Discharge from the Neonatal Intensive Care Unit (NICU) is a momentous and joyous event for families, however, it is also a marking of the next chapter in which parents transition to the primary caretakers of their complex infants at home. Becoming the primary caretaker of a complex infant often involves administering medications, closely monitoring growth and developmental status, transporting their infant to multiple specialty care follow-up visits, and in some cases, the management of medical technology in the home setting such as tracheostomies, mechanical ventilation, oxygen via nasal cannula, and feeding tubes (Toly et al, 2016; Patel et al, 2017). Increased survival of premature and critically ill infants to discharge can largely be attributed to advancements made in the arena of neonatal care over the past decade (Bowles, Jnah, Newberry, Hubbard, & Robertson, 2016; Wade et al., 2008), however, care advancements have led to a growing population of infants with severe cerebral palsy and pulmonary conditions (Purdy & Melwak, 2012) as well as a growing population of infants’ whom are dependent on medical technology at discharge (Bowles et al, 2016; Cristea, Carrol, Davis, Swigonski, & Ackerman, 2013; Seferian, Kackore, Rahman, Nassens, & Williams, 2006; Toly et al., 2016). The percentage of infants discharged to home dependent on technology from the NICU has not yet been reported (Toly et al, 2016), and little is known about the errors in homecare and healthcare utilization during the transition from NICU to home for high-risk infants (Patel et al, 2017). Literature on healthcare utilization rates of NICU infants post discharge has consistently documented high rates of rehospitalizations and emergency room visitations (Ray, Escobar, & Lorch, 2010; Smith, Hwang, Dukhovny, Young, & Pursley, 2013; Vohr et al., 2017), particularly within the first three months’ post discharge, and the first two weeks at home is denoted as being the most likely time for rehospitalizations (Boykova, 2016; Boykova & Kenner, 2012; Toly et al., 2016). These findings suggest that the transition to home may not always be an easy path for parental caregivers. It is important to note that studies have often excluded the sickest and most complex infants, such as those dependent on medical technology, in their analysis.
The aim of this study is to address this gap in literature and describe the experience of mothers’ in caring for an infant dependent on medical technology during the immediate post discharge period from the NICU. A fundamental qualitative descriptive design as described by Sandelowski (2000, 2010) was implemented to conduct in-depth interviews with mothers whom are the primary caretakers of their technology-dependent infants at home. Recruitment is currently in progress via snowball sampling and online recruitment from NICU mother support groups on Facebook. Recruitment will continue until data saturation has occurred, with a goal of approximately ten participants. Participants will complete an audio recorded semi-structured interview over the phone or audio web-conferencing system entitled Zoom, as well as a demographic form about themselves and their infant. Inductive qualitative content analysis will be used to summarize interview data and will result in major themes which describe the mothers’ experiences during the immediate post discharge period. Describing the experience of mothers’ caring for their technology-dependent infant in the first few weeks’ post discharge from the NICU can help healthcare providers to bolster discharge teaching within the NICU, as well as provide insight into potential interventions to increase caregiver support and guidance in the community.
