Exploring Stress and Coping in Caregivers of Children with Pulmonary Vein Stenosis: A Mixed-Method Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Inclusion Criteria
2.2. Recruitment and Enrollment
2.3. Qualitative Interviewer
2.4. Data Collection
2.4.1. Quantitative Data
2.4.2. Qualitative Data
2.5. Analysis
2.5.1. Quantitative Data
2.5.2. Qualitative Data
2.5.3. Mixed Method
3. Results
3.1. Participant Characteristics
3.2. Parenting Stress, PIP Survey
3.3. Coping Behaviors, CHIP Survey
3.4. Qualitative Themes from Caregiver’s Interviews
3.4.1. Medical Diagnosis and Hospitalization
“I am pretty sure they were just going to send us home on hospice. They didn’t really say that, but I think um, they didn’t give us a plan. […] So, we asked if we could get other opinions, and it was interesting, they were like well yeah, we can do that we can send your stuff over to Texas and Boston. And we were like, okay? Why do we have to drag our feet, and why did we have to ask. So, I don’t know.”
“We are sitting here, nobody knows what to do, they are addressing like if she is safe right now, is she okay right now, like ICU stuff. But you can tell no one, there, we felt like we were being avoided.”
“[…] anytime that the team changes the anticipation of a new attending, the anticipation of like a weekend or a holiday, or knowing that the people that know [patient name] are not going to be in the hospital […]”
“I take advantage of Christina in the hospital but mostly out of the hospital too. […] I have her on text and that’s incredibly helpful to us. Even if I have a little question or I’m like, kind of worried about something and I have her, I have her when I’m sitting right here. I have her when I’m sitting on my couch.”
“[…] we just came back through the emergency department after talking to Christina um and then we were whisked away into the ICU. […] Christina became very, very active because at that point we understood it was PVS, right, and I would say that if not for Christina I wouldn’t have the understanding of one, what the impact is today, but two what the plan is and what the progress has been. She has been instrumental in kind of being our north star in this.”
“It is never having me going to Boston Children’s that is giving me the anxiety, it is the travel because we fly. A lot of equipment. We love Boston Children’s, I don’t understand why it is like, frustrating where we live, … we live near those big teaching facilities, and so it is very frustrating that we cannot receive our care locally.”
“It has been a steep like learning curve as far as like understanding just some of like the general like anatomy components of PVS, and then along with like what it means for him and what like why it’s a problem and all the different things that it affects as far as like his clinical signs go, and like how to tell if it’s getting worse or like what to look for and like, but like all the things like it was just a lot of learning and a lot of trying to like understand all these like different acronyms.”
3.4.2. Family Unit and Lifestyle
“So, she, you know maybe up to about a year old so six months ago we had to feed her kind of you know every, every three hours and it’s not you know taking a bottle down in 15 min. It’s using the G tube, the pump, and that things running over an hour and a half and so was a year of, someone’s up, you know turning that thing on, turning that thing off through all hours of the day.”
“Like my relationship with my husband had been strained for a little bit, because it was like he was afraid to take care of her for a while, and I would get frustrated because then it meant that I really had no break. But he got better now, um, so that was an issue for a little bit. But then I tried to give him and myself some grace that we are taking care of a- we are doing nursing tasks, and we have zero formal education. But it has definitely gotten better.”
“Yeah, so we have, my mom and siblings, and my in-laws, my mother in-law, and my husband’s siblings have all been our main team. They are the ones over time we have trained them to care for [patient name]. They are our only babysitters basically. We can leave the kids with. That is a little stressful because we have not gotten a babysitter. There has not been a comfortable like, ok we are comfortable with them. And it is interesting even like now as normal as she is, you still have thought of I need someone to know her well enough to call me and say something is not right. Or you know something is weird with her breathing, or she is acting different than she normally does. So we have pretty much stuck with like our family for most of our community.”
“…school started here two or three weeks ago so all the schedules got flipped. Whether it’s dance, gymnastics, and soccer. And then all the speech therapy, OT, piano, all of it shifted. And so, now it’s also okay, it’s um, it’s harder because with a kiddo with PVS, even a healthy kiddo with PVS, you’ve got three more therapies a week. And you got all these other complicated things that you are working through. And so now, I am grinding my teeth at night, and um, not sleeping well, um, and I know that while it is stressful for most parents with back to school, there is a lot more irons in the fire with a kiddo with PVS. So…”
“And then I think the other part of it that really affects it for us is having [sibling name] at home and like trying like, I don’t want to leave [patient name] on the good days ‘cause I want to be around for the good days, but I also know I‘m never going to leave on a bad day, so it’s like really trying to balance that. Are we in the right headspace to be good parents […]?”
