Infant mortality (IM) rates in the United States over the past 2 decades have been higher than those of other industrialized nations.1,2 High rate of IM, defined as death prior to the first birthday, is a negative population health indicator.3 Infants classified as non-Hispanic Black (NHB) or African American have the highest rates of death among all US groups.3,4 Infants born prematurely are among those at highest risk for IM and NHB or African American women deliver premature and small for gestation infants at rates higher than all other US racial/ethnic groups.5,6 Preterm infants are commonly cared for in the neonatal intensive care unit (NICU) immediately after birth and nurses have an important role in preparing parents for care at home after discharge. The purpose of this study was to explore the factors related to perceived parental readiness to assume care for their Black preterm infant after NICU discharge.

BACKGROUND

The United States reported the 2018 rate of death as 5.79 per 1000 live births for all races; rates for NHB infants were 11.21 per 1000 live births, as compared with 4.87 for non- Hispanic White infants.2,7 The disparity between IM rates for NHB infants and that of all other races remains constant across age groups and time.6,7 Preterm birth/low birth weight persists as the second leading cause of IM for all infants in the United States; however, prematurity is the leading cause of death for Black infants at a rate of 2.51/1000 live births.2,5 There are numerous factors that influence the lives and health of minority infants between NICU discharge and their first birthday, many of which are directly associated with social, economic, and educational characteristics of the parents.8

The revised Kenner Transition Model, a situation-specific theory that identifies 5 interrelated domains of parental need after NICU discharge, was the theoretical framework guiding inductive data analyses for this study.9-12 The NICU nurses' role in preparing parents to become primary caregivers at home for a preterm infant is a nursing care priority as home care is likely to be more complex than that for a term infant.13-15 Nurses teach parents about their preterm infant's physiological or developmental aspects using methods that are understandable for the parents.16-19 Parents of a preterm infant are at risk of experiencing adverse outcomes after discharge home in part because of the delayed initiation of the caregiver component of their parent role due to their infants' hospitalization.12,18,20,21 Parent-reported readiness for NICU discharge is multifaceted but is related to information received from healthcare professionals as well as active, individualized learning opportunities pertinent to their preterm infant15,21 (see Figure 1)

Figure 1. Revised Kenner transition model. From Boykova et al.

There are social and economic implications of parent transition readiness for the role of primary care giver of their preterm infant after NICU discharge. When high-risk infants are transitioned home in the care of parents who have not been fully prepared for their care, monitoring, and health maintenance responsibilities, then increased utilization of healthcare resources such as emergency department or urgent care visits and potentially rehospitalization results.12,22,23 Readmission to the hospital within 30 days of discharge is considered a negative quality indicator for hospitals and in the instance of preterm infants discharged from the NICU, it may also be an indicator of inadequate caregiver transition preparation.12,24,25

METHODS

A descriptive qualitative design was used to add to knowledge about the factors affecting perceived readiness for discharge from the NICU by parents of Black preterm infants. The study aims were as follows: (1) elicit parents' perceptions prior to NICU discharge about their infants' health and of factors affecting their confidence and ability to provide home care for their preterm infants; and (2) describe relationships between parental perceptions of infant health and discharge readiness with both infant and parent characteristics prior to NICU discharge. Qualitative descriptions were elicited through structured interview questions. The Krippendorff26 sematic content analysis technique was used for coding of transcribed interview responses and field notes.27,28 First-level codes were derived directly from parent responses; these codes were then combined to create second-level codes that were aligned with the revised Kenner Transition Model domains.11,12 Code matrices were created for analysis of parent data individually and by couple to identify patterns of parents' coded responses. The discharge teaching questionnaire and the parent and infant demographic data were analyzed using descriptive statistics.

