Story by Sophie Raphael
Children with ventilator dependence use a machine to breathe when they cannot breathe on their own. Those children may have a variety of conditions, though most children who need a ventilator were born prematurely. Children living with ventilator dependency often can live at home safely with the proper support. However, doing so often requires home nursing to support complex needs at home, and difficulty accessing home nursing has proven to be a barrier that can keep children in the hospital far longer than is medically necessary.
C3EN Pilot Awardee Sarah Sobotka, MD, MSCP, Associate Professor of Pediatrics at the University of Chicago, specializes in children with medical complexities, specifically children with ventilator dependency. Sobotka says she did not expect for her research to lead her down the path of home health nursing but was steered in that direction due to the significant challenges it presents for families. “What I have been struck by through a lot of my studies where I have gotten the opportunity to engage individually with families is that the challenge of staffing nursing is really on the shoulders of families,” she says. “They often are in the position of reporting back to agencies about the quality of the nursing they’re receiving, they often provide training to home nurses… [and] they take an incredibly active role to recruit their own home health nurses.” Factors such as racial/ethnic background, socioeconomic status, health literacy, and being a single parent can make it harder for parents to complete the complex task of hiring home nurses. “There was certainly what seemed to be a pattern in that less-resourced families were less likely to be able to tap into all of those other resources to build home nursing teams, so my hypothesis was that that meant that these families were disproportionately stuck in the hospital and less supported by home health nursing.”
Getting children out of the hospital as soon as it is medically appropriate is crucial for their development and wellbeing. “Children are missing out on developmental opportunities, and they’re separated from their families,” Sobotka remarks. Children with ventilator dependence are often in the hospital for months on end, and some have never lived at home. “Home is where kids should be, home is best, but when you have medical needs, even if they can be met in the home setting, if we aren’t able to provide them in the home setting, then kids are basically being held in the hospital.” This is not only a disservice to the child, but it can prevent other children from accessing the care that they need. “They’re sitting in hospital beds that perhaps other children need, and they may not be able to access healthcare because the beds are being utilized by children that could be home if we had more supportive home nursing programs.”
Sobotka’s Pilot Award study, “Disparities in Home Nursing for Children with Invasive Mechanical Ventilation: Identifying National Trends and Piloting a Parent-to-Parent Intervention in Chicago” has two main components. The first component compares the length of hospital stay and usage of home health nursing among Hispanic and Black children to that of Non-Hispanic White children. The second component assesses the efficacy of a parent-to-parent coaching program, in which experienced family members of ventilator-dependent children who have successfully navigated home nursing and hospital discharge provide guidance to parents of children awaiting hospital discharge.
While families of ventilator-dependent children often have access to a social worker or case manager who can provide support and guidance, Sobotka hypothesizes that the support of other parents who have been through the same thing may be more valuable to parents. “What I hear time and time again when I talk to families is that the lived experience of having parented a child on a ventilator… really cannot be replicated. You might graduate from the best social work school… and you still don’t have that lived experience,” Sobotka explains. “Parents can really understand the experience of being a parent having done it themselves, not only in general but also in the same region because this is a local study, so the parents and coaches are working in the Chicagoland area… far superior to a care coordinator or social worker who is unlikely to have had that lived experience.”
Emma Lynch, a clinical research coordinator at the University of Chicago, works as a one of the coaches for the study. Lynch’s sibling is ventilator-dependent and has had home health nursing for most of his life. When working with families, Lynch’s approach varies based on the family and their needs. “We are trying to empower parents to do this themselves. Sometimes it’s really just a little bit of moral support,” she says. Sometimes this means being present on calls with care coordinators to answer questions. “A fair number of our families are single moms, and they’re in the hospital getting all of this information from their care coordinators and the hospital staff, and they’re trying to absorb everything,” Lynch explains. “Sometimes we focus on nursing–the different aspects of finding and dealing with home nursing–but sometimes what we do is really just be there with them while they’re on the phone with their care coordinator. When they hang up the phone we process the phone call together:‘Do you have any questions about what your care coordinator just talked about? Do you know what your next steps are to communicate with them or your potential new nursing agency?’ Because it’s a lot, and it’s confusing,” Lynch concludes.
For the past seven years, Sobotka has collaborated with the UIC Division of Specialized Care for Children (DSCC), which is dedicated to coordinating care and connecting families of children with special needs to essential services and resources. The DSCC has played a crucial role in assisting Sobotka’s study with recruitment efforts. “[The DSCC] has a staffing support specialist who we get all of our referrals from, so what she does at DSCC is get connected with families when they are having difficulties related to finding home nursing. If she has a family that she knows fits our criteria, the care coordinator working with the family will give them our information if the family expresses interest. We then reach out to them, introduce the program, and potentially get them involved.” This has been particularly valuable for the study since the DSCC is a statewide program, which allows the study to recruit participants across various different hospitals rather than being confined to the University of Chicago, where Sobotka runs the study. “It’s been a really supportive relationship,” Lynch notes.
While the study is in its preliminary stages, Sobotka is already encouraged by the results she is seeing. “I think we do have preliminary evidence that this is more effective than the status quo. Families overwhelmingly are very grateful for the support they received,” Sobotka asserts. She clarifies that the program does not involve getting rid of any existing support, simply adding more support in a different format: “These are families that are enrolled in DSCC, they have an assigned care coordinator, sometimes they have a care coordinator even through other clinical programs they are in and yet they described that these parent coaches provided them with valuable information and support which was unique.”
In some cases, the results of this program have been immediate. “We have also learned along the way that sometimes the support that’s provided can provide families with nursing coverage immediately. I can think of a family that had been without coverage for a long time and we came in with a novel perspective and brought some of the care team together and they were able to get a home nurse in a very short amount of time that was able to give mom a break from her caregiving activities.” Sobotka looks forward to continuing to tailor this approach to help more families with ventilator-dependent children to flourish at home.