This article was adapted from a thesis by Bo Ryeong Lee in partial fulfillment of the requirements for the master's degree at Daegu Catholic University.
This study was conducted to investigate the educational needs of parents of infants and toddlers with congenital heart disease (CHD) after hospital discharge.
Qualitative content analysis was conducted of in-depth interviews of eight parents, and the results of an online survey of 171 parents were analyzed quantitatively.
Only 16.4% of parents reported that they had received education after hospital discharge on how to provide care for a child with CHD at home. The main reason why parents did not receive education on this topic was that they did not have sufficient opportunities or information (75.5%). In addition, 97.1% of parents stated that they needed educational programs that would be available at home after discharge. In terms of specific educational content, parents expressed the highest needs for education on the symptoms of CHD and ways to cope with them, the prognosis of CHD, and the growth and development of infants and toddlers with CHD.
The study showed that parents’ educational needs were high in many ways. However, the information and educational opportunities offered after discharge were insufficient compared to those needs. Further research is needed to develop post-hospital educational programs that meet their needs.
Congenital heart disease (CHD) is the most common type of congenital disease [
The standard treatment of CHD has changed from palliative care to early interventions [
According to a previous study in South Korea, parents of children with CHD had high levels of stress and educational needs for the post-hospital period on how to nurture and provide care for their children [
The educational materials that have been developed in South Korea thus far have generally consisted of content provided during hospitalization, and do not contain adequate information for parents to take care of children with CHD post-discharge [
This study aimed to identify the preferred educational methods and content among parents caring for infants and toddlers with CHD after discharge. The purpose of this study was to elicit information on the educational needs of parents of infants and toddlers with CHD after discharge. Since previous research on this topic is lacking in South Korea, this study comprehensively explored parents’ educational needs, first through in-depth interviews and then through an online survey. The results of this study may be used as a foundation for developing an educational program for parents of infants and toddlers with CHD after hospital discharge.
This study utilized a descriptive research design that combined a qualitative content analysis of in-depth interviews and a quantitative analysis of responses to an online survey, which aimed to identify needs for post-hospital education among parents of infants and toddlers with CHD.
The population of this study comprised 171 parents of infants or toddlers (aged 3 years or younger) with CHD who were caring for their children at home after discharge from the hospital. Parents were excluded from the study if their child 1) did not meet the age criterion, 2) had another major deformity or disability, or 3) was currently hospitalized.
Participants in the in-depth interviews were recruited both online and offline, while all participants for the online survey were recruited online. Online recruitment was conducted through a participant recruitment post on “Mom Café,” an online community, the administrators of which granted permission for recruitment after receiving an explanation of the purpose and procedure of the study. Offline recruitment occurred at a tertiary hospital after obtaining permission from the department chair and nurse in charge of the Department of Pediatric Thoracic and Cardiovascular Surgery. With the help of the nurse in charge, parents of infants and toddlers with CHD who visited the hospital for outpatient treatment were recruited to the study.
In-depth interviews were conducted until saturation was reached and no additional information was obtained. In-depth interviews were conducted with eight parents. For the online survey, the minimum sample size for an analysis of variance (ANOVA) model was calculated using a statistical program (G*Power 3.1.7), setting the effect size as .25, the ⍺ error probability as .05, and the power as .80. The calculated minimum sample size was 159, and considering an expected drop-out rate of 10%, 175 participants were recruited for the survey. The final sample size was 171, after four incomplete responses were discarded.
The in-depth interviews were conducted first, as a preliminary exploration of parents’ post-discharge educational needs. The in-depth interviews used a qualitative descriptive approach [
To obtain quantitative insights into parents’ needs for post-hospital education, an online survey was conducted from September 12 to October 4, 2019. In order to increase accessibility for stay-at-home parents, an online survey was created on Google Surveys. The survey form was developed according to the procedure described below.
Based on the results of the in-depth interviews, as well as an analysis of 16 related articles and six related websites from South Korea and abroad, the preliminary items were written. The survey consisted of five items on experiences of education, four items on preferences for education, and 60 items in 14 categories on educational needs by informational content. The 60 items on educational needs by informational content were rated on a 4-point Likert scale, with 1 being “not necessary at all” and 4 being “very necessary”.
