Components of Perinatal Palliative Care: An Integrative Review

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.

Grasping the meaning of perinatal palliative care for the multiprofessional team

“…This is because the creation of memories, which is important at times like these, occurs with the constant presence of the family, either in the maternity or in the NICU. 11 …”

“…In the last decade, the field of research related to PC in neonatology was on the rise worldwide. 11 A recent analysis that aimed to quantify admissions eligible for PC among hospitalizations in neonatal units in England and Wales identified that at least 2% of the babies needed PC proven by the categorical criteria of the British Perinatal Medicine Association, and that most of them survived until the moment of hospital discharge. 12 In Brazil, the centers that have sections that offer PC have grown gradually in recent years, 13 and, in 2019, had about 190 registered services, an increase of 8% compared to 2017; still insufficient, however, to place Brazil in the group of countries with better level of coverage in PC.…”

“…In the maternal-child area, parents and NB are currently the focus of attention of PC, but it is necessary to advance in supporting the multidisciplinary team that provides assistance to this population group. 11 This study is justified by the importance of discussing the PC with the care practice of the multidisciplinary team and intends to answer how the multidisciplinary team perceives the care of pregnant women with fetal abnormalities and the neonates of poor prognosis and their family members. The objective of this study was to grasp the meaning of perinatal palliative care for the multiprofessional team.…”

Parents’ hope in perinatal and neonatal palliative care: a scoping review

“…Neonatal-Perinatal Palliative Care is a complete, multidisciplinary approach to providing comprehensive care to families when there is a potentially life-limiting, serious or clinically complex fetal or neonatal diagnosis (from 22 gestational weeks to 28 weeks after birth) to relieve pain and control symptoms and improve the care quality and well-being of fetuses and infants, their families and health care providers involved. It is holistic, family-centered, comprehensive, and multidimensional, so it addresses not only the physical aspect but also the psychological, social, and spiritual dimensions [ 2 , 10 , 11 ].…”

“…Concerning eligibility criteria, in this study, the definition of populations in need of perinatal and neonatal palliative care was adopted [ 2 , 10 , 11 ]. The criteria were families or parents facing a condition in which there is a lethal diagnosis in the prenatal or neonatal period or a diagnosis for which there is little or no prospect of long-term survival without severe morbidity or extremely poor quality of life and for which there is no cure [ 2 , 10 , 11 ].…”