Delphi Method to Develop a Palliative Care Tool for Children and Families in Sub-Saharan Africa.

CONTEXT: In sub-Saharan Africa, there is no standardized approach to pediatric palliative care assessment. Because of this, there is a critical demand for evidence-based assessment tools that identify the specialized needs of children and their families requiring palliative care in developing countries. OBJECTIVES: To develop a standardized approach to pediatric palliative care (PPC) assessment that includes an individualized plan of care for use in sub-Saharan Africa. METHODS: A Delphi method approach used five rounds to explore core elements that define the essential assessment attributes mandatory for providing excellence in PPC. Using the Delphi method, the consensus from 11 PPC experts was obtained during four Delphi rounds regarding the most important questions to include in a PPC assessment tool and plan of care. During the final Delphi round 5, the expert consensus was confirmed in a separate group of 36 childhood cancer/palliative care clinical providers. RESULTS: Five core elements were developed as the foundation for a PPC assessment. A symptom assessment tool was developed that includes 15 symptoms that PPC experts agreed occurred more than 65% of the time in their patients. CONCLUSION: The Delphi method was an effective tool to develop a consensus on a PPC assessment tool to use with children and their families in sub-Saharan Africa. This standardized approach will enable the collection of data to drive outcomes and research.

Palliative Care Services within a Pediatric Hematology-Oncology Program in a Low-Resource Setting.

CONTEXT: Outcomes for children with cancer in sub-Saharan Africa (SAA) are dismal due to delayed diagnosis and limited access to curative therapy. When establishing a pediatric hematology-oncology (PHO) program in low-resource settings, early integration of palliative care services becomes essential. While palliative care is a human right, equitable distribution is lacking. OBJECTIVES: We aim to describe our experience establishing a palliative care program, the services offered, and the distribution of patients served. METHODS: This is a brief description of our PHO palliative care program in Lilongwe, Malawi at a tertiary care center and a three-year retrospective review of activities (2017-2020). Services offered include inpatient, outpatient, home visits, end of life care, and strengthening of referral systems. RESULTS: Over the three-year period, 315 patients were enrolled. 57% (n=179) were male. The median age was seven years (5 months-22 years). Patients served were from 17 of 28 districts within Malawi. Diagnoses of patients included 43% solid tumors (n=135), 22% lymphoma (n=68), 15% leukemia (n=47), and 21% hematologic disease (n=65). 40% of patients have died (n=125), with 53% of deaths occurring at home (n=66), 22% in the hospital (n=28), and 25% at unknown locations (n=31). CONCLUSION: Palliative care is a critical component of PHO programs worldwide. Programs must leverage existing networks to ensure optimal care to children and families. We demonstrate the feasibility of integrating palliative care services within a PHO program in a low-resource setting, which could serve as a model for other countries in SSA.

Improving Peripheral Intravenous Catheter Care for Children with Cancer Receiving Chemotherapy in Malawi.

PURPOSE: To change pediatric oncology nursing management of peripheral intravenous catheter (PIVC) insertion and care based on current best evidence. DESIGN AND METHODS: Practice change strategies were developed, and nurses completed education on proper PIVC insertion, dressing placement, and ongoing PIVC assessment with emphasis on preventing chemotherapy extravasation. Nurses also completed a chemotherapy course as part of their orientation program. The plan for PIVC practice change was based on evidence from published research and established PIVC care guidelines. Pre-assessment data revealed numerous PIVC attempts and a high incidence of extravasation (42%) in children with cancer receiving treatment in Malawi. RESULTS: Post-assessment data nine months later resulted in a reduced extravasation rate from 42% to 4% using point prevalence assessments. PIVC insertion attempts reduced following education and guideline implementation; 81% of children required more than 3 PIVC insertion attempts before the practice change. Only 1% of PIVC insertions required more than 3 attempts after education and practice change implementation. Nurses completed a 32-item written examination before the chemotherapy course; the mean score was 50/100. Upon completion of the chemotherapy course, nurses obtained a mean score of 97/100 on the written examination. CONCLUSIONS: Using an organized approach to nursing practice change improved PIVC care in children with cancer. PRACTICE IMPLICATIONS: This project provides evidence that nursing practice change strategies can be used in any setting including countries like Malawi with limited resources.