Healthy lifestyles in childhood cancer survivors in South Korea: a comparison between reports from children and their parents

Article information

Child Health Nurs Res. 2022;28(3):208-217

Publication date (electronic) : 2022 July 31

doi : https://doi.org/10.4094/chnr.2022.28.3.208

Kyung-Ah Kang¹, Shin-Jeong Kim^,2, Inhye Song³

¹Professor, College of Nursing, Sahmyook University, Seoul, Korea

²Professor, School of Nursing, Research Institute of Nursing Science, Hallym University, Chuncheon, Korea

³Graduate Student, College of Nursing, Sahmyook University, Seoul, Korea

Corresponding author Shin-Jeong Kim School of Nursing, Hallym University, Hallym University Road 1 in Chuncheon, Gangwon Province 24252, Korea TEL: +82-33-248-2721 FAX: +82-33-248-2734 E-MAIL: ksj@hallym.ac.kr

Received 2022 June 19; Revised 2022 July 10; Accepted 2022 July 13.

Abstract

INTRODUCTION

In recent years, the survival rate of childhood cancer patients has increased dramatically, owing to innovative medical technology and advances in treatment. Consequently, the population of childhood cancer survivors (CCS) is rapidly growing worldwide [1-3]. In North America, the overall 5-year survival rate of CCS is over 80%[4,5]. Similarly, according to a Korea Disease Control and Prevention Agency report, the average 5-year survival rate of childhood cancer in Korea has increased to 80%[6].

However, because of therapy-related complications, up to 70% of CCS suffer from at least one chronic health problem after completing treatment [1]. CCS are generally considered a distinct and vulnerable group, as children who survive cancer continue to be at risk of developing health issues that persist years after completing cancer treatment [3,7-9]. Multiple health conditions result in a high cumulative chronic disease burden in CCS [1]. Therefore, specialized screening and lifestyle management are required for the early detection and prevention of late effects. A healthy lifestyle (HLS) may lead to better clinical outcomes in CCS [9]. The impact of physical and psychosocial effects is often linked to health-related quality of life. From this point of view and considering their scores in HLS measurements, CCS have poorer than average experiences of childhood [1]. Understanding these aspects may lead to a successful transition from the completion of cancer treatment to optimal long-term surveillance. In addition, HLS factors may not only help diminish the risk of chronic health conditions but also promote the health of CCS.

Children between 6 and 12 years old are in a period of concrete operational cognitive development, developing the sense of industry, their own perspectives, and acquiring new technology in daily life [10,11]. In addition, they illustrate the virtues of active work, a practical approach, and the developmental progression of illness knowledge. Thus, they may be able to take healthy actions and modify behaviors, such as unhealthy lifestyles.

The importance of the daily functioning of CCS has emerged as a research focus in recent years [11]. However, related information is only available to a limited extent, although CCS need such information to maintain and promote an HLS. In this regard, a daily HLS is salient to a CCS's life. Long-lasting interruptions in daily life may have lifelong psychosocial and socioeconomic consequences [12]. Hayek et al. [13] identified that CCS showed a higher prevalence of frailty than their siblings or peers. They suggested that promoting an HLS is needed to decrease the prevalence of frailty and preserve function in this at-risk population. Building connections between children's daily function and HLS can impact their overall quality of life, but existing research on survivorship services is limited [14]. Providing care for these patients requires identifying and recognizing their HLS. Moreover, children's HLS is strongly influenced by their parents' nurturing style and the surrounding environment [11]. Therefore, obtaining information on the HLS of CCS as reported by the children themselves and their parents may be the first step toward planning and implementing nursing interventions for maintaining positive health outcomes.

This study aimed to characterize the everyday behavior of CCS in terms of their HLS during their survival period. Thus, we took the following steps: 1) obtaining information on the HLS of CCS as reported by CCS themselves; 2) obtaining information on the HLS of CCS as observed by their parents; 3) comparing children's and parents' reports of the HLS of CCS; and 4) identifying aspects of HLS needing improvement as reported by CCS and their parents.

METHODS

4. Measures

The conceptual framework (Figure 1) of this study drew upon the Adolescent Lifestyle Profile-Revised 2 (ALP-R2) tool developed by Gaete et al. [17] to analyze the HLS of CCS. The ALP-R2 tool consists of seven sub-dimensions with a total of 44 items, including health responsibility (7 items), physical activity (6 items), nutrition (7 items), positive life perspective (6 items), interpersonal relations (6 items), stress management (6 items), and spiritual health (6 items). The total scale reliability of the ALP-R2 was shown by a Cronbach's α of .87.

Figure 1.

Conceptual framework. CCS, childhood cancer survivors.

In this study, the number of items was reduced to fit school-age developmental characteristics. Permission for using the tool was obtained from its developer. In addition, it was agreed that the content validity would be verified after reducing and modifying the items according to the characteristics of school-age children. The process of reducing and revising the tool items was as follows.

