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

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 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

Parental decision-making for medically complex infants and children: An integrated literature review

“…Parents needed to know the benefits and adverse effects of treatments (Einarsdottir, 2009) with ample time to ask questions (Kavanaugh et al, 2010). Parents sought and/or relied on the HCPs’ knowledge and opinion about which treatment options were best for the child (Bluebond-Langner et al, 2007; Partridge et al, 2005; Rempel et al, 2004; Sharman et al, 2005) and what scientific evidence supported the efficacy of the treatment (Ellinger and Rempel, 2010; Rempel et al, 2004).…”

“…Initially objective and neutral communication from HCPs left parents feeling that HCPs had little hope of a positive outcome (Payot et al, 2007; Rempel et al, 2004). The lack of hopeful communication led to a strained relationship between the parents and HCPs because parents were still hoping for their child to be cured of the illness, while they thought providers had ‘given up’ (Kavanaugh et al, 2010). Opposite assessments of hope can create mistrust between parents and HCPs, which leaves parents to advocate for their child by protecting against the perceived negative recommendations of HCPs (Kavanaugh et al, 2010).…”

“…Parents relied on HCPs to have their child’s best interest in mind and thus valued the opinion of the HCP. Parents determined what was in the child’s best interest by parental knowledge of their child and the illness (Boss et al, 2008; Michelson et al, 2009), and their experience with their child (Kavanaugh et al, 2010; Lan et al, 2007). Parents considered what they would want if they were in the same situation (Sharman et al, 2005).…”

Influences on Decision Making Identified by Parents of Children Receiving Pediatric Palliative Care

“…For example, parents of infants in the NICU have been asked to identify behaviors of nurses that helped to support their decision making (emotional support, provision of information, and the physical care of the infant and family emerged as important factors) (Kavanaugh, Moro et al 2010). A survey of neonatology fellows found that 40% had had no formal training regarding how to communicate effectively with parents having to make medical decisions (Boss, Hutton et al 2009).…”

End-of-Life Care in the Neonatal Intensive Care Unit: Experiences of Staff and Parents

“…As in our study, recent articles of parental experiences cited nurses as the caregivers providing the most emotional support through this process. 12,[30][31][32] This support often comes in the form of memory making and bereavement support. The parents in our study stressed importance of these areas of palliative care.…”