Addressing Health-Related Social Needs and Mental Health Needs in the Neonatal Intensive Care Unit: Exploring Challenges and the Potential of Technology
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Research Setting
2.3. Participants
2.4. Data Collection
2.5. Data Analysis
3. Results
3.1. Screening
3.2. Referrals and Care Coordination
3.3. Use of Technology
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A
- Can you describe your roles/responsibilities as a ______?
- What do you think are the main challenges to addressing HRSNs/parental mental health needs in (your role/setting)?
- How do you feel about assessing needs that you might not be able to help the family with, for example, housing?
- Do you think standardized screening for (HRSNs/mental health) should be implemented? Why or why not?
- How do you find out about the needs that the families might have? How do you coordinate or communicate identified needs to (other departments or specialties within the health system/community-based organizations)?
- How commonly are HRSN and parental mental health needs identified in (your setting)? What are some of the main HRSNs or mental health needs you see?
- How are needs documented (e.g., in the infant’s chart)?
- How are resources and support provided once needs are identified?
- o
- Is there any follow-up during the following visits? If so, how is that accomplished?
- Are there any challenges with families that do not have English as their first language?
- What do you think are the potential roles of technology in reducing the challenges of identifying, addressing, or coordinating the care of HRSN and parental mental health within the NICU and after discharge? Or do you have any concerns about how technology is being/may be used in this process?
- Do you know those in other roles who we might be able to talk to to learn more about NICU families’ experiences with (HRSN/parental mental health needs)?
- Is there anything we haven’t discussed that you would like to add?
- What HRSN or mental health needs do you assess for when you meet families?
- o
- Do all social workers conduct assessments in the same way or is there variability in how this is accomplished?
- o
- How do you learn about any new/developing needs families might have after the initial visit?
- If you make a referral where a family has to contact a community-based organization or service themselves, how do you obtain insight into the status of the referral?
- After discharge from the NICU, do families still reach out to you for support in navigating resources?
- o
- Do you have contact with the social worker that will be the next point of contact for the family?
- o
- Are there any difficulties families face after discharge that you are aware of?
- Are there any difficulties providing information about referrals to families, and do you know of any issues families face getting connected with organizations/services?
- How are parental mental health needs identified in the NICU? Does the social worker or do you screen for this?
- o
- Are families universally screened?
- o
- Are any specific tools used?
- o
- When is the initial screening and are there any follow-up screenings?
- How many of the NICU families do you typically meet? Are you able to meet all the families that need it?
- o
- If not all, how do you decide who is seen?
- o
- Is anything offered to families that you do not meet?
- Do you always meet with families in person or is there also a possibility for families to meet online?
- What happens at discharge? Are you still able to provide support for families or refer them to other mental health support programs?
- o
- Do you encounter any issues connecting families with outpatient mental health services?
- How closely do you work together with the social worker?
- o
- How much information is available to you about the HRSNs of a family?
- In your role, how do you usually hear about any health-related social needs or parental mental health needs for your patients? Do you usually hear about them from other NICU staff or do families often talk about these concerns in your interactions with them as well?
- Is there a formal moment where information is exchanged within the NICU staff about the HRSN or mental health needs of a family or infant?
- How does the support from social workers in the inpatient setting (e.g., NICU/PICU) compare to that of the outpatient setting?
- What proportion of NICU graduates are seen in the high-risk infant follow-up (HRIF) clinic?
- o
- What is the interval for HRIF visits?
- o
- What age are patients seen until or does it vary?
- Does any HRSN or parental mental health screening take place during HRIF?
