A qualitative exploration of parental perspectives on quality of care for children with serious illnesses

Felicia Jia Ler Ang; Cristelle Chu-Tian Chow; Poh Heng Chong; Teresa Shu Zhen Tan; Zubair Amin; Siti Nur Hanim Buang; Eric A Finkelstein

doi:10.3389/fped.2023.1167757

A qualitative exploration of parental perspectives on quality of care for children with serious illnesses

Front Pediatr. 2023 Jul 28:11:1167757. doi: 10.3389/fped.2023.1167757. eCollection 2023.

Authors

Felicia Jia Ler Ang¹, Cristelle Chu-Tian Chow², Poh Heng Chong³, Teresa Shu Zhen Tan⁴, Zubair Amin^{5

6}, Siti Nur Hanim Buang², Eric A Finkelstein^{1

7}

Affiliations

¹ Lien Centre for Palliative Care, Programme in Health Services and Systems Research, Duke-NUS Medical School, Singapore, Singapore.
² Department of Paediatrics, KK Women's & Children's Hospital, Singapore, Singapore.
³ HCA Hospice Limited, Singapore, Singapore.
⁴ Department of Paediatrics, Khoo Teck Puat-National University Children's Medical Institute, National University Hospital, Singapore, Singapore.
⁵ Department of Neonatology, Khoo Teck Puat-National University Children's Medical Institute, National University Hospital, Singapore, Singapore.
⁶ Department of Paediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
⁷ Global Health Institute, Duke University, Durham, NC, United States.

Abstract

Introduction: Being responsive to end-users is essential to good care. Limited in-depth exploration of parental perspectives on care received by children over the course of serious illness has hindered the development of process measures to evaluate quality of care. Our objective was to identify the key process indicators prioritized by parents in the care of seriously ill young children and develop a framework to guide assessment of quality of care.

Methods: This qualitative study followed Charmaz's Constructivist Grounded Theory. In-depth semi-structured interviews were conducted with parents of young children with serious illness in Singapore. Participants were sampled across various healthcare settings, children's ages, and illness categories. Theoretical sampling and constant comparative analysis were used to generate initial, focused, and theoretical codes, which informed construction of a conceptual framework.

Results: 31 parents participated from July 2021 to February 2022. Initial and focused coding generated 64 quality of care indicators describing key care practices, interactions, and procedures. Indicators were categorized under four themes: (1) efficient healthcare structures and standards, (2) professional qualities of healthcare workers, 3. supporting parent-caregivers, and 4. collaborative and holistic care. Theoretical coding led to the development of the "PaRental perspectives on qualIty of care for Children with sErious iLlnESSes (PRICELESS)" framework which summarizes elements contributing to the parental perception of quality of care.

Discussion: The identified process indicators will facilitate the development of standardised parent-reported measures for assessing service quality and benchmarking among providers. The framework provides overall guidance for conceiving quality improvement initiatives.

Keywords: grounded theory; palliative care; parents; patient experience; pediatrics; process assessment; quality indicators; quality of care.

Grants and funding

FA was funded by a President's Graduate Fellowship while conducting this study during her doctoral training at Duke-NUS Medical School, Singapore. Funding support for conducting and publishing this study was provided by Lien Centre for Palliative Care, Duke-NUS, the “Estate of Tan Sri Khoo Teck Puat” and the SingHealth Duke-NUS Global Health Institute (SDGHI_PHDRG_FY2022_0001-01). Funders were not involved in the design of the study; in data collection, analysis, or interpretation; or in writing the manuscript.