Training of Nurse Interventionists to Optimize Intervention Fidelity in a Telehealth Pilot Study.

Interventionist training and on-going guidance by the research team are essential in psychosocial interventional research to ensure fidelity. Consistency in delivering an intervention requires recruiting interventionists with well-aligned clinical experience, developing a replicable training process, and reassessing ongoing intervention fidelity using an assessment tool of observable behaviors that are essential to the intervention. This paper describes one research team's experience of hiring and training nurse interventionists to deliver a theory-based, telehealth psychosocial intervention for a single-arm pilot study.

Life-limiting fetal conditions and pregnancy continuation: parental decision-making processes.

Objectives: When parents are facing a life-limiting fetal condition (LLFC), decision making about prenatal and neonatal care is very stressful. To participate in successful shared decision making, interdisciplinary care teams need to understand factors that parents consider and the process by which they make decisions about care of their baby.

Methods: This study reports on findings about parental decision making from a larger longitudinal, naturalistic study of parents' experiences of continuing pregnancy with an LLFC.

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.

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.

Teaching the Art of Difficult Family Conversations.

Context: Difficult family conversations are a challenge for even the most seasoned clinicians. Teaching the skills of successful communication between providers, family members, and patients is a vital component of medical education. However, traditional teaching methods using didactics and expert role modeling are often inadequate.

A Survey of Perinatal Palliative Care Programs in the United States: Structure, Processes, and Outcomes.

Background: Perinatal palliative care (PPC) programs are proliferating nationwide, but little is known about their structure, process, or desired outcomes, to inform future program development.

Objective: To explicate structure, processes, and outcomes of PPC programs, specifically how they coordinate care and manage goals of care meetings, as well as providers' perceptions of the most beneficial components of care and their expected care outcomes.

Design: Free-text response data were taken from a 48-item online survey organized around the eight domains defined by the National Consensus Project for Quality Palliative Care (NCP).

"Have no regrets:" Parents' experiences and developmental tasks in pregnancy with a lethal fetal diagnosis.

Significance: Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered.

Methods: This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis.

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.

Provision of Services in Perinatal Palliative Care: A Multicenter Survey in the United States.

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.

We want what's best for our baby: Prenatal Parenting of Babies with Lethal Conditions.

This article reports on qualitative research into the experience of couples who chose to continue their pregnancies after receiving a lethal fetal diagnosis, and to embrace the parenting of their baby in the shortened time they have. This analysis of interview data is part of a larger research project describing parents' experiences of continuing pregnancy with a known lethal fetal diagnosis (LFD).

"My baby is a person": parents' experiences with life-threatening fetal diagnosis.

Diagnosis of a lethal fetal diagnosis (LFD) early in pregnancy is devastating for parents. Those who choose to continue with the pregnancy report intense emotional reactions and inconsistent, often insensitive treatment by health care providers. This qualitative descriptive study sought to clarify the experiences and needs of families in order to design responsive perinatal palliative care services, and to establish the feasibility and acceptability of conducting intensive interviews of pregnant women and their partners during their pregnancy with a LFD.