A Quality-of-Care Measurement for Seriously Ill Children

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A Quality-of-Care Measurement for Seriously Ill Children

SDGHI Global Health Doctoral Scholar Felicia Ang on her work in improving paediatric palliative care.

When she first started studying vulnerable patient populations, Felicia Ang, a doctoral researcher under the Duke-NUS Programme for Health Services and Systems Research, had been working with adults with advanced illnesses.

“In the early days of my PhD, I was fortunate to be given the chance to work with seriously ill adults and their families,” said Felicia.

Observing the unique challenges these families faced, and how the Lien Centre for Palliative Care (LCPC) had done phenomenal work in addressing important questions relating to adults with advanced illnesses, Felicia was compelled to explore the care experiences of a different population – that of seriously ill children.

“At that time, we had not ventured far into the paediatric population,” said Felicia. “But I was keen to find out how the care experiences of over 21 million seriously ill children could be improved.”

Felicia representing LCPC at the 45^th Annual Meeting of the Society for Medical Decision-Making

A mother of 3, Felicia’s motivation to work with this population has an added personal dimension. Her doctoral research aimed to develop and implement standardised quality measurement tools for serious illnesses in children. The goal of these measures is to identify gaps in care delivery and inform targeted interventions to improve quality of care.

"Quality of care is a strong indicator of a health system’s effectiveness,” said Felicia. For serious paediatric illnesses, especially in settings where resources are scarce, the ability to measure quality of care is key for stakeholders to identify and improve under-performing processes and settings.

Standardising benchmarking and continuous evaluation across the region are crucial for raising care standards uniformly and not just within specific contexts like Singapore. This ensures all children, regardless of their geographic location, receive the highest quality of care.

During her research, Felicia encountered numerous cases where the challenges faced by seriously ill children and their families transcended local contexts. These challenges, such as the emotional and financial strain on families and the complexity of navigating healthcare systems, are issues common across many countries.

Additionally, most existing measurements of quality of care for seriously ill children have predominantly been developed and applied in Western contexts. Felicia sought to fill the gap in Asia, where cultural, economic, and healthcare system differences might impact the applicability of Western measures.

These realisations underscored the need for a broader, more inclusive approach to serious illness-related research.

While working on initial plans, I realised that a local-only approach may limit the long-term and wider impact of LCPC’s efforts, especially when many of the challenges faced by the seriously ill are shared,” said Felicia. “We wanted to take on a global health approach to understand: how can we optimise the resources within our grasp to make wider impact?”

As an SDGHI Global Health Doctoral Scholar, Felicia was awarded grant funding to carry out her research, as well as access to resources and guidance from mentors who aided her in the deepening of her global health knowledge, offering her with a different mindset which helped shift the way she saw her research.

“The Global Health Doctoral Scholars Track provided me with a unique perspective on the complexities of health disparities and the importance of culturally relevant and sustainable health interventions,” said Felicia. “In an ever-changing research environment that is increasingly valuing cross-disciplinary collaboration, I do think that global health training is an important ingredient for future success.”

Felicia with her mentor, Prof Eric Finkelstein

“The Global Health Doctoral Scholars Track provided me with a unique perspective on the complexities of health disparities and the importance of culturally relevant and sustainable health interventions,” said Felicia. “In an ever-changing research environment that is increasingly valuing cross-disciplinary collaboration, I do think that global health training is an important ingredient for future success.”

What resulted was Parental Experience with Care for Children with Serious Illnesses (PRECIOUS), a quality of care measure for seriously ill children across various care settings. PRECIOUS evaluates parental experiences on five scales: hospitalisation-specific processes, reducing caregiving stressors, access to financial and medical resources, caregiver support and respectful care, and collaborative and goal-concordant care. Through an assessment of its measurement properties, it revealed a need to balance parental involvement, family support, and reducing caregiving stressors, promoting coherence in care experiences across different care settings and throughout the care trajectory.

Felicia expression appreciation for local partners who were instrumental to PRECIOUS

Felicia expressing appreciation for local partners who were instrumental to PRECIOUS

“Collaborative efforts were a cornerstone of this research,” said Felicia, who engaged with local and regional partners and received guidance from mentors well-known in palliative care. “They provided first-hand input into ensuring that the processes of care captured in our instrument are globally relevant, particularly in measuring quality of paediatric palliative care in resource-varied settings.”

Looking forward, Felicia and her team aim to develop and evaluate interventions for families of children with serious illnesses that can be adapted and scaled across different settings.

“There’s much more to be done, such as extending the quality measurement work to the wider region, and designing targeted interventions to address gaps,” she said. “Fundamentally, what I’ve learned is only the beginning. Let’s see where the future brings us!”

Become a global health scholar

Applications are open for the SDGHI Global Health Doctoral Scholars Track. Download the fact sheet and find out more here.

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