“[…] It is extremely hard to explain to your daughter and she is like, well nothing is wrong with my heart right? And you know [child’s name] gets to miss school because she has to go to all these different doctor’s, and she is like well why does she get to miss school. […] So, it is hard to explain to her all that, but it is also hard to explain to the other child like oh you may die one day. It is extremely stressful to live a normal life with your kids, there is jealousy, there is jealousy in every family. But this is like way more than that, way more complex, so that has been hard.”
“I didn’t go back to work for two years. Um, she was just too sick and I needed to be home for her and be her caregiver. Which is totally fine. That is like in my mind, a blessing that I could do that. I don’t take that for granted, but it certainly shifted, you know, there is no income for me. And we are spending more money anyways. So it was kind of like, okay? And you are in survival mode for a while that you just buy food and buy what you need, and you can’t even think about budget because you are just surviving this time…”.
“[…] the stress of my husband keeping his job just for the health insurance. We didn’t really have that stress before, we just always used common sense.”
3.4.3. Mental Health and Coping
“Um, for me I stay at home with the kids. And he works full-time and another part-time job because I am not working. For me being at home was all for doing meds and feeds and all that kind of stuff, was completely incapacitating. Um, I could not take care of myself. Um, it is very emotional [begins to cry], very heavy. Probably the lowest of my life.”
“I saw a psychiatrist before I had [patient and patient sibling name], but more so after I had them, um to get on medication. Because I was just so tearful, I would cry at the drop of a dime. Um, even now when like, we go to the doctor, to the hospital, I am just in shambles because of everything.”
“OK so you’re geared up for this trip you’re going to California right? Sunny skies, it’s gonna be beautiful, you might catch some waves, go out and get some dinner, maybe you went to Napa, I don’t know, and you get on the plane and you’re like this is awesome like I’m ready for California. And you know, you land, get out, walk off the tarmac and imagine you’re in Antarctica. That’s our journey, right? Like from expecting to have a healthy child and you’re ready to take that trip of a lifetime and you get out and you’re in somewhere else that you didn’t even expect you were going to be. That’s the analogy that I tell people.”
“So, for me I think the moments that are most difficult are hearing the bad news. And you know I’m sure that you’ve gathered this from other folks that you’ve spoken with, but it’s, there’s a roller coaster ride to this thing, right? And so, you’re getting good, we’re getting good news at many moments in time and then there’s like oh two steps forward three steps backward, oh it’s the oh it’s back, and so those are the moments where it’s like just deflating.”
“But PVS, it’s like cancer of the heart. It keeps coming back and keeps coming back. And um, that’s just in the acute phase, um where you are fighting for your child’s life. And for us that was a hard two years. Um, the third year we were starting to exhale a bit, and since then its yeah, mental health has been more about coping and finding our ways to, I would say, breathe every day. Um, but to gain a sustainable lifestyle.”
“I make sure that I shower every day. It’s the simple things. Take a shower, turn your music on, wash off the day, reset. That even when we were in the hospital, I was like I must shower because once I get into the cycle of not showering, that depression is a snowball effect.”
“I was very interested in if there was a home nurse that could come and stay while we were to grab dinner or something. But we didn’t qualify because [patient] was on a g-tube and oxygen and they felt that was I don’t know what the correct terminology is, where she was not easy enough to qualify, like with a trach or something more extensive and she would qualify for it, and I was like in my mind of course I understand that, but selfishly I was like I would like a break too.”
“We have a home nurse that comes and helps us with [patient name]. And she does respite care, and she is also a great third set of eyes on her breathing, and all of her stuff, but um, so she takes that over, but also I can release that which is great. So, I am not the only one carrying that from day to day. And that is hard to have a medically fragile kiddo, and so to have someone who you can hand that over and release being a nurse and just be a mom. So, um, that is a huge stress relief.”
“We never qualified for nursing care in the beginning because she only had a g tube. And I kept saying like I am a nurse, I can do these things, I don’t really need somebody. I really just needed someone who could like hold her while I sleep.”
“It’s really cool from a, from a family unit perspective is like we, we have G tubes, we have medications, we have all of these things, an ostomy right? Like all of these pretty technical things that we have to learn and everybody in the family, not just me and my wife, grandma, grandpa, sister, everybody knows how to do these things for the most part. And so, where I think and [wife’s name] and I are very, we’re very fortunate to have that at home.”
