Advertisement

Palliative Care for Children Living with HIV Infection

  • Julia AmblerEmail author
Chapter
  • 18 Downloads

Abstract

Palliative care should begin at the time of diagnosis of HIV infection, as it aims to provide the active total care of the child’s body, mind and spirit, and also involves giving support to the family. Children and adolescents living with HIV infection experience a high burden of physical symptoms and emotional, social and spiritual issues throughout their life course and require significant support. Palliative care focuses on improving quality of life. If antiretroviral therapy should fail or disease overwhelm the patient, end of life care should be planned to ensure adequate symptom control and dignified death. This will include bereavement support of the family.

Keywords

Palliative care Holistic care Health-related suffering Pain assessment Pain management Symptom control End of life care Spiritual care Psychosocial support 

References

  1. 1.
    Joint United Nations Programme on HIV/AIDS. UNAIDS Data 2018. 2018. http://www.unaids.org/sites/default/files/media_asset/unaids-data-2018_en.pdf Accessed 3 Mar 2019.
  2. 2.
    Ji G, Li L, Lin C, Sun S. The impact of HIV/AIDS on families and children—a study in China. AIDS. 2007;21:S157–61.  https://doi.org/10.1097/01.aids.0000304712.87164.42.CrossRefPubMedPubMedCentralGoogle Scholar
  3. 3.
    The International Association for Hospice and Palliative Care. Global Consensus based palliative care definition. 2018. https://hospicecare.com/what-we-do/projects/consensus-based-definition-of-palliative-care/definition/. Accessed 3 Mar 2019.
  4. 4.
    The World Health Organisation. WHO definition of palliative care. 2002. https://www.who.int/cancer/palliative/definition/en/. Accessed 3 Mar 2019.
  5. 5.
    Amery J. Children’s palliative care in Africa. New York: Oxford University Press; 2009. http://www.icpcn.org/wp-content/uploads/2013/08/Childrens-Palliative-Care-in-Africa-Full-Text.pdf. Accessed 3 Mar 2019.CrossRefGoogle Scholar
  6. 6.
    Azam M, Campbell L, Ross A. Exploration of pain in children on antiretroviral treatment in a regional hospital in South Africa: original research. Official J South Afr Acad Family Pract/Primary Care. 2014;54(4):275–362.  https://doi.org/10.1080/20786204.2012.10874249.CrossRefGoogle Scholar
  7. 7.
    Bruce R, Merlin J, Lum P, et al. 2017 HIVMA of IDSA clinical practice guideline for the management of chronic pain in patients living with HIV. Clin Infect Dis. 2017;65(10):e1–e37.  https://doi.org/10.1093/cid/cix636.CrossRefPubMedPubMedCentralGoogle Scholar
  8. 8.
    Manworren RCB et al. Clinial validatin of FLACC: preverbal patient pain scale. Pediatr Nurs. Mar-Apr 2003Google Scholar
  9. 9.
    Lakhan S, Sheafer H, Tepper D. The effectiveness of aromatherapy in reducing pain: a systematic review and meta-analysis. Pain Res Treat. 2016;2016:1–13.  https://doi.org/10.1155/2016/8158693.CrossRefGoogle Scholar
  10. 10.
    The World Health Organisation. WHO guidelines on the pharmacological treatment of persisting pain in children with medical illnesses. 2012. https://www.who.int/medicines/areas/quality_safety/guide_perspainchild/en/. Accessed 3 Mar 2019.
  11. 11.
    World Health Organization. Persisting pain in children package: WHO guidelines on the pharmacological treatment of persisting pain in children with medical illnesses. Geneva: World Health Organization; 2012. http://www.who.int/iris/handle/10665/44540. Accessed 3 Mar 2019.Google Scholar
  12. 12.
    Association of Paediatric Palliative Medicine. Association for Paediatric Palliative Medicine Master Formulary 2017. 4th ed. 2017. Retrieved from https://www.appm.org.uk/guidelines-resources/appm-master-formulary/. Accessed 3 Mar 2019.
  13. 13.
    Chetty S, Baalbergen E, Bhigjee A, et al. Clinical practice guidelines for management of neuropathic pain: expert panel recommendations for South Africa. S Afr Med J. 2012;102(5):312.  https://doi.org/10.7196/SAMJ.5472.CrossRefPubMedGoogle Scholar
  14. 14.
    Amery J. A really practical handbook of children’s palliative care for doctors and nurses anywhere in the World. North Carolina: Lulu Publishing Services; 2016. http://www.icpcn.org/wp-content/uploads/2016/04/A-REALLY-PRACTICAL-Handbook-of-CPC.pdf. Accessed 3 Mar 2019.Google Scholar
  15. 15.
    Harding R, Selman L, Agupio G, et al. Prevalence, burden, and correlates of physical and psychological symptoms among hiv palliative care patients in sub-Saharan Africa: an international multicentre study. J Pain Symptom Manag. 2012;44(1):1–9.  https://doi.org/10.1016/j.jpainsymman.2011.08.008.CrossRefGoogle Scholar
  16. 16.
    Zynga S. Assessing patients spirituality: a new age holistic approach or a forgotten nursing practice? Health Sci J. 2015;9:3. http://www.hsj.gr/medicine/assessing-patients-spirituality-a-new-age-holistic-approach-or-a-forgotten-nursing-practice.pdf. Accessed 3 Mar 2019.Google Scholar
  17. 17.
    McGeehin HC. Spiritual development and the dying child: the pediatric nurse practitioner’s role. J Paed Health Care. 2004;18(6):271–5.  https://doi.org/10.1016/j.pedhc.2004.03.007.
  18. 18.
    Arenella C. Artificial Nutrition and hydration at the end of life: beneficial or harmful? Washington, DC: American Hospice Foundation; 2014. https://americanhospice.org/caregiving/artificial-nutrition-and-hydration-at-the-end-of-life-beneficial-or-harmful/. Accessed 3 Mar 2019.Google Scholar

Copyright information

© Springer Nature Switzerland AG 2020

Authors and Affiliations

  1. 1.Department of Paediatrics and Child HealthNelson R Mandela School of Medicine, UKZNDurbanSouth Africa

Personalised recommendations