Mrs Joyce Atta is the mother of a six-year-old girl with
Cerebral Palsy, I met Joyce online via facebook on a platform called Cerebral
Palsy family network, Joyce’s daughter had been displayed as a hero of the day,
the writings accompanying the girl’s picture was what attracted me to engage in
an online chat.
Joyce is a Ghanaian living in Kumasi, in the Ashanti region.
She was asking on the network how to deal with certain issues relating to her
daughter’s condition. It said: “My daughter is a six-year-old with cerebral
palsy, she gives the warmest smile but she has convulsed several times, any
suggestions on how I deal with that.”
There were several suggestions but many patrons of the
network also asked whether she does physiotherapy and can access physiotherapy.
I exchanged contacts with Joyce and we started a chat. Joyce
works with a government organization in Kumasi and lives almost at the
outskirts of the city. She has three other children; her husband also works
with an organization that demands that he travels a lot to other parts of the
country to distribute his company’s products.
In a conversation with Joyce, I got a feeling that she is
tired of going for physiotherapy every week. “I have to ask for permission one
day every week to attend physiotherapy with my daughter. I have been doing this
for years and haven’t noticed any improvement in her.
“Besides, it is very stressful accessing the physiotherapy
services, I have to carry my daughter on my back; we board about three vehicles
to get to the hospital and by the time we get there, my daughter is already
tired and does not cooperate with the physiotherapist at all.”
I suggested a home physiotherapy and her question was, “but
how?” I then began to explain that there are resources available on line where
parents can learn basic physiotherapy and work with their Cerebral Palsy
children to achieve some developmental milestones.
Even getting the children to sit for a while takes some
effort, I suggested that even if she does not have the equipment, she could
improvise. For example, lining a carton box with blanket and placing the child
in a sitting position is physiotherapy and with time the child could be sitting
on his/her own.
Joyce thanked me after sharing tit bits of basic
physiotherapy and encouraging her to be trying it at home instead of just
giving up on her daughter. I could feel a glimmer of hope in her voice as we
ended the conversation.
Truth is, Ghana lacks adequate physiotherapy systems, and
parents are pushed to become frustrated with the system to the extent where
they give up. In fact, sometimes having a child with Cerebral Palsy literally
means that you just ended your normal life.
Parents, especially mothers, are no longer able to work in
the official setting any more. Many mothers out of frustration are forced to
abandon their Cerebral Palsy children to their fate – as one mother said, “it
is just too difficult.”
That is why I laud the Community-based parents training for
children with Cerebral Palsy initiative. Under the programme the Christian
Blind Movement (CBM) through their implementing partners, the Presbyterian
Church of Ghana, in collaboration with the International Centre for Evidence in
Disability of the London School of Hygiene and Tropical Medicine and the
University of Ghana (UG), has initiated a research to evaluate the impact of a
community-based parent training programme for children with Cerebral Palsy in
Ghana.
The project uses a manual titled: “Getting to know Cerebral
Palsy” promotes working with groups of parent/caregiver of children with
cerebral palsy aims to increase knowledge and skills in caring for a child with
cerebral palsy. It promotes a participatory learning approach with an emphasis
on the empowerment of parents and caregivers.
Under the project, a group of physiotherapists, speech
therapists, nutritionists and other health professionals organize a monthly
meeting of one hour with communities and parents with children who have
cerebral palsy.
At the meeting basic physiotherapy techniques are taught and
parents are encouraged to ask questions. The community together with the
parents sets goals of achieving the various developmental milestones for the
children.
The Physiotherapist further does a home visit of 45 minutes
to look up the children with cerebral palsy and work through their various
therapies, encouraging parents to be doing it with the children all the time,
even when the physiotherapist is not around.
Mrs Maria Zuurmond, a Research Fellow at the London School
of Hygiene, who is part of the team implanting the project, shares how mothers
get hearty knowing that even holding their children in the right position does
a lot to improve the child’s overall development.
Mrs Sandra Cassermer, a paediatric physiotherapist at the
Korle Bu teaching hospital who is part of the team implementing this project,
shares her experience of how parents express joy and happiness knowing that
they can have physiotherapy at home with their children.
Mrs Hannah Awadzi, Initiator of the Special Mothers Project
in Ghana, a project that seeks to encourage mothers of children with Cerebral
Palsy while creating awareness on the condition, is advocating for a home physiotherapy
service in Ghana.
Mrs Awadzi believes that parents need to be very much
involved in physiotherapy and make it part of their lives. She says parents can
learn the basic physiotherapy techniques and see the specialist once in a while
to assess the progress on the child.
Home physiotherapy is possible!
