It's about living a normal life: parents' quality of life when their child has a life-threatening or life-limiting condition-a qualitative study

TB Kittelsen, VB Lorentsen, C Castor, A Lee… - BMC Palliative Care, 2024 - Springer
Background Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both
children and their families. While most studies within PPC have focused on the ill child's …

[HTML][HTML] PRECIOUS demonstrated satisfactory measurement properties for assessing the quality of care for children with serious illnesses

FJL Ang, YB Cheung, M Gandhi, T Østbye… - Journal of Clinical …, 2024 - Elsevier
Objectives To determine the measurement properties of PaRental Experience with care for
Children with serIOUS illnesses (PRECIOUS), a parent-reported measure of Quality of Care …

Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measure

FJL Ang, M Gandhi, T Ostbye, C Malhotra… - BMC Palliative Care, 2024 - Springer
Background Parent-reported experience measures are part of pediatric Quality of Care
(QoC) assessments. However, existing measures were not developed for use across …