Problems Perceived by Skilled Nurses regarding the Independence of Children with Congenital Heart Disease

ABSTRACT

This study was conducted to determine how skilled nurses perceive the independence of children with congenital heart disease. A questionnaire survey was administered to elicit responses to questions such as whether the skilled nurses noticed problems with the independence of children with congenital heart disease, and whether they thought that support from adults close to the children was needed to foster independence. More than 60% of the 84 nurses perceived problems regarding the independence of children with congenital heart disease. Situations in which skilled nurses noticed problems, in addition to difficulties and limitations in understanding of the disease, included instances of family members making decisions and answering questions and of the child being unable to communicate easily. Nearly all of the skilled nurses felt that support from adults close to children with congenital heart disease was needed to foster their independence.

KEYWORDS:

• congenital heart disease
• child
• independence
• problem
• skilled nurse

While advances in the treatment of children with congenital heart disease have improved their prognosis, the psychosocial problems of such patients and the transitional problems they encounter in adolescence and adulthood are gaining attention (Moceri et al., 2015; Niwa & Mizuno, 2011). Studies of resilience in junior and senior high school students with congenital heart disease and in healthy students conducted by Nio (2008, 2009) showed that experience in overcoming difficulties, such as alienation from friends of the same age, feelings of inferiority, and learning delays, instilled inner strength in the students with congenital heart disease. However, the studies also suggested that measures taken by adults close to the children from early childhood that allowed them to avoid problems in family and school life interfered with the development of an “I can” attitude through the accumulation of experiences in which giving up is unavoidable. Beginning when the disease is diagnosed, the parents of children with congenital heart disease experience shock, denial, and a sense of burden (Mizuno, 2007). Moreover, parents of preschoolers or schoolchildren with congenital heart disease who thought their child was sufficiently independent for their age were proactive in explaining the illness to the child, whereas parents who thought the child could not independently cope with their condition were passive in this regard (Tabata, 2010). The wishes of adult patients with congenital heart disease with respect to healthcare include a smoother transition from pediatric care to adult care and receiving explanations of their disease beginning in childhood. It has been shown that, if the disease is first explained during adolescence, it is more difficult to accept. Consequently, explanations should preferably begin during childhood (Ochiai et al., 2008).

Fostering independence in children from a young age is considered important for enabling those with congenital heart disease to recognize the illness as their own and to manage their own body and health with the support of those close to them. However, questions regarding how nurses who care for children with congenital heart disease and parents perceive the children’s independence and the types of involvement the nurses consider necessary have not been clearly answered.

Objective

The objective of this study was to determine how skilled nurses involved with children with congenital heart disease perceive the children’s independence and the types of involvement the nurses consider necessary.

Definitions of terms

A concept analysis (Tabata, 2016) of children’s independence was conducted based on the method described by Rodgers (2000). The analysis incorporated 75 articles from the fields of nursing, education, psychology, and development in Japan. The results showed children’s independence to be explained by the attributes of active perceptions/emotions/behavior and stepwise development. This leads to a healthy sense of self, healthy development, positive emotions, and the ability to cope and adapt to surroundings, with the child’s development/emotions/experiences and the encouragement from adults close to the child as antecedents. The child’s development proceeds as the cycle of antecedents, attributes, and consequences is repeated. Consequently, children’s independence was defined in this study as active perceptions, emotions, and behavior in developing children that are influenced by their reciprocal relationships with adults and friends close to them.

Study methods

Participants

The participants were skilled nurses involved in caring for children <18 years of age with congenital heart disease in a pediatric ward or on an outpatient basis. The participants were certified nurse specialists or certified nurses or had worked in a pediatric ward or in outpatient care for at least 5 years.

Survey period

January 2017 to April 2017

Survey procedure

Written requests for study participation, consent forms, and questionnaires were distributed to 245 medical institutions employing specialists affiliated with the Japanese Society of Pediatric Cardiology and Cardiac Surgery. Then, to the 48 medical institutions (19.6%) that gave consent to participate in the study, we sent 5 copies of the instructions, consent form, questionnaire, and stamped return envelope. Nurses who returned the consent forms and questionnaires were included in the analysis.