Instruments

The structured interview guide used for this study and derived from the Kenner model employed 4 open-ended questions: (1) please share your description of the health of your baby; (2) share your perceptions about expected changes in your family or daily routines when your baby comes home; (3) describe what you have done to prepare for your baby at home after NICU discharge; and (4) describe what NICU healthcare providers have done to help or hinder you in preparing to care for your baby at home), and 2 multiple-choice items querying parental perceptions of their infants' fragility and their confidence to care for their baby after discharge. Quantitative data were derived from the Quality of Discharge Teaching Scale (QDTS), an 18-item scale that elicits parental opinions on discharge teaching using an 11-point scale (0-10); previously reported reliability for the total scale was [alpha] = .88.15

Sample/setting

The study convenience sample comprised 10 custodial parents (older than 18 years) of NHB (maternal classification) preterm (birth gestational age: 24-34 weeks) infants, admitted to a level IV urban NICU with an expected length of stay of 14 days and more between November 2017 and December 2018. The study-site NICU within a pediatric specialty hospital is in the US mid-Atlantic region. Excluded from participation were nonparental caregivers, non-English-speaking parents, and parents of infants with congenital abnormalities.

Procedures

The principal investigator screened for eligible study participants via communication with NICU case managers and charge nurses. Both parents were invited to participate and consented by the principal investigator within 72 hours before expected NICU discharge. All interviews were conducted by the principal investigator, face-to-face, via telephone, or written responses by parental preference; audio-recorded interviews were transcribed verbatim. The total number of families screened for participation was 29; ineligible (n = 1); active decline (n = 6); passive decline (n = 3); and missed (n = 11). This study was reviewed and approved by the study organization's nursing research advisory committee and institutional review board.

RESULTS

The study sample of 10 parents representing 8 NICU families included 1 father and 1 adoptive couple with 2 White mothers. The parents' ages ranged from 24 to 49 years with 5 reporting high school education, being partnered or married, and college education. Five families reported having 1 or more older children, for 8 total siblings with ages ranging from 10 months to 12 years, living at home. Six of the 8 infants began oral (po) feedings at a mean age of 9 weeks (range: 5-11 weeks). One infant was directly breastfed, and this occurred for the first time 17 days after the first po feeding; this was also the only infant with a diet of more than 50% breast milk at discharge (see Table 1).

Table 1. Sample demographics

Aims

The inductively derived codes were organized into 3 code families: Parent Protector of Infant Health; Hindrances to Parental Readiness for NICU to Home Transition; and Parent as Partner in NICU-to-Home Transition, each based on the interview questions. The code family "Parent Protector of Infant Health" represented the parents' recognition of their infant being fragile, needing special safeguarding by them and their need for knowledge to safely assume the role. This code family was derived from quotes contributed by 8 of 10 parents interviewed; however, more than 64% of the quotes within this code family were contributed by 3 mothers; 53.9% of the contributory quotes were from parents whose age was below the aggregate mean of 32 years. The "Hindrances to Parental Readiness for Transition" conveyed parents' beliefs that information from healthcare professionals could be incomplete, purposefully delivered with a negative demeanor, and even withheld in a manner that was interpreted as judging or biased to the parent. "Parent Partner in Transition" in contrast represented the positive impact of healthcare professionals who provided explanations, demonstrations, information, and encouragement, and were viewed as willing, available, and planning with the parent without judgment. Both code families had quotes contributed by all 10 parents; the majority (90%) contributed by 4 mothers in the "Hindrances" family and 83% contributed by 7 mothers in the "Parent Partner" family (see Table 2).

Table 2. Codebook

Parents younger than the mean age (32 years) contributed 81% of quotes within the "Hindrances" code family and 45.6% of the quotes for the "Parent Partner" code family. The lone parent in this study, whose infant was still receiving breast milk at discharge, was also the youngest and expressed her perception of a lack of support for her as a breastfeeding mother, as well as coercion for bottle/formula feeding (see Table 3).

Table 3. Code matrix

The first 6 items on the QDTS are paired for parental ranking of content needed versus content received; in this study, there was an aggregate mean deficit of 1.9 in scores for content receipt compared with perceived need. The remaining 12 items focused on content delivery; mean score for parents in this subscale was 6.82. The maximum score for the QDTS is 10; only 1 parent scored in the low range (<4) and 2 parents in the high range (>8). Parents' mode ranking was 10 (frequency range: 2-8) for all except 4 items on the QDTS; 2 items (information to family and decreased anxiety) had a zero-mode ranking (range: 2-3). The parents in this study who were older (>32 years) had the highest scores both overall and within the content delivery subscale. These findings are aligned with the "Information Needs" and "Professional Support" domains of the Kenner Model (see Table 4).

