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

Purpose: To devise and test an instrument measuring clinician perceptions of perinatal palliative care (PPC) and barriers to care delivery.

Theory: PPC was theorized to involve the care of pregnant women and their families after prenatal testing resulted in a life-limiting fetal diagnosis. Both giving birth to a child with a life-limiting condition or termination of pregnancy for fetal anomaly can be emotionally traumatic life events. Clinicians were thought to face ethical dilemmas that involved approaches to care for this population. The ethical dilemmas were measured on a perceptions scale using items about informed consent, justice, beneficence, and autonomy. Barriers were theorized as obstacles to delivering quality PPC and included insufficient education, personal discomfort, and difficulty garnering team or administrative support for care.

Subjects: Licensed clinicians practicing in the perinatal field.

Design: Stage 1 entailed instrument development and validation, which was achieved through a Delphi study involving 11 expert panelists. The devised instrument included 64 six-point Likert items. In stage 2, a computer survey gathered data from a multidisciplinary, clinician group.

Methods: A total of 264 clinicians completed the survey. Exploratory factor analysis with varimax rotation was used to validate the instrument, evaluate the factors, and summarize the explained variance achieved by sum scores of the perceptions and barriers scales.

Main Outcome Measures: The perceptions scale was reduced to 23 items with a 6-factor solution explaining 67% of the variance with a good internal consistency reliability of 0.77 (Cronbach α). The 22-item barriers scale had a 6-factor solution explaining 71% of the variance with an alpha reliability of 0.83.

Principle Results: The Perinatal Palliative Care Perceptions and Practice Barriers Scale instrument is a valid and reliable measure of PPC perceptions and barriers for measuring the attitudes of physicians and nurses.

Conclusion: Use of this instrument can foster educational programs and hospital planning for PPC teams that provide grieving families with the varied support they need. It is also a useful instrument for examining trends in the clinician perspectives and practice barriers as more genetic testing and subsequent terminal diagnoses occur.