Parenting Support Intervention During Pregnancy With a Life-Limiting Fetal Condition: A Pilot Study.

Abstract

Standard care in the United States for parents with life-limiting fetal conditions (LLFC) focuses on medical decision-making through fetal care centers and perinatal palliative care (PPC) teams when accessible. There are no PPC interventions to optimize parents' daily lived experiences during a LLFC pregnancy. We developed a novel, relationship-centered intervention, the Developmental Perinatal Parenting Intervention with Life-limiting Fetal Conditions (DPPI-LLFC), based on two theoretical frameworks and one concept, delivered separate from routine care. To assess whether the DPPI-LLFC is feasible and acceptable for the parents, interventionists, and research team. We also evaluate parents' experience of the intervention components and completion of measures. A single-arm pilot study of the DPPI-LLFC was delivered via telehealth. We trained 3 nurse interventionists (RN-Is) in the theoretical frameworks and intervention. Eligible participants were mothers continuing their LLFC pregnancy and their willing co-parents. RN-Is met with participants monthly throughout pregnancy and twice after birth. Participants completed mental health measures via online questionnaire. Fidelity was assessed across the study. 13 parents (8 mothers, 5 fathers) participated, with 92% retention. Intervention delivery via telehealth was feasible and acceptable by participants. Fidelity assessments resulted 100% inter-rater agreement; all DPPI-LLFC components were delivered as designed. Pregnancy anxiety decreased over pregnancy and participants reported low-moderate decision regret and grief intensity by the study's end. Participants reported the intervention being "meaningful and appreciated." The novel, telehealth-delivered DPPI-LLFC was feasible, acceptable, and valued by parents during their LLFC pregnancy. This intervention holds great promise for addressing PPC access and delivery challenges.