Abstract
Mothers of children with congenital heart disease (CHD) tend to be concerned about their child’s normal life. The majority of these mothers tend to experience negative psychological problems. In this study, the adaptation process of mothers raising a child with complex CHD was investigated based on the sociocultural context of Korea. The data collection was conducted by in-depth interviews and theoretical sampling was performed until the data were saturated. The collected data were analyzed using continuous theoretical comparisons. The results of the present study showed that the core category in the mothers’ adaptation process was ‘anxiety regarding the future’, and the mothers’ adaptation process consisted of the impact phase, standing against phase, and accepting phase. In the impact phase, the participants emotionally fluctuated between ‘feelings of abandonment’ and ‘entertaining hope’. In the standing against phase, participants tended to dedicate everything to child-rearing while being affected by ‘being encouraged by support’ and ‘being frustrated by tasks beyond their limits’. In the accepting phase, the subjects attempted to ‘accept the child as is’, ‘resist hard feelings’, and ‘share hope’. Health-care providers need to develop programs that include information regarding CHD, how to care for a child with CHD, and effective child-rearing behaviors.
Introduction
Due to improved prenatal diagnosis, intervention, and treatment, the five-year survival rate of children with congenital heart disease (CHD) reached 93.3% (Park et al., 2003) and over 90% survived to adulthood (Moons et al., 2010). However, children with complex CHD experience physical, psychological, and social issues, including uncertainty, complications, and limitations (Salgado et al., 2011), and receive intervention or operations repeatedly to manage their health conditions (Claessens et al., 2005). The children’s issues can lead to increased psychological problems for the mother (Bruce et al., 2014). Especially, parents of a child with CHD start to manage their child’s disease early because CHD can be detected in the prenatal or newborn period (Menahem et al., 2008).
Parents of a child with complex CHD have to contribute to the child’s care and prepare for the treatments their child is supposed to receive (Upham and Meddoff-Cooper, 2005). Then, the majority of such parents tend to experience negative psychological problems such as anxiety, fear, and guilt (Menahem et al., 2008) and report a lower quality of life level than the parents of a healthy child (Arafa et al., 2008). Additionally, parents of a child with complex CHD are inclined to have the responsibility to share data with health-care providers for their child’s smooth transitions (Haskell et al., 2012). Their parental caregiving burden was associated with an elevated risk of long-standing parental psychopathology (Kolaitis et al., 2017). Researchers reported that mothers of children with CHD were concerned about their child’s normal life and were unclear on how to raise a child with CHD (Bruce et al., 2014; Sparacino et al., 1997). Mothers of children with CHD tend to be the primary caregivers but with a higher incidence of psychological problems such as hopelessness, depression, and anxiety (Bruce et al., 2014).
As with other East Asian countries, Korean culture has been framed by the principles of Confucianism. Recently, the influence from Confucian value has decreased as society and cultures have changed in Korea (Park et al., 2017). However, the gender inequality which is one of Confucian value continues to have critical impact on family functioning (Choi and Van Riper, 2017). The roles of man and woman are provided in the Confucian value and mothers are expected to care for family members especially when family members have special needs, disabilities, or chronic illness (Choi and Van Riper, 2017). The majority of Korean children and adolescents with complex CHD tended to realize that they differed from their peers after entering elementary school and be confused about their identity in adolescence (Lee and Kim, 2012). Also, they tend to be absorbed in studies, similar to healthy Korean children and adolescents, because their most important role is to enter university (Lee and Kim, 2010; Im et al., 2017). Therefore, Korean mother raising a child with CHD could feel a great burden because they assume the responsibility of caring for the child with CHD (Choi and Van Riper, 2017), supporting the child’s studies, and other family affair.
However, proven methods on how to educate and care for the mothers of a child with CHD are lacking, thus, in this study, the adaptation process of mothers raising a child with complex CHD was investigated based on the sociocultural context of Korea and the substantive theory developed using grounded theory. The study examined the adaptation process of mothers raising a child with complex CHD from the time of diagnosis to adolescence of their child in Korean culture framed by Confucianism.
Methods
Study design
This study was a qualitative study using grounded theory investigating the adaptation process of mothers raising a child with complex CHD from the time of diagnosis to adolescence of their child in Korean culture framed by Confucianism.
Participants
The 12 participants were mothers raising their child with complex CHD who were recruited from a tertiary hospital from June 2016 to November 2016. They agreed to participate in the research, including in-depth interviews and recordings of the communication. The age of participants ranged from 40 to 58 years and of their children from 17 to 24 years of age. The majority of participants were married and homemakers (Table 1). In regard to the children with complex CHD (Table 1), seven were male, and the heart defects present were double outlet right ventricle (DORV), tetralogy of fallot (TOF), pulmonary atresia (PA), transposition of the great vessels (TGV), and pulmonary stenosis (PS). Eight children with complex CHD underwent more than three surgeries, and three of these children experienced comorbidity or complication.
