title: Provision of Services in Perinatal Palliative Care: A Multicenter Survey in the United States.
abstract: BACKGROUND
  Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy affected by a life-limiting diagnosis.
  
  
  OBJECTIVE
  To examine characteristics of programs and services provided, assess alignment with the National Consensus Project domains of care, and identify providers and disciplines involved in programs.
  
  
  METHODS
  A cross-sectional survey design included 48 items addressing funding and domains of quality care.
  
  
  METHODS
  Program representatives from 30 states (n = 75).
  
  
  RESULTS
  Perinatal palliative care programs are housed in academic medical centers, regional or community hospitals, local hospices, or community-based organizations. Significant differences by program setting were observed for type of fetal diagnoses seen, formal training in communicating bad news to parents, mechanisms to ensure continuity of care, and reimbursement mechanisms. One hundred percent of programs provided attention to spiritual needs and bereavement services; 70% of programs are less than 10 years old. Follow-up with parents to assess whether goals were met occurs at 43% of the perinatal palliative care programs. Formal measures of quality assessment were articulated in 38% of programs.
  
  
  CONCLUSIONS
  This study dramatically adds to the literature available on perinatal palliative care program settings, types, and domains of care. It is clear that there are a variety of types of programs and that the field is still developing. More work is needed to determine which quality measures are needed to address perinatal care needs in this population.
authors.affiliation: 1 York College of Pennsylvania , York, Pennsylvania.
authors.forename: Charlotte
authors.initials: C
authors.lastname: Wool
authors.affiliation: 2 University of North Carolina Greensboro School of Nursing , Greensboro, North Carolina.
authors.forename: Denise
authors.initials: D
authors.lastname: Côté-Arsenault
authors.affiliation: 3 UNC at Chapel Hill, School of Nursing , Chapel Hill, North Carolina.
authors.forename: Beth
authors.initials: B
authors.lastname: Perry Black
authors.affiliation: 4 University of Rochester , Division of Palliative Care, Rochester, New York.
authors.forename: Erin
authors.initials: E
authors.lastname: Denney-Koelsch
authors.affiliation: 5 University of Illinois at Chicago College of Nursing , Chicago, Illinois.
authors.forename: Sujeong
authors.initials: S
authors.lastname: Kim
authors.affiliation: 6 Wayne State University College of Nursing , the Children's Hospital of Michigan Family, Community, and Mental Health, Detroit, Michigan.
authors.forename: Karen
authors.initials: K
authors.lastname: Kavanaugh
mesh_terms: D001601:Bereavement; D003422:Critical Care / Q000458:organization & administration*; D003430:Cross-Sectional Studies; D005260:Female; D046689:Fetal Mortality; D006801:Humans; D007231:Infant, Newborn; D010166:Palliative Care / Q000458:organization & administration*; D010290:Parents / Q000523:psychology*; D018743:Perinatal Care / Q000458:organization & administration*; D011247:Pregnancy; D011368:Professional-Family Relations; D011795:Surveys and Questionnaires; D014481:United States