RESEARCH
How Nurses Assist Parents Regarding Life Support Decisions for Extremely Premature Infants

https://doi.org/10.1111/j.1552-6909.2010.01105.xGet rights and content

ABSTRACT

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 semistructured 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 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.

Section snippets

Types of Treatment Decisions

Life-support treatment decisions involve prenatal decisions regarding pregnancy management, delivery, and immediate care of the infant, and postnatal decisions for life support for the infant, including decisions for end-of-life care. Mothers at risk for delivering between 22 and 25 weeks may have several options for medical treatment, which will differ based on the individual case, such as the exact gestational age of the infant and the condition of the mother and of the infant (Batton, 2009).

Method

The current study was descriptive, prospective, and longitudinal and used a qualitative case study approach. Collective case study is a way to examine a number of cases within a study (Stake, 1995). The goal of qualitative case study research is to seek an understanding of the case, particularly the complexity of its interactions within its contexts, as well as the interrelationships that exist among all cases. In this article, we present study findings related to the nurse behaviors that

Description of the Sample

A total of 40 cases were recruited. For these 40 cases, participants included: a total of 54 parents (40 mothers, 14 fathers), 29 nurses (17 obstetric, 6 neonatal, 6 NNP), and 42 physicians (3 obstetricians, 19 maternal-fetal medicine physicians or fellows, 20 neonatalogists or fellows). Of the 40 cases, only 21 fathers met eligibility criteria for the study. Of these 21, 14 were interviewed and 7 were not able to be interviewed. Demographic characteristics of the parents, nurses, and

Nurse Description of Their Behaviors

Providing Emotional Support. Most nurses reported that they assisted parents by providing emotional support. Nurses provided emotional support by (a) taking the time to listen, (b) forming a bond with the mother, (c) being nonjudgmental of the parent lifestyle or decision choices, (d) offering hope, and (e) giving spiritual support. These behaviors helped mothers get through the emotionally charged nature of their experience and were done to decrease their stress and to help them comprehend all

Physician Description of Nurse Behaviors

The physician descriptions of the ways that nurses assisted parents surrounding decision making were limited. A number of physicians described how the nurses were there to provide emotional support and assist them to understand information. According to several physicians, nurses provided emotional support by talking to parents and just “supporting them.” One physician even described how nurses offered to travel to a family's home to bring a mother to the NICU because she had no way to get to

Discussion

Parents reported that nurses played a very important role as they were struggling to understand information and make critical decisions. This finding is similar to other research (Kowalski et al., 2006, McHaffie 2001, Wocial 2000). In addition, parents and nurses reported similar nurse behaviors, which suggests that both have similar expectations for the role of nurses. Although the same degree of comparison cannot be made with the physicians' reports because of limited data, these seem to be

Conclusion

Nurses play an important role in assisting parents surrounding decision making for life support for their extremely premature infant. By providing parents with quality care, support, and information, nurses create the context that is needed to facilitate and support parental decision making.

Acknowledgments

Funded by the National Institutes of Health, National Institute of Nursing Research, Grants R0107904 and P30 NR010680.

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