Assessing palliative care needs in children with HIV and cancer: the case of children attending University teaching hospital in Zambia

Master Thesis

2015

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University of Cape Town

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Background: WHO has been advocating for provision of palliative care for all who need it according to needs and context. Though significant advances have been achieved in providing palliative care for adults in Sub Saharan Africa, very little progress has been made in providing paediatric palliative care. Coverage of paediatric palliative care services have remained low and there is lack of evidence on child specific palliative care needs and tools for assessing these needs. This study tested applicability of some tools for assessing palliative needs in children in the Zambian context and reports palliative care needs of children and their families attending the University Teaching Hospital (UTH) in Lusaka, Zambia Methodology: This was a mixed study with quantitative and qualitative components. The quantitative component assessed and applied 2 new research tools for assessing palliative care needs in children attending University teaching hospital in Lusaka, Zambia. The tools assessed included the Needs Evaluations questionnaire (NEQ) and the paedsQL4 questionnaire. Cronbach's alpha was used to determine reliability while factor analysis was used to identify relevant factors. Focus group discussions were conducted with selected group of parents/legal guardians of children. In-depth interviews were conducted with key informants. All participants were purposely selected to take part in the study and were informed about the voluntary nature of the study. Results: The NEQ and the paedsQL4 questionnaires were both found to be reliable for assessing palliative care needs for children in the Zambian context (Cronbach's alpha >0.8). Generally there were very high need gaps across all hospital wards with 15/23 items having need gap of >50%. Overall the largest need gap was in the information domain. The HIV ward had least need gap with only 8/23 items having a need gap of > 50%. Results from the paedsQL4 showed that there were significant mean differences across the three categories of patients in all domains of functioning with oncology patients performing worst. In physical functioning domain, the items showed that 6/7 items had significant mean differences (p<0.05).Confirmatory factors analysis showed that 2 items were loading highly on the physical functioning factor. These were running and participating in sports (0.896).In the emotional functioning domain, 2 items loaded highly on factor analysis, feeling sad (0.842 and angry (0.666).In the social functioning domain, highest loading were in 2 items, both related to making friends. In the school domain missing school to go to hospital loaded highly on factor analysis (0.842) followed by difficulty paying attention in class (0.716) Qualitative results supported findings from quantitative data. Several needs were highlighted by the parents/guardians and health workers. The major family needs focused on economic/financial and bereavement support. Most families were referred to the UTH from very far off places without any form of support. In line with quantitative findings, there was high demand for information for families which health workers did not adequately provide. One major barrier identified to provision of palliative care was poor coordination of services with most patients missing out on services which were already available. While social workers were available, poor funding negatively affected this service. There were very few trained health workers in palliative care. Pain management remained poor with many clinicians still not comfortable to prescribe stronger analgesia such as morphine for severe pain. Conclusion: This study applied two quantitative tools for assessing palliative care needs in Children. The results showed that the tools were fairly reliable and applicable in the Zambian context. The findings indicate huge needs gap for child palliative care services in Zambia. The major family needs were economic and bereavement support. There was high demand for information for families which health workers did not adequately provide. Pain control remained sub-optimal especially for children with cancer. One major barrier identified to provision of palliative care was poor coordination of services.
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