The questionnaire was used to describe the participants’ attributes (affiliation, position, education level, and years of nursing experience) and their perceptions and practices with regard to the independence of children with congenital heart disease. The present report concerns the participants’ perceptions regarding the independence of children with congenital heart disease. The questions on the participants’ perceptions were as follows: (a) Do you feel there are problems with the independence of children with congenital heart disease, and in what situations have you felt this way?, (b) Do you feel that independence in children with congenital heart disease varies depending on the circumstances of the illness (diagnosis, patient’s condition, limitations in daily life)?, (c) Do you think support from adults close to children with congenital heart disease is needed in order to foster their independence?, and (d) What kind of encouragement is needed from adults close to children with congenital heart disease in order to foster their independence? Questions (a), (b), and (c) were answered on a 4-step scale consisting of “Yes,” “Somewhat,” “Not really,” and “No.” Specific situations were indicated using open-ended descriptions. For question (d), the forms of encouragement from adults close to the child that the participants considered necessary to foster independence were selected from among the following subcategories that were extracted in a concept analysis (Tabata, 2016): understand and respect the child, let the child notice that he or she is the central figure, establish a place where the child can feel at ease, establish a place that encourages the child to feel free, support the child’s coping measures, and praise the child’s perseverance.

Analysis

Descriptive statistics were calculated for the perceptions of the participants using SPSS Statistics 22 software. Responses were classified as “Yes,” “Somewhat,” “Not really,” and “No,” and the participants’ personal attributes were analyzed as variables using Pearson’s chi-squared test. A residual analysis was performed if the significance level was <0.05 (Duan et al., 2019; Tsubouchi et al., 2018). In addition, to obtain information that could not be obtained with the participant tasks alone, word frequency and dependency frequency analyses were performed for the open-ended descriptions of the situations in which the participants felt there were problems with the independence of children with congenital heart disease. The analyses were performed using the text mining software Text Mining Studio (version 6.0).

Ethical considerations

The study was approved by the ethics committee of Sapporo Medical University (approval no.28-2-50). In addition, approval was obtained from the ethics committee of the institutions with which the participants were affiliated, as necessary. Prospective participants were given a written overview of the study and a written statement indicating that study participation was voluntary and that the participant could withdraw at any time, and explaining matters such as the study protocol, protection of personal information, and publication of the study results. Individuals who signed the consent form were included in the study. The questionnaire was anonymous and did not identify the respondent. The data obtained were strictly managed, and meticulous care was taken to prevent the disclosure of personal information.

Results

Overview of participants

The participants were 84 nurses (35.0%) at 48 institutions. Thirty-seven of the participants (44.0%) worked at university hospitals, 30 (35.7%) at general hospitals, 14 (16.7%) at pediatric hospitals, 2 (2.4%) at hospitals specializing in cardiovascular disease, and 1 (1.2%) at a clinic. Sixty-one (72.6%) worked in wards and 23 (27.4%) in outpatient care (including those in both wards and outpatient care). Regarding educational level, 51 (60.7%) had been trained at technical schools or junior colleges, 19 (22.6%) at universities, and 14 (16.7%) at graduate schools. Forty-five (53.5%) had cared for children with congenital heart disease for less than 10 years and 39 (46.5%) for at least 10 years.

