Palliative care needs of HIV exposed and infected children admitted to the inpatient paediatric unit in Uganda

Abstract

Paediatric palliative care is an emerging subspecialty that focuses on achieving the best possible quality of life for children with life-limiting conditions and also for their families. It is a response to the suffering and unique needs of such children. Globally there is limited documented data available on the palliative care needs of children with HIV. A retrospective review of data of all the HIV exposed and positive children who were admitted to the ward from January to December 2012 was done to document their palliative care needs.A total of 243 children were admitted to the ward during the stated period. Of these, 139 (57.2%) were female and 104 (42.8%) were male. Among them 131 (54%) were aged five years and below whereas 112 (46%) were above five years. Some of the identified palliative care needs documented included physical needs: pneumonia 46 (19%), severe acute malnutrition 38 (16%), mild and moderate acute malnutrition 23 (9.6%), and respiratory tract infections 22 (9.3%). Social needs: poor social support 21 (41%), financial instability 16 (31%), and child neglect 4 (8%). Psychological needs: antiretroviral treatment (ART) counselling 127 (36%), HIV counselling and testing for the child and family 63 (18%), adherence support 53 (15%), and others 11 (3%). Spiritual needs: discontinuing ART because of belief in spiritual healing 18 (81%), loss of hope because of severe ill health 1 (5%), and others 3 (14%).These results emphasise the need for palliative care in children with HIV even in the era of ART. The needs identified are in keeping with studies done elsewhere and are similar to the palliative care needs of children with other life-limiting illnesses such as cancer.ConclusionHIV positive and exposed children plus their families have vast palliative care needs and a holistic approach is the key in their management.

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

“…40 Weight loss, fever, mouth sores, stunted growth, diarrhoea, wasting, lymphadenopathy, oral candida, acute malnutrition, pneumonia, and respiratory tract infections are common in paediatric patients with HIV. 43,46,57 Studies that address concerns in neuro-disability and, particularly, the one on the development of the suffering scale in adolescents with cancer, prioritised physical symptoms and associated distress as core domains, which should be included in outcome measures for young people with LLC. 27,74 It is noticed that children tend to use unique language to describe their symptoms and, at times, have difficulty explaining their feelings.…”

Children's palliative care in low- and middle-income countries

“…These include a study on presenting symptoms in children referred for palliative care in Malawi,28 the needs of HIV-exposed and infected children in Uganda34 and lessons learnt through the development of beacon centres in Tanzania, Uganda and South Africa 48. A recent study to identify the need for CPC, assessing provision and its gaps in three countries—Kenya, South Africa and Zimbabwe—is part of a wider study to estimate global need for CPC 18 20.…”