“You have to have a good support system with your family. And if you don’t, you struggle because, like for us you know, our parents aren’t comfortable with the meds and the g-tube, and the chemo and things, and oxygen. So, we have been restricted to only like, if we do get a chance, we will have a sitter for a few hours, and it’s not like you can’t take those two-day breaks where you can decompress and unwind…”
“I do try to talk to people, but I try not to do too much because then they ask a lot of questions and I have to explain and teach a lot. And that is almost harder and taxing and stressful for me. And no one in my family has done their own research to find out what is happening and what is really going on, and that would be really helpful if other people had been like I have taken the time to research and know what is going on.”
“I think the other part, is that now we are up in the cardiac unit and meeting people, you are in it for the long run, but up in the NICU you meet people with much more solvable problems. Not necessarily good problems, I will never say any of their journeys are easier, but there was a clear and final step.”
“There is a PVS group on Facebook that I am still on. I mean that is good. There are not many people around you. I mean caring for a child with PVS is isolating so you won’t really have many people around you. So coping was me, I mean it was not a specific time, but you just go on the group and ask specific questions or just vent, so that was helpful.”
“[…] we live that PTSD being in a locked unit, and you know, not being able to go when we want to, and running medications, and dealing with all of the side effects that come from the treatments and the medications, it’s extremely stressful […].”
“Yeah, so now we are kind of at a stable spot. She from a day to day stand point, is living a normal life. She is eating by mouth now, we got to take her feeding tube out. She goes long stretches in between appointments. So it’s this, you feel normal, and then you go in for this appointment, you feel normal, and then you go in for a cath and there is all this news.”
3.5. Mixed-Method Findings
3.5.1. SVI Was Not Associated with Parental Stress or Coping
3.5.2. Competing Family Demands and Role-Functioning-Related Stress
3.5.3. Disease Status and Communication-Related Stress
3.5.4. Coping Patterns
4. Discussion
4.1. Strengths and Limitations
4.2. Recommendations
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Child Characteristic | N = 32 |
---|---|
Age, median (IQR 1) | 5.3 (6.3) |
Female, Sex, N (%) | 21.0 (65.6) |
PVS status, N (%) | |
Newly diagnosed | 1.0 (3.1) |
Recurrent | 13.0 (40.6) |
Stable | 18.0 (56.3) |
Diagnosed at BCH, N (%) | 23.0 (71.9) |
Distance from BCH, miles, median (IQR) | 800.0 (1012.0) |
Hospitalizations in past year, median (IQR) | 3.0 (6.0) |
Days hospitalized in past year, median (IQR) | 2.0 (39.0) |
Caregiver Characteristic | N = 32 |
Age, mean (SD 2) | 39.0 (6.3) |
Female, Sex, N (%) | 29.0 (90.6) |
Race/ethnicity, N (%) | |
Asian | 1.0 (3.1) |
Black or African American | 2.0 (6.3) |
Hispanic | 1.0 (3.1) |
White | 26.0 (81.3) |
Black or African American/Native American | 1.0 (3.1) |
Preferred not to answer | 1.0 (3.1) |
Educational attainment, Master’s degree, N (%) | 13.0 (40.6) |
SVI 3, median (IQR) | 0.4 (0.5) |
Marital status, married/in a relationship, N (%) | 29.0 (90.6) |
Employment status, N (%) | |
Full time | 13.0 (40.6) |
Part time | 9.0 (28.1) |
Unemployed or not working | 10.0 (31.3) |
Variables | Communication Estimate (SE 1) | p-Value | Role Functioning Estimate (SE 1) | p-Value | Medical Care Estimate (SE 1) | p-Value | Emotional Distress Estimate (SE 1) | p-Value |
