Pilot-testing a Perinatal Palliative Care Intervention Program

The validated NeoComfort scale will be used to assess pain and discomfort. The COMFORTneo scale is composed of 7 behavioral dimensions: As respiratory response applies to ventilated neonates only, and crying to spontaneously breathing neonates only (including those requiring continuous positive airway pressure), the rater will actually rate 6 dimensions. Alertness, calmness/agitation, facial tension, muscle tone, body movement are rated for all neonates. As responses are on a 1 to 5 Likert scale, total scores range from 6 to 30-with higher scores indicating more pain.scores range from 6 to 30-with higher scores indicating more pain.

All medication administration and procedures followed are registered throughout the care trajectory. Duration or timing is impossible to predict.

Contact moments between healthcare providers and parents are registered throughout the care trajectory. Duration or timing is impossible to predict.

Scoring of the parental Perinatal Grief Scale. The short version of the Perinatal Grief Scale consists of 33 items that represents three subscales each consisting of 11 items: active grief (sadness, missing the baby, crying for the baby), difficulty coping (difficulty in dealing with normal activities with other people, withdrawal and depression), and despair (feelings of worthlessness and hopelessness). Each item is scored on a 5-point likert scale, resulting in a possible range of 33-165. Higher scores reflect more intense grief.

Scoring of parental Brief-COPE (Coping Orientation to Problems Experienced Inventory) questionnaire. The Brief-COPE is a 28 item self-report questionnaire designed to measure effective and ineffective ways to cope with a stressful life event. "Coping" is defined broadly as an effort used to minimize distress associated with negative life experiences. The scale can determine someone's primary coping styles with scores on the following three subscale: Problem-Focused Coping; Emotion-Focused Coping; and Avoidant Coping. Scores are presented for the three overarching coping styles as average scores (sum of item scores divided by number of items), indicating the degree to which the respondent has been engaging in that coping style (higher scores = more engagement of that coping style).

Scoring of The Parental Satisfaction of Perinatal Palliative Care Instrument, which was developed to identify and measure parental satisfaction in perinatal palliative care for parents who opt to continue a pregnancy with a life-limiting fetal diagnosis. The instrument measures parent-reported care delivery addressing the pregnancy time continuum in three scales (Prenatal; Intrapartum; Postnatal). Items in the instrument are on a Likert scale from 1-7, with 1 indicating "strongly disagree," 4 indicating "does not apply/neutral," and 7 indicating "strongly agree." Higher scores reflect higher parental perception of quality care delivery. The Prenatal Scale includes 37 items (range from 37-259); the Intrapartum Scale includes 37 items (range from 37-259); and the Postnatal Scale includes 44 items (range from 44-308).

Scoring of Healthcare provider Compassion Satisfaction and Fatigue questionnaire. ProQOL is a survey consisting of 30 items scaled on a five-point Likert scale, measuring three subscales consisting of 10 items each: Compassion Satisfaction, Burnout and Secondary Traumatic Stress. The Compassion satisfaction scale is about the pleasure derived from your work, with higher scores indicating that you derive a good deal of professional satisfaction from your position (range of 10-50). The burnout subscale is associated with feelings of hopelessness and difficulties in dealing with work or in doing your job effectively. Higher scores on this scale mean that you are at higher risk for burnout (range of 10-50). The secondary traumatic stress scale is about your work-related, secondary exposure to extremely or traumatically stressful events, with a higher score indicating a higher amount of experienced secondary traumatic stress (range of 10-50).

Scoring of Healthcare provider Professional Satisfaction with Provided Care. This is a self-developed (not yet validated) questionnaire on Professional Satisfaction with Provided Care consisting of 48 items, based on the existing Parental Satisfaction of Perinatal Palliative Care Instrument used in the parental assessment, to assess whether healthcare providers are satisfied with the perinatal palliative care they and their team provided in a particular case, including satisfaction with communication among the team, and communication with parents. Psychometric properties of the scale need to be determined after the pilot test.

Scoring of Healthcare provider experienced (psychological) support. This is a short, self-developed (not yet validated) questionnaire consisting of 6 items for physicians or 6 items for nurses, to assess the amound of (psychological) support that healthcare providers received during the care provision for this particular case. Psychometric properties of the scale need to be determined after the pilot test.

Parental feasibility and acceptability of pilot. As assessed by means of interviews.

Healthcare provider feasibility and acceptability of pilot. As assessed by means of interviews.