Pediatric Nursing for Appropriate Healthcare Environment Based on United Nations Convention on Rights of Child

Abstract

Children’s rights and decision-making are central to pediatric nursing care for patients and their families. This descriptive questionnaire-based cross-sectional study aimed to identify school children’s perceptions of the United Nations Convention on the Rights of the Child (UNCRC) and their healthcare decision-making and strengthen pediatric nursing practices in consideration of children’s rights. From September to November 2015, a questionnaire was administered to 525 healthy 9–12-year-old fourth- to sixth-grade students attending a typical elementary school in Asahikawa City, Hokkaido. Data were analyzed using Pearson’s chi-square test, Bonferroni’s test, and φ coefficient. A logistic regression analysis was performed with forced imputation and likelihood ratio of increasing variables to examine the factors influencing UNCRC application. UNCRC was well known to 11-year-old children who had been hospitalized. Many children who needed explanations came from families of four and had been given explanations. The factor that influenced the knowledge of UNCRC was hospitalization. Nursing orientations based on school-aged children can help create an appropriate healthcare environment for pediatric patients and their families, but further validation is needed using other qualitative research methods.

1. Introduction

Children’s rights and decision-making are central to pediatric nursing care for patients and their families. Today, children visit hospitals and clinics to be briefed on specialized medical care that meets their needs. According to the National Hospital Ambulatory Medical Care Survey, approximately 118 million children under the age of 15 visited outpatient clinics in the United States in 2019 [1]. Furthermore, the overall age for clinic visits is declining in Japan, with the rate of these visits increasing for children aged 5–14 years [2, 3]. When children visit healthcare facilities, they encounter doctors, nurses, and other unfamiliar medical personnel and experience psychological outcomes that increase perceptions of pain, anxiety, fear, and presumed danger [4, 5]. Critically ill children are often characterized by dependency and immaturity. They have been described as becoming frightened by the lack of autonomy in their illness and are theoretically excluded from the informed consent process [6]. Emotional reactions associated with the common experience of hospitalization can also lead to post-traumatic stress disorder [7] and increase parental anxiety [8].

Recently, nurses’ participation in ethical discussions has increased the involvement of pediatric patients and their understanding of the decision-making process [9], while the endowment of choices to children during invasive procedures allows for support tailored to their individual needs [10]. In this context, a professional self-efficacy pathway model of pediatric nursing quality has been proposed [11], the Distracted Ingenuity Promotion Scale (DIPS) has been developed as a nursing strategy that respects children’s rights [12], and specific viable and creative methods of distraction are also being considered [13]. While the United Nations Convention on the Rights of the Child (UNCRC) emphasizes the importance of providing health and welfare information to children, children are not usually supported in healthcare settings [14, 15, 16]. Reports that children do not fully understand their care process or whom to talk to if they feel anxious after returning home reflect this conclusion [17]. These studies provide evidence that pediatric nurses must respect children’s rights and improve medical explanations to facilitate decision-making of pediatric patients and their families.

2. Background

In a survey of 13,261 children between the ages of 8 and 15 years, fewer than half (46%) said they were involved “a lot” in decisions about their care and treatment [17]. Furthermore, approximately 23% of all parents did not feel that nursing staff kept them “suitably” informed about their child’s care [17]. Interestingly, school-aged children were less likely to say they were involved “a lot” (43%) than adolescents (48%) [17].

School age is a developmental stage associated with trait anxiety [18], and active involvement with children has been effective in reducing pain and fear [19]. The examination of the necessary decision-making by pediatric patients and the development of established pediatric ethics research and medical protocols is gaining momentum [20, 21]. Nurses are responsible for creating an environment wherein children can be heard, understood, and respected with unprecedented dignity [22].

However, few studies reveal the extent to which nursing staff makes children feel involved and aware of their rights when receiving healthcare. For pediatric nurses to further promote practical nursing strategies toward pediatric patients and their families, child perceptions need clarification, and the gap between these and medical support needs to be eliminated. Nursing care that considers the rights of the child is expected to provide adequate support in healthcare settings, which is a psychological outcome and essential to a child-centered approach to care [10, 23]. Therefore, this study aimed to identify the perceptions of school-aged children, with a focus on the UNCRC and decision-making processes to improve pediatric nursing care that considers children’s rights.