First, the items of the ALP-R2 tool were translated into Korean by a nurse who could speak English at a bilingual level. Second, after researchers reviewed the 44 translated items, 34 items were selected, and the words and context were modified to suit the comprehension level of school-age children. Third, the initial version of the translated and revised tool was tested for content validity on eight healthy elementary school students. Each item was rated from 1 (not at all appropriate) to 4 (very appropriate) on a 4-point Likert scale, and participants were asked to freely express their opinions on individual items. A content validity index of .74 was observed. The revised tool, reflecting the results of the primary content validity test, was subjected to a secondary content validity test by eight experts in nursing for children with cancer (four professors of nursing, one social worker at a pediatric cancer hospital, one pediatric oncologist, and two nurses at general hospitals). A content validity index of .82 was obtained. One of the four spiritual health items was deleted, based on the received opinions on content validity, resulting in a total of 33 items. The revised tool, reflecting the results of the secondary content validity test, was tested for tertiary content validity by two children with cancer and two parents. A content validity index of .86 was observed.

Fourth, after three rounds of content validity verification, the 33 revised items were reverse-translated by two bilingual middle school students and a nurse living in the United States. A total of four people (three nursing professors and one bilingual nurse) checked the agreement of the reverse-translated version with the original text. The consistency of the 33 items was 88%-100%.

After translation, content validity, and reverse-translation, the final confirmed tool contained 33 items including health responsibility (6 items), physical activity (4 items), nutrition (4 items), positive life perspective (5 items), interpersonal relations (6 items), stress management (5 items), and spiritual health (3 items). For parents' assessments of the HLS of CCS, the subject of the 33 items was changed from "I" to "my child."

In this study, the reliability of the 33 items identified in the data collected from CCS and their parents was shown by Cronbach's α values of .90 and .87, respectively. As general characteristics, CCS were asked to provide information on their gender and age. Table 1 shows the characteristics of CCS and their parents. One open-ended question was asked to both CCS and parents: "What am I (or is my child) not doing well in order to be healthy?".

Table 1.

Description of the Sample According to Demographic Variables (N=138)

RESULTS

3. Differences in Children's Healthy Lifestyles between Childhood Cancer Survivors' and Parents' Reports

There was no significant difference between the HLS scores reported by the CCS themselves and the HLS scores reported by their parents (Table 2). Moreover, the seven sub-dimensions showed no statistically significant differences in reports between CCS and their parents.

Table 2.

Childhood Cancer Survivors' and Their Parents' Reports on Children's Healthy Lifestyles (N=136)

4. Areas for Improvement in Healthy Lifestyle-Related Behavior Reported by Childhood Cancer Survivors and Their Parents

The results of the degree and eigenvector centrality for the response to the open-ended question (What am I (or is my child) not doing well in order to be healthy?) are as follows (Table 3). Among the children's own responses, the main keywords belonging to the top 10 were "exercise", "unbalanced diet", "food", "cellphone", "instant", "temptation", "body", "meal", "snack", and "computer". Among parents' responses regarding their children's unhealthy practices, the main concepts belonging to the top 10 were "unbalanced diet", "exercise", "self-control", "food", "body", "vegetable", "environment", "cellphone", "needs", and "treatment".

Table 3.

The Degree and Eigenvector Centrality of Keywords Regarding the Open Question

DISCUSSION

The increasing survival rates of CCS, which exceed 80%[13,20], imply that HLS is a key concept for maintaining and promoting the health status of these children. In this study, the HLS reported by the CCS and their parents showed a moderate level, including sub-dimensions, except for "spiritual health".

Stress management had the highest HLS score among the seven sub-dimensions. Emotional stability may be linked to CCS' health during the period of survival. In the current study, although the HLS score of stress management placed it in the most desirable position among the seven sub-dimensions, some types of childhood cancer may enhance children's susceptibility to a number of psychosocial effects, such as loneliness, depression, and withdrawal from society [20]. Compared to other children, CCS are also prone to an increased risk of traumatic stress syndrome [20]. Although previous studies have shown that pediatric cancer survivors did not complain about psychological symptoms, during the transition from the acute to survivorship period, anxiety may continue to affect their physical well-being through a variety of mechanisms [21]. Barone et al. [22] reported that psychological distress and emotional symptoms were observed in 13% to 29% of adolescent survivors. The identification of stress management may aid CCS in choosing appropriate coping strategies in their present life.

Regarding interpersonal relations, CCS may be unable to maintain close relationships due to frequent treatments and limited contact caused by unexpected health problems. Social isolation is a significant challenge for CCS, impacting their everyday life even years after cancer was cured. Because of the long-lasting impacts of cancer on their peer relationships, they may distance themselves from their friends. Peer support plays an important role in decreasing stress and increasing adaptive coping in CCS [23]. Supportive relationships with parents and peers may serve to protect CCS from distress and help them have higher self-esteem [23].