An expert panel of 10 individuals that consisted of two pediatric nursing professors, one cardiologist from the Division of Pediatrics, one cardiac surgeon specializing in pediatric thoracic and cardiovascular surgery, one nurse in charge at the Department of Pediatric Thoracic and Cardiovascular Surgery, two nurse practitioners at a pediatric cardiovascular center, and three pediatric cardiology nurses with more than 5 years of experience in pediatric cardiology validated the content of the 60 items that surveyed educational needs by informational content. Fifty-three items that had a content validity index (CVI) of .80 or higher were selected. Three items that had a CVI of .75~.78, but were frequently mentioned by the participants of in-depth interviews, were added after considering experts’ opinions. As a result, the second draft of the survey included five items on experiences of education, four items on educational preferences, and 56 items in 13 categories on educational needs according to informational content.
A pilot study was conducted among 30 parents who looked after infants and toddlers with CHD at home. It took around 15 minutes for participants to complete the survey, and 80.0~96.7% of the participants responded that their understanding of the survey items, the length of the items, the font and font size, and the 4-point Likert scale were adequate. Participants were asked to respond with additional comments if they had any other questions on symptoms or informational content in the section on educational needs by informational content. The additional comments made could be classified as items about the prognosis of CHD, symptoms and responses of CHD, and the growth and development of infants and toddlers with CHD. Therefore, no revisions were made to the items in the second draft. A free response item eliciting additional comments about educational needs by informational content was added, and the final survey contained five items on experiences of education, four items on educational preferences, and 57 items in 13 categories on educational needs by informational content. The Cronbach’s ⍺ of the survey was .96 in the pilot survey and .96 in the main survey.
The interview data were analyzed according to the procedure used for inductive content analysis [
The collected data were analyzed using SPSS version 25.0 (IBM Corp., Armonk, NY, USA). Descriptive statistics (frequency, percentile, mean, and standard deviation) were calculated for the general characteristics of the study participants and their educational needs. Differences in educational needs by general characteristics were tested using the t-test and ANOVA. The Scheffé test was used for post-hoc multiple comparisons.
In order to ensure that standards for research ethics were met, this study was approved by the Institutional Review Board of D University prior to data collection (CUIRB-2019-0031). Participants were included in the study after they read the consent form, chose to participate voluntarily in the research, and provided either written or online consent. The first page of the online survey was the consent form. In an item located below the consent form, participants were asked to type in their name if they consented to participate in the study. Only participants who provided consent could move onto the first page of the survey. Participants were provided an explanation of the purpose and method of the study, anonymity and data privacy, the right to withdraw from the study at any point, and disposal of data if the study is terminated. It was also explained that the collected data would not be used for other purposes, and any data that participants did not wish to be included in the study would not be used. Data collection and analysis followed guidelines on research ethics, and no participants withdrew from the study.
Participants discussed their needs for education to be provided on how to manage their children’s disease after hospital discharge, and expressed that they needed reliable, easy-to-understand, open and accessible, and visual information. In addition, participants suggested that it would be helpful to hear stories from parents of children with similar main diagnoses and circumstances or to receive information about cases.
[The need for reliable information] I personally think it would be great if there could be a lot of different (reliable) information since it’s hard to check whether this or that information is verifiable or reliable. (Participant 5)
[The need for easy-to-understand information] I would like it if the information could be both professional and easy enough for mothers raising children to understand, not just for medical staff. Stories from other mothers would be helpful and nice, but I would prefer to refer to resources providing information, rather than looking around here and there. (Participant 7)
[The need for accessible education] When I try to read a book on this issue, they are all too technical. I don’t have the mental space to check books out from the librar y…When you look at babies with heart conditions, there are more babies who receive surgery when they are very little. I don’t have the mental space to think about those things. I don’t feel like it’s possible to read books. Since matters are urgent, I just pick up my phone and look things up (online), so that’s what I do first. (Participant 1)
[The need for open information] You need to sign up to view information online. There is a little bit of a psychological burden when it comes to signing up, even for someone like me, a mother with a child with a heart condition. How should I say this? (The website) should give a bit of information first, but the information is all blocked. I couldn’t get any information from there. (Participant 3).
[The need for visual information] More pictures. I can’t read long sentences when my baby is sick. I try to read, but I keep thinking about my sick baby, so I just skim and the content goes over my head. I think pictures would be easier to look at and understand. I search for information in the text, but I feel anxious. I just read it once. Information doesn’t stick in my head. (Participant 4)
[The need for similar cases] I strongly prefer to read about experiences, cases. (…) Medical information becomes more complicated as you search more. Medical information should be short, and I think experiences, cases, and prognoses are better. (Participant 4)
Participants discussed various elements of educational content that they needed, and their responses were organized into the following 10 categories: general aspects about CHD, prognosis of CHD, surgical wound management, characteristics and symptoms of infants and toddlers with CHD, medication, feeding and nutrition, development and rehabilitation, physical activity, medical devices used at home, and emergency situations and responses.
