Working at Care Centres for Individuals with Cerebral Palsy
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Background to Hambisela Program
Hambisela (meaning “to move forward” or “to make progress”) is a project of the Cerebral Palsy Association (Eastern Cape). The project originated in 2006 in response to a need of the parents and primary caregivers of individuals with Cerebral Palsy for knowledge on how to care for these individuals in a therapeutic way. As the Hambisela project was designed to always be needs based, a training program called “Getting to know Cerebral Palsy” was designed to answer this need.
The therapists at Hambisela started using this training program to train parents and lay caregivers at care centres in several aspects of caring for individuals with Cerebral Palsy. The training is done in a group setting over several sessions, and includes picture discussions, role play and practical activities to consolidate learning.
It was found that the participants were not completely identifying with the content, and thus the Narrative Version of the training program was developed and launched in 2012. This version included a story of a mother and her baby with Cerebral Palsy living in a rural village in South Africa and their experiences are interwoven in all the modules of the training program. The parents and caregivers were found to identify more with the story instead of only “academic” content, and they started sharing their own stories, frustrations, fears and joys with more ease within the group sessions.
Another need started to emerge. A great number of children, teenagers and adults with Cerebral Palsy are attending day care centres, or are living in residential centres. Most of these centres in South Africa are run on a very small budget and can therefore not afford to appoint therapists. Many of the managers and caregivers have very little or no experience in dealing with Cerebral Palsy. Furthermore many of these centres do not have the correct positioning equipment (or the knowledge on how to use them) in place for their residents/attendees for effective postural management. The Hambisela Care Centre Program was developed to integrate Hambisela caregiver training with other development support interventions, to address some of the challenges faced by these care centres.
The first three stages of the model are grouped together as the Assessment phase. This includes completing a gap analysis with management, caregiver interviews and individual screening of the children/teenagers/adults.
This is an analysis of the care centre and the running thereof in order to identify any gaps there may be. The objective of this analysis is to identify the priorities for intervention at each centre and also to assist management in the future planning for their centre.
The gap analysis can be adapted depending on the context of the centre. The original gap analysis used by the Hambisela program was developed based on the requirements for registration of a care centre set up by the Department of Social Development of the Eastern Cape. However, this particular template would not be relevant to other countries, or even other provinces within South Africa.
Each organisation/individual working at similar care centres can set up their own template to work from. Please follow the link below to access an example of a gap analysis that can be used as a base for developing your own in line with your own country’s requirements.
Interviews are then conducted with all the caregivers at the participating centres to ascertain their training needs, as well as to understand their general frame of mind. The questions used are centred on their likes, dislikes and challenges of the job, their personal training needs and previous training, their motivation for working with children with Cerebral Palsy and their coping mechanisms. They are also asked to comment on their perceptions of the needs of the centre.
Some of the questions that could be included in the interviews include:
- How long have you been working here?
- Why did you apply for the post?
- What are the things you like most about the job?
- What are the things you dislike about the job?
- What are the challenges you face in the job?
- What are the areas you feel you still need more knowledge/skills in?
- What do you feel is the centre’s biggest need?
- Have you received any training to assist you in your job, e.g. the Hambisela caregiver training?
- Do you think that training specific to your job as a caregiver in a care centre would benefit you?
- Are there some children in your care that you find it difficult to play with? And would you benefit from some stimulation ideas?
- Working with children with disabilities can become very stressful, draining or even depressing. Have you ever experienced any of the above?
- What do you do to cope with these emotions?
The interviews are either conducted individually or in a group setting, depending on the dynamics at the centre. The information obtained is then used to develop a training needs list for each centre, which in turn informs our choice of training sessions. It also greatly assists in building relationships with the caregivers at the centres.
To get a baseline understanding of the clients, each client is briefly assessed on the following aspects:
- Gross Motor Functioning
- Fine Motor Functioning
- Overall Independence
- Equipment Needs
- Referral Needs
The findings are recorded on an assessment sheet derived from the ICF Framework and include the child’s classification according to the Gross Motor Function Classification Scale (GMFCS), Manual Ability classification Scale (MACS), Communication Function Classification Scale (CFCS) and Functional Communication Classification Scale (FCCS). A short summary of each client’s functioning, goals and intervention is also recorded and updated throughout the intervention process.