3. Study design

3.1 Operational definitions

Following Article 1 of the Convention on the Rights of the Child, adopted and enacted as an international treaty by the United Nations, a child is any human being under the age of 18 [24]. Furthermore, based on the Commentary on Informed Consent/Consent [25, 26, 27], a “child” in this study was defined as a healthy 9–12-year-old individual attending a typical elementary school.

This school-age period was the focus because it is the age at which children experience psychological outcomes, such as trait anxiety, pain, and fear [18, 28, 29], and pediatric nurses are called upon to provide support [9, 19]. The rights of the child are to be guaranteed access to medical care, education, and support for life, so that he or she can grow up with the best interests of the child at heart and develop to his or her full potential [24, 30].

“Child decision-making” is the art of respecting the interests of the child and the family considering evidence, values, and beliefs [30, 31]. These definitions are important concepts that detail the realities and challenges of school-age children’s perceptions; this study is based on the basic evidence established to date [32, 33].

3.2 Design

This descriptive questionnaire-based cross-sectional study was conducted to determine school-aged children’s perceptions of the UNCRC and the clinical decision-making process to strengthen pediatric nursing care in the context of children’s rights.

4. Methods

4.1 Participants and setting

From September to November 2015, a questionnaire was administered to 525 healthy 9–12-year-old fourth- to sixth-grade students attending a typical elementary school in Asahikawa City, Hokkaido. The selection of target children was based on the results of the 2014 Basic School Survey, which provides basic data for school education administration [34]. In 2014, Japan’s youth population (0–14 years old) was 1,666,491, while that of Asahikawa was 40,525 [35]. The sample size was calculated using G* Power 3 software with an effect size of 0.5 [36], an alpha error probability of 0.05, and a detection rate of 0.95 [37]. The calculated sample size was more than 210 children, which was justified as a reliable measurement. The inclusion criteria were as follows: (1) children between 9 and 12 years, (2) fourth- to sixth-graders attending regular elementary school, and (3) physically and mentally healthy children. The exclusion process was as follows. First, participants who had one or more unanswered items in the questionnaire were excluded. Second, children unaware that they had visited a medical facility were excluded. These procedures were important to determine accurate and step-by-step data analysis to meet the research objective of identifying school-aged children’s perceptions of having seen a healthcare provider (Figure 1). Furthermore, to conduct this quantitative study, it was necessary to avoid statistical bias in the selection of pediatric participants.

Figure 1.

Flowchart of participants based on the selection criteria for analysis.

A pseudorandom number was applied to the municipalities and survey participants were selected from each elementary school for random sampling. The study’s research plan was explained to the Asahikawa City Board of Education, and approval and permission were received from the committee to conduct the survey. Next, each elementary school’s principal was asked to participate in the survey by phone. The necessary number of questionnaires was created after receiving their approval. Precise procedures were followed to ensure that survey forms were distributed to the participants by their classroom teachers. Two study instructions—one for the participant and one for the parents—were included in the questionnaires. Standard procedures were followed to collect the questionnaires after obtaining parents’ consent. Participants completed the distributed questionnaires at home, which were then submitted by the respondents and their parents after providing informed consent.

4.2 Participant characteristics

Information on 10 attributes was collected: sex, age, school grade, number of family members, number of siblings, hospital visit status, hospitalization experience, awareness of UNCRC, desire to receive explanations and experience of receiving explanations. For participants who answered that they had received explanations, two additional items were added: feelings after receiving explanations and perception of the person who gave the explanations; this resulted in a total of 12 attributes.

4.3 Rationale for focusing on the attributes of Children’s rights and decision-making

This study followed the best interest standard (BIS) of ethical principles in children’s healthcare and shared decision-making (SD-M) available to patients, parents, and healthcare professionals (HCPs) [38]. BIS and SD-M have received criticism for their respective concepts, especially the misunderstanding of “best” and “shared” and their independent functions [39, 40]. Hence, the shared optimization approach (SOA) was recently generated as a coherent framework combining BIS and SD-M in UNCRC publications [31]. Based on the principles of participation, provision, and protection, it is designed to address various tasks (limiting harm, showing respect, defining options, and executing plans) with discrete dimensions and steps (Figure 2).