General characteristics of the participants and their child.
Note: DORV: double outlet right ventricle; TOF: tetralogy of fallot; PA: pulmonary atresia; TGV: transposition of the great vessels; PS: pulmonary stenosis.
Data collection
In-depth interviews were performed using a semi-structured questionnaire after approval from the Institutional Review Board of the tertiary hospital in Seoul, Korea. Theoretical sampling was performed to continually compare different components of data for similarities and differences during the interview period. The nurse practitioner recommended some mothers of children with complex CHD as participants. The researcher explained the purpose of this study and the ability to discontinue participation at any time to mothers and adolescents with complex CHD at a hospital visit for follow-up care. Participants who agreed to have an interview regarding their child-rearing experience for this study were included. The participants provided the written informed consents and agreed to research participation. The interview was conducted in places that were comfortable for the participants, for example, a café or park located near the participants’ residence. The duration of the interview was 30 minutes to 1 hour and the number of interviews was 1 or 2. In case of confronting with the contents which cannot be clearly understood during analyzing the raw data, the researchers ask the participants for interview again and confirmed their meaning. The main categories of the semi-structured questionnaire were ‘experiences of raising a child with complex CHD’, ‘good and bad experiences within the family’, ‘the relationship among the family members’, and ‘sources of stress and strategies to manage stress’.
Data analysis
Grounded theory was used to explore the adaptation process of the mothers raising a child with complex CHD. Coding was used to investigate a more abstract level; the categories were derived from concepts, which themselves were derived from the interview contents. The adaptation process was constructed by exploring the sequence of action/interaction/emotion changes in response to sets of events or situations (Corbin and Strauss, 2008). Comparative analysis was performed and considered different dimensions during the interview and analysis of the contents.
Rigor
The trustworthiness of this study was ensured based on the criteria for judging the adequacy of fourth generation evaluation: credibility, transferability, dependability, and confirmability (Guba and Lincoln, 1989). The researcher in this study had a lot of experience of interview with children and adolescents with CHD and their parents, therefore, the researcher had pre-understanding sufficient to analyze the contents from the in-depth interviews with participants. The researcher continuously performed comparative analysis and a participant and a nurse practitioner had chances to confirm the preliminary findings.
Findings
As shown in Table 2, 9 categories and 28 concepts were extracted from the in-depth interviews with mothers of children with complex CHD. ‘Anxiety regarding the future’ was a core category, which was related to other categories and was continuously observed throughout the mothers’ adaptation process. The process in this study was composed of the impact phase, standing against phase, and accepting phase as time passed (Figure 1). The impact phase included ‘feelings of abandonment’ and ‘entertaining hope’. The standing against phase included ‘dedicating everything to child-rearing’, ‘being frustrated by tasks beyond their limits’, and ‘being encouraged by the support’. The accepting phase included ‘accepting the child as is’, ‘resisting hard feelings’, and ‘sharing hope’.
Categories and concepts.
The adaptation process of mothers raising a child with complex CHD. CHD: congenital heart disease.
Core category
The core category in this study was ‘anxiety regarding the future’. The participants experienced continuous anxiety regarding the future when raising a child with complex CHD. The majority of participants had concerns regarding their child’s independence and anxiety regarding the child’s marriage within the Korean culture, which focuses on family.
Anxiety regarding the future
Several participants worried that they could not support their child with complex CHD throughout their lifetime. They were concerned regarding the independence of their child: I can’t live with her for her whole life. During her lifetime, she’ll have to go to the hospital and take medication… Because the child is a female, she could have various issues such as marriage and childbirth. These worries arise suddenly and constantly.
Impact phase
Most mothers who recognized their child had a complex CHD experienced ‘feelings of abandonment’ as well as ‘entertaining hope’. They tended to state that ‘the sky is falling’ due to feelings of fear, guilt, and despair. The majority of mothers also felt sorry for their child and resented God; however, they tended to have hope when seeing their child’s healthy appearance after surgery. They felt grateful for a successful surgery, which gave them hope and opportunity.
Feelings of abandonment
After learning that their children had complex CHD, most participants felt despair. One mother expressed her feelings of guilt: I am a sinner for having given birth to the child in this condition and for not giving birth to a healthy baby. I thought by living honestly and sincerely and not harming others I would have a good life, but having this unthinkable hardship, I am dismayed.