Table 4. Quality of Discharge Teaching Scale

DISCUSSION

In this study of parents of Black preterm infants, the key findings specific to readiness for discharge were related to communication, information sharing, and partnership with professional staff in the NICU, both supportive and nonsupportive. The challenges of the NICU experience for parents (isolation, powerlessness, anxiety) are well documented with recommendations (family-centered care/decision making) based on current evidence that may prove useful in reducing the burden on parents and other family members.29-32

The first code family, Parent Protector of Infants' Health, was conceptually defined by 94 second-level codes that together convey the parents' worries about the infant's fragility and susceptibility to illness and their need to be the ones that shield the infant from health threats. Parents' additional worry about not being adequately prepared for this role of protector is an additional element of this code family. Importantly, these second-level codes were reported concurrently by all 10 participating parents and are consistent with findings in the literature about parents of NICU infants who describe feelings of stress, anxiety, and separation related to their hospitalized infant.29-34 These specific parental concerns about the preterm infants' increased risk for illness suggest that parents in this study were aware of at least one of the major morbidities related to preterm birth.33-35

The second code family "Hindrances to Parental Readiness for NICU-to-Home Transition" with 97 second-level codes that represent the parents' experiences of barriers, stress, miscommunication, and alienation primarily with the NICU healthcare team. These experiences are counter to the stated needs of parents in this study to be partners with the NICU team (seen as the experts) in the care of their infant. Interestingly, the literature does not offer much in the way of evidence to support these experiences as they relate to interactions with the NICU staff; NICU parents experiencing stress, alienation, or frustration have been reported as challenges of the NICU environment.30,34-36 Parental perceptions of hindrances to their confidence and/or readiness to provide care for their preterm infant at home after NICU discharge were most frequently related to communication with the healthcare team and the anticipated time commitment of home care.37,38 This attention to optimal communication practices yields positive results for parents as well as providers by decreasing many potential areas of conflict during a child's hospitalization.38,39 In the current study, commentary by NICU nurses and parents about strained interactions, as documented in field notes, may indicate that communication between some NICU staff and parents was negatively impacted by assumptions, biases, and mistrust. Implicit or unconscious biases are defined as thoughts, attitudes, and ideas that are outside conscious awareness; systematic reviews of healthcare providers' racial/ethnic implicit biases in both the United States and the United Kingdom found population concurrent rates of negative attitudes toward people of color versus positive attitudes toward Whites.40,41

Parental preferences for information and resource sharing by the professional staff in the NICU as well as by family, friends, and parent peers were categorized by all parents in this study as facilitators of transition readiness from the NICU. The importance of parental engagement in the planning and knowledge seeking relative to the healthcare needs of their baby is supported in the literature as an indicator of bonding between the baby and the parent as well as with improved outcomes for the children.30,33-35 Parents in this study identified nurse facilitation of caregiving activities for their baby while in the NICU as important to their feelings of readiness for discharge. Feeding has been described as an important parent role development and bonding activity by NICU parents with emotional, intellectual, and physical components,33,34,42 and was cited by this group of parents as a facilitated activity example.