[General aspects about CHD] There is no need for many people to know about heart disease, but when I type in “total anomalous pulmonary venous connection” online, there is no information. An encyclopedia contains an explanation of what this is. After my baby had surgery, I found and read the entry again. Even after hearing about the condition so much, as I read, I think “So what is going on? What is wrong with my baby?” (Participant 1)
[Prognosis of CHD] There is no information about this. I felt more anxious because I’ve never seen information saying that this kind of child was okay after this kind of a procedure. Around me, I only see information on common conditions like ventricular septal defect, I don’t have any information. Since those conditions are more common, there’s more information for mothers of babies with common conditions. I didn’t know what the prognosis of my baby’s condition was, so I was more nervous. (Participant 4)
[Surgical wound management] At the time of the first round of surgery, it was hard to tape the open heart surgery wound. After I give the child a bath at home, I disinfect the wound, and there’s a tape that the hospital recommended. Steri-something… I put that tape on the wound. I heard you should gather the skin around the wound. I didn’t do that (managing the wound) in the hospital, so that was difficult for me. (Participant 5)
[Characteristics and symptoms of infants and toddlers with CHD] They told us to come to the hospital if the baby shows signs of cyanosis. I don’t know what cyanosis is. I looked it up, and it says cyanosis is when the lips turn blue. What does it look like when lips turn blue? What shade of blue? I don’t know these things. What is cyanosis? On the internet, it just says lips turning blue like it’s obvious. I just feel “How can the baby’s lips turn blue?”(Participant 1)
[Medication] About medications, effects, and precautions? For example, food. Babies can also receive cold medication, so can I give the baby a certain medication at the same time as cold medication? It would be good to have information on what kinds of medication shouldn’t be combined, what are the precautions, and what are some side effects. (Participant 7)
[Feeding and nutrition] I was most curious about food. The baby only consumed a very small amount at feedings… At our regular check-ups, I asked a lot, “The baby does not eat very well. There is a little bit of blood leaking. Could that be the reason?”(Participant 6)
[Development and rehabilitation] At the regular checkups, we found out that our baby wasn’t holding her head up when she was supposed to or was late in reaching some developmental milestones. So we were connected to rehabilitation treatments. (Other parents) had similar experiences. A lot of parents whose babies had surgery very early on asked about babies flipping over or holding their heads up through social networking services (SNS). A lot of questions were asked about price, frequency, and effectiveness (of rehabilitation treatments). (Participant 5)
[Physical activity] What I’m most curious about, when I search online, it says that it’s important to do physical activity. It says no child dies while exercising. Then I also hear some doctors say not to do any physical activity at all, so… I’m a mom, so I don’t want to raise my child differently from other children. But the grandparents say “the child was born sick, the child is sick…” so they don’t allow the child to do anything. (Participant 6)
[Medical devices used at home] There is such a wide range when it comes to medical devices (nebulizers). They need to be sterilized and washed to be properly maintained, but I don’t know how to do that. It would be great to use disinfectants like in the hospital, but it’s so hard for us to buy them. (Participant 4)
[Emergency situations and responses] The child could have some problems, and when those problems occur, I won’t know how to respond. Right now, I think I need that information. If there’s an accident, the hospital should have basic information about the child, but hospitals don’t share information with each other. So what should we tell them about the child? (Participant 6)
Nearly three-quarters (74.3%; n=127) of the survey participants were mothers, and the fathers accounted for the remaining 25.7%(n=44). Furthermore, 78.9%(n=135) of participants were in their 30s, and 56.7%(n=97) had a bachelor's degree. The majority of participants (62.6%; n=107) were not employed, and 61.4%(n=105) had only one child. No significant difference in educational needs was found according to any of the participants’ general characteristics (
In terms of the general and disease-related characteristics of the participants’ infants and toddlers with CHD, 50.9%(n=87) were boys, and 49.1%(n=84) were girls. Most of the children (81.3%; n=139) were toddlers, while 18.7%(n=32) were in infancy. Acyanotic CHD was present in 69.0%(n=109) of the children, while 31.0%(n=49) had cyanotic CHD. Some differences were found in educational needs according to the child’s disease-related characteristics. Educational needs were higher among parents of children with cyanotic CHD than among parents of children with acyanotic CHD (t=2.38,
