CHOC Childhood Cancer Foundation South Africa |
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Support Programmes of CHOC |
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IntroductionThere are many areas in which we provide support for both the child and the affected families. These are briefly described below, grouped into the major objectives of the activities. Not all of these programmes are in place in all areas of the country. The parent groups in the different regions have been in existence for varying periods of time, and not all have developed the same level of capability as yet. The intention is to raise the support provided to the children and families to a uniform level across the country. In accordance with internationally recognised standards and practice, most children with cancer are treated at one of the several specialised treatment centres in South Africa for childhood cancer, which are in academic or tertiary government hospitals). We focus a lot of our attention on ensuring that these centres are able to provide a high level of treatment for all the children, together with holistic support for all the members of the affected families. The main areas of our support programmes are:
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Parent, Child and Family SupportChildhood
Cancer affects not just the child, but also the whole family.
For
the child, it means several years of coping with treatment such as
chemotherapy, radiation and maybe surgery, with their often unpleasant
side effects. For
the parents, it can mean major changes to their lifestyles, and many
additional stresses on them. Apart
from the emotional upheaval caused by the diagnosis, there are many
practical and financial issues that they will need to deal with over a
period of probably several years. For
the siblings of the sick child, it can seem as if they are forgotten, and
all of the family’s attention is focused on the ill child.
For grandparents, other relatives, and friends, they wonder what
they can do to help their loved ones through this period.
One
of the primary aims of CHOC is to help to support the whole family through
what will be one of the most difficult and traumatic periods of their
lives. Some of the ways in
which we have set out to help are outlined below.
Support
groups:
Organising of discussion / lecture meetings for parents.
Helping parents to meet other parents (and survivors).
Information
provision:
Parents and children are faced with a whole new world, with
specialised medical terminology, large hospitals, and many new things to
learn that affect their child. We
aim to provide Information Packs and books for parents, with a combination
of: local information about the hospital and the surrounding area; medical
information, about the illness, and the drugs used; and psychosocial and
practical information, on how to cope with the many new stresses and
challenges faced. We also aim
to have, in each centre, a comprehensive library of books, etc for the
parents, and to produce informative newsletters. Practical
support:
For new patients and families, a friendly face who understands what
they are going through can help to make them feel less alone in the new
hospital environment. For
some of the children, wigs and wheelchairs can make their lives much
easier. Transport
Funds:
When a child from a remote area is referred to one of the
specialised treatment centres, the family have even more of a disruption
to their lives. Added to all
of the other issues, they have to find the money to bring the child long
distances back to the hospital for ongoing treatment.
Sometimes this can present major problems, especially to those from
a disadvantaged background, and we try to ensure that a child is not
prevented from completing its treatment by financial constraints on the
family. Parent
counsellor / consultant:
In some hospitals, we fund a person in the treatment centres to
support parents, provide explanations, counselling, follow up, etc.
This is especially important to those who are less well educated,
or are not familiar with hospitals and medical treatments.
Bereavement support: We try to provide whatever support we can during the period of bereavement. This includes moral and sometimes material support for families before, during and after bereavement. In some places, we provide facilities (such as a car, phone, etc) and support to a volunteer or other persons to provide this service, and we train people to provide bereavement counselling. We also organise annual bereavement services, as well as meetings of bereaved parents, siblings etc. Educational
liaison:
The continuity of school life can be an ongoing anchor in a sick
child’s life. We have
sponsored a “back to school project” to provide material for schools
where children have been diagnosed, and people to talk to them if
required. Survivors
groups / support:
Supporting activities of groups of long-term survivors (incl
newsletters). See the web page on
SOLID. Go here. Recreational
support:
Organising for the children to go on camps, outings, parties etc.
Educational
support:
Many long term survivors are educationally disadvantaged because of
the loss of school time during treatment.
Some support for secondary or tertiary education is one way of
ensuring that the survivors are able to fulfil their academic potential.
Parent
Respite:
We
are sometimes able to arrange accommodation etc for parents and families
to have a break away from their homes, which gives them a chance to lead a
more “normal” life for a short period. |
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Ward
Comforts & facilities
The
children (and their parents) will spend long periods, during treatment and
hospitalisation, in the specialist centres for childhood cancer, which are
in the main tertiary hospitals. We
aim to make the environment in these units as “child friendly” a place
as possible. Basic
decorations and furnishings:
such as paint, curtains, duvets, etc TVs,
games, toys, play room:
To make the children’s lives more stimulated and interesting
during their visits. Parent
facilities:
Provision of lounges, laundry, kitchen, Laz-y-boys, etc in the
hospital for parents.
Volunteer
programme in hospitals:
In the hospitals, we are fortunate to have dedicated volunteers who
work and play with the children. We
provide the materials used, plus other costs of volunteers, including
specialised training of the volunteers.
