Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study

Approximately 10 % of infants in the United States are hospitalized in the neonatal intensive care unit (NICU) [1, 2]. These infants often join the population of children with “medical complexity” [3, 4]. Medical complexity has been classified using the Pediatric Medical Complexity Algorithm (PMCA) into 3 groups, “complex chronic disease, noncomplex chronic disease and not chronic disease” [5]. Families caring for high-risk infants face multiple challenges in meeting their child’s health needs, which are pronounced in underserved populations. For example, Hispanic and Black families are less likely to be referred to high-risk infant follow up programs [6] and Black families are five to eight times less likely to follow up at the 24 month visit in early intervention programs [7]. Disparities in transition-to-home and follow-up for families who have limited English proficiency and/or are minorities or low-income exist and may be reduced by engaging families in the process of re-designing transition of care from NICU-to-home [3, 4, 8‐10].

A recent publication in Pediatrics, “Building systems that work for children with complex health care needs,” [11] outlines the importance of involving families “on the front lines” in the designing of the care-coordination of a high-risk infant [12]. The use of family expertise is essential to improving health care delivery [13]. However, only a few studies have engaged low-income, minority and/or non-English speaking families in this process to understand their perspective [14‐16]. Some issues that families have previously identified were a lack of awareness of community resources, fragmented service lines, and provider organizations varying in their ability to meet linguistic and cultural needs of different individuals and families [17‐22].

While there have been studies published on caregiver perceptions of transitioning to home in older children from the medical or surgical unit of a hospital [23, 24] and from the NICU with a more homogenous sample, [25] there has been little published on transitioning infants with medical complexity home from the NICU at a safety net hospital. Our research question was, “What ideas do families with infants with medical complexity (many of whom are low-income and/or minorities) have to support parents in the transition to home from the neonatal intensive care unit (NICU) at a safety net hospital?” To better understand the perspectives of families regarding follow up after NICU discharge, in this qualitative study, [1] we explored domains such as caring for the infant at home including how health care is received and perceived and challenges and ideas to support transition from NICU-to-home and [2] examined if they differed by medical complexity.

We conducted in-depth interviews with families enrolled in Medicaid after NICU discharge to better understand what challenges and ideas families had to facilitate complex transition for this vulnerable population. With our findings, we highlight the importance of families’ viewpoints on transition and discharge. Families often compare their preterm or high-risk infant to their peers, and mothers feel great anxiety and stress perhaps compounded by postpartum depression. However, families often found hope and resilience in peer support and cited that in addition to health literacy, interventions using mobile health technology and respite/nursing care could better support families after discharge. We also identified that there are different subthemes and constructs that are valued by families with and without children with medical complexity.

The first theme, comparison to “normal babies” identified in our cohort is comparable with several other studies in different populations. Families repeatedly expressed concern about their child as “more fragile” to a healthy term peer and this concept has been generalizable across socioeconomic status [3, 28, 32, 33]. There has been other literature to suggest that this comparison may affect how parents view their feelings of discharge readiness and capability to take care of a child with advanced medical needs. While not observed in this study, there may also be more pronounced feelings of mistrust and disparities in minority families accessing multidisciplinary services such as a medical home, [34, 35] which may further encumber these families, and further investigation is needed. Special attention should be paid to these families to optimize communication with primary care providers and discharge readiness [2, 36, 37].

Mothers who participated in the study also pointed to stress, sadness, anxiety and even depression when taking care of their infant. The literature is ripe with evidence to support that postpartum major depressive disorder (MDD) is pervasive (1 in 5 women) [38] and magnified in mothers of preterm infants, and our findings suggested that women in our sample might be dealing with similar issues [38‐41]. Hawes et al. identified that “three potential risk factors for postpartum depressive symptoms include: history of maternal mental health diagnosis, social factors, and perception of readiness at NICU discharge” [38]. The US Preventive Services Task Force and several states have recommended and/or mandated screening for MDD [42]. While detection has improved, maternal outcomes have not because of low rates of treatment engagement [43]. We would suggest integrating mental health referrals early in the index (NICU) hospitalization and perhaps using the venue of a high-risk infant follow up program to assess adherence for mental health follow up.

As is true with many other populations of children with special health care needs, our families were looking for gains in health literacy and knowledge. Unique to our population, is that they are either first-time parents or “first-time parents with children with advanced medical needs,” and they want to learn the “language” of medicine to communicate with their providers. Moreover, fragility in such an insecure medical state may heighten concerns that parents are experiencing. Several studies have examined the disparities in outcomes with parents who are less health literate in pediatric diabetes clinics, emergency departments, or primary care [44‐46] and in families of preterm infants [47]. By providing parents with more tools about the medical care of their infant and referrals for social services early in transition to home and thereafter, we may empower families and improve infant outcomes [48].

