Paediatric Haematology Oncology, Johannesburg Hospital. South Africa
The health care needs of children are significantly different from those of adults.
Childhood is a crucial time of development when attitudes and habits are established.
It is therefore important to have a well-developed team, and a practical working ward philosophy.
The main features of a team approach are:
- to have clear management objectives in order to work as a team
- sharing a common goal, vision and value system
- creating an atmosphere of openness and honesty, which in turn can
- draw support from the formal and informal network systems.
Team strengths
The strength of a team can be identified in the team’s cohesion and adherence to a set of common norms and values. A stable core within the team can play an effective role in team building, which in turn allows growth, and enables conflict and disagreements to be handled constructively. As a result of the already overloaded health service, it is imperative to try and maintain a good staff/patient ratio and relationship.
Ongoing staff development
With regular appraisals and investment in individuals through education, it involves every team member in the decision making process. This encourages leadership experience through project management. Every member of our core team has had the opportunity to attend national and international study days and conferences.
Multidisciplinary team
In order to promote a holistic approach to treatment, one must encourage and provide the structure for a multidisciplinary team approach. It is important to create the awareness of a family orientated view, so as to support active coping strategies and encourage self-support, and provide psychosocial support for all patients
Within our organisation we have: doctors; nurses; physiotherapists; pharmacists; social workers; dieticians; music therapist; child life worker; laboratory staff; radiography; teachers; oral hygienist; volunteers; the parent support group (CHOC); clerical / secretarial staff; religious advisors.
Immuno-compromised children
Everyone has been ill with an infection at one time or other. Healthy people don’t get infection very often, even though bacteria are everywhere. This is because they have enough neutrophils within their body to protect them. Even when a normal child does get an infection, they usually get better quickly with the help of an antibiotic and without having to stay in hospital.
Cancer patients are treated with chemotherapy. Many of the drugs used can cause neutropenia, which means that the neutrophil count in the blood is low and the patient is susceptible to infection.. This necessitates admission to hospital for intravenous antibiotics; the minimum course is 5 days, but can be longer depending on how the body’s blood count recovers.
There are many other reasons for a child to be immuno-compromised, including: aplastic anaemia; immune deficiency and AIDS; and following a transplant, for renal, cardiac, or bone marrow.
Children with cancer
In South Africa it is estimated that there are 800 children diagnosed per annum with some form of cancer. All of these children should only be treated at specialised Paediatric Haematology and Oncology centres, of which there are currently 11 in South Africa. These are: Kalafong, Garankua and Pretoria Academic Hospitals in Pretoria; Red Cross and Tygerberg in Cape Town; Pelanomi and Universitas in Bloemfontein; Addington and King Edward in Durban; and the Johannesburg and Baragwanath Hospitals.
The SIOP recommendations for the organisation of a Paediatric Cancer Unit are given in the Appendix.
Survival
Cure is now possible for the majority of children with cancer. It is estimated that by the year 2000, one in every 1000 young adults will be the survivor of childhood cancer.
The prognosis of children with cancer is certainly a lot brighter today. Most will have good health and a normal life expectancy, thanks to the enormous advances in medical science. This necessitates a change in emphasis of the care of these young patients and their families.
There is an increased need for a multidisciplinary approach to management to include psychosocial support services from the time of diagnosis to ensure maximum quality of life. The provision of adequate information and the development of ongoing support will enable these children to grow and develop in preparation for entry into adult life, and to achieve their full potential.
Patient centred approach
We are a hospital based team with an extremely busy in-patient ward and a heavily loaded out-patient clinic. This is in keeping with world-wide standards; home is the best place for any child to be, and the mother and father are the best team for their child. We put enormous pressure on the shoulders of parents to be caregiver / medicine giver to their child, and we are in the process of developing comprehensive written patient information for the caregivers. As a medical team we offer an open telephone continuous care service, whereby the parent can call and vent her fears / ask questions / seek guidance / clear up any misunderstandings.
With cancer care, it is a hands-on and long-term interaction. Staff are involved in emotional contact at all levels. The treatment programme is long; for example it is a 3 year protocol for the child with leukaemia, and a 2 year programme for the child with Lymphoma, but this depends on the staging of the disease at the time of diagnosis.