All the information gathered during the Assessment phase is then used to inform the priorities of the Intervention Phase. This includes provision of equipment and positioning, training assistance, assistance with daily programs and individual intervention.
Equipment and Positioning
According to the Guidelines on the Provision of Manual Wheelchairs in Less Resourced Settings , an appropriate wheelchair (or in the case of this model, other positioning device) can have a number of positive effects on the user if they are individually fitted properly into the specific device. This can include improved skin integrity, reduction in secondary complications such as contractures and deformities and higher activity levels and community participation. Proper postural support can also positively influence head, trunk and upper limb control. Postural management must thus form the basis of intervention for clients with Cerebral Palsy.
All the clients are assessed for their equipment needs, and the relevant procedures are followed to order the necessary devices. These can include (among others) wheelchairs, posture chairs, standing frames and sidelyers. Unfortunately not all countries or areas have the facilities available to order devices. In these cases, the therapist can make use of the positioning principles discussed in Module 2 (Positioning) of the Hambisela Training Course to correctly position the clients. The therapist can also make use of low cost alternatives to assist in this regard. Please see Part 3 of Disabled Village Children for some ideas.
However, it is our duty as therapists working in the field to advocate for the availability of the correct positioning and mobility devices for our clients. This is by no means an easy task, but local governments and even international aid organisation should be made aware of the needs of people with disabilities within specific areas. Sometimes it is up to the therapists or community healthcare workers to be creative and to spearhead projects that could lead to the funding of assistive devices.
Furthermore, it is very important that the caregiver/parent is trained in the use of the child’s device, as well as in the basic principles of positioning. The clients’ positioning in their devices must also be reviewed and adjusted as necessary at least every six months, and pictures of the correct positioning can be used to produce positioning programs for each client. The programs must be devised in such a way that the caregivers can easily refer back to them to assist with positioning the clients correctly.
Lastly, when providing equipment, it is always important to keep the sustainability and maintenance of the devices in mind. Thus the therapist must either establish links with local organisations that can assist in this regard, or train some of the caregivers or auxiliary workers at the centres to perform these duties themselves.
In cooperation with management, appropriate topics can then be chosen from the training needs list (set up after the caregiver interviews), and the therapist can then present training to the caregivers on these topics. This can include, but is not restricted to the Hambisela “Getting to know Cerebral Palsy” training program. Other topics that might be appropriate are back care, safe transfers and practical sessions on positioning and feeding.
It is important for the clients to participate in a variety of activities throughout the day. Where daily programs are already in place, the therapist can assist with reviewing the program and the implementation thereof. Where there are no programs in place the therapist can assist in developing one and introducing it to the centre and the caregivers. Activities that can be included in the daily programs include singing, story time and participation in group activities. Specific groups e.g. hand function, visual perception and sensory stimulation groups could also be added by the therapist.
The individual intervention in this model is very basic, as the purpose is general upliftment of the centre. The therapist will firstly focus on each client’s postural management (including a positioning program and appropriate equipment if necessary) and on making sure that the client is referred to the appropriate health professionals within the area. Clients can also be identified to be included in specific group activities, and selected individuals can receive stretching programs - especially if their decreased range of motion affects their ability to safely and comfortably use a positioning device.
As the priorities of intervention change throughout the lifespan of an individual with Cerebral Palsy, the Hambisela Care Centre model of intervention has proven to be very helpful. It naturally highlights the specific needs of the individual, family and the centre at that moment in time and makes it much easier to plan for the future. It also makes it much easier to measure progress, as goals are set for each step of the intervention.
The management of clients with Cerebral Palsy is a very complex process and it is often difficult to know where to begin. The Hambisela Care Centre model of intervention aims to simplify this process by guiding therapists in the development of their intervention at care centres, always striving towards excellence in therapy for Cerebral Palsy.
- Guidelines on the Provision of Manual Wheelchairs in Less-resourced Settings [Internet]. World Health Organization. 2016 [cited 29 August 2016]. Available from: http://www.who.int/disabilities/publications/technology/wheelchairguidelines/en/