Families looking for support systems have been a common theme in other populations of children with special health care needs, such as cancer, developmental delay, and autism [49, 50]. Parents in our study were seeking communities that have experienced the same journey as they have. A handful of studies have examined the role of social media websites and forums and their impact on parenting and help-seeking behaviors [49, 51]. For example, Thoren et al. evaluated the content of communication in 1497 Facebook communities dedicated to preterm infants and found that “information sharing” (31%) and “interpersonal support” (53%) were the most common purposes of use of the Facebook groups [52]. Similarly, another study queried families about what content they would share on social media and 79% answered that they would be interested in joining a “native-language online networking site providing: (1) general information on prematurity, (2) explanations of abbreviations commonly used in a hospital setting, and (3) details of common medical problems and the treatment thereof, including the availability of local therapists and follow-up services” [53]. Social media might be particularly useful for fathers as a platform to discuss their concerns and gain emotional support in future studies [54]. It also might be useful for families with CMC to also have similar supports for family members.

Leveraging technology into discharge planning such as mobile health (mHealth) applications, telemedicine, video chat and patient portals may enable follow up in a more flexible manner. This may suit the needs of minority and low-income families who often face additional barriers, such as language, transportation and cultural differences, to attend prescribed follow up. For example in our population, more than half of participants were traveling more than 20 miles for their follow-up appointment. Alderdice et al. recently published a study that reviewed potential websites that families found useful after discharge home [55]. A recent meta-analysis suggested families have generally accepted mHealth interventions while in the NICU [56] which may be translated to the outpatient settings as well. Other studies have supported the use of webcams in the NICU and videoconferencing with families at home [57, 58]. Despite the confines of income, 100% of our participants owned and regularly used a smartphone or tablet with Internet access. Therefore, incorporating discharge materials into a mobile web-based platform may streamline and facilitate follow up. While designing such interventions, we must consider access to service and shared cellphone use and perhaps consider a hybrid program that integrates in-person navigation as well.

Families also cited the importance of a high quality transition or “hand-off” to their pediatrician. Caregivers of infants, especially those without medical complexity in our sample, thought that the communication with the pediatrician in transition is very important and felt more satisfied when the pediatrician was familiar with their child’s case. Some novel ideas that have been published include the feasibility of a cloud-based care plans for providers and families. Desai, et al. found that providers were amenable to participating in these types of coordination [59] and this might be ideal for infants transitioning from several types of NICUs (community based, children’s hospital, etc.) to a primary care provider.

The difficulty of enrolling in financial assistance programs such as supplemental security income (SSI) and transitional aid to families was also salient in our sample. Low-income families who have children with special health care needs still rely on SSI. Several high-risk infants meet criteria by diagnoses (cerebral palsy, stroke or weight/gestational age) and parental income [60]. Several studies have demonstrated that income assistance for families in poverty with children with mental health and disability is crucial for improved outcomes [50, 61‐65].

This study also provided some insights on how transition can vary by medical complexity groups. For example, for families with infants without medical complexity, the importance of “hand-off” or communication with the primary care provider was weighted as most valuable. For families with CMC, more information on durable medical equipment, and vendors was useful. Similarly, while both groups appreciated support systems, families with CMC wanted more integration of family. “Tiered quality improvement” efforts for NICU to home transitions based on medical complexity might maximize quality and resource utilization [23].

This study has several limitations. The sampling was purposeful to enroll families receiving Medicaid from a high-risk infant follow up program in an urban quaternary children’s hospital that serves low-income and mostly minority families, so its generalizability may be limited. Therefore, concerns of families with private health insurance are not represented. These families face their own burdens with increased out-of-pocket expenses from medications, medical equipment or even high deductible health plans and separate studies should be conducted to gain their viewpoints [66, 67]. We did, however, reach thematic saturation suggesting that we met the needs of our target population but we mostly recruited low-income Hispanic and Black non-Hispanic families. Values may vary in other racial, ethnic and socioeconomic groups [4]. Finally, since individuals who may have also provided clinical care for the infant in the NICU or clinic conducted some of the interviews, there is a possibility that participants were not as open or honest with their responses.

Interestingly, similar to other studies [68], we found that there were similarities between what families cited as challenges and what they recommended as suggestions for improvement during the transition process. We found that families often compare their preterm or high-risk infant to their peers, they and mothers feel great anxiety and stress perhaps compounded by.

postpartum depression. However, we identified several ideas that families themselves proposed to improve follow up after NICU discharge including peer support, health literacy, mobile health technology and respite/nursing care. To address the chasm in current healthcare delivery for this population, interventions that might be successful include the development of technologies such as mobile health applications to create “a patient-centered medical neighborhood,” [4] integration of social workers in the care team, in-person visits with community health workers and group visits [4]. Like other transition-to-home programs we believe that these types of interventions may also provide cost-savings [69].