Perception and Educational Needs of Developmentally Supportive Care At-Home for Parents of Pre-Term Newborns
Abstract
:1. Introduction
2. Materials and Methods
2.1. Research Design
2.2. Sampling and Participants
2.3. Interview Process
2.4. Data Analysis
2.5. Rigor
2.6. Ethical Considerations
3. Results
3.1. Category Analysis
3.1.1. Core Phenomenon: “Coexistence of Familiarity and Unfamiliarity”, “Desire for Expert Support”
- “Coexistence of familiarity and unfamiliarity”
“Developmentally supportive care? I’ve never heard of it… But I think I just held my baby as much as possible because he/she was a preemie. First, I just held him/her as much as possible, and next, I massaged him/her a lot. We did a lot of tummy time and the jumperoos and stuff… I just did everything I could with the wish that my child would be healthy.”(Participant 3)
“I’ve never heard of developmentally supportive care so I’ve thought it’s something challenging, but it was something that I’ve been doing all the time. First, a lot of people in online communities talk about their child walking abnormally and their development being delayed and these are what people are actually worried about a lot of the times… So, I search for information to prevent this from happening… Wouldn’t all moms do this? That’s what parents do…”(Participant 4)
- “Desire for expert support”
“But no matter how much I write about this in the community, other moms only reply with things like ‘my baby was a vomiter too’… and no one clearly explained why they vomit. I think the lack of such detailed medical knowledge was what I was sad about,”(Participant 6)
“There is no information about rehabilitation or development centers. Especially, I live in the countryside, and it’s especially more difficult for me to find such information. And it’s not like I can take my unstable baby to Seoul. So, we just search for data ourselves and just rely on those rules of thumb.”(Participant 10)
3.1.2. Causal Conditions: “Incomplete Educational System”, “Gap between Expectations and Reality”
- “Incomplete educational system”
“I did receive discharge education, but it was just a video. Because COVID-19 was so serious, we couldn’t have an education session. I did have education about bottle-feeding my baby for about an hour before discharge. But then (when we went home,) my baby growled so much during the night and I didn’t hear about it at all. I thought that happened because I did something wrong and I didn’t know what to do…For some time I kept calling the NICU to ask…”(Participant 2)
“Even if you post things on the community, that’s kind of limited too. All the information posted is relevant to Seoul and Gyeonggi regions, and we’re in the countryside, you know. Even when I ask the attending doctor, they say I don’t have to visit a rehabilitation center. But I still want to check at least once… It’d be great if there is any information about development-related centers in the region…”(Participant 2)
- “Gap between expectations and reality”
“In the book, it said you nurse every three hours but the baby would wake up after 1.5 h and things like that are such a surprise… I really followed the book and highlighted important things and studied the book like I studied for my college entrance exam…. I realize the book is wrong and I get frustrated… At first, I felt really betrayed and had a hard time psychologically. Even though I can laugh about it now…”(Participant 10)
3.1.3. Context: “Fear of Developmental Disability”, “Lack of Appropriate Evaluation criteria”
- “Fear of developmental disability”
“When I look through the posts on the online community, I see a lot of stories similar to that of my child. I’m just wondering how my child will grow. I feel relieved when I read about kids that grew up well, but I can’t stop being nervous when I read about kids that did not do so well. So, I try not to read them but it’s really hard, you know. They say that even if the child doesn’t have symptoms right now, they can appear later on.”(Participant 7)
“The neurosurgeon didn’t talk about anything in particular, and I went to the rehabilitation medicine but the doctor said my child has no problems with things like cognition because it’s caught up to the corrected age but gross motor is a little slow. It took a long time until my child was able to grab, stand up, and walk. And his/her foot arch is a little abnormal and I told the doctor and he/she said not to worry… I was still anxious and so I searched on the internet and had my child wear corrective shoes.”(Participant 4)
- “Lack of appropriate evaluation criteria”
“I was kind of wondering too about whether I should use actual age or corrected age and all the doctors say different things… Some say I should use actual age for eating and some say I should use corrected age for amount of feed. (omitted) You know, that should be adjusted to the baby, but I really don’t know.”(Participant 8)
“When I go for the infant and toddler check-up, the doctor just says to use the actual age, but the doctor that I’ve always seen in the outpatient clinic tells me to use the adjusted age for the solids. So, I don’t know what’s right.”(Participant 5)
3.1.4. Action–Interaction Strategy: “Continuing to Provide Developmentally Supportive Care”, “Active Information Seeking”
- “Continuing to provide developmentally supportive care”
“I think the most challenging part is the waiting. Well, I think you need to be patient, not compare your child with other children because your child has his/her own timing. (Omitted) There are several governmental supports for preemies. There is ‘nutrition plus system’. *** Foundation provides rehabilitation support. You learn about a lot of things when you go about and actively seek for information.”(Participant 1)