---|---|---|---|---|---|---|---|---|
SVI 2 | 1.9 (6.4) | 0.77 | 1.0 (6.1) | 0.87 | −1.7 (8.0) | 0.84 | 1.6 (11.9) | 0.90 |
Caregiver Age, years | −0.04 (0.3) | 0.89 | 0.2 (0.3) | 0.49 | 0.3 (0.4) | 0.52 | 0.3 (0.6) | 0.60 |
Caregiver Sex, Female | 5.5 (5.0) | 0.28 | 5.5 (4.7) | 0.26 | 5.3 (6.2) | 0.41 | 14.6 (9.3) | 0.13 |
Caregiver Relation, Partnered | −1.5 (6.0) | 0.80 | −4.3 (5.6) | 0.45 | 1.5 (7.4) | 0.84 | −8.2 (11.1) | 0.47 |
Race, White | 0.3 (4.1) | 0.93 | −0.8 (3.8) | 0.84 | 0.5 (5.1) | 0.92 | 2.0 (7.5) | 0.31 |
Children, N | 0.7 (1.1) | 0.55 | 1.9 (1.0) | 0.08 | 1.1 (1.4) | 0.44 | 2.2 (2.1) | 0.30 |
Patient Age, years | 0.0 (0.5) | 0.96 | −0.8 (0.5) | 0.12 | −0.5 (0.6) | 0.40 | −1.0 (1.0) | 0.56 |
Patient condition, Recurrent/N.D. 3 | 5.8 (3.5) | 0.11 | 3.8 (3.3) | 0.26 | 3.6 (4.3) | 0.42 | 3.8 (6.4) | 0.79 |
Variables | Family Cohesion Estimate (SE 1) | p-Value | Social Supports Estimate (SE 1) | p-Value | Communication Estimate (SE 1) | p-Value |
---|---|---|---|---|---|---|
SVI 2 | 2.3 (5.1) | 0.66 | 3.3 (6.6) | 0.62 | 3.6 (2.5) | 0.17 |
Caregiver Age | 0.1 (0.3) | 0.66 | 0.1 (0.3) | 0.67 | −0.02 (0.1) | 0.90 |
Caregiver Sex, Female | 2.0 (3.1) | 0.63 | 5.6 (5.2) | 0.29 | 1.7 (2.0) | 0.39 |
Caregiver Relation, Partnered | 1.7 (4.8) | 0.72 | −0.4 (6.1) | 0.96 | −2.9 (2.4) | 0.23 |
# of children | −1.4 (0.9) | 0.13 | −1.2 (1.1) | 0.32 | −0.6 (0.4) | 0.19 |
Patient Age | −0.3 (0.4) | 0.48 | −0.2 (0.5) | 0.70 | −0.1 (0.2) | 0.77 |
Patient condition, Stable | −1.3 (2.8) | 0.64 | −0.8 (3.6) | 0.82 | −1.1 (1.4) | 0.43 |
Race, White | −1.4 (3.2) | 0.67 | −2.2 (4.2) | 0.61 | 1.6 (1.6) | 0.33 |
Doman 1. Medical Diagnosis and Hospitalization | |
Themes | Sub-themes |
Medical | Diagnosis, Treatment and Management, Hospitalization, Complications, Stabilization of disease, Rare disease, PVS Clinical Coordinator, Care Team |
Hospital | Quaternary care, Familiarity with hospital, Hospital environment, Transfer, New city, Distance from hospital |
Medical knowledge | Caring for child with PVS, Existing medical knowledge, Searching for information |
Domain 2. Family Unit | |
Themes | Sub-themes |
Family | Partner, Family life, Siblings |
Home | Home therapy, Medical routine, Child Care, School |
Communication | Child with PVS, Clinical staff, Repeated Explanations |
Finance | Donation/Gift, Work from home, Additional expenses, Stay at home, Health insurance |
COVID | Isolation, Homeschool, Vaccination |
Domain 3. Mental Health and Coping | |
Themes | Sub-themes |
Mental health | Sleep deprivation, Medical trauma, Anxiety/depression, Therapy, Burnout |
Support system | Faith, Hospital Staff, Friends, Informal support group, Family, Facebook, Formal support group |
Self-care | Hygiene, Writing/blogging, Outdoors, Breaks, Exercise |
Coping | Leaving the bedside, Humor, sarcasm. Changing needs, Self-awareness, Looking to the future, Living in the moment, Giving back |
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© 2024 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Fuller, M., Jr.; Ireland, C.; Zmora, R.; Jenkins, K. Exploring Stress and Coping in Caregivers of Children with Pulmonary Vein Stenosis: A Mixed-Method Study. Children 2024, 11, 1008. https://doi.org/10.3390/children11081008
Fuller M Jr., Ireland C, Zmora R, Jenkins K. Exploring Stress and Coping in Caregivers of Children with Pulmonary Vein Stenosis: A Mixed-Method Study. Children. 2024; 11(8):1008. https://doi.org/10.3390/children11081008
Chicago/Turabian StyleFuller, Mark, Jr., Christina Ireland, Rachel Zmora, and Kathy Jenkins. 2024. "Exploring Stress and Coping in Caregivers of Children with Pulmonary Vein Stenosis: A Mixed-Method Study" Children 11, no. 8: 1008. https://doi.org/10.3390/children11081008