Only 16.4%(n=28) of participants reported that they had received education on managing their children’s disease after hospital discharge. Among those who reported previously receiving education on this topic, 53.6%(n=15) had received education from hospital websites or heart foundation websites, 42.9%(n=12) from blogs and online communities, 35.7%(n=10) each from YouTube and via offline large-group education, and 32.1%(n=9) on SNS. The most satisfactory source of information was offline large-group education for 21.5%(n=6) of the participants, while 14.3%(n=4) each selected offline small-group education, offline one-on-one education, and hospital websites or heart foundation websites. The average satisfaction score for the education that they had received was 2.89±0.57 (
The majority (83.6%; n=143) of parents had not received education on managing their children’s disease after hospital discharge. Some of the reasons that they reported for not having received any education on this topic were “No information or education” (46.2%; n=66), “Had no opportunity” (29.3%; n=42), and “Do not know what kind of education or information I need” (14.0%; n=20) (
Almost all (97.1%; n=166) of the parents responded that education on managing their children’s disease after hospital discharge is necessary, with 50.3%(n=86) indicating that it is “very necessary” and 46.8%(n=80) responding that it is “necessary”. The most preferred source of information was direct, offline education (57.9%; n=99). Among specific methods of offline education, the most preferred was small-group education (26.3%; n=45), followed by one-on-one education (21.1%; n=36) and large-group education (10.5%; n=18). Among online education methods, 12.9%(n=22) of participants preferred YouTube and 9.4%(n=16) smartphone applications. Only a few parents selected websites (2.3%; n=4) and booklets/pamphlets (2.3%; n=4) as their preferred educational methods. The average preference score was highest for questions and answers (Q&A) (3.43±0.71), followed by case (3.40±0.67), videos (3.26±0.75), and pictures (3.18±0.70). The majority (77.8%; n=133) of parents responded that pediatric cardiologists should develop the educational materials, while 48.5%(n=83) and 45.6%(n=78) responded that professors of pediatrics or pediatric nursing and pediatric cardiology nurses, respectively, should do so (
The average overall score for educational needs on disease management of children with CHD was 3.39 (SD=0.39). Categories with high scores were symptoms and responses (3.51 ±0.46), the prognosis of CHD (3.48±0.49), and the growth and development (3.45±0.45). The highest score for any single item was reported for symptoms and response to cyanosis (3.61±0.60), followed by the effects of CHD on the growth and development of infants and toddlers, symptoms and responses to dyspnea or shortness of breathing, and the adequate caloric intake and appropriate weight gain for infants and toddlers with CHD. Items with low need scores included medical devices used at home (3.23±0.59), regular check-ups (3.29±0.58), and surgical wound management (3.30±0.57) (
Almost all (97.1%) of the parents of infants and toddlers with CHD in this study responded that they perceived education on the management of their children’s disease after discharge to be necessary. The need for education was higher among parents whose children had cyanotic CHD, had experienced two or more treatment interventions, had experienced treatment interventions as newborns, were currently on medication, and were scheduled for further treatment interventions, all of which are characteristics related to the child’s disease severity. Svavardottir and McCubbin [
Only 16.4% of parents responded that they had received education on their children’s disease management after hospital discharge. The overall satisfaction score for the education that they had received was 2.89, a little lower than “satisfactory”. Parents mostly received education online through hospital websites or heart foundation websites, blogs and online communities, YouTube, and SNS. This result is similar to the findings reported by Lee and Yoo [
The average score for educational needs for managing their children’s disease after hospital discharge was 3.39 out of 4, which was slightly lower than the score of 4.69 out of 5 for educational needs upon discharge reported by Lee and Jo [
In terms of educational content, parents were most curious about understanding and responding to symptoms that arise from their children’s disease, their children’s prognosis, and the effects of the disease on their children’s growth and development. On the other hand, low scores were reported for educational needs for regular check-ups and surgical wound management, the results of in-depth interviews suggest that hospitals continue to provide information about regular check-ups and guidance on surgical wound management via phone calls or text messages. In particular, since hospitals already arrange for parents to be able to call nurses and ask about surgical wound management after discharge, the perceived need for this content was low. Therefore, the information provided after hospital discharge should focus on the information that parents need at home (e.g., symptoms and responses, prognosis, and growth and development of infants and toddlers with CHD).
