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

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.

An Integrated, Developmental Four-Year Medical School Curriculum in Palliative Care: A Longitudinal Content Evaluation Based on National Competency Standards.

BACKGROUND: While palliative care (PC) competencies for medical school graduates have been defined, the lack of established curriculum models and assessment tools hampers curricular evaluation. OBJECTIVE: To describe the scope and content of the University of Rochester's longitudinal, integrated four-year PC curriculum after 17 years of implementation, review student evaluative responses, and compare the curriculum to national competency standards. DESIGN AND SETTING: Combining and reorganizing a published PC curriculum assessment tool and a list of medical school PC competencies, we created a novel nine-topic framework to assess the content coverage of our curriculum. We queried our electronic medical school curriculum database and surveyed course and clerkship directors, as well as PC, pain, ethics, and humanities faculty, to locate where and when PC topics are taught and to collate student responses to these experiences. RESULTS: We present a comprehensive list of PC curricular activities over a four-year medical school experience. The curriculum covers all nine PC topics longitudinally in multiple formats. Five in-depth activities cover multiple PC topics in a format that integrates biological, psychological, and social dimensions; these activities have survived and evolved over 17 years in our setting. A majority of year 3 University of Rochester students feel "well" or "extremely well" trained in PC. CONCLUSIONS: Our four-year PC curriculum provides robust and developmentally appropriate training that addresses all nine evidence-based core topics for PC education. Medical student feedback and their Association of American Medical Colleges (AAMC) survey responses suggest that they find their PC learning experiences rewarding. This curriculum could serve as a model for other schools.

Parents' Experiences With Ultrasound During Pregnancy With a Lethal Fetal Diagnosis.

This longitudinal naturalistic study sought to describe parent experiences of ultrasounds during pregnancies with lethal fetal diagnoses (LFDs). We interviewed 16 mothers and 14 partners twice during pregnancy and twice after birth and death of their infant. Parents reported that ultrasound providers had a profound impact on their experiences with LFDs. Within three stages of pregnancy (pre-diagnosis, learning the diagnosis, and living with the diagnosis), themes of optimistic expectation, hearing bad news, need to know, and time with baby emerged. The dynamics of interactions with ultrasound providers included differing goals and expectations, and compatibility of interactions. These interactions were either satisfying or added to parents' burden. Ultrasound providers have the opportunity to share valuable knowledge and facilitate understanding and precious time with the baby. Providers of obstetrical care can improve communication with parents with LFDs at critical time periods by matching their interaction to parents' needs.