Abstract
Abstract
Background
Parent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness trajectory of seriously ill children. Formative work involving in-depth interviews with parents of children with serious illnesses generated 66 draft items describing key QoC processes. Our present aim is to develop a comprehensive parent-reported experience measure of QoC for children with serious illnesses and evaluate its content validity and feasibility.
Methods
For evaluating content validity, we conducted a three-round Delphi expert panel review with 24 multi-disciplinary experts. Next, we pre-tested the items and instructions with 12 parents via cognitive interviews to refine clarity and understandability. Finally, we pilot-tested the full measure with 30 parents using self-administered online surveys to finalize the structure and content.
Results
The Delphi expert panel review reached consensus on 68 items. Pre-testing with parents of seriously ill children led to consolidation of some items. Pilot-testing supported feasibility of the measure, resulting in a comprehensive measure comprising 56 process assessment items, categorized under ten subthemes and four themes: (1) Professional qualities of healthcare workers, (2) Supporting parent-caregivers, (3) Collaborative and holistic care, and (4) Efficient healthcare structures and standards. We named this measure the PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS).
Conclusions
PRECIOUS is the first comprehensive measure and has the potential to standardize assessment of QoC for seriously ill children from parental perspectives. PRECIOUS allows for QoC process evaluation across contexts (such as geographic location or care setting), different healthcare workers, and over the illness trajectory for children suffering from a range of serious illnesses.
Funder
SingHealth Duke-NUS Global Health Institute
Publisher
Springer Science and Business Media LLC
Reference57 articles.
1. Wood F, Simpson S, Barnes E, Hain R. Disease trajectories and ACT/RCPCH categories in paediatric palliative care. Palliat Med. 2010;24(8):796–806.
2. Chambers L. A guide to children’s palliative care. 4th ed. Bristol: Together for Short Lives; 2018.
3. King SM, Rosenbaum PL, King GA. Parents’ perceptions of caregiving: development and validation of a measure of processes. Dev Med Child Neurol. 1996;38(9):757–72.
4. Berman L, Raval MV, Ottosen M, Mackow AK, Cho M, Goldin AB. Parent perspectives on readiness for discharge home after neonatal intensive care unit admission. J Pediatr. 2019;205(98–104): e4.
5. Newland LA. Family well-being, parenting, and child well-being: pathways to healthy adjustment. Clin Psychol. 2015;19(1):3–14.