Introduction
Background
Parents’ experiences of the NICU
Adolescent parents’ health care experiences
The NICU care context
Methods
Aims
Research question
Design
Participants
Data collection
Introduction: In this interview I will ask you questions about your professional experiences caring for young parents with newborns in the NICU | |
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Questions | Prompts/Probes |
I’d like to start by having you tell me a little about yourself and role | PROBE re: aims of care PROBE re: how are parents referred to your services? PROBE re: how many young parents? |
From your perspective as a care provider what are your observations of the challenges experienced by the parents of any age when their baby is admitted to NICU? | PROBE re: how does this affect the parent (physically, mentally etc.)? |
From your perspective what are the unique challenges for an adolescent parent with a new baby in the NICU? | PROBE re: how do challenges impact experiences? |
What are the challenges for providers caring for young parents and their infants in the NICU? | PROBE re: how do you have to adapt the care/services you provide to a young parent/infant? |
What is something you or your organization does well in supporting young parents in the NICU? | PROBE re: are there areas that could be improved PROBE re: additional supports needed |
If you could design the best possible program or services to support young parents to successfully navigate NICU admission and transition-home, what would it look like? | PROBE re: what would be helpful? PROBE re: who should be involved in this care? PROBE re: where/how should this support happen? |
Ethical considerations
Data analysis
Rigour
Results
Influence of NICU care context
“Time is not fair in the NICU”
And time in the NICU is not fair. I have the skill set and the ability to help these moms, but with all of the other constraints and the acuity that's happening, you just you can't do it. And I think that's a really hard spot to be in as a nurse and a provider, because we're not providing these families, especially young families, with the care they deserve.
Privacy
And I think they often see a lot of other things happen in the NICU that even if their baby's stable another baby they've gotten to know may not be. And so, I think just there's a whole lot of feelings that come with that. The guilt that someone else struggled more in the NICU or just a feeling of fear. They have to get that off their chest and process a little bit.
Rules and routines
I know a lot of [adolescent parents] ... their supports aren't necessarily immediate family. So, it may be friends, cousins ... what not. And here in our NICU there are specific visiting guidelines, so only parents and grandparents. So, I have seen that being a bit of a barrier where perhaps a friend is a support person ... exceptions are of course made, but I think that's a potential barrier to some of these girls and not feeling confident or having that assertiveness to say 'this my support ... I don't have a relationship with my mom ..
And so, I think sometimes there's rigidity around our routines and what we do, which I think can impair that trust, because I think that it sometimes doesn't feel to families like we're really family-centred. I think we say that we are. But in a lot of ways, I'm sure it doesn't feel like that to families.
Factors that limit parental access and engagement
I think travel is a really big one because here in [region] we have one centralized NICU now. And I know staff will say, like, you know, 'this mom ... she hasn't been coming in...', but is she is not able to get in? Does she not have money for a cab? She doesn't drive. She lives 45 minutes away from the hospital. How is she going to get there and how can we support her in getting there? I think that's a really big barrier.
Sometimes I think we do see families that maybe don't visit as much as we think that they should. And I think for a lot of families, that can be because they just may not even feel comfortable in the environment. They may not feel like they're welcome there. So, we might see that they're more absent than we would quote “expect them to be” with their infant in the NICU.
NICU experience and its potential impact
“A Traumatic experience”
And that's the other thing that I've felt my whole career ... if you have a baby, you remember forever having the baby in an intensive care unit. And so, whether your baby was born really preterm or the baby had transient tachypnea and was not particularly sick ... I think that it is just as traumatic … it doesn't matter how sick you were, forever you will remember that you had a child in the NICU, and that's traumatic.
A lot of the NFP clients, you know, they've gone through some kind of trauma. So, dealing with all that social piece, and then on top of that if you were to have the NICU experience, depending on how that journey was … is an added stress to their life.
Impact on attachment
I think one unique challenge, because of the forced separation there—it's getting [adolescent parents] to commit to come back for the variety of reasons while baby is admitted ... the importance of them being there as often as they can [especially for] attachment, baby's physical stability and growth and development. So quite often there's a little bit more health teaching that must go into that to encourage them to be there [in the NICU] because I guess just developmentally, they might not be ready to commit that amount of themselves without a lot of extra support.
So, I can only imagine ... [the young parent has] to sit there and watch someone else do it [provide infant care] with such confidence. You know, kind of watching the nurses do everything for [their infant] that I can't help but wonder if that impacts their bond or the attachment with their baby from the beginning.
Impact on parenting confidence and competence
I think [there are] a lot of expectations that parents will be able to competently perform tasks like checking the baby's temperature or changing the diaper or calming the baby down. But we don't always step back to think, “Have we really walked a parent through how to do this when their baby is intubated or really sick?” You know, there's a bit of that fear, I think, from parents and I'm not sure we're always good at coaching them through it.
[Adolescent parents] are placed in the NICU environment. It's very sterile. It's very regimented in what happens when … and [adolescent parents] don't necessarily know what to do ... it's reflected poorly upon them in charting, and to the physicians.
Impact on mental health or emotional well-being
Yeah, I think that's not just the young ones, I think that's for everybody. And the push is not just the mental health issues, it's mental health issues when, you know, you've just had a baby, you're stressed and that kind of thing. It's just heightens everything. I honestly don't think we do great with that … I think one of the things we probably don't do as well as we could is supporting moms with mental health issues.
This mom did so well in the hospital. I can't even think of something that was really challenging except for what was going on emotionally. So, I did long visits sometimes at the hospital with her. But I was mostly supportive, listening and, you know, supportive guidance with her and reassuring her.
“Treated differently”
I've found as well ... just kind of the treatment of some of the younger girls is not necessarily the same as if they were a 30-year-old, educated individual ... [they are judged on their] outward appearance, involvement on their phones, the way they even interact with the babies.
Discussion
Expanding the NICU interprofessional team
Trauma- and violence-informed care in the NICU
TVIC Principles | Actions supporting Trauma- and Violence-Informed Care in the NICU |
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Understand trauma and violence on peoples’ lives and behaviours | • Provide staff education on trauma, violence, and its effects with a specific focus on the families and communities the NICU serves • Provide staff education related to the principles of trauma- and violence-informed care • Promote staff understanding of the parent/family experience of the NICU through sharing resources, workshops, and listening to the voices of parents |
Create emotionally and physically safe environments | • Ensure welcoming and comfortable physical environments with an emphasis on both physical and emotional safety • Perform a trauma walk-through of the NICU and surrounding spaces • Provide access to food, water, and basic personal care items for parents in the NICU • Review policies and procedures to ensure alignment with trauma- and violence-informed care principles |
Foster opportunities for choice, collaboration, and connection | • Support parents’ choice in determining their support person in the NICU • Create routines based on parents’ preferences where possible rather than unit/provider preference (e.g., care routines, rounds) • Encourage models of care that focus on hands-on care by parents with support by nurses and NICU staff |
Provide a strengths-based and capacity building approach to support client coping and resilience | • Support parents in recognizing their own strengths and self-care strategies • Provide sufficient time and resources to support meaningful engagement between NICU staff and parents |