This project to train mothers, caregivers and rehabilitation staff at the remote Malamulele Hospital and its satellite clinics in Limpopo has been successfully completed and has ensured that disabled children from disadvantaged communities receive the rehabilitative therapies that they urgently need.

The project received an instalment of R107 475 from SASIX on 8 June 2007. The full cost of the project (not including the SASIX administration, monitoring and evaluation fee) is R214 068, with R106 593 still outstanding.

Implementation of project activities to date

All the activities have been carried out as planned:

Project expenditure to date

Please note that the project budget reconciliation below is a provisional one only. It still needs to be finalized and submitted to the treasurer and the auditor. A number of expenses that incurred have not yet been claimed and there are budget items which have not yet been procured. These include augmentative communication equipment as well as equipment for use at Malamulele Hospital and Mhinga. Plans are in place to obtain the outstanding equipment and the financial statement will be finalized within the next two months.

Beneficiaries of the project

53 children and 53 caregivers were direct beneficiaries of the therapy intervention.

The local rehabilitation staff who were also direct beneficiaries were:

• occupational therapist
• physiotherapists
• occupational therapy assistants
• community-based rehabilitation workers.

Indirect beneficiaries included the families and neighbours of the children involved in the project.

Challenges faced in implementation

Three major challenges arose and were overcome as described below. The second challenge arose from the success of the intervention, in that double the number of children expected actually arrived for treatment!

• Transport of equipment to the child’s home

The hospital management had agreed to transport the equipment issued to each child’s home. However, this was not done for all the children and on our return visit in February 2007, we found that there were still standing frames in the corridors outside the therapy department. This was brought to the attention of the hospital management who once again undertook to see that the equipment was delivered home. There appears to have been miscommunication between the transport department and the therapists.

• Screening of children needed to have been done more thoroughly

Only two days were set aside for the screening visit. As there were three therapists involved in the screening and assessment, it was anticipated that fifteen children could be assessed each day, as this was roughly the number of children seen the previous year. We were not prepared for the fact that double the number of children arrived – by word of mouth and through the local therapists, mothers heard about the project and wanted their children to be included in the 2007 visit. Some of the children were even unknown to the local therapy staff.

As a result of so many more children than expected arriving, the screening and assessment could not be done as thoroughly as we would have liked. We have learnt from this experience that more time needs to be allocated to the screening and assessment visit and this will be rectified in the planning of future outreach visits.

• More volunteers needed to assist with non-therapy related tasks during the therapy intervention week

The volunteer therapists spent a great deal of time during the intervention week doing non-therapy related tasks which could have been done by unskilled volunteers. These tasks included sewing and producing equipment from cardboard, such as specialized chairs. In future projects, more non-therapy volunteers or young community service therapists will be recruited to assist with these non-therapy tasks. This will allow the therapists to spend more time doing actual “hands on” therapy.

Monitoring and evaluation

The following steps were taken to monitor and evaluate the project:

The evaluation concluded that the project impacted on different groups of people in numerous ways. It is best to summarize these impacts in the words of the beneficiaries themselves:

i. The children themselves showed functional improvements:

“I am mother of Lovemore and I got assistance. I started being trained in December and I got assistance. Lovemore was unable to move around his neck hence it was not possible to take him along to church. Since provided with the Shonabuggy I am able to go with him using Shonabuggy, so I got assistance and I wish the team could assist us in going further. “

“I am mother of Matimba. Firstly I want to thank the team for what they did for us, because Matimba was not able to do anything when they first started working with her. Matimba could not sit, Matimba could not handle anything but currently Matimba can, since she was treated. The therapists stretched her and also gave her an electric wheelchair which I could not afford to buy. Presently Matimba is able to drive herself - at the beginning she was not able to do anything. “

“I am Grace Maluleke, I felt sad to hear that the therapy team is leaving because Hlulekani was unable to do anything. She used to be sleeping on her stomach, and her hand was bent and not able to balance and also the left hand and leg. However she is trying on daily basis. The therapy team assisted me so much - maybe her contractures could be stretched and she could walk properly.”

“I am Grace Mathonsi, mother of Tiyani Mathonsi. When I joined these people after hearing about this project that they are running I found assistance for my child because he has changed in so many ways and things. My child is now able to walk and talk, although pronunciation is not good. They taught me sign language, hence I am able to communicate with him in sign language, and he is able to communicate back to me using sign language and they taught him and even others are succeeding and thanks a lot.”