“I use the *** app to see both corrected and actual age. The app shows the feeding amount for both corrected and actual age. My baby was born a month prematurely, so I used something in between. In addition to that, I am still trying hard to search for parenting methods that I can use.”(Participant 8)
- “Active Information seeking”
“For parenting information, I most frequently visit online mom communities and preemie communities. When I want to know something specific, I search online. My child had a dimple, and there wasn’t much information on the internet. So I posted a question about dimple on the community, and people replied to my post with practical information, like there is this famous doctor and like observe for these symptoms. (omitted) The **** app has a feature that gives recommendations for development-appropriate plays like playing with balls and shapes, so I referred to that a lot.”(Participant 3)
“In the online communities, people say things like it’s good to massage the neck and chest, but it wasn’t easy to find videos and stuff. So, I asked other moms and got a video. And I usually search on YouTube for videos.”(Participant 10)
3.1.5. Intervening Conditions: “Difficulty of Obtaining Useful Information”
“Online communities offer an array of information, but one drawback is that sometimes, some moms post inaccurate information that is not filtered out, and other moms who see them blindly follow them. Also, sometimes they say I’m doing this but other people shouldn’t do it depending on their case and that kind of causes confusion… (omitted) For example, when people tell me that I shouldn’t use stuff like baby gym when my baby begins to roll over because it’s bad for the stretching and bone development, I search and find that it’s a recommended toy… I was confused as to who should I listen to and I began to lose trust in the online moms’ communities.”(Participant 2)
3.1.6. Results: “Needs for Professional Educational Support”
“If an expert like the doctor… if people who have been in the field for a long time reply to my posts, then I think I’d be able to trust that much more than the online communities.”(Participant 8)
“The limitation of online communities is that you don’t know who these people are and that instead of (getting help from) non-experts, I wish that there was a community tailored to my child’s characteristics to get help from.”(Participant 9)
3.2. Restructuring of the Storyline through Selective Coding
4. Discussion
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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Parents | Children | ||||||
---|---|---|---|---|---|---|---|
Age (Years) | Gender | Job | Information Source * | Gestational Age (Weeks+Day) | Corrected Age (m) | Birth Weight (g) | |
32 | Mother | No | B, C | 1st: 28+0 | 48 | Girl | 1280 |
2nd: 34+6 | 21 | Boy | 1580 | ||||
32 | Mother | No | B, E | 27+4 | 14 | Boy | 1180 |
36 | Mother | Yes | B | 34+5 | 10 | Boy | 2000 |
37 | Mother | No | B, C | 26+1 | 31 | Boy | 840 |
33 | Mother | No | A, B | 1st: 31+3 | 36 | Girl | 1800 |
2nd: 35+2 | 9 | Girl | |||||
36 | Mother | No | B, C | 28+5 | 14 | Boy | 1100 |
33 | Mother | No | B | 33+6 | 9 | Girl | 2030 |
34 | Mother | No | B | 35+4 (twin) | 7 | Boys | 2110 |
1910 | |||||||
32 | Mother | No | B | 1st: 26+1 | 31 | Boy | 670 |
2nd: 35+1 | 14 | 1960 | |||||
32 | Mother | Yes | A, B | 32+2 (twin) | 25 | Girls | 1590 |
1600 |
Paradigm Element | Categories | Sub-Categories |
---|---|---|
Casual condition | Incomplete education system | Inadequate discharge education Lack of post-discharge education network Limited resources at development center |
Gap between expectations and reality | Extensively studying parenting of pre-term newborns prior to being discharged | |
Contextual condition | Fear of developmental disability | Postnatal complications Indirect experience of negative prognosis Experiences of suggestive symptoms |
Lack of good evaluation criteria | Vague criteria for developmental assessment Conflict of expert opinions Criteria that change depending on the situation | |
Coexistence of familiarity and unfamiliarity | Being unfamiliar with the term developmentally supportive care Continuing to provide parenting to promote development | |
Desire for expert support | Lack of professional information about developmental rehabilitation Difficulty accessing a specialized health care facility Want an expert supportive program | |
Intervention condition | Difficulty of obtaining useful information | Difficulty sorting out the desired information from a flood of information Having no confidence in the information searched |
Action & interaction strategy | Active information seeking | Using diverse internet resources Utilizing human resources to obtain information |
Continuing to provide DSC * | Continued effort to promote development Establishing one’s own parenting style | |
Consequence | Needs for professional educational support | Developmental rehabilitation support Nutrition support Health management support Governmental support and management Self-help communities Educational infrastructure for preemies |
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Kim, J.S.; Kim, H.R. Perception and Educational Needs of Developmentally Supportive Care At-Home for Parents of Pre-Term Newborns. Healthcare 2023, 11, 1700. https://doi.org/10.3390/healthcare11121700
Kim JS, Kim HR. Perception and Educational Needs of Developmentally Supportive Care At-Home for Parents of Pre-Term Newborns. Healthcare. 2023; 11(12):1700. https://doi.org/10.3390/healthcare11121700
Chicago/Turabian StyleKim, Jeong Soon, and Hae Ran Kim. 2023. "Perception and Educational Needs of Developmentally Supportive Care At-Home for Parents of Pre-Term Newborns" Healthcare 11, no. 12: 1700. https://doi.org/10.3390/healthcare11121700
APA StyleKim, J. S., & Kim, H. R. (2023). Perception and Educational Needs of Developmentally Supportive Care At-Home for Parents of Pre-Term Newborns. Healthcare, 11(12), 1700. https://doi.org/10.3390/healthcare11121700