{"title":"Parenting Support Intervention During Pregnancy With a Life-Limiting Fetal Condition: A Pilot Study","authors":"Denise Côté-Arsenault PhD, RN, CPCLC, FAAN , Samah Hawsawi PhD, RN , Erin Denney-Koelsch MD FAAHPM , Kathie Kobler PhD, APRN, PCNS-BC, CHPPN, FPCN, FAAN , Kimberly Spence MD","doi":"10.1016/j.jpainsymman.2025.03.002","DOIUrl":null,"url":null,"abstract":"<div><h3>Context</h3><div>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.</div></div><div><h3>Objectives</h3><div>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.</div></div><div><h3>Methods</h3><div>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.</div></div><div><h3>Results</h3><div>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.”</div></div><div><h3>Conclusion</h3><div>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.</div></div>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":"69 6","pages":"Pages 633-640"},"PeriodicalIF":3.5000,"publicationDate":"2025-03-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of pain and symptom management","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0885392425005391","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
Context
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.
Objectives
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.
Methods
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.
Results
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.”
Conclusion
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.
期刊介绍：
The Journal of Pain and Symptom Management is an internationally respected, peer-reviewed journal and serves an interdisciplinary audience of professionals by providing a forum for the publication of the latest clinical research and best practices related to the relief of illness burden among patients afflicted with serious or life-threatening illness.
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