Figure 2.

Shared optimal approach for reconciling the best interest standard and shared decision-making. HCP, health care professional: Note. Figure 2 is reproduced with permission from the copyright holder as reference material for this research (Springer Link: Reproduction permitted).

From these, one can see that the SOA’s overarching maxims [31] require an understanding of the child’s age, elementary school grade, and comprehensive life background of the family, including that of parents and siblings. It is necessary to ensure that the attributes of this study and the SOA’s “goal-oriented principles” [31] are considered appropriate to capture children’s experience of hospital visits and hospitalizations, which are opportunities for them to face medical care.

The SOA “Dimensions of Implementation” [31] provides an environment where school-age children make decisions based on the UNCRC; it also simultaneously refers to a condition in which pediatric nurses are cautious in nursing practice. To fully consider the evidence, values, and beliefs that respect the interests of children and their families considering these factors, knowledge about the UNCRC, desire to receive explanations, the experience of receiving explanations, feelings after having received explanations, and perception of the person who provided these explanations cannot be excluded as attributes. The superficial validity of the questionnaire was pre-tested on children aged 9–12 years (n = 4) and checked by a university professor (n = 2) with knowledge of pediatric nursing. After the pre-test, modifications were made to avoid difficult terms, limit the number of questions, and ensure that the intent of the questions was understood.

4.4 Statistical analyses

All statistical analyses were performed using SPSS version 23.0 (IBM, Armonk, NY, USA). The descriptive statistics of the participants are expressed as numbers and percentages. For the nominal scale of each attribute, Pearson’s chi-square test was employed to analyze the pattern of occurrence and adjusted residuals for multiple groups and multiple classifications. When the sample size was small, Fisher’s exact probability test and Yates’s correction were used to check whether there was a statistically significant association between the two variables, and Bonferroni’s test was used for multiple comparisons. The degree of association of each attribute is referred to as the φ or Cramer V coefficient. To examine the influencing factors, the dependent variable was knowledge of UNCRC, and a logistic regression analysis was performed using the forced imputation method to ensure that the independent variables were treated equally. The likelihood ratios of the method to increase the variables were also checked to confirm the significance of the entire regression equation. The evaluation indices of the regression model were calculated using the goodness of fit, significance, and positive discrimination rate.

4.5 Ethical approval

Ethical considerations such as participant anonymity, data confidentiality, and voluntary participation were explained to the study participants’ parents, who then choose whether to convey this to their children. By returning completed anonymous questionnaires, participants and their parents/guardians consented to participate in this study. This study was approved by the Asahikawa Medical University Research Ethics Committee (approval no. 15075).

5. Results

5.1 Comprehensive demographic data on participants

A total of 263 participants were selected through questionnaires. Of these, 9 (3%) were excluded by step 1 of the exclusion criteria, and 16 (6%) were excluded in step 2. The participants in the study cohort were 238 children aged 9–12 years (mean ± standard deviation [SD]: 10.64 ± 0.91 years). Table 1 shows the comprehensive demographic data of the entire participant population. Of these, 99 children (41.6%) had experienced hospitalization and 68 (28.6%) had visited the hospital as outpatients. The number of children reporting knowledge of UNCRC was 11 (4.6%), which did not correspond to 5% of the total. Table 2 shows the comprehensive demographic data of the participants who received the explanation. All 217 (100.0%) participants who received the explanation reported that they were positive and the explanations were provided by 133 doctors (61.3%), 31 nurses (14.3%), and 53 doctors/nurses/family members (24.4%).

Variables	n	%
Sex
Male	106	44.5
Female	132	55.5
Age
9 years	28	11.8
10 years	73	30.7
11 years	94	39.5
12 years	43	18.1
School year
Fourth grade	66	27.7
Fifth grade	71	29.8
Sixth grade	101	42.4
Number of family members
2–3	43	18.1
4	129	54.2
>5	66	27.7
Number of siblings
1	35	14.7
2	141	59.2
>3	62	26.1
Outpatient status
During outpatient visit	68	28.6
Not during outpatient visit	170	71.4
Hospitalization experience
Experienced	99	41.6
No experience	139	58.4
About UNCRC
I just know	11	4.6
I do not know	227	95.4
Need for explanation
I need it	217	91.2
I don’t need it	21	8.8
Whether explanation was
Received	217	91.2
Not received	21	8.8

Table 1.

