1. Role of The Home Based Carer Paediatric Palliative Care for Home Based Carers Funded by British High Commission, Pretoria, Small Grant Scheme

2. Not just little adults  ALL children have very special needs  As a child grows, they have to learn, adapt and cope with the world around them  They have physical, emotional and social needs that are very different to adults  In the world of a child with HIV, there are a great number of challenges they must face

3. Physical Needs  faces a progressively terminal disease  experiences painful, distressing sicknesses  is dependant on others for care, love & support ©TALC

4. Emotional Needs  caring for a sick relative  grieving the loss of parents or siblings  unable to understand why he is ill  unable to engage in ‘normal’ child activities when sick  Numerous stressful investigations and procedures

5. Social Needs  May not be cared for properly as parent is sick  May be cared for by elderly grannies  May be cared for by siblings  Loss of household income  Living in poverty  Inadequate nutrition, sanitation  Poor access to health services  Future care for the Child? ©TALC

6. What is Palliative Care? To palliate is “to alleviate or ease” Whilst it IS NOT about treating disease, it IS about Alleviating symptoms Improving quality of life Relieving the burden of illness on patients & family

7. What is Palliative Care? Palliative care has traditionally been seen as end of life care and hospice However, it is much more than this! HIV places considerable physical, emotional, social & spiritual strain on children and their families throughout the course of infection

8. Not Just End of Life Care Whilst children with HIV will inevitably need end of life care at some stage, Palliative care begins when illness is diagnosed and is appropriate throughout the child’s illness AND at the end of life

9. A Continuum Palliative care is a continuum which children and families can enter at any point. The continuum ranges from:  Counselling before and after voluntary HIV testing  Supporting people with HIV/AIDS who are not sick and their families  Providing home care for people who are ill  Bereavement follow-up and support for families after a person with AIDS has died (Lauden, 1999)

10. Palliative Care is the active, total care of patients at a time when their disease is not responsive to curative treatment. Control of pain or other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of best possible quality of life for patients, their families or other key people important to them. Many aspects of palliative care are also applicable earlier in the course of the illness (World Health Organisation, 1998)

11. Palliative Care for Children aims to:  achieve the best quality of life for children and their families/care givers across the continuum of care, from diagnosis to end of life care and bereavement support  keep the child well and symptom-free for as long as possible, in order that he may live as fully and as comfortable as possible  ensure holistic, compassionate care, addressing physical, psychological, social & spiritual needs of each individual child

12. So What Can you Do? Children with HIV need you to help them and their carers by:  Addressing their physical, emotional, social and spiritual needs  Keeping them healthy for as long as possible  Monitoring them regularly  Recognising, referring and helping to treat infections  Recognising and helping to manage symptoms  Supporting their carers  Liaising with the Professional Nurse and multidisciplinary team

13. Promote Good Nutrition  Plays a central role in keeping children with HIV well for as long as possible  Essential for maintaining a strong immune system and helping children fight off infections  Children with HIV have greater nutritional requirements than uninfected children

14. Promote Good Nutrition Children with HIV need you to educate their care givers about:  the importance of good nutrition in promoting health  the nutritional values of local, available foods  preparation of local foods that maximises nutritional value  hygiene measures required in food preparation  and to recognise and refer children with malnutrition

15. Monitor Growth  The child’s weight should be recorded on the Road to Health Chart  Check the child has been weighed  Identify any causes for concern as early as possible  Refer any concerns ©TALC

16. Vitamin A Supplements All children should be given vitamin A supplements to prevent severe illness First dose:  Not breastfed - at 6 weeks  Breastfed – any time after 6 months of age Thereafter: should be given every 6 months to ALL children Severe Malnutrition or Persistent Diarrhoea: AN extra dose should be given for treatment UNLESS a dose has been given in past month

17. Immunizations  Children with HIV get more infections than other children  Some can be prevented using normal immunizations  ALL children with HIV must be immunised according to the national programme  Home Based Carers are able to educate care givers about the importance of Immunizations!

