African American and Latino bereaved parent health outcomes after receiving perinatal palliative care: A comparative mixed methods case study

African American and Latino bereaved parent health outcomes after receiving perinatal palliative care: A comparative mixed methods case study

Côté-Arsenault D; Denney-Koelsch E M; McCoy T P; Kavanaugh K

Applied Nursing Research

2019

Adult; Anticipatory Grieving; Anxiety; Bereavement; Blacks -- Psychosocial Factors; Comparative Studies; Depression; Descriptive Statistics; Female; Fetal Abnormalities -- Diagnosis; Funding Source; Health Status; Hispanics -- Psychosocial Factors; Human; Interviews; Male; Multimethod Studies; Palliative Care; Parental Attitudes; Patient Satisfaction; Perinatal Care; Perinatal Death -- Psychosocial Factors; Psychological Well-Being; Qualitative Studies; Quantitative Studies; Questionnaires; Scales; Self Report; Summated Rating Scaling; Surveys; Treatment Outcomes

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. This comparative mixed methods case study examined the person characteristics, quality of perinatal palliative care (PPC) received and parent health outcomes. 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. 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. 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. • The impact of race and ethnicity on response to perinatal loss is not well known. • Perinatal death can have long-lasting, negative effect on the parents' health. • Perinatal palliative care exists for fetal life-limiting conditions. • The majority of parents reported worsening or new health problems after the loss. • Parents found that perinatal palliative care greatly improved their experience.

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