Comprehensive demographic data of all participants (n = 238).

Note. UNCRC, United Nations Convention on the Rights of the Child.

Variables	n	%
Impression after explanation
It was good	217	100.0
It was not good	0	0.0
The person who explained
Doctor	133	61.3
Nurse	31	14.3
Doctors, nurses, and families	53	24.4

Table 2.

Comprehensive demographic data of the participants who received the explanation (n = 217).

5.2 Comparison of attributes between groups related to Children’s rights and decision-making

The sample size for this study was carefully considered when dividing the children into appropriate groups, which allowed for reasonable comparisons. UNCRC was well known to children who were 11 years old (p < 0.05, φ = 0.206) and had been hospitalized (p < 0.01, φ = 0.220) (Table 3).

Table 3.

Attribute relationships with children who do not know about UNCRC (n = 238).

In addition, older children, children in higher grades, and those with more family members and siblings tended to have more knowledge about the UNCRC. Among the children who knew about the UNCRC, all reported that they required and had received an explanation. Many who answered that they needed explanations were children in a family of four (p < 0.05, φ = 0.160) and children who had been given explanations (p < 0.001, φ = 0.321) (Table 4).

Table 4.

Attribute relationships with children who needed explanations (n = 238).

Children who answered that they did not receive an explanation tended to say that they did not need an explanation more than children who had received one, and children who received an explanation were more likely to want to receive one from a doctor (p < 0.05, φ = 0.201) (Table 5). On the other hand, all the children who answered that no explanation was necessary felt that no explanation was required from the doctor. None of the children indicated that they did not need an explanation from the nurse or doctor/nurse/family.

Table 5.

Attribute relationship between the explainer and children (N = 217).

5.3 Factors affecting the knowledge of the UNCRC

Factors affecting the knowledge of UNCRC were evaluated using binomial logistic regression analysis. The regression equation obtained by the forced imputation method was guaranteed to be significant by the Cox and Snell R-square (0.093), Nagelkerke R-square (0.282), and omnibus test of model coefficients (p < 0.05). The results of the model χ-square test revealed that the factor influencing UNCRC was hospitalization experience (B = 2.708, 95% confidence interval [CI]: 1.698, 132.404, p < 0.05) (Table 6). The odds ratio (OR) for having been hospitalized was 14.996, indicating that children who had been hospitalized were about 15 times more likely to know about the UNCRC than those who had not been hospitalized. The goodness of fit of this regression equation was high with the Hosmer–Lemeshow test (p = 0.442), and the discriminant accuracy rate was 94.9%. In addition, when these binomial logistic regression analyses adopted the method of variable increase by the likelihood ratio, independent variables other than hospitalization experience were excluded. The results of the final procedure were the omnibus test of the model coefficients (p < 0.001), model χ-square test (B = 2.757, 95% CI: 1.978, 125.396, p < 0.01), and OR of the hospitalization experience of 15.750. Thus, the results of the independent variables affecting knowledge of the dependent variable UNCRC are warranted.

Predictive variables	B	SE	Wald	df	p	Exp (B)	95% CI for Exp (B)
							Lower	Upper
Sex	0.578	0.718	0.647	1	0.421	1.782	0.436	7.287
Age	−1.042	0.792	1.730	1	0.188	0.353	0.075	1.667
School year	0.455	0.938	0.235	1	0.628	1.576	0.251	9.907
Number of family members	−1.523	0.813	3.508	1	0.061	0.218	0.044	1.073
Number of siblings	0.795	0.776	1.049	1	0.306	2.214	0.484	10.135
Outpatient status	−0.120	0.725	0.027	1	0.869	0.887	0.214	3.675
Hospitalization experience	2.708	1.111	5.937	1	0.015	14.996	1.698	132.404
Need for explanation	−0.900	1.284	0.492	1	0.483	0.407	0.033	5.034
The person who explained	−0.043	0.423	0.010	1	0.919	0.958	0.418	2.194

Table 6.