First, the highest score for educational needs was found for the item on symptoms and responses of CHD. The results of a previous study of parents of infants recruited from 11 heart centers in Great Britain suggested that most parents were not ready for discharge and felt fearful due to the lack of the information they would need to notice deterioration of their infants’ disease [
The second highest score for educational needs was found for the prognosis of CHD. In the in-depth interviews, parents were curious about the specific survival rates of various diseases and the probability that their next child would have CHD. The item ‘Probability of giving birth to another child with CHD’ was also highly endorsed in the survey. This result may have been due to the fact that 61.4% of the participating parents had one child, and the participants-as parents of infants and toddlers-were still of reproductive age. Park [
The growth and development was another item that received a high score for educational needs. Specifically, parents frequently requested education about the effects of CHD on their children’s growth and development and about physical activity. Parents who provide care to infants and toddlers with CHD at home constantly encounter these issues. Since for children with CHD, motor development is more prominently affected during infancy and early childhood than cognitive development [
The parents who participated in this study responded that there were not enough opportunities for education after hospital discharge and expressed interest in receiving education during this period. Therefore, educational materials and programs that can be used by parents at home after hospital discharge should be developed and implemented.
The following conclusions were obtained by exploring the educational needs of parents of infants and toddlers with CHD after hospital discharge through in-depth interviews and online surveys. In the in-depth interviews, the parents indicated that they wanted reliable information, easy-to-understand information that incorporates visuals and case, and accessible and open information given the lack of education useful at home. The online survey found that only 16.4% of parents had received education on managing their children’s CHD at home after discharge, and the most common reason for which parents did not receive education on this topic was that they did not have any information or education. The overwhelming majority (97.1%) of parents endorsed the necessity of an educational program for use at home after discharge. Educational needs were especially high among the parents of children with severe CHD. Parents preferred the educational method of Q&A in an offline setting and wanted doctors and nurses in the field of pediatric cardiology, and professors of pediatrics and pediatric nursing to develop the educational materials. Educational needs were high for information about the symptoms and responses of CHD, the prognosis of CHD, and the growth and development of infants and toddlers with CHD.
In this study, a gap was found between the education that medical personnel considered to be necessary and the education that parents wanted. Therefore, a post-hospital educational program and information outlets that address the educational needs of parents of infants and toddlers with CHD should be developed.
No existing or potential conflict of interest relevant to this article was reported.
General Characteristics of the Participants in In-depth Interviews (
No | Relationship | Age | Occupation | Number of children | Children with CHD |
||
---|---|---|---|---|---|---|---|
Age |
Birth order | CHD | |||||
1 | Mother | 42 | Housewife | 1 | 18/M | 1 | TAPVC |
2 | Mother | 38 | Housewife | 4 | 22/F | 4 | MR |
3 | Mother | 33 | Housewife | 2 | 30/M | 1 | TOF |
4 | Mother | 27 | Nurse | 2 | 14/M | 2 | TAPVC |
5 | Mother | 22 | Instructor | 3 | 25/F | 3 | DORV |
6 | Mother | 32 | Researcher | 2 | 20/M | 1 | TGA |
7 | Mother | 27 | Service worker | 2 | 27/M | 1 | VSD |
8 | Mother | 30 | Housewife | 2 | 11/M | 1 | DORV |
Month;
CHD=Congenital heart disease; TAPVC=Total anomalous pulmonary venous connection; MR=Mitral regurgitation; TOF=Tetralogy of Fallot; DORV=Double outlet right ventricle; TGA=Transposition of great arteries; VSD=Ventricular septal defect.