Support staff in wards: We employ some staff to assist in the treatment centres, such as a toy bank supervisor, play therapist, "ward mother". The aim is to make the time in hospital of the children and their parents less traumatic and stressful, and to ease some of the load on the medical and nursing staff. |
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Medical
/ Hospital Equipment
Although
the government hospitals should in theory provide all of the medical
equipment and facilities required for the treatment, in practice, for
budgetary reasons, this is often not the case in many institutions. We have, where necessary, provided important equipment and
facilities to supplement that provided by the hospital.
This has included such items as volume infusion pumps (used for giving chemotherapy to the children at a very controlled rate), monitors, beds, and other equipment. |
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CHOC
Houses
With
the children being treated at the specialist centres in major cities, many
families need to travel long distances from home for treatment, often for
extended periods. To assist
them, we have opened establishments to provide a “home from home” for
such families. These are
currently in Johannesburg, Durban, Cape Town (Tygerberg) and Bloemfontein,
and it is hoped in due course to have ones associated with all the
treatment centres. For these Houses, there is the initial capital cost (of purchase and modification, furnishing, etc), and then the ongoing costs to maintain and run the houses, feed the occupants, etc. For more details of the current CHOC Houses, see the page on this web site. Go here. |
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Support
and Funding for Medical Staff
Being
part of the public sector hospitals, the medical and nursing staff have
limited access to funds to attend conferences and meetings, or purchase
books and journals, etc. We
have provided some support to assist them in this area. We have also supported training courses for various staff, some of which have been registered for CPD points. The
specialist treatment centres are under-resourced by generally accepted
standards, and the childhood cancer units are regarded as one of the most
emotionally stressful places for a doctor or nurse to work. It is our long-term aim to be able to provide funding to
supplement the existing staff (as is done in many countries, such as the
UK, by various charitable organisations).
This would potentially cover the range of staff in the units, including doctors, nurses, social workers / psychologists, and support staff for clerical, data capture or research work. |
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National
Programmes
Most of the previously mentioned activities are focused on the children and their families, and all are carried out at the various treatment centres around the country. There are some activities which happen at a national level, since they affect all of the country equally. These include: Auxiliary
Social
Workers: The psychosocial support for the
children and their families is recognised as one aspect that can make a
great difference to the family, in helping them to cope with the many
stresses that they encounter once their child has been diagnosed with
cancer. Social workers can play a key role
in providing this support, but unfortunately there are too few of them in
the government hospitals, and there are many other demands on their time.
We have embarked on a project to develop training courses for
“auxiliary social workers” in childhood cancer.
They will undergo a period of formal, supervised training, and who
will work under the supervision of a trained and qualified social worker.
These staff would be able to provide first line support for the
parents and families, especially for those from less advantaged
backgrounds, and will take a great load off the medical and nursing staff
in the treatment centres. The first people will start being trained under this project in early 2005. Warning
Signs Project:
Some 700 children are diagnosed each year with cancer, but this is
estimated to be less than half of the number that actually develop the
illnesses. Of those that are
diagnosed, many of them only appear for treatment at late stages of the
illness, with a poorer prognosis for successful treatment.
The local specialist paediatric oncologists in the SA Children’s
Cancer Study Group developed a set of warning signs for childhood cancer,
which have also been adopted internationally.
CHOC supported the printing of posters, and travel by one of the
medical consultants, to get these warning signs disseminated into primary
health care clinics, and make the staff there aware of the symptoms, so
that all the children can be diagnosed early enough for effective
treatment. See the page on this web
site for more details. Go here. Registry
project:
Reliable statistics on childhood cancer are essential for ensuring
that adequate capacity exists for treatment.
We have provided some funding to assist the SACCSG in the
collection of the data for some of the centres in the country, to aim to
improve the quality and completeness of the information available.
Back-to-school
project:
This sponsored the development of material to facilitate the return
of children to school, after periods of treatment. Advocacy: in order to try to ensure that
the policies of government, medical aids, etc are in place and appropriate
to provide the best treatment possible for all children with cancer.
Local
conferences and meetings:
We have organised national conferences (in 1997, 2000, 2003,
and 2005) to
enable parents, and the medical, nursing and other staff involved in the
treatment and support of the children, to come together, share experiences
and learn from each other. Another
conference is
tentatively planned for
early 2008.
International
connections and conferences:
CHOC is a member of the International Confederation of Childhood
Cancer Parent Organisations (ICCCPO), which brings together similar parent
groups from around the world. From our involvement, our attendance at their conferences,
and the election of members of CHOC to their Executive Committee, we have
learned many things of practical benefit regarding the operation of parent
organisations such as ourselves, and have contributed to them a better
understanding of the specific problems in developing countries.
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