Perceptions of skilled nurses regarding problems with the independence of children with congenital heart disease – Questions (a) and (b)

Fifty-four of the 84 participants (64.3%) responded either “Yes” or “Somewhat” to the question of whether they felt there were problems regarding the independence of children with congenital heart disease. In response to the question of whether they felt that the independence of children with congenital heart disease varied depending on the diagnosis, patient’s condition, and limitations in daily life, 30 participants (35.7%) answered “Yes” or “Somewhat” for diagnosis, 46 (54.8%) for patient’s condition, and 51 (60.7%) for limitations in daily life. To determine whether there were differences in these perceptions depending on the background of the participants, Pearson’s chi-squared test was performed for the participants’ hospital departments, educational level, and length of experience caring for children with congenital heart disease. For diagnosis, the chi-squared value was 0.417 (df = 1, p = .518) for hospital department, 3.179 (df = 2, p = .204) for educational level, and 0.820 (df = 1, p = .365) for length of experience. For the patient’s condition, the chi-squared value was 0.248 (df = 1, p = .618) for hospital department, 7.960 (df = 2, p = .019) for educational level, and 1.009 (df = 1, p = .315) for length of experience. For limitations in daily life, the chi-squared value was 0.060 (df = 1, p = .806) for hospital department, 8.648 (df = 2, p = .013) for educational level, and 0.245 (df = 1, p = .620) for length of experience. Thus, significant differences in nurses’ educational levels were seen for the patient’s condition and limitations in daily life (Table 1).

Table 1. Perceptions of skilled nurses regarding factors affecting the independence of children with congenital heart disease: Comparison of nurses’ education levels

Factor	Technical School, Junior College(n = 51)				University (n = 19)				Graduate School (n = 14)				p
	YS		NN		YS		NN		YS		NN
	n	%	n	%	n	%	n	%	n	%	n	%
	AR		AR		AR		AR		AR		AR
Diagnosis	15	31.3	33	68.7	7	41.2	10	58.8	8	57.1	6	42.9	0.204
	−1.5		1.5		0.3		−0.3		1.6		−1.6
Patient’s condition	22	48.8	25	53.2	12	70.6	5	29.4	12	85.7	2	14.3	0.019*
	−2.7		2.7		1.1		−1.1		2.2		−2.2
Limitations in daily life	24	50.0	24	50.0	15	78.9	4	21.1	12	85.7	2	14.3	0.013*
	−2.9		2.9		1.6		−1.6		1.9		−1.9

YS = “Yes” and “Somewhat”; NN = “Not really” and “No”, Chi-squared test. Missing values excluded. AR = Adjusted residual, indicator of which cells had significant relationships (≥±1.96 with p < 0.05 considered significant).

*p < 0.05.

Sixty-seven participants (79.8%) provided open-ended responses about situations in which they felt there was a problem with the independence of children with congenital heart disease. Analysis of the responses showed a total of 373 sentences, 2,760 words, and 902 word types. By part of speech, the text consisted of 1,930 nouns (69.9%), 451 verbs (16.3%), and 379 other parts of speech (13.7%). In addition, a word frequency analysis was performed, and the 20 most frequent words were extracted (Figure 1). Words related to congenital heart disease management were extracted, such as limitations (35 participants), exercise (18 participants), living (14 participants), fluids (12 participants), oral administration (12 participants), patient’s condition (12 participants), and surgery (11 participants). Also extracted were words related to community life, such as school (14 participants) and friends (13 participants). A dependency frequency analysis of the text was performed, and the 20 most frequent were extracted (Figure 2). Dependencies such as the following emerged as problems related to limitations: exercise-limitation (13 participants), fluids-limitation (9 participants), and living-limitation (5 participants). Dependencies such as the following represented problems related to the pathology and characteristics of congenital heart disease: hospital admission/discharge-repeated (4 participants), in-home oxygen installation (3 participants), and understanding-difficulty (3 participants). Dependencies such as the following represented problems related to children with congenital heart disease and their family: family-decide (4 participants), family-do (3 participants), family-answer (3 participants), action-can take+not (3 participants), and communication-can+not (2 participants).

Figure 1. 20 most frequent words in open-ended descriptions of situations in which skilled nurses felt there were problems regarding the independence of children with congenital heart disease.

Figure 2. 20 most frequent dependencies in open-ended descriptions of situations in which skilled nurses felt there were problems regarding the independence of children with congenital heart disease.