Factors affecting knowledge of UNCRC (n = 217).

Note: UNCRC, United Nations Convention on the Rights of the Child; B, partial regression coefficient; SE, standard error; df, degree of freedom; p, p-value; CI, confidence interval.

6. Discussion

School-aged children’s perceptions of the UNCRC and decision-making indicate the need for nurses to consider children’s rights in pediatric nursing. The results of this study support the important concept of nurses implementing the best interest criteria to support a child-centered, family-oriented process [12, 30, 31]. The UNCRC and decision-making as perceived by school-aged children experiencing psychological outcomes, such as trait anxiety, pain, and fear, were proved to be closely related to the healthcare environment [16, 18, 28]. Based on these findings and resulting from the clarification of perceptions of school-aged children, the responsibility of nurses in creating a respectful environment for children may be fulfilled at the behavioral level. This section provides a detailed rationale for school-aged children’s perceptions of the UNCRC and their decision-making process, so that pediatric nurses can provide appropriate care to all children and their families.

6.1 Ethical issues faced by school-aged children

According to Piaget’s theory of cognitive development, school-aged children are in the concrete operational stage when they begin to solve problems logically, but can only solve those problems that apply to a specific event or problem [41]. According to Erikson’s theory of personality, school-aged children strive to prove their ability to be rewarded in society and require a supportive environment to improve their ability to achieve these goals [42]. Thus, school-age development was scientifically proven, children’s rights and freedoms were respected, and laws and guidelines were formed. For example, Article 17 of the UNCRC states that “children have the right to access information that is important to their health and well-being” [33]. Furthermore, Article 5 of the European Association for Children in Hospitals states that “children and parents have the right to be informed participants in all decisions related to their health care” [43]. However, the perception of school-age involvement in decisions regarding care and treatment is low [17], which exacerbates children’s fears and anxieties [44].

These are salient ethical issues for school-aged children and their families who are about to receive medical care. Therefore, pediatric nurses must strengthen the environment in which they contribute to the resolution of ethical issues and the decision-making process and become advocates for the dignity of the child [22, 45]. The results of this study provide information that can help pediatric nurses focus on and improve UNCRC and decision-making processes in the context of these ethical issues.

6.2 Awareness of children’s rights and decision-making

In this study, it was necessary to understand UNCRC and decision-making in school-aged children to enhance pediatric nursing care that considers children’s rights. First, it has been suggested that the older the age, the greater the knowledge school-aged children have about the UNCRC, and that their understanding may increase with the developmental stage. This can be viewed positively from the perspectives of the cognitive developmental theory [41] and ego theory [42] as children trying to become aware of the UNCRC. This study also found that the demand for explanations may depend on the number of family members and that children’s decision-making processes require family involvement. This can also be interpreted as an attribute that is supported as a construct in SOA [31].

In contrast, more than 90% of school-aged children who had previously been briefed in hospitals and clinics stated that they wanted to continue, but more than 95% were unaware of the UNCRC. This result parallels children’s lack of support in the healthcare environment [16] and the lack of participation in decisions regarding their care and treatment [17]. In other words, the inability of children to self-determine their personal needs is expected to increase their fear [44, 46] and induce parental anxiety [8]. Furthermore, 13 of the 217 children who received the explanation and 8 of the 21 children who did not receive the explanation said that they did not need an explanation. Children should be allowed to receive explanations and be able to make decisions about whether they want to receive another explanation [33, 43]. However, it was found that about half of the children who did not receive an explanation were in a serious condition for which they did not want any further explanation. To increase the participation and understanding of pediatric patients in the decision-making process and instill trust in team members, it is important to focus on nursing ethics [9]. Therefore, increasing opportunities for school-aged children to learn about UNCRC and decision-making before they go to the hospital or clinic needs to be addressed.

6.3 Benefits to children and families of explanations of individual healthcare

In practice, it is necessary to focus on HCPs to consider ethical principles in children’s healthcare as well as evidence of respect for the interests of children and families, values, and beliefs [31, 38, 47]. The results of this study showed that school-aged children often sought clarification from physicians. This is a time when school-aged children develop the concept of illness [48], and based on this, they have proven to be proactive and willing to engage in treatment [42]. This is also consistent with previous research on physicians building moral trust in school-aged children [49, 50].