18. Prophylaxis Prophylaxis is the use of drugs to prevent certain infections Severe Opportunistic Infections like  PCP Pneumonia,  Toxoplasmosis  Acute severe bacterial infections may be prevented using Co-Trimoxazole (Bactrim) prophylaxis

19. Prophylaxis Children with HIV need you to:  reinforce the importance of prophylaxis  ensure they have enough medication for child  assess whether they are giving the medication and giving it correctly  refer any concerns  monitor for allergy to Bactrim

20. Bactrim Regimen Children with HIV should take Bactrim daily, 5 days a week They should be continued until 15 months old when a decision is made:  If HIV uninfected, Bactrim is stopped  If HIV-infected but asymptomatic, Bactrim is stopped  If symptomatic HIV, Bactrim is continued for life

21. Regular Monitoring Children with HIV need you to monitor them regularly in order to:  Assess and promote good nutrition  Identify delays in growth and development  Educate carers about the importance of clinic checks  Provide support to the child and carer  Identify and address emotional needs  Identify and address social needs  Identify infections as early as possible  Refer any concerns to the Professional Nurse

22. Recognising & Treating Infections Infections in children with HIV are usually  more severe  more difficult to treat than uninfected children Children get very sick much more quickly than adults Early recognition & treatment of any infection is essential!

23. Recognising & Treating Infections Children with HIV need you to:  Listen when the carer is worried  Educate care givers about signs and symptoms  Encourage care givers to call for help  Assess an emergency and take appropriate action  Identify infections as early as possible  Refer promptly where appropriate  Assist with management of common signs & symptoms  ensure regular follow up

24. Symptom Management Children with HIV experience a wide range of distressing, debilitating symptoms throughout the course of their illness, impacting greatly on quality of life Children with HIV need you to:  Anticipate painful, distressing symptoms  Recognise symptoms as early as possible  Refer problems promptly for appropriate management  Ensure symptoms are being managed appropriately  Support and assist their care giver  Follow up to ensure management has been effective

25. Working With Carers  The child’s carer knows the child better than anyone  Ask them if they have any concerns about the child!  Hear their concerns!  Carers needs lots and lots of support and encouragement Teach the carers:  How to help keep the child healthy for as long as possible  To recognise and refer problems  To give the medicines the child needs

26. Not just physical support! Children with HIV need much more than just physical care They also have immense emotional, social and spiritual needs And so do their families! Addressing these is essential if quality of life is to be improved for the child and Family Liaise with social and community services

27. The Arrival of ARVs! Children with HIV can now expect:  Reduced number of Infections  Improved quality of life and  Longer life BUT they still have considerable needs as: ARVs will not cure children with HIV Children on ARVs need immense support and monitoring

28. The Arrival of ARVs! Children taking ARVs need you even more than before:  To help them take the ARVs so they can get full benefit from the drugs for as long as possible  To help them understand why they need to take the medicines  To monitor the effect of the drugs  To identify side effects  To refer any problems

29. End Of Life Care A team of professionals may decide that continuing with further treatment will cause undue distress to a child The decision to provide the child and carer with End of Life or Terminal Care is thought about extremely carefully Every child will be different, depending on their condition

30. End of Life Care The expertise and support of Home Based Carers make it possible for Children to die as comfortably as possibly in their own home and Care givers to be supported during the final stages of the child’s life This should be encouraged, as long as the parents or carers are able to cope

31. Bereavement Support  Your role does not end when a child dies  Any death is traumatic but none more so than the death of a child within a family  We must be sympathetic, understanding of their loss and support them through their grieving process

32. Your Role in the Future  There are many, many children infected with HIV who need your care and support now  Across the continuum of care  But this is just the beginning!  Over the following years, there will be more and more children needing your expertise ©TALC