Perceptions of skilled nurses regarding adult support for fostering independence in children with congenital heart disease – Questions (c) and (d)

Eighty-one participants (96.4%) answered “I think so” or “I tend to think so” to the question of whether the support of adults close to children with congenital heart disease is necessary to foster their independence.

The following items were selected as the forms of encouragement by adults close to children with congenital heart disease that were needed to foster their independence: understand and respect the child (74 participants, 88.1%), praise the child’s perseverance (68 participants, 81.0%), establish a place where the child can feel at ease (63 participants, 75.0%), support the child’s coping measures (61 participants, 72.6%), establish a place that encourages the child to feel free (45 participants, 53.6%), and let the child notice that he or she is the central figure (45 participants, 53.6%). Pearson’s chi-squared test of these responses and the nurses’ backgrounds showed a significant difference only for “let the child notice that he or she is the central figure” and the length of the nurses’ experience caring for children with congenital heart disease (chi-squared value = 5.019, df = 1, p = .025) (Table 2).

Table 2. Support needed from adults close to child to foster independence of children with congenital heart disease: Comparison of length of the nurses’ experience caring for children with congenital heart disease

Support	< 10 years^a (n = 45)		≥ 10 years^b (n = 39)		p
	n	%	n	%
Understand and respect the child	38	84.4	36	92.3	0.267
Praise the child’s perseverance	36	80.0	32	82.1	0.811
Establish a place where the child can feel at ease	35	77.8	28	71.8	0.528
Support the child’s coping measures	32	71.1	29	74.4	0.739
Establish a place that encourages the child to feel free	23	51.1	22	56.4	0.627
Let the child notice that he or she is the central figure	19	42.2	26	66.7	0.025*

Chi-squared test. * p < 0.05.

Discussion

Perceptions of skilled nurses regarding the independence of children with congenital heart disease

More than 60% of the nurses in this study felt there were problems regarding the independence of children with congenital heart disease. Many of them likely had experience caring for children with diseases other than congenital heart disease and children with congenital heart disease but with a variety of pathologies, and it is surmised that the participants also felt there were problems with the independence of some of the children in the latter group. Moreover, many of the participants felt that the independence of children with congenital heart disease varied more with the patient’s condition and limitations in daily life than with their diagnosis. Not only are the manifestations of congenital heart disease varied, but the patient’s condition changes with age (The Japanese Circulation Society 2019). The symptoms, severity, and treatment therefore vary even if the diagnosis is the same. This may explain why the patient’s condition and limitations in daily life were perceived as having a stronger effect on their lives and independence.

Situations in which skilled nurses felt there were problems with the independence of children with congenital heart disease included difficulties and limitations in understanding congenital heart disease and repeated hospital admission and discharge. Other situations mentioned included when family members made decisions and answered questions, and when the child with congenital heart disease was not able to easily act or communicate. Environmental factors for developing children’s communication skills generally include safe and loving relationships with adults they trust, opportunities for interaction with familiar or unfamiliar adults and friends, and opportunities for various types of play that promote cognitive, linguistic, and social development (Buckley, 2003). Efforts by adults close to children with congenital heart disease to avoid burdening them, beginning from early childhood, may limit the child’s variety of experience and interfere with opportunities to develop communication skills. Shackleford and Kelley (2019) examined nurses’ perceptions regarding the quality of life (QOL) of adolescent children with congenital heart disease. The nurses recognized that the QOL of such children is affected by how their psychosocial and physical problems are intertwined, and that it is important for parents to find a balance between overprotection and excessive freedom and establish goals for the future. This requires involvement that begins not in adolescence, but in early childhood. Nurses involved with children with congenital heart disease and their family members from early childhood should help the family understand the need to enable the children to manage their own bodies in the future and, to that end, focus on what the children can do, while considering the anxiety and worries of the family.

