanced.
Overview of the programme
|Introduction to Cerebral Palsy||Topics covered include what is cerebral palsy? How the brain influences movement and posture; what causes cerebral palsy? What does cerebral palsy look like and other problems often found with cerebral palsy|
|Evaluating your child||This module provides advice to help caregivers to understand the importance of correct positioning. Specific practical advice is provided for positioning in lying, sitting and standing.|
|Positioning your child||This module provides advice to help caregivers to understand the importance of correct positioning. Specific practical advice is provided for positioning in lying, sitting and standing.|
|Feeding your child||This module focuses on feeding challenges and specific practical advice is provided in terms of helping with positioning when feeding, feeding practices that helps a child with chewing and swallowing as well as drinking.|
|Communication||This module explores what communication is,why it is so important and what you can do to help a child communicate.|
|Everyday activities||This module looks at how to use everyday activities to help your child with cerebral palsy to develop. Specific practical advice is provided for independent eating, dressing, carrying and back care.|
|Play||Topics include the importance of play for a child’s development and practical guidelines and ideas on how parents/caregivers can encourage their child to play. Information on using simple local resources for play is included.|
Hambisela was not created to replace or usurp already existing health and rehabilitation services, but rather to enhance them, or to provide a service where none previously existed. Maintaining or building links and working with local therapists are prioritised wherever possible
How sessions are normally run
The Cerebral Palsy Association (Eastern Cape) normally provides facilitator training / guidance to ensure that the vision and scope of the Hambisela program are shared, whilst looking at the skills needed to facilitate a group effectively, using adult education principles. For therapists who are unable to attend a facilitator training workshop, online guidance are done to assist in understanding the program and how to use the material to its full potential, which is what we have done.
Access to online resources are also available on the Facebook page.
The Hambisela program includes a range of materials, each designed for specific use in the program:
- Facilitators Manual: This manual is used by a facilitator while s/he is facilitating a group, with instructions and guidance to the facilitator included in the documents. These include instructions for the facilitator about how to use the display material, when to ask questions and encourage discussion, when to explain certain topics as well as role play and other practical activities.
- Resource Manual: This manual contains all the content from the facilitator manual, excluding the facilitator prompts (instructions and suggestions about what the facilitator needs to do, say or use during the presentation of the material). This is usually given to the centre managers if training is done at a carecentre.
- Display pack: All posters used for display purposes during the program. This should be printed as A3 or A4 pages to use during training.
- Parent and Caregiver Manual: A reference distributed to each parent and caregiver as part of the program. The manual contains the condensed content of the modules, mainly through photographs, diagrams, and captions.
- Facilitator Training Manual: This is very important information on basic adult education group training skills, and on the use of the Hambisela course material.