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Components of Perinatal Palliative Care: An Integrative Review
Laure Dombrecht1, Kenneth Chambaere1, Kim Beernaert1
1End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, 1090 Brussels, Belgium.
Insights
Perinatal palliative care (PPC) supports families facing severe diagnoses. While many components exist, robust evidence on PPC effectiveness is currently lacking, highlighting a need for more research.
Area of Science:
- Perinatal medicine
- Palliative care
- Healthcare systems research
Background:
- Perinatal palliative care (PPC) offers crucial support to infants, parents, and healthcare providers following severe prenatal or postnatal diagnoses.
- Existing PPC programs require a systematic overview to understand their effectiveness and core components.
Purpose of the Study:
- To conduct an integrative and systematic overview of the effectiveness and working components of existing perinatal palliative care (PPC) programs.
- To identify components of care within current PPC initiatives and evaluate their impact.
Main Methods:
- An integrative literature search was performed across six major databases (MEDLINE, Embase, CENTRAL, CINAHL, PsycInfo, Web of Science).
- Included studies examined the effect of PPC versus regular care or described components of existing PPC programs.
- PRISMA guidelines were followed, with three independent authors reviewing 21,893 identified records, ultimately including 69 publications.
Main Results:
- Only 12 publications (17.4%) reported on the effect of PPC programs; the majority were descriptive (program descriptions, guidelines, case studies).
- Outcome measures targeted four key areas: care coordination, parents/family, fetus/neonate care, and healthcare providers.
- Analysis revealed components related to hospital policy changes and direct care for the fetus/infant, family, and healthcare providers.
Conclusions:
- Perinatal palliative care is an expanding research area, currently dominated by descriptive studies and guidelines rather than efficacy trials.
- A comprehensive list of potential PPC components was identified, useful for developing future global initiatives.
- Despite proof of concept in some areas, a substantial evidence base to confirm the effectiveness of specific PPC components is still needed.
Abstract:
When a severe diagnosis is made before or after birth, perinatal palliative care (PPC) can be provided to support the infant, parents and involved healthcare providers. An integrative and systematic overview of effectiveness and working components of existing PPC programs was needed. An integrative search was conducted in MEDLINE, Embase, CENTRAL, CINAHL, PsycInfo and Web of Science. Study designs examining the effect of PPC compared to regular care, and (empirical) articles describing the components of care included in existing PPC initiatives were included. Three independent authors reviewed titles, abstracts and full texts against eligibility criteria. PRISMA guidelines were followed; 21.893 records were identified; 69 publications met inclusion criteria. Twelve publications (17.4%) discussed the effect of a PPC program. Other publications concerned the description of PPC programs, most often by means of a program description (22/69; 31.9%), guidelines (14/769; 20.3%) or case study (10/69; 14.5%). Outcome measures envisioned four main target categories: care coordination, parents and family members, care for the fetus/neonate and healthcare providers. No trials exist to date. Analysis of working components revealed components related to changes directed to the policy of the hospital wards and components involving actual care being provided within the PPC program, directed to the fetus or infant, the family, involved healthcare providers or external actors. PPC is a growing research field where evidence consists mainly of descriptive studies and guidelines. The extensive list of possible PPC components can serve as a checklist for developing future initiatives worldwide. PPC includes several important actors: the fetus/infant and their family and included healthcare providers on both maternity and neonatal wards. This leads to a large variety of possible care components. However, while some studies show proof of concept, an evidence base to determine which components are actually effective is lacking.
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