Educational Needs According to the General Characteristics of the Participants, and Their Children’s General and Diseaserelated Characteristics (
Variables | Characteristics | Categories | n (%) | M±SD | t or F | |
---|---|---|---|---|---|---|
Participant's general characteristics | Relationship with the child | Mother | 127 (74.3) | 3.47±0.58 | 0.05 | .961 |
Father | 44 (25.7) | 3.48±0.51 | ||||
Age (year) | 20~29 | 22 (12.9) | 3.50±0.67 | 0.28 | .753 | |
30~39 | 135 (78.9) | 3.46±0.54 | ||||
≥40 | 14 (8.2) | 3.57±0.51 | ||||
M±SD | 34.4±3.9 | |||||
Level of education | ≤High school | 17 (9.9) | 3.65±0.49 | 1.47 | .226 | |
College | 49 (28.7) | 3.53±0.58 | ||||
Bachelor's degree | 97 (56.7) | 3.40±0.55 | ||||
≥Master's degree | 8 (4.7) | 3.63±0.52 | ||||
Employed | Yes | 64 (37.4) | 3.48±0.53 | 0.19 | .847 | |
No | 107 (62.6) | 3.47±0.57 | ||||
Classification of occupation (n=64) | Managers | 1 (1.6) | 4.00±0.00 | 0.45 | .813 | |
Professionals | 12 (18.8) | 3.58±0.52 | ||||
Clerks | 29 (45.2) | 3.45±0.51 | ||||
Service workers | 9 (14.1) | 3.33±0.50 | ||||
Sale workers | 11 (17.2) | 3.55±0.69 | ||||
Craft workers | 2 (3.1) | 3.50±0.71 | ||||
Income (10,000 won per month) | ≤200 | 11 (6.4) | 3.45±0.52 | 0.29 | .628 | |
201~400 | 85 (49.7) | 3.44±0.59 | ||||
≥401 | 75 (43.9) | 3.52±0.53 | ||||
Number of children | 1 | 105 (61.4) | 3.43±0.54 | 1.25 | .290 | |
2 | 54 (31.6) | 3.52±0.57 | ||||
≥3 | 12 (7.0) | 3.67±0.65 | ||||
Residential area | Urban | 161 (94.2) | 3.47±0.56 | 0.15 | .878 | |
Rural | 10 (5.8) | 3.50±0.53 | ||||
Child's general and disease-related characteristics | Sex | Male | 87 (50.9) | 3.49±0.53 | 0.49 | .624 |
Female | 84 (49.1) | 3.45±0.59 | ||||
Age (month) | 2~12 | 32 (18.7) | 3.59±0.50 | 1.36 | .177 | |
13~36 | 139 (81.3) | 3.45±0.57 | ||||
Order | 1st | 118 (69.0) | 3.43±0.55 | 2.56 | .081 | |
2nd | 45 (26.3) | 3.51±0.59 | ||||
≥3rd | 8 (4.7) | 3.88±0.35 | ||||
Caregiver | Mother | 147 (86.0) | 3.49±0.57 | 0.53 | .662 | |
Father | 5 (2.9) | 3.20±0.45 | ||||
Grand parents | 15 (8.8) | 3.40±0.51 | ||||
Helper | 4 (2.3) | 3.50±0.58 | ||||
Classification of CHD |
Acyanotic |
109 (69.0) | 3.43±0.55 | 2.38 | .019 | |
Cyanotic |
49 (31.0) | 3.65±0.52 | ||||
Number of medical interventions | Nonea | 48 (28.1) | 3.33±0.48 | 7.83 | .001 | |
1b | 75 (43.8) | 3.40±0.62 | a, b<c |
|||
≥2c | 48 (28.1) | 3.73±0.45 | ||||
Timing of the first medical intervention (month) (n=123) | Neonatea | 28 (22.8) | 3.75±0.44 | 4.82 | .010 | |
2~12b | 72 (58.5) | 3.53±0.56 | a>c |
|||
13~36c | 23 (18.7) | 3.26±0.69 | ||||
Timing of the last medical intervention (month) (n=48) | Neonate | 1 (2.1) | 4.00±0.00 | 0.20 | .820 | |
2~12 | 30 (62.5) | 3.73±0.45 | ||||
13~36 | 17 (35.4) | 3.71±0.47 | ||||
Time passed after discharge (month) | ≤1 | 40 (23.4) | 3.53±0.60 | 0.14 | .797 | |
2~12 | 69 (40.3) | 3.46±0.56 | ||||
≥12 | 62 (36.3) | 3.45±0.53 | ||||
Current medication status |
Yes | 70 (43.5) | 3.73±0.48 | 4.90 | <.001 | |
No | 91 (56.5) | 3.34±0.52 | ||||
Additional medical interventions scheduled | Yesa | 34 (19.9) | 3.79±0.41 | 7.66 | .001 | |
Nob | 104 (60.8) | 3.40±0.51 | a>b, c |
|||
Unknownc | 33 (19.3) | 3.36±0.70 |
Scheffé test,
Missing data were not included;
Ventricular/atrial septal defect, patent ductus arteriosus, atrioventricular septal defect, stenosis/coarctation of the aorta, mitral stenosis;
Tetralogy of Fallot, stenosis/atresia of pulmonary artery, anomalous pulmonary venous connection, tricuspid atresia, double outlet right ventricle, hypoplastic left heart syndrome, transposition of great arteries, interrupted aortic arch;
CHD=Congenital heart disease.
