The parent, child and family support programme encompasses a number of projects which assist with various levels of support.
PARENT SUPPORTING PARENT PROGRAMME - (Only available in some divisions)
Having a child diagnosed with cancer is one of the most traumatic events that can happen to a family. It is therefore essential that contact with other parents who have been through a similar experience is established. The programme comprises parents who, not only have experienced the journey of a child with cancer, but are trained by the CHOC Social Worker to support the parents of a newly diagnosed child. The parents are supported in such a way that they never feel that they are alone and that they are able meet with others who can provide guidance and support on a regular basis. If possible and appropriate, CHOC organises for parents and children to meet survivors of childhood cancer. A measure of CHOC’s effectiveness is that many parents, who received emotional and practical support during their difficult ordeal, are today volunteers supporting parents with newly diagnosed children.
PROVISION OF INFORMATION
When a child is diagnosed, the family faces an array of new medical terms and challenges. It is vital that parents understand the many aspects of the illness and treatment, as well as the experiences they may face and have to cope with during the treatment process. By equipping families with as much information as possible, they are better able to understand and manage the issues that lie ahead. CHOC’s social workers and social auxiliary workers endeavour to provide information material in a language and format which is readily understandable to parents and is appropriate to their cultural and educational backgrounds. A standard, parent manual is given to all parents upon their child’s diagnosis. Specifics of the treatment centre are provided which include covering the location of hospital facilities, procedures for attending clinics and other important facts.
Entering into the hospital environment can be a difficult experience for many families and one for which they are usually unprepared. Upon admission, each child received a ‘Care Bag’ which contains personal necessities such as toiletries, books and toys. If necessary, CHOC also provides basic foodstuffs for families in need.
With many children having to travel long distances to the hospital to receive treatment, the costs involved can place a major financial burden on many families. In order to achieve a good prognosis for cure, it is essential that the child returns for treatment when scheduled and completes the entire course. CHOC’s transport fund is aimed at ensuring that no child is precluded from attending treatment centres due to a lack of money for transport. This support also prevents the early abandonment of treatment.
Families experience emotional and practical stresses after diagnosis and throughout the treatment process. Social workers provide an essential professional service in supporting parents and families. Services in public hospitals are under-resourced and not available to provide ongoing support to parents. In some treatment centres a CHOC-funded paediatric oncology social worker has been appointed who provides ongoing support to the child and family. The social workers are able to interact with families in their home language and understand their social and cultural backgrounds as well as work closely with medical and nursing staff in treatment centres. Their services are also available telephonically to families after they return home.
Even with a good prognosis for cure, there are still a significant number of children who die. Going through the process of the death of a child is very traumatic. The social workers are there to guide and support them through this difficult time.
During and after the death of a child, CHOC offers psycho-social, practical and financial to the parents and family. Remembrance services are held annually, during which bereaved families can participate in honouring the memory of their lost child. No family is left unsupported at the time of bereavement.
Children with cancer miss significant amounts of schooling, due to treatment and/or vulnerability to infection. It is important that school staff and fellow pupils are informed about the pupil’s illness, their vulnerabilities, capabilities and the constraints to their activities. CHOC provides information to educators and assists the child with the transition back to mainstream schooling.
With frequent visits to treatment centres, children lose out on many of the day to day activities of being a child. To compensate for this, parties and outings are arranged by CHOC staff and volunteers for the children, to enable them to be taken out of the hospital environment occasionally. Celebration of children’s birthdays has a positive effect on them as has recreational camps both of which are provided and funded by CHOC.
For more information visit www.justfootprints.co.za