However, on examining the relationship between HCPs and the need for explanations, the results indicated that school-aged children who did not want explanations concentrated on physicians. This could be related to the fact that they were not involved in decision-making regarding care and treatment [17]. They may also have previously undergone invasive medical procedures without being given the option to receive explanations, which may have been distressing to experience [7]. Furthermore, the lack of explanation to parents for painful emotional experiences in school-aged children may be one of the causes of increased parental anxiety [8, 16]. Conversely, there were no school children who did not want explanations from nurses alone or doctors, nurses, and their families. These results also support the need for the promotion of SOAs to consider HCPs comprehensively based on the UNCRC [31].

Therefore, it can be said that pediatric nursing is currently required to foster the creation of an environment where children and their families can receive appropriate explanations at the right developmental age of the child. Specifically, the use of DIPS is recommended [12], as it can be implemented by pediatric nurses, including nursing ethics, in addition to the SOA [31]. These tools, and the study results, which have focused on HCPs and explanatory needs, demonstrate the need to ensure benefits to children and families in UNCRC-aware nursing management.

6.4 The UNCRC and inpatient experience

The UNCRC has stated that Sisom, an eHealth service, has created a communication space in medical settings allowing for the voices of school-aged children to be heard [51]. HCPs’ actions have influenced children’s active participation in decision-making processes, including medical care, indicating the need to increase awareness among health professionals [23]. While school-aged children experience psychological consequences that increase their perceptions of pain, anxiety, fear, and perceived threat when receiving medical care, they are also more likely to be exposed to the UNCRC as a result [4, 5]. Our study results demonstrate that hospitalization of school-aged children is an opportunity to learn about the UNCRC.

However, pediatric nurses should pay special attention to whether children can learn about UNCRC without hospitalization. In other words, since a child’s autonomy is known to be under threat from disease [6], they should be aware of the UNCRC before they see a doctor, so that they can exercise their rights. For example, if a pediatric nurse explains the UNCRC before and after a pediatric patient’s visit or treatment, it can facilitate decision-making for these patients and their families [23]. Pediatric nurses can also create a respectful environment for children by providing a forum for discussing the UNCRC not only in the medical field but also through elementary schools and institutions. Thus, enhancing school-aged children’s awareness and pediatric nursing practice regarding UNCRC and decision-making will contribute to the best interests of children and their families [22].

6.5 Strengths and limitations

6.5.1 Strengths

Pediatric nursing research on UNCRC and decision-making interventions, especially from the perspective of children, remains challenging. This study carefully examined decision support that respects children’s rights from the perspective of school-aged children and provided insights useful for pediatric nurses in their clinical practice.

6.5.2 Limitations

This study has two major limitations. First, to gain the understanding and support of the survey participants, only school-aged children living in some parts of Japan were included in the study, and older data were used. This limits the generalizability of the findings. Second, the analysis of school-aged children’s perceptions considered only quantitative data on attributes extracted from previous research rather than open-ended textual data. Further validation of our findings will require sufficient sample size, stability checks, new data including participants from different ethnic groups, and further research using induction.

7. Conclusion

Nursing orientations derived from the perceptions of school-aged children can help create an appropriate healthcare environment to support pediatric patients and their families. This concept, based on the UNCRC, adds to the rights of the child that must be respected by all pediatric nurses and underlines the efforts required by medical staff to share healthcare information with families to determine the best approach for pediatric patients. Awareness of the child’s age is an indicator for pediatric nurses to optimize their planning and practice in pediatric and family nursing. However, considerations regarding awareness of school-aged children need to be further validated using other qualitative research methods.

Acknowledgments

The author would like to thank all school-aged children and parents who participated in this study. The author would also like to thank Editage (www.editage.com) for English language editing.

Funding and role of the funding source

This study was funded by Asahikawa Medical University’s Innovative Research in Life Science.

Conflict of interest

The author declares that there is no potential or existing conflict of interest relevant to this article.

Ethics statement

This study complies with the principles enunciated in the Declaration of Helsinki, which is the ethical principles for medical research involving human participants.