“I am Lorraine Khosa mother of Freedom Maluleke, I would like to thank the therapy team for coming here. Even my child was one of those who could not sit, he also didn’t like walking but presently he likes walking so much. His hand was not able to do anything but presently he is able to hold. And the leg of my child was unable to stand still but I am grateful because presently it is better than the way he used to stand. We are grateful for what they did for us, because they assisted us with playing toys and clothes. “

“I am Rose Mabasa mother of Venus Maluleke. I observe assistance for Venus Maluleke after working together with the therapy team from Malamulele and here at Mhinga where they come. They treat her in many ways, and all that they do assist her because she was unable to kneel, presently she can kneel, and my child couldn’t crawl. And the wheelchair they provided is assisting together with the standing frame. I observe that all they did is assisting her up to the present moment. I am saying they proceed with all they are teaching her. All that they teach, I remain teaching her also and myself when I train her to do as they taught. When asleep, my child could not turn over but now she is able to roll over, she is able to wake up and sit, but previously she was unable to do all that.”

“I am Ester Rikhotso, mother of Wiseman Chauke. I found help because Wiseman was not able to turn over. He was unable to play but after the therapy team came I observed a change and he was able to look around. Before, he was unable to roll by himself, but after the therapy team came, he is able to play.”

“I am mother to Akani Maxava, my name is Gertrude, and I come from Magomani, under Xikundu Village. Akani Maxava was having a problem, as he was unable to sit. Akani started to have lot of changes just after the therapy team started coming here. There have been lot of changes regarding Akani Maxava - learning to stand up, learning how to sleep and roll over. He was not able to roll over but he can now do that. He now enjoys drinking water on his own as well as feeding himself, even to brush his teeth he can do, even to take off his own T-shirt Akani Maxava can do. Even going to the toilet Akani is able to do so. Even walking on his own, he now has balance that I didn’t believe he would have - he can balance on his own without support. He is able to walk - he can walk for a long time on his own without support.”

ii. The caregivers felt empowered and affirmed as illustrated by this quote from one of the parents:

“Because of the love and respect we had from the therapists, we now love our children more. My child is now enjoying to play and is also noticing my love for him. The project encouraged me to accept myself and my child and built up my self esteem. I really appreciate what I get from the therapists and their respect for parents and children. Thank-you.”

iii. The neighbours and community: The attention and the equipment that the child received had an impact on the neighbours and community members. As one mother described:

“At first my child’s’ condition was not easy or acceptable, but now things have changed. He is now loved and accepted by my neighbours and friends. I thank the therapy team for their hard work and for providing us with equipment so that we can make progress. My in-laws disliked my child at first, but now they have turned around to assist me.”

The impact on the surrounding neighbours was also described by Anne Recordon, independent paediatric therapist from New Zealand, who visited some of the children in their homes in April 2007. This visit provided an independent evaluation of the project. Quoting from her report:

“It became apparent to me that the delivery of equipment for the child with disability in the household elevated the status of that child in the parents’ and the villagers’ eyes. Inquisitive visitors appeared at all the houses and huts we visited. Fathers, mothers and relatives interacted with us and their children. The parents were so appreciative of the care and attention given to their disabled children. Most took on board the information regarding integration of the therapy management into the child’s daily routine, so bright blue wedges, yellow benches, ankle splints and brand new shoes were shown to us. The use of this equipment had raised the importance of the child and their routine in the eyes of the family members.”

iv. The local rehabilitation staff. The rehabilitation staff at Malamulele Onward were asked to complete an anonymous questionnaire on what the project had meant to them.

“I am more at ease with children with cerebral palsy whereas at first, an element of fear was present. I was also not free because I often did not where to start. It is an exciting programme which show you exactly what to do with a CP child. The way you start your session; how to involve the caregiver and the assistive devices you can make for a child with CP.”

“As a community rehabilitation worker, I was mostly impressed with the way therapists were able to treat each child according to their impairment. To me it was a continuous learning curve. Hope to see them again.”

v. The project also had a powerful impact on the therapists who volunteered their time and expertise. Quoting from their report:

“I have grown so much since being involved with Malamulele Onward – in skills, parent involvement and working with other therapists. I feel more confident in identifying realistic aims and how to get there.”

“I learnt a fortune. I enjoyed the vibe and the importance and relevance of the week. I felt like I made a difference and I had fun.”

Conclusions

The project is really making a difference and provides an example of innovative best practice in this field. Comments from the caregivers during the focus group discussion revealed the enormous difference the project made to the lives of children, their caregivers and the extended family.

Malamulele Onward will extend this model of training caregivers and providing therapy and equipment to children with cerebral palsy living in other disadvantaged areas in South Africa. Two projects are planned for 2007 – one to Dilokong Hospital in the Sekhukene region of Limpopo and one to the Butterworth area of the Amathole health district in the Eastern Cape.

This model of providing services remains dependent on donor funding and therapists being willing to donate their time. Funding will be sourced from local and international funders, and this includes an application to SASIX and GreaterGood South Africa