Entertaining hope
Most of mothers experience relief and gratitude when they saw the rosy lips of their child with complex CHD after a successful surgery: After the surgery, the lips really became red. I was so happy and very grateful.
Standing against phase
The majority of mothers tended to dedicate everything to raising their child with complex CHD in the standing against phase. The majority of participants focused on becoming a protector of their child without caring for themselves. Therefore, they tended to become overprotective of their child even after the child recovered and was able to live a normal life without any symptoms. Most mothers of a child with complex CHD were frustrated by tasks beyond their limits. Some of them sometimes felt the urge to give up. They also tended to feel guilt due to improper handling of the child and sorry for the subject’s siblings. In the standing against phase, the participants tended to feel isolated because they recognized their child was different from a normal child. Conversely, the majority of participants were encouraged through the support of their family, health providers, and peer groups. Occasionally, some of them experienced pride from the perception that their child was strong even though they had a disease.
Dedicating everything to child-rearing
When the child was in the hospital for treatment, most participants focused on only their child and did not consider themselves. One mother said: How could I eat when my child couldn’t eat? Our baby is crying because he’s hungry, how can I, the mom, eat? I couldn’t eat anything. I felt I couldn’t do everything that I could for the child so I submitted a letter for denial of my promotion. I moved from Seoul and began to live this rural/country life. I should expose the child to the world and send her out instead I control everything and completely keep the child close to me. I thought that was the best solution. ‘You are a happy child, and in order for you to be happy I will be by your side to help you with whatever happens. Don’t worry’. Is what I said.
Being frustrated by tasks beyond their limits
When dedicating themselves to their child with complex CHD, participants sometimes experienced frustration from role strain and tasks beyond their capabilities. One mother reported her memories of suicide attempts: Our house is on the 5th floor and when I look down, it seemed so low to the ground. I felt like at this low height I could just jump down and I would comfortably land sitting down. We were just devoted to ##. We were so focused on ##…when ##’s older brother was young, I treated him like a big kid. It was so hard to take care of one kid, I expected him to do a lot by himself, which was difficult for him. When something went wrong, the older kid was always getting scolded. That is why it was so difficult for him. He would express that it was hard for him, that he too was mom’s child…that he missed mom when he was at the hospital.
Being encouraged by support
Even though participants reported a hard time raising their children, some felt pride in the strength of their children, were grateful to family member and health-care providers, and obtained hope from peer groups. One mother expressed strong personal growth, and another reported receiving comfort from a peer group: I think we grew together as parents. We say it’s because of 00 that we have grown so much. Mothers in the same position…honestly more than my siblings or parents. Bearing the same pain, we gave each other so much comfort, they really provided much strength.
Accepting phase
After entering the accepting phase, some mothers of a child with complex CHD tended to accept the child as is. Some participants tried to be patient with the child and support what he/she wanted instead of being overprotective. Additionally, mothers in the accepting phase tended not to hide the disease from others because they accepted their child as is. However, most participants still experienced anxiety regarding the future and tried to resist hard feelings. The mothers tended to share positivity, explore information on CHD, focus on something different, find compassion, and cast aside future anxiety by having faith. Some participants attempted to share hope with other people having difficulties.
Accepting the child as is
Some participants in the accepting phase no longer hid their child’s disease from others: I did not hide it. ‘He’s had that disease since he was a child and he had a surgery’ is what I said without hesitation in front of my child. Without imparting feelings of embarrassment about it, I did everything naturally.
Also, some participants who accepted their child and her/is disease expressed that they will continue to support their child with complex CHD: I do not know honestly how long you will be by my side, but until that time I just want you to be happy and do what you want to do’ is the belief I hold as I am raising him now. (Subject 10)
Resisting hard feelings
Even though some participants accepted the child and her/his disease, they still felt anxiety and fear. Therefore, they tried to obtain effective information for managing complex CHD, to seek faith, and to transfer focus to something else. Some mothers tried to think positively, as follows. There are other people who had surgery and are scarred. So, I always told ## to be confident. On purpose, we consciously put in a great deal of effort to be a little more positive.
Sharing hope
A minority of participants would gladly share hope with other people in need after learning to accept their child as is. One mother expressed her willingness to donate. While undergoing surgery, we received help from a social worker. That is why now I want to help others and donate some money monthly. It is not much but it gives me pleasure. (Subject 8)
Discussion
Our findings indicate the adaptation process of mothers raising a child with complex CHD consisted of the impact phase, standing against phase, and accepting phase. In the impact phase, the participants tended to experience emotional fluctuation between feelings of abandonment and entertaining hope due to anxiety concerning the future. Consistent with this study, several researchers reported that parents of adolescents with CHD had issues such as disclosure, illness management, and social isolation (Sparacino et al., 1997), and parents experienced a ‘rollercoaster’ of emotions as their child underwent heart surgery. Particularly, some thoughts that parents had were ‘it was shocking to learn my child had a heart defect’, ‘what did I do that caused it?’, and ‘it was a blessing for our family’ (Wei et al., 2016). In the impact phase, mothers of children with CHD had feelings of abandonment when learning of their child’s heart defect because of fear that their child may die. However, they tended to entertain hope after a successful surgery. Therefore, in this phase, they experienced fluctuations of emotions, including anxiety regarding their child’s future.
