• Palliative care is the total active care of the child’s body, mind and spirit.  A good ECD programme is holistic in nature and, like palliative care, is active care which seeks to make a positive change in the life of the child.
• Palliative care aims to improve the child’s quality of life, as does ECD.  Both look to provide the very best care possible for the child in the best environment possible and for children to develop to the best of their potential.
• Palliative care responds to the present as well as the ever-changing needs of the child, be these physical, cognitive, social or emotional, as does ECD
• Palliative care can be provided in any setting, including that of a school or ECD centre
• Most children’s hospices and children’s hospice programmes make provision for play and many have an ECD day care centre or include ECD as part of their programme.
• ECD forms an integral part of CPC training for health and related professionals.  I would like to pose this question: In the light of our AIDS statistics in Africa, particularly the number of both infected, affected and bereaved children, is it not perhaps time that palliative care for children also formed an integral part of ECD training?

The traditional model of palliative care which proposed a switchpoint from curative to palliative care is no longer the desired approach.  With integrated care, palliative care should be offered at the time of diagnosis and becomes more significant as the disease progresses.  ECD plays an important role in the general care and support of the young life-limited child, particularly when there is are long periods when the child feels well and is able to participate in most activities.  If the children’s hospice programme is not providing an ECD programme on site, then it is necessary for the palliative care nurse or social worker to ensure that ECD is provided for the child either through education of the primary caregivers or assistance with placement in ECD centres. 

Little attention has been given to the developmental needs of bereaved children, The death of a parent during childhood has a profound effect on a child’s wellbeing and children are particularly vulnerable to unresolved and to complicated bereavement.  Children are often prevented from working through the bereavement process due to:

• Intellectual immaturity which can lead to incomplete understanding of death and is often compounded by inaccurate information provided by adults
• Inability to sustain emotion so their grief is often missed or misunderstood
• Child’s dependency on caregivers, who may or may not be in a position to fulfill their emotional needs
• Attachment issues – the loss of the primary caregiver will have a profound effect on the child and is often compounded by secondary losses such as loss of income, social status, stigmatisation, etc.

Children’s Palliative Care in South Africa is the story of the tiny trickle that has become a tidal wave.  In 2007 there were seven known children’s hospices or services providing palliative care to children.  Through the generosity of donors such as The Diana, Princess of Wales Memorial Fund, PEPFAR, OSI and The True Colours Trust, these seven became 18 in 2008 and by 2009 there were 46 sites offering palliative care to children.  At present there are 62 HPCA affiliated sites which provide some form of palliative care to children within South Africa.

• It relieves suffering and provides comfort in the form of specialised pain relief and the management of unpleasant symptoms
• It requires an interdisciplinary team who have specific skills and experience
• It can, and often does, run concurrently with curative treatment
• It is applicable from diagnosis and continues into bereavement
• It provides supportive, physical, psycho-social and spiritual care which includes members of the patient’s family
• It can take place wherever people are committed to its implementation

ECD Day Care Centres form part of a number of children’s hospice programmes in South Africa.  It is felt that an ECD centre is able to offer the most effective palliative care to both infected and affected children by ensuring adherence to ART, monitoring the nutritional status of the child and providing a safe and stimulating environment in which the children are able to play and develop.  More and more of these ECD centres are employing teachers qualified and experienced in ECD.

Hospice programmes also provide Drop-In and Community centres which cater for the older, school-going child and provide nutritional support as well as assistance with homework and encourage sporting and cultural activities.

Another model of palliative care for children is that of Support Groups.  These groups are predominantly for children who are themselves HIV positive or who have been affected by AIDS through the loss of one or both parents.   Many are both infected and bereaved.   Support groups assist children with issues such as stigmatisation, treatment adherence, working through loss and bereavement and memory work.
By far the most common and affordable model of providing palliative care is that of home based care.  This involves an assessment of the needs of a child by using what is known as a CARES score.  This CARES score rates the child’s vulnerabilities and determines the number of times the child will be visited by the home based care workers and the professional nurse. Developmental assessments are part of home based care and parents and guardians are advised as to the importance of stimulation and early childhood education.

The role of play in children's palliative care

Play is the language of childhood.  It is the means by which children come to terms with difficult circumstances, stresses and anxieties and by which they develop from one level to the next.  Life-limited children are often restricted by their illness, they may be attached to oxygen, confined to bed or a wheelchair or lack the physical means to interact with their environment yet more than most they need the psychological and physical benefits of play to help them to come to terms with the consequence of their illness.  
Facilitating play is an important aspect of CPC and part of the training of CPC professionals is to understand the role of play in the development of the child as well as what play equipment is appropriate to the age and developmental levels of children in their care.

Research has also shown that over 90% of HIV infected children are more vulnerable to learning difficulties and learning problems at school.  The importance of a good foundation for these children cannot be overestimated.