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Institutions | ||
---|---|---|
CHOP 1 (n = 12) | CCHMC 2 (n = 5) | LPCH 3 (n = 5) |
Roles/Job descriptions (years in practice) * | ||
NICU care team:
|
Major Themes | Quotes |
---|---|
Screening with meaningful follow-up | “We screen for everything even if we don’t have a perfect solution because even if we can’t do anything about it, we are at least able to better understand that person and where that person is coming from. And maybe we can’t find them stable housing, but we can help them with [...] other things that might make the needs that they have less stressful.” (NICU social worker) |
Standardizing and streamlining the processes | “Needs or issues that arose within a NICU hospitalization [are documented] into the paperwork that families get discharged with. That hopefully then makes it to the primary care provider. [...] But you can already start to see that if you are dependent on documentation and a paper trail for families’ issues, there’s obviously gaps that emerge in terms of what we’ve discovered or worked on during the NICU and how that makes it into a primary care provider’s ability to continue to be aware of that.” (Physician-researcher) “Some of the screening measures I think aren’t validated to a NICU population [...] Certainly, parents who have a baby, there’s a certain level of anxiety, a little stress, depression that might come with that. You know, baby blues plus postpartum depression. But in the NICU, I mean, it’s a given, right? [...] Are you sleeping? Well, of course NICU parents are not sleeping, right? They’re concerned about their baby.” (NICU psychologist) |
Burdens resulting from the NICU experience | “What I’ve come to recognize as our parents are overburdened with a great amount of information, and their brains are in crisis and are in fight or flight so to expect to kind of go in initially asking all of these heavy questions, when their primary concern is just the safety of their baby. Or just kind of asking them what their primary concern is, helps with the Maslow hierarchy of needs, like whatever they feel is most important in this time is kind of the approach we need to have versus kind of our own plan that we would like to have our own agenda per se.” (NICU social worker) “Not everybody is here between 8:00 and 6:00. You know, people are working. They have families. You know, they may not be able to be here during working hours or during the weekdays. And we would miss that population. And if you think about it, those folks who are busy like that probably have a higher risk, right? Because they’re trying to juggle being at the hospital, working, other children. So you know that already puts them in the category of, you know, stressed.” (NICU psychologist) “The problem, of course, is that these families are in crisis, right? We tell them medical information and they don’t absorb it at all, like the next day you have to tell them the same thing again. And it’s just because they’re so stressed, they can’t remember it. Which is a benefit of having something digital, because then if they do find a moment when they are a little bit more calm and can deal with something they can go back to it.” (Neonatologist) |
Maintaining support and closing the loop | “We refer families to services all the time and have no idea what happened, no idea if they were connected, no idea if they got the service. And one of the things we’re trying to think about is, if a family comes in and they’re food insecure, for example, they need help with food resources and we connect them for SNAP issues, they apply for SNAP, and get food from the food pantries. How do we prevent them from two months later coming back and they’re still food insecure?” (Program Manager Community Health) “There’s usually a gap because a lot of the time social workers and providers aren’t going to make contact with the family until their first follow-up appointment. So if they’re being followed by neurology but they discharge and their first neurology appointment isn’t for three months, then they’re going to go that three months without really having anybody.” (NICU social worker) |
Expectations and reliance on the family | “I do try to still have some expectations of accountability for some of our families, because we can easily enable a lot sometimes and provide and provide to the point the child’s almost ready for discharge and there’s kind of this expectation of like, ‘Well, where am I gonna get my formula? Where am I going to get my diapers?’ [...] So we try to have a balance between assisting at this time of crisis for them, as well as still expecting some responsibility towards providing things for their child within reason.” (NICU social worker) “Sometimes I’m able to follow up [with the family] and know that they’ve utilized these resources. Otherwise, sometimes I just make the referrals and then it’s up to the family if they’re going to follow through with them or ultimately use them.” (NICU social worker) |
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van de Kamp, E.; Ma, J.; Monangi, N.; Tsui, F.R.; Jani, S.G.; Kim, J.H.; Kahn, R.S.; Wang, C.J. Addressing Health-Related Social Needs and Mental Health Needs in the Neonatal Intensive Care Unit: Exploring Challenges and the Potential of Technology. Int. J. Environ. Res. Public Health 2023, 20, 7161. https://doi.org/10.3390/ijerph20247161
van de Kamp E, Ma J, Monangi N, Tsui FR, Jani SG, Kim JH, Kahn RS, Wang CJ. Addressing Health-Related Social Needs and Mental Health Needs in the Neonatal Intensive Care Unit: Exploring Challenges and the Potential of Technology. International Journal of Environmental Research and Public Health. 2023; 20(24):7161. https://doi.org/10.3390/ijerph20247161
Chicago/Turabian Stylevan de Kamp, Eline, Jasmin Ma, Nagendra Monangi, Fuchiang Rich Tsui, Shilpa G. Jani, Jae H. Kim, Robert S. Kahn, and C. Jason Wang. 2023. "Addressing Health-Related Social Needs and Mental Health Needs in the Neonatal Intensive Care Unit: Exploring Challenges and the Potential of Technology" International Journal of Environmental Research and Public Health 20, no. 24: 7161. https://doi.org/10.3390/ijerph20247161
APA Stylevan de Kamp, E., Ma, J., Monangi, N., Tsui, F. R., Jani, S. G., Kim, J. H., Kahn, R. S., & Wang, C. J. (2023). Addressing Health-Related Social Needs and Mental Health Needs in the Neonatal Intensive Care Unit: Exploring Challenges and the Potential of Technology. International Journal of Environmental Research and Public Health, 20(24), 7161. https://doi.org/10.3390/ijerph20247161