Clinical approach
In order to create the right environment for team care we have weekly clinical update meetings. This helps to balance the treatment management by co-ordinating medical, nursing, and psychosocial information concerning the patient. There needs to be constant consideration for improved care, and a total awareness of the importance of laboratory tests. Clear rationalisation as to why admission for intravenous fluids / antibiotic cover is necessary, or why an unscheduled bone marrow aspirate needs to be done must be discussed with the parents and child. With the constant need for intravenous access, due consideration is given as to whether the use of a Hickman line or a portacath is best for the patient in question.
The operating theatre is a daunting place. When surgery is required, the child attends the "preparation for surgery" programme. This programme helps to minimise the fear of theatre and surgery, through role playing what is about to occur.
Psychosocial aims
A comprehensive psychosocial programme should promote positive emotional growth and development, and the maintenance of normal childhood, adolescence and young adulthood.
Support for the child
At their own level of development, children with cancer should be helped to understand their illness and their response to the illness.
Play is the work of children. Many activities are organised by our trained volunteers and occupational therapist. The child life worker brings tremendous joy to those children on long therapy. There are structured and unstructured activities providing psychosocial support throughout the entire treatment programme, including children’s art, baking, television games, computer games and music therapy. The unit also has a well-stocked toy bank and a hospital corner.
Children do not belong in hospitals, they belong in school. The hospital schoolteachers are able to liaise with the child’s school and keep schoolwork up to date.
There is also the opportunity to go away on camps yearly. Rotary clubs in Pretoria and Nelspruit organise the most wonderful camps annually.
At the end of the year there is a festive party when all the little patients are invited together with their siblings and caregivers / parents / grandparents. This is always the highlight of the year; every child receives a present, and the refreshments are supplied by the community.
Parent / family support
Families of children with cancer or life threatening disease face emotional crisis at time of diagnosis. From that point onwards, the illness challenges the relationship between the parents, the relationship among the siblings, and the whole balance of family life. It is therefore important to help the parents understand the need for active treatment and prolonged follow-up.
Parents are hungry for information. In today’s world of information technology one finds that they surf the Internet and bring in reams of information that they have found. Sometimes this information is good, but sometimes it is dangerous, as it is not pertaining exactly to their child’s condition. It is therefore important that the parents are given the correct information regarding the illness and the drugs used in the treatment of their child. We are in the process of developing a much-needed handbook. Parents desperately need the support of the team in every way. Introductions of parents with similar diagnosis help them feel "not alone".
Installing facilities in the wards for making tea/coffee, heating food up in the microwaves or just making porridge for their child, has enhanced support of the parenting role. It has also been made possible for the parent to stay with the child in hospital; this helps the nursing staff enormously and is crucial for the sick child.
With the support of CHOC, our active parent support group, money for transport is available, making compliance much better.
Palliative care
When the goal of therapy changes from that of cure to that of palliation, one of our volunteers covers the family with house visits as is requested. This enables the continuous networking and interaction between the hospital based team and the family in this sad time. Most parents prefer to have their child at home, and so the bereavement counsellor can take them a wheelchair, oxygen cylinder, or whatever their needs are.
Annually a remembrance service is held to honour the children that have died. We find the parents are comforted and attend this occasion, together with many members of the multi-disciplinary team. There is a strong chain of group support for the bereaved parents, ably led by the bereavement counsellor.
Siblings often feel left out, and are indeed affected by the attention paid to the sick child. Groups for siblings have been organised over the years and now a group for bereaved siblings is starting.
In conclusion
It is crucial to ensure that all areas of care are attended to from day one, and during the course of the disease, irrespective of the prognosis. When informing the parents and child about the diagnosis, communication should be open, detailed and adjusted to the cultural, educational and social background of the family. All members of the health care team should be involved in this task, and each of them through their own particular expertise should try to satisfy the parents’, child’s and siblings’ needs in a way accepted at that particular time by the family.
The benefits of good health care can last a lifetime.