This study evaluates parents’ and health care providers’ (HCPs) descriptions of hope following counseling of parents at risk of delivering an extremely premature infant. Data came from a longitudinal multiple case study investigation that examined the decision-making and support needs of 40 families and their providers. Semi-structured interviews were conducted before and after delivery. Divergent viewpoints of hope were found between parents and many HCPs and were subsequently coded using content analysis. Parents relied on hope as an emotional motivator, whereas most HCPs described parents’ notions of hope as out of touch with reality. Parents perceived that such divergent beliefs about the role of hope negatively shaped communicative interactions and reduced trust with some of their providers. A deeper understanding of how varying views of hope might shape communications will uncover future research questions and lead to theory-based interventions aimed at improving the process of discussing difficult news with parents.

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Objective To better understand preferred approaches that health care professionals could employ when caring for parents who are at risk for giving birth to an extremely premature infant. Methods Women who were at high risk of having a periviable birth were recruited from three tertiary care hospitals with Level 3 neonatal intensive care units. These women, as well as their partners, physicians, and nurses underwent structured interviews both before and after delivery. Interviews were analyzed for advice that was provided to health care professionals who could be involved in the future counseling of antenatal patients at high risk of periviable delivery. Results Forty women, 14 fathers, and 52 health care providers participated in the interview process. Two main themes were identified – namely, the fundamental importance of information provision and support. Nevertheless, although all participants agreed about the importance of these actions, several areas of discordance among participants were noted. Nearly one-third of parents emphasized the importance of “hope”; 60% and 45% recommended the provision of supplementary written and internet materials, respectively. In contrast, most health care providers expressed the importance of “objectivity,” and only 15% and 5% thought written or internet materials, respectively, were desirable, given the concern that supplementary information sources could be misleading. Conclusion Both patients and providers agree about the centrality of information provision and emotional support for women at risk for periviable delivery. This study not only elucidates preferred approaches and methods by which this information and support could be optimized, but also shows pitfalls that, if not avoided, may impair the relationship between provider and patient.

Objective-To describe nurse behaviors that assisted parents to make life support decisions for an extremely premature infant before and after the infant's birth.Design-Qualitative, longitudinal, collective case study where interviews were done pre-and postnatally and medical chart data were collected.Setting-Interviews were conducted face-to-face in a private room in the hospital, in the mother's home, or over the telephone.Participants-A sample of 40 cases (40 mothers, 14 fathers, 42 physicians, 17 obstetric nurses, 6 neonatal nurses, and 6 neonatal nurse practitioners) was recruited from three hospitals that provided high risk perinatal care. Parents were at least 18 years of age, English speaking, and had participated in a prenatal discussion with a physician regarding treatment decisions for their infant due to threatened preterm delivery. Physicians and nurses were those identified by parents who had spoken to them about life support treatment decisions for the infant.Methods-Using a semi-structured interview guide, a total of 203 interviews were conducted (137 prenatal, 51 postnatal, and 15 end-of-life). For this analysis, all coded data related to the nurse's role were analyzed and summarized.Results-Parents and nurses both described several nurse behaviors: providing emotional support; giving information, and meeting the physical care needs of mothers, infants, and fathers. Physicians' description of the nurse behaviors focused on the way nurses provided emotional support and gave information. Conclusions-Nurses play a critical role in assisting parents surrounding life support decisions.Keywords decision making; role of nurses; parent support; life support decisions Life support decisions for infants surrounding a pregnancy with a threatened preterm delivery between 22 and 25 weeks gestation remain challenging for parents and clinicians (Batton, 2009;Chiswick, 2008). Despite the gains in survival rates of preterm infants from 1965 to 1995, the rates have not improved in the last decade (Meadow & Lantos, 2009 1. Life support decisions for infants surrounding a pregnancy with a threatened preterm delivery between 22 and 25 weeks gestation remain challenging for parents and clinicians. 2.For both parents and nurses, providing emotional support was the most commonly reported way that nurses assisted parents during decision making.3. Parents reported that nurses played a very important role as parents were making critical decisions.NIH Public Access

The recruitment and retention of research participants always presents challenges to researchers. This process is made more complicated when the research being undertaken is socially sensitive and the populations of interest are considered vulnerable. The purpose of this article is to illustrate how Swanson's middle-range theory of caring can be used as a framework for recruitment and retention for studies on sensitive topics that involve vulnerable participants. We provide an overview of the theory as well as illustrations from three separate studies that involved in-depth interviews with vulnerable participants. These studies included parents who had either experienced the death of their infant or were involved in life support decisions because of potentially giving birth to an extremely premature infant (22-25 weeks gestation). Keywords neonatal care; recruiting vulnerable populations; Swanson's middle-range theoryRecruiting and retaining vulnerable populations for sensitive research presents ethical challenges for researchers. Three ethical principles should guide research: respect for persons, beneficence, and justice (Thomas, 2005). These principles are particularly salient to recruitment and retention processes with vulnerable participants because of the delicate balance between protecting potential participants from harm and allowing them to make autonomous decisions about participation in research. Efforts to enroll participants are enhanced by anticipating and planning ahead for potential problems (Burr, 1996) and allocating adequate resources towards recruitment (Hogue, Johnson-Leckrone, & Liddle, 1999). When conducting research it is of paramount importance that participants' well-being takes precedence at all

Many infants die immediately prior to birth or in the neonatal period; thus, it is imperative that we begin to recognize the importance of integrating palliative care into pregnancy and the immediate newborn period. While advances in perinatal care have changed the decisions parents face when they receive a diagnosis of a life-limiting or life-threatening condition, the importance of perinatal palliative care has only recently been recognized as a viable option for care. Perinatal palliative care emphasizes the importance of planning for the limited amount of time families may have with their baby. This article provides a brief overview of perinatal palliative care, with a focus on who may benefit, the goals of care, and what services are provided. There is also a review of current palliative care programs and a discussion of how nurses can become more involved in this much-needed area of infant care.

The support needs for adults with intellectual disabilities will change over time, particularly at the end of life. There are some areas, such as removing barriers to providing services, staff training, partnerships between agencies and palliative care providers, and advocacy, where further research may help to improve the end-of-life care for adults with intellectual disabilities.

Parents who are at risk for giving birth to an extremely premature infant, defined as 22 to 25 weeks' gestation, can find themselves faced with urgent treatment decisions for their unborn infant that have life-altering consequences. Despite the recommendation for involving parents in decision making for these infants, there is limited evidence regarding guidelines for involving parents. In this article, we describe a case from a larger collective case study that examines the decision making and the decision support needs of parents regarding life support decisions made over time (prenatally and postnatally) for extremely premature infants from the perceptions of parents, physicians, and nurses. For this case study, we describe decisions that were made during the antenatal hospitalization of the mother whose infant was stillborn, the support the parents received, and advice for healthcare professionals for improving care to families. For this case, the mother and father, a physician, and 2 nurses were interviewed before the birth of the infant. The findings in this case study demonstrate the importance of the nurse being present when information is given to parents, of informing with compassion, and helping parents to understand treatment options and decisions.