Abstract
The aim of this research was to produce an instrument that identifies and measures quality indicators and parental satisfaction in perinatal palliative care for parents who opt to continue a pregnancy with a life-limiting fetal diagnosis. The instrument was developed using current literature and recommendations from the National Consensus Project for Quality Palliative Care. A purposive sample of 14 experts provided guidance on construct and content validity. Open-ended questions and Likert scales were used to measure consensus about item relevancy. The instrument was piloted with parents to garner feedback on item clarity and relevance. Computer-mediated applications were used to conduct research using Delphi methodology. A panel of international experts participated until consensus was reached. Three rounds of analysis were completed to satisfy criteria for consensus related to constructs. Results indicate quality indicators can be defined and characterized. Items specific to parental needs during a pregnancy and birth were shown to be valid and were categorized into 8 domains of quality care. The instrument measures and reports patient-level data that will promote discipline-wide parental satisfaction and quality assessment and drive improvement initiatives. Use by clinicians and researchers will demonstrate a commitment to excellence and intentions to improve processes at the forefront of patient care.