CHOC Childhood Cancer Foundation South Africa

Support Programmes of CHOC

Introduction

There 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:

Parent, Child and Family Support

Childhood 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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