Experiences of the Participants Regarding Education on Managing the Disease of a Child with Congenital Heart Disease (
Characteristics | Categories | n (%) or M±SD |
---|---|---|
Education experience related to CHD after discharge | Yes | 28 (16.4) |
No | 143 (83.6) | |
Source of information |
Off-line large-group education | 10 (35.7) |
Off-line small-group education | 7 (25.0) | |
Off-line one-on-one education | 6 (21.4) | |
TV program | 4 (14.3) | |
Blog or online community | 12 (42.9) | |
SNS | 9 (32.1) | |
YouTube | 10 (35.7) | |
Hospital website or heart foundation website | 15 (53.6) | |
Other website | 2 (7.1) | |
Application | 0 (0.0) | |
Paper | 2 (7.1) | |
Book or pamphlet | 2 (7.1) | |
Acquaintance | 4 (14.3) | |
The most satisfying source of information (n=28) | Off-line large-group education | 6 (21.5) |
Off-line small-group education | 4 (14.3) | |
Off-line one-on-one education | 4 (14.3) | |
TV program | 2 (7.1) | |
Blog or online community | 2 (7.1) | |
SNS | 2 (7.1) | |
YouTube | 2 (7.1) | |
Hospital website or heart foundation website | 4 (14.3) | |
Paper | 1 (3.6) | |
Acquaintance | 1 (3.6) | |
Satisfaction with education (n=28) | 2.89±0.57 | |
Reasons for not receiving education (n=143) | Had no time | 11 (7.7) |
Had no opportunity | 42 (29.3) | |
No information or education | 66 (46.2) | |
Think that it is not necessary | 4 (2.8) | |
Do not know what kind of education or information I need | 20 (14.0) |
Multiple response item (percent of respondents);
CHD=Congenital heart disease; SNS=Social networking services.
Preferences of the Participants for Education on Managing the Disease of a Child with Congenital Heart Disease (
Characteristics | Categories | n (%) or M±SD |
---|---|---|
Necessity of education | Very necessary | 86 (50.3) |
Necessary | 80 (46.8) | |
Unnecessary | 5 (2.9) | |
Not necessary at all | 0 (0.0) | |
Preferred source of information | Off-line large-group education | 18 (10.5) |
Off-line small-group education | 45 (26.3) | |
Off-line one-on-one education | 36 (21.1) | |
TV program | 7 (4.1) | |
Blog or online community | 12 (7.0) | |
SNS | 7 (4.1) | |
YouTube | 22 (12.9) | |
Website | 4 (2.3) | |
Application | 16 (9.4) | |
Book or pamphlet | 4 (2.3) | |
Preferred method of education | Instructor-led information | 3.14±0.68 |
Video | 3.26±0.75 | |
Written material | 2.99±0.79 | |
Picture | 3.18±0.70 | |
Case | 3.40±0.67 | |
Q&A | 3.43±0.71 | |
Preferred developer or instructor of the educational program |
Pediatric cardiologist | 133 (77.8) |
Pediatric cardiology nurse | 78 (45.6) | |
Professor of pediatrics or pediatric nursing | 83 (48.5) | |
Cardiac rehabilitation related health professor | 49 (28.7) | |
Parents of children with CHD | 37 (21.6) | |
Others |
1 (0.6) |
Multiple response item(percent of respondents);
Child psychologist;
SNS=Social networking services; Q&A=Question and answer; CHD=Congenital heart disease.
