The Perinatal Palliative Care Perceptions and Barriers Scale Instrument©: development and validation.

Area of Science:

• Perinatal medicine
• Palliative care
• Healthcare ethics

Background:

• Perinatal palliative care (PPC) addresses the needs of families experiencing life-limiting fetal diagnoses.
• Both childbirth with a life-limiting condition and termination for fetal anomaly are emotionally challenging.
• Clinicians face ethical dilemmas regarding care approaches for this population.

Purpose of the Study:

• To develop and validate an instrument to measure clinician perceptions of PPC.
• To identify barriers hindering the delivery of quality PPC.

Main Methods:

• A Delphi study with 11 experts for initial instrument development.
• A computer survey administered to 264 multidisciplinary clinicians.
• Exploratory factor analysis used for scale validation and data analysis.

Main Results:

• The Perinatal Palliative Care Perceptions and Practice Barriers Scale was developed.
• The perceptions scale (23 items) achieved 67% variance explained with Cronbach's α = 0.77.
• The barriers scale (22 items) achieved 71% variance explained with α = 0.83.

Conclusions:

• The developed instrument is a valid and reliable measure for clinician attitudes towards PPC.
• This tool can inform educational programs and hospital planning for PPC teams.
• It facilitates examination of clinician perspectives and barriers amidst increasing genetic testing and diagnoses.