The parents in this study were moderately satisfied with the delivery of discharge teaching according to their mean QDTS scores for the content delivery subscale. Parents in this study identified consistent gaps in their perceived needs for discharge education versus the education/information received; the questions related to need for information regarding the care and medical needs of the infant after discharge had the highest mean QDTS scores and the largest mean differences with the scores for information received. The consideration of all parents as partners in the care planning and provision for preterm Black infants may require education and training for NICU staff in unconscious bias, emotional intelligence, and the core elements of family-centered care, which all contend that active participation by parents is imperative for optimized infant outcomes.37,40-51

Implications for practice

The principles of family-centered care45-49 were expressed by parents in this study; for 3 parents, their dissatisfaction was related to perceived lack of respect of the parent voice, failure to collaborate, honor diversity or individual family strengths, policy inflexibility and inconsistent sharing of information, and resources and support by the professional NICU staff. The satisfied parents in comparison expressed perceived partnership, support, and abundant resources available from the professional NICU staff. The central components of effective "patient-provider communication" outlined in the conceptual framework by Epstein and Street49 are easily identified in the descriptions by 6 parents in this study as well as the failed application as described by 3 parents in this study with negative experiences. Communication with healthcare providers is a major aspect of the patient and family experience and it was also implicated as a factor in the trust or lack thereof for parents with hospitalized children.45-47 Disparately low health outcomes and patient satisfaction have been identified as arising with greater frequency from healthcare organizations serving lower-income and/or high-minority populations. Implicit bias has been shown to impact clinical decision making, resource allocation, and patient/family interactions resulting in inequities in care based on race, ethnicity, age, gender, sexual orientation, or socioeconomic characteristics.40,41,50-52 Healthcare providers can actively engage in education and training to ameliorate the negative impacts of discrimination and bias on health outcomes.51,52

Discharge teaching for parents may require an increase in interactivity to appeal to adult learners with varying levels of literacy43,53 The "Baby Steps to Home (BSTH)" weekly group discharge education at the study site was attended by 8 parents in this study; organized NICU discharge teaching that is also family centered and individualized47,54,55 has been perceived as helpful by parents and staff alike. Interactive teaching methods such as simulation, teach-back, and return demonstration are amenable to implementation with NICU parents.54,55 Nurses in the NICU will require support via education and training on evidence-based methods for parent education and communication and secondarily, with time to effectively provide discharge education for parents.

Research implications

This study's purpose reflected the paucity of nuance and specificity as it relates to health outcomes research for Black families in general and particularly Black infants. There has been a reductionist bias in the literature related to minority populations wherein researchers ask questions and analyze data with assumptions that reinforce the stereotypical categorization of entire minority groups; this reflects both structural racism (racial inequities in access to financial, housing, education, legal, and health resources) and implicit bias.40,41,56 This study examined the concept of transition readiness among a small group of parents; however, there is a need for exploration of differences in parental perceptions of readiness linked with first-year outcomes for NHB infants born preterm. Future research is needed to determine relationships and the specific factors that contribute over time to overall parental readiness to provide care, health and feeding decision making, and infant-/family-risk profiles after NICU hospitalization.47,53-55 Parents' identification in this study of the importance of information and partnership with the healthcare team offers opportunities for future research on education interventions for both parents and NICU staff.

Secondary to an understanding of the differences and similarities between NICU parents of all races and ethnicities as well as the outcomes for their preterm infants will be the development and study of parental education and support interventions to foster improved outcomes for NHB infants in the United States.2,5,47,55-57 The findings in this study of parental perceptions of NICU professional support may indicate that there is a need for an examination of the healthcare communication disparity and implicit biases that goes beyond race to explore other environmental, social, and economic factors.57,58

Limitations

Limitations of this study included a small sample size with few fathers secondary to challenges with recruitment at the single study site as well as the high refusal (31%) and missed (38%) rates wherein timing was the reason for most missed opportunities and parents most frequently cited for refusal. The structured analysis approach limited exploration of some themes related to parent experience. The single study time-point did not allow for exploration of infant outcomes or parent perception changes after NICU discharge.

CONCLUSION

The small group of NICU parents in this study were aware of the risks to their Black preterm infant posthospital discharge but overall were confident in their abilities to mitigate those risks for a positive infant outcome at home. Communication with the healthcare team as a full partner in the care and planning for their preterm infant was important for parents in this study. The parent responses related to transition readiness and care confidence focused on the need for, the use of, the availability and accessibility of, and the trustworthiness of health information. The disparate IM outcomes experienced by US Blacks have implications for nursing in terms of clinical practice, education, and research.

References