Background: Death of one's infant is devastating to parents, negatively impacting couple relationships and their own health. The impact of a prenatally diagnosed life-limiting fetal condition (LLFC) on parents of minority status is unclear.
Aim: This comparative mixed methods case study examined the person characteristics, quality of perinatal palliative care (PPC) received and parent health outcomes.
Methods: Bereaved couples, 11 mothers and 3 fathers of minority or mixed races (11 African American and Latino, 1 White Latino and 2 White parents) completed the survey; 7 were interviewed.
Results: Parents rated their general health close to good, physical health close to normal but mental health lower than the population norm. Clinical caseness (abnormal levels) of anxiety were reported in 50% of parents whereas depression scores were normal. The experience of fetal diagnosis and infant death had a negative impact on the health of 40% of participants however, parents could not identify what specifically caused their health problems. Most were satisfied with their PPC but some shared that original providers were not supportive of pregnancy continuation. After the baby's death, 71% reported closer/stronger couple relationships. Two contrasting cases are presented. Once parents found PPC, their baby was treated as a person, they spent time with their baby after birth, and found ways to make meaning through continuing bonds.
Conclusion: Despite high overall satisfaction with PPC, bereaved parents were deeply impacted by their infant's death. Mixed methods case study design illuminated the complicated journeys of parents continuing their pregnancy with a LLFC.
Keywords: Bereaved parents; Health outcomes; Minority parents; Perinatal loss; Perinatal palliative care.
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