The positive life perspective showed above-moderate levels in our study on HLS. Similarly, Andres-Jensen et al. [12] observed that cancer survivors generally viewed their health positively. By contrast, Bradford et al. [15] reported that adolescents and young adults had lower health-related quality of life than their healthy peers. Everes [24] explored the emotions of adolescents and young adults who experienced cancer, showing that they had both positive and negative life perspectives, possibly including fear, frustration, comfort, worry, belonging, trust, loneliness, acceptance, encouragement, connectedness, shame, guilt, pride, safety, and love. In this study, CCS seemed to consider and accept themselves as overall healthy, with their parents having a similar attitude. These findings imply that there are differences in positive life perspective between CCS and young adult cancer survivors. Therefore, CCS need help to adapt to their physical condition and have a positive view of their own health [12]. The three sub-dimensions (stress management, interpersonal relations, and positive life perspective) showing mean scores above 3 points had different aspects in comparison with adolescent and young adult cancer survivors, which may imply the relevance of these factors as developmental characteristics.

In the health responsibility sub-dimension, CCS scored higher than 2.5 points on the 4-point Likert scale. A survivor is defined as a person who is free of a life-threatening disease for at least 5 years [3]. According to a recent research report, the name "survivor" is regarded as a concept associated with overcoming adversity in those who have had cancer, and it is associated with a positive image [25]. It has also been reported that identifying as a cancer survivor can motivate children to actively cope with diseases by promoting awareness of the need for continuing medical management even after cancer treatment is completed [26]. In this study, the need for nursing intervention to help CCS take responsibility for their own health care was investigated by analyzing the degree of health responsibility among CCS.

The nutrition score was lower-ranked among the seven HLS sub-dimensions. Recent studies on the health-related quality of life of CCS published in Korea have only reported the results for physical, informational and healthcare system-related, psychosocial (related to school life), financial, and positive self-motivation needs, while few studies have investigated nutrition management [27]. In contrast, in international research on CCS, several systematic reviews or meta-analyses have reported the positive effects and importance of dietary interventions on the health-related quality of life of CCS [28]. In this study, the results for degree and eigenvector centrality showed a high demand for nutrition based on the main keywords (e.g., unbalanced diet, food, instant). This result may be related to CCS having more assistance from nurses for self-care.

Recent data indicate that more than 50% of CCS are at risk for exercise intolerance [13]. This study showed relatively low scores for the physical activity of CCS. In general, physical activities among children are likely to lead to other social activities and emotional enjoyment, thereby contributing to regular engagement [5]. Consistent with the results of this study, Australian CCS had a lower level of physical activity during survivorship than government recommendations and the general population [5]. Enhancing physiological capacity may not only improve the general health condition and wellness, but also emotional health, the ability to optimally participate in social roles, and the perception of quality of life among adult survivors of childhood cancer [13].

Spiritual health had the lowest score in this study. Spiritual well-being can provide CCS and their parents with positive coping strategies to find meaning and purpose in life during the survivorship period, and it may promote CCS' well-being beyond a cancer diagnosis into survivorship, since it has a protective role, reducing anxiety and depression [2,21]. A high level of life meaning/peace is more likely to generate better mental health and quality of life for CCS [21]. In Korean culture, there is a need for more in-depth explorations regarding the awareness of spiritual health among CCS and their parents.

CCS require much attention because they still have substantial unmet needs related to poorer quality of life that should be addressed. Both parents and nurses are encouraged to pay particular attention to four sub-dimensions (health responsibility, nutrition, physical activity, and spiritual health). Since the present study compared self-reported findings for the HLS of CCS with HLS as perceived by parents, the reliability of the self-reported results was ensured, as there were no significant differences in the mean values between the two groups in any of the seven sub-dimensions and total scores. Nurses are essential for CCS survivors and their families to ensure appropriate survivorship care and care coordination after the completion of cancer treatment [29]. This study has some limitations that should be noted. First, the participants in this study were recruited from a single center (Korea Pediatric Cancer Foundation); thus, this sample was not representative of the entire CCS population. Second, the results were derived from questionnaires filled out by children and their parents through self-reporting (subject to reporting and recall bias) independently in order to avoid mutual influence, instead of by having investigators observe their behaviors (performance). This study found no significant difference between children's and parents' responses regarding the HLS of children. However, further study would be necessary to determine whether significant differences exist in any factors that influence these responses. Finally, the revised 33-item tool that was modified to be suitable for CCS based on the original tool (ALP-R2) requires re-verification to confirm its reliability and validity with an expanded number of participants in future studies.

CONCLUSION

The findings of this study identified aspects (health responsibility, nutrition, physical activity, and spiritual health) that are particularly important for enhancing HLS in CCS. These results could provide a basis for further studies on specialized follow-up care and survivorship programs for the CCS population. Our study may not only prove useful for CCS and families for directing survivorship care, but also be helpful to cancer survivors in other developmental stages. Consequently, the findings of this study might help nurses become aware of the importance of HLS among CCS and their parents, and enable them to support CCS in implementing an HLS by acquiring knowledge about self-care for their own health.

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