Perceptions of skilled nurses regarding encouragement by adults close to children with congenital heart disease to foster independence

The skilled nurses who participated in this study recognized that encouragement from adults close to children with congenital heart disease is necessary to foster their independence. Although the proportions ranged from 50% to 90%, at least half of the participants considered the following to be forms of support by adults needed to foster independence in children with congenital heart disease: understand and respect the child, praise the child’s perseverance, establish a place where the child can feel at ease, support the child’s coping measures, establish a place that encourages the child to feel free, and let the child notice that he or she is the central figure. In particular, the proportion of nurses who felt it was necessary to let the child notice that he or she is the central figure, which includes explaining that the disease involves the child himself or herself, was higher among nurses with a least 10 years’ experience caring for such children than in those with less than 10 years’ experience. Compared with other types of support, it is difficult for nurses to recognize the need for support that involves letting the child notice that he or she is the central figure, and they may tend to feel that this is a weakness. Other types of support include arranging surroundings that enable the child to feel at ease or free and respecting and praising the child, which are forms of support that can be provided at hospital admission or during testing or treatment. However, to let the child notice that he or she is the central figure, opportunities must be created to intervene directly with the children while listening to their family’s wishes. A literature review on the stress and emotions of pediatric nurses conducted by Yamauchi et al. (2009) found that the category “nursing skill,” which was 1 of 6 categories identified, included difficulties providing explanations and responding to problems in a manner appropriate to the developmental stage of the child due to a lack of knowledge, skill, and experience, a problem that was not limited to new nurses. Although the years of experience required to become an expert often cannot be determined, becoming an expert in a variety of areas is thought to require at least 10 years’ experience (Benner et al., 2009; Ericsson, 2006; Kitagawa, 2013; Masaoka & Maruyama, 2009; Yamada et al., 2007). Benner (2001) stated that having compassion and taking a positive stance are essential conditions for solving problems skillfully and creatively, and that experts view a problem in relation to similar and dissimilar circumstances in the past. Consequently, they understand the problem quickly and hone their ability to intuit the problem area correctly. Funakoshi et al. (2013) determined the types of care provided by skilled nurses in pediatric psychiatric wards, and reported that the nurses approached the children’s essential problems by pursuing concerns they perceived during their involvement with the child and based on a variety of information. They also showed that whether the nurses had such concerns and what they were concerned about were matters of expertise. The recognition that letting children with congenital heart disease notice that they are the central figure is a form of support necessary to foster their independence was attributed to the experts’ abundant experience and active involvement with the children and their families.

Study limitations and suggestions for the future

This study examined the independence of children with congenital heart disease, a topic that previously had not received much attention. It was therefore necessary to have skilled nurses in Japan as the participants of the study. Consequently, the results cannot be generalized to all nurses involved in the care of children with congenital heart disease. Additionally, perceptions of children’s independence may differ globally. However, the results suggest that it is important for skilled nurses to use their knowledge, skills, and their unique approach to problems. We hope to further elucidate the practices of skilled nurses that can serve as a model for fostering independence in children with congenital heart disease.

Conclusion

In this study, an anonymous, self-administered questionnaire survey was conducted on 84 skilled nurses throughout Japan involved in the care of children with congenital heart disease. The survey was conducted by postal mail. The results showed that more than 60% of the skilled nurses perceived problems with the independence of these children, and that nearly all felt that the involvement of adults close to the children was needed to foster their independence. Moreover, the view that letting the children notice that they are the central figure was more common among nurses with at least 10 years’ involvement with children with congenital heart disease, and this perception was attributed to the active involvement of the nurses with the children and their families as part of their abundant experience.

Declaration of interest statement

There are no conflicts of interest with companies, organizations, or associations that require disclosure for this study.

Acknowledgments

The authors are deeply indebted to the skilled nurses who participated in this study. This report is a partially revised and amended version of a doctoral thesis for the Graduate School of Health Sciences, Sapporo Medical University. The study was presented in part at the 28th Conference of the Japanese Society of Child Health Nursing.

Additional information

Funding

This study was conducted with the support of the Japan Society for the Promotion of Science (JSPS) research grant 18K10426.