Educational Needs of the Participants According to Informational Content
Categories/item | M±SD | Order | |
---|---|---|---|
General aspects of CHD | 3.39±0.42 | 7 | |
1. Normal structure of the cardiovascular system | 3.26±0.61 | 49 | |
2. Normal function of the cardiovascular system | 3.20±0.69 | 54 | |
3. Classification and definition of CHD | 3.53±0.62 | 6 | |
4. Etiology of CHD | 3.40±0.71 | 28 | |
5. Symptoms of CHD | 3.47±0.64 | 13 | |
6. Treatment of CHD | 3.39±0.67 | 33 | |
7. Diagnostic and therapeutic methods of CHD | 3.44±0.69 | 20 | |
Prognosis of CHD | 3.48±0.49 | 2 | |
8. Surgical or long-term survival rate according to each disease | 3.47±0.68 | 16 | |
9. Probability of giving birth to another child with CHD | 3.51±0.65 | 8 | |
10. Additional medical intervention (surgery or catheterization) | 3.46±0.66 | 18 | |
Surgical wound management | 3.30±0.57 | 11 | |
11. Surgical wound care at home | 3.29±0.72 | 45 | |
12. Surgical wound management at home | 3.30±0.71 | 43 | |
13. The timing of when babies can be bathed after surgery | 3.29±0.76 | 44 | |
14. How to bathe after surgery | 3.30±0.72 | 41 | |
Postoperative respiratory therapy | 3.40±0.49 | 6 | |
15. Reasons for chest percussion and the vibration technique | 3.46±0.65 | 17 | |
16. How to perform chest percussion and the vibration technique | 3.43±0.63 | 21 | |
17. Introduction and usage of a nebulizer | 3.28±0.67 | 47 | |
18. How to clean a nebulizer | 3.42±0.67 | 24 | |
Medications | 3.34±0.52 | 10 | |
19. Name and classification of the medication | 3.34±0.68 | 38 | |
20. Purpose of the medication (therapeutic effect) | 3.28±0.70 | 46 | |
21. How long to take the medication | 3.26±0.74 | 50 | |
22. How to take the medication (schedule and dosage) | 3.21±0.76 | 53 | |
23. Adverse effects of the medication | 3.50±0.61 | 10 | |
24. Other medications to be avoided due to drug-drug interactions | 3.43±0.77 | 22 | |
Symptoms and responses | 3.51±0.46 | 1 | |
25. Cyanosis | 3.61±0.60 | 1 | |
26. Fever | 3.47±0.61 | 15 | |
27. Edema and decreased urine output | 3.53±0.65 | 7 | |
28. Dyspnea and shortness of breathing | 3.53±0.70 | 3 | |
29. Feeding problems (poor feeding, sweating during feeding, etc.) | 3.40±0.68 | 31 | |
Regular check-ups | 3.29±0.58 | 12 | |
30. The timing of regular check-up | 3.31±0.66 | 40 | |
31. Examinations to be performed during regular check-up | 3.27±0.66 | 48 | |
Complications of CHD | 3.37±0.49 | 8 | |
32. Definition and symptoms of endocarditis | 3.44±0.64 | 19 | |
33. Prevention of endocarditis | 3.49±0.61 | 11 | |
34. Reasons for preventative dental care | 3.32±0.71 | 39 | |
35. How to manage the child’s dental care | 3.22±0.78 | 52 | |
Feeding and nutrition | 3.35±0.47 | 9 | |
36. Adequate caloric intake and appropriate weight gain for infants and toddlers with CHD | 3.53±0.63 | 4 | |
37. Characteristics related to feeding for infants and toddlers with CHD | 3.35±0.69 | 37 | |
38. Feeding management for infants and toddlers with CHD | 3.20±0.73 | 55 | |
39. Breastfeeding for infants and toddlers with CHD | 3.25±0.79 | 51 | |
40. Information related to food intake for infants and toddlers with CHD | 3.40±0.71 | 28 | |
41. Management of the feeding tube | 3.36±0.67 | 36 | |
Growth and development | 3.45±0.45 | 3 | |
42. Immunization after open heart surgery | 3.40±0.65 | 30 | |
43. Considerations for the immunization of infants and toddlers with CHD | 3.42±0.69 | 26 | |
44. Effects of CHD on the growth and development of infants and toddlers with CHD | 3.60±0.59 | 2 | |
45. The development of normal infant and toddlers | 3.37±0.67 | 34 | |
46. Physical activity of infant and toddlers with CHD | 3.49±0.72 | 12 | |
Cardiac rehabilitation in CHD | 3.45±0.51 | 4 | |
47. Case requiring cardiac rehabilitation | 3.47±0.64 | 13 | |
48. Cardiac rehabilitation in infant and toddlers with CHD | 3.42±0.58 | 25 | |
Medical devices used at home | 3.23±0.59 | 13 | |
49. Pulse oximetry | 3.30±0.69 | 42 | |
50. Thermometer | 3.16±0.75 | 56 | |
Information that the family of a child with CHD should know | 3.44±0.44 | 5 | |
51. When to call the doctor (symptoms and signs) | 3.39±0.63 | 32 | |
52. CPR for infants and toddlers | 3.53±0.63 | 4 | |
53. Hospital information for CHD | 3.37±0.70 | 35 | |
54. Information on babies with CHD to be provided to the health care provider during hospital visits | 3.42±0.63 | 23 | |
55. Travel-related information | 3.42±0.68 | 27 | |
56. Home monitoring | 3.53±0.65 | 8 |
CHD=Congenital heart disease; CPR=Cardiopulmonary resuscitation.