In the standing against phase, the majority of participants tended to dedicate everything to child-rearing, including influence by support and feelings of limitation. The majority of participants perceived that the role of caring for a child with complex CHD was the essence of their work. Even though most participants received encouragement through the support of their family and health providers, they did not ask for help with child-rearing or for information from health providers. Inconsistent with this study, some mothers of children with complex CHD in Sweden expressed their need for support and requested time for themselves (Bruce et al., 2014). Some mothers and fathers in Canada reported that they relied on each other for caring for children with complex CHD (Rempel and Harrison, 2007). However, the majority of the participants in that study did not express the need for support but dedicated everything to their child with complex CHD (Choi and Van Riper, 2017). Also, mothers in Canada expressed their efforts to balance treatment for the children with complex CHD to attention for other healthy children (Rempel and Harrison, 2007). However, some participants in that study did not try to achieve balance in their parenting but just expressed sorrow for the subject’s siblings.
Mothers first worried about the activities of daily life after the child’s condition was stabilized (Bruce et al., 2014), then struggled with barriers that inhibited their child’s normality (Bruce et al., 2014; Sparacino et al., 1997). When a mother devotes her life to caring for her child with CHD, psychological problems and social adjustment problems can result (Lawoko, 2007). Especially, Korean mothers did not tend to seek support from family or health providers. Therefore, mothers of children with CHD need support from peers and health-care providers. They felt comforted meeting other parents in the same situation and supported by accessing relevant knowledge on how to care for their child from the health-care providers (Bruce et al., 2014). However, they still felt anxiety regarding their child’s future and were frustrated by tasks beyond their limits. The majority of participants tended to dedicate their life to raising a child with CHD without recognizing their child as an independent person in this phase. Therefore, they showed a tendency of overprotection in rearing behaviors due to feelings of fear and insecurity (Salgado et al., 2011).
Some participants accepted their child as is during the accepting phase. However, they still felt anxiety regarding the future of their child, thus they tried to resist hard feelings or share hope to reduce their anxiety. As their child grew up to be an independent adult and made an achievement in some area, some mothers tended to recognize their child as an independent adult and accepted the child as is. The adolescents with CHD, who accepted their illness, tended to manage their illness independently and build resilience (Lee et al., 2017). Similar to adolescents with CHD, in the final phase, mothers of a child with CHD tended to adapt after accepting their child as is. Connelly et al. (2012) suggested that parents’ perception of greater child vulnerability was significantly associated with poorer child functioning in a study focusing on parents of children with chronic pain. In the standing against phase, some mothers of a child with CHD tended to be overprotective, resulting from the perception of child vulnerability and death anxiety, while they tended to support what the child wanted to do in the accepting phase. Mothers who had knowledge of the child’s illness and disease management tend to make efforts to assist their child in searching for work that they can perform. Therefore, health-care providers need to support mothers to accept the child’s illness and acquire information on CHD and its management.
Limitations
This study could help promote understanding of the adaptation process of Korean mothers raising a child with complex CHD. However, the generalizability of this study is limited because the participants were referred by one nurse practitioner and included a small number of mothers of children with complex CHD. Further study with a larger sample of mothers or fathers of children with complex CHD is needed. In addition, interviews were conducted in a public place, which could lead to less disclosure due to privacy concern. More elaborately designed study in terms of data collection would strengthen the understanding of mothers of children with complex CHD.
Conclusion
Most participants adapted to having a child with CHD by experiencing the impact phase, standing against phase, and accepting phase. The majority of mothers encountered psychological and adjustment problems as well as gained experience in obtaining support from peers and health providers. Health-care providers need to understand the psychological problems and difficulties of adaptation that mothers of a child with CHD experience and develop programs that include knowledge regarding CHD and how to care for a child with CHD. Additionally, health-care providers need to offer information regarding how a mother of a child with CHD can raise their child effectively.
Footnotes
Acknowledgement
The authors wish to acknowledge the financial support of the Catholic Medical Center Research Foundation made in the program year of 2016.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was financially supported by the Catholic Medical Center Research Foundation made in the program year of 2016.
