This study investigated childhood cancer survivors' behavior related to a healthy lifestyle during their survival period by comparing reports between childhood cancer survivors and their parents.
In this comparative descriptive study, a survey was conducted with a 33-item questionnaire and one open-ended question about areas for improvement. The participants comprised 69 childhood cancer survivors and 69 of their parents, for a total of 138.
The total mean healthy lifestyle score, on a 4-point Likert scale, reported by childhood cancer survivors was 2.97, while that reported by their parents was 3.03. No significant differences in children's healthy lifestyles were found between childhood cancer survivors' and their parents' reports (t=0.86,
Obtaining information on childhood cancer survivors' healthy lifestyles based on reports from themselves and their parents provides meaningful insights into the improvement of health care management. The results of this study may be used to develop and plan healthy lifestyle standards to meet childhood cancer survivors' needs.
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 [
However, because of therapy-related complications, up to 70% of CCS suffer from at least one chronic health problem after completing treatment [
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 [
The importance of the daily functioning of CCS has emerged as a research focus in recent years [
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.
This was a comparative descriptive study conducted to identify differences in children's reported HLS as described by CCS and their parents.
A survey was conducted among CCS and their parents who were registered as members of the Korea Pediatric Cancer Foundation and agreed to participate in this study. The eligible CCS participants were those who were 1) of school age (6-12 years old), 2) diagnosed with cancer and had completed treatment, 3) able to read and understand questionnaire items, and 4) willing to participate. The parents of all CCS were required to provide consent. In addition, parents of CCS who agreed to participate in this study were also surveyed. The exclusion criteria were severe psychiatric or cognitive conditions hindering participation in a questionnaire survey.
The calculation of the appropriate sample size was based on a previous cross-sectional study [
Prior to conducting the research, institutional review board approval was obtained from the research committee of Sahmyook University (No. 2021082HR). The Korea Pediatric Cancer Foundation was asked for cooperation after the purpose of the study was explained. Through the Korea Pediatric Cancer Foundation, an announcement was made regarding the purpose of this study, the study participants (school-age CCS and their parents), the survey content and method, and gifts provided after the survey. With participants' permission, their phone numbers were collected.
After a trained researcher called the participants individually to explain the purpose of the study and the survey method, a Google Forms questionnaire containing written consent was sent to the children and parents, respectively. The online survey was conducted from August 25 to September 30, 2021, and it took 10 to 15 minutes to complete. An online gift card was sent to the subjects who completed the questionnaire.
The conceptual framework (
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.
The demographic information and quantitative survey results were analyzed as descriptive statistics using SPSS for Windows version 26 (IBM Corp., Armonk, NY, USA). Continuous variables were presented as mean and standard deviation, and categorical variables were presented as frequencies and percentages. The independent t-test was used to analyze differences in children's reported HLS between CCS and their parents.
The answers to the open-ended question regarding areas for improvement in HLS were analyzed using NetMiner version 4.0. The node filtering process was applied only to nouns as morphemes [
Degree centrality measures the number of connections carried by a single node; a node with a higher degree centrality value and a higher number of connections within a network is a core keyword [
The child participants were 37 girls (53.6%) and 32 boys (46.4%). Their mean age was 9.5 (standard deviation [SD]= 2.0) years, and the average age at the time of cancer diagnosis was 4.6 (SD=2.9) years. The most common type of cancer was leukemia, which was present in 41 (59.4%) CSS. The treatments they received were chemotherapy for 50 (72.5%), hematopoietic stem cell transplantation for 28 (40.6%), surgery for 25 (36.2%), and radiotherapy for 16 (23.2%). Among the children, 54 (78.3%) had no recurrence, while 15 (21.7%) experienced recurrence. The health status perceived by the CCS was moderate in 29 (42.0%), healthy in 21 (30.4%), not healthy in 13 (18.9%), and very healthy in 6 (8.7%) (
Most of the surveyed parents were mothers (65, 94.2%). The parents' age ranged from their 30s (43.5%) to 40s (56.5%). Most were college graduates (n=50, 72.5%), and almost all parents (66, 95.7%) were married. Forty-eight parents (69.6%) were from the middle class. Thirty-five (50.8%) had no religion, and 20 (29.0%) were Protestant (
The total mean HLS score in CCS was 2.97 (SD=0.39). The mean scores of the sub-dimensions were as follows: stress management, 3.30 (SD=0.55); interpersonal relations, 3.22 (SD=0.43); positive life perspective, 3.16 (SD=0.51); health responsibility, 2.87 (SD=0.41); nutrition, 2.84 (SD=0.50); physical activity, 2.77 (SD=0.68); and spiritual health, 2.25 (SD=1.05).
The total mean score of children's HLS reported by their parents was 3.03 (SD=0.31); The mean score among sub-dimensions were as follows: stress management, 3.34 (SD=0.39); positive life perspective, 3.22 (SD=0.39); interpersonal relations, 3.21 (SD=0.39); health responsibility, 2.99 (SD=0.39); physical activity, 2.84 (SD=0.69); nutrition, 2.82 (SD=0.52); and spiritual health, 2.36 (SD=1.01).
There was no significant difference between the HLS scores reported by the CCS themselves and the HLS scores reported by 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 (
The increasing survival rates of CCS, which exceed 80%[
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 [
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 [
The positive life perspective showed above-moderate levels in our study on HLS. Similarly, Andres-Jensen et al. [
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 [
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 [
Recent data indicate that more than 50% of CCS are at risk for exercise intolerance [
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 [
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 [
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.
Conceptualization: all authors; Data collection, Formal analysis: all authors; Writing-original draft, Writing-review and editing: all authors; Final approval of published version: all authors.
No existing or potential conflict of interest relevant to this article was reported.
This study was supported by a National Research Foundation of Korea (NRF) grant funded by the Korean government (No. 2020R1A2C1100912).
Please contact the corresponding author for data availability.
None.
Conceptual framework. CCS, childhood cancer survivors.
Description of the Sample According to Demographic Variables (
Variables | Characteristics | Categories | n (%) or M±SD |
---|---|---|---|
Child-related characteristics (n=69) | Gender | Male | 32 (46.4) |
Female | 37 (53.6) | ||
Child age (year) | 9.5±2.0 | ||
Birth order | First child | 29 (42.0) | |
Second child | 23 (33.3) | ||
Third child or more | 7 (10.1) | ||
Only child | 10 (14.6) | ||
Age at the time of cancer diagnosis | 4.6±2.9 | ||
Type of cancer diagnosed |
Leukemia | 41 (59.4) | |
Lymphoma | 8 (11.6) | ||
Brain tumor | 4 (5.8) | ||
Rhabdomyosarcoma | 2 (2.9) | ||
Others | 18 (26.1) | ||
Last treatment | Less than 12 months | 8 (11.6) | |
1 year to 5 years | 20 (29.0) | ||
More than 5 years have passed | 17 (24.6) | ||
Treatment in progress | 24 (34.8) | ||
Treatment received |
Surgery | 25 (36.2) | |
Radiotherapy | 16 (23.2) | ||
Chemotherapy | 50 (72.5) | ||
Hematopoietic stem cell transplantation | 28 (40.6) | ||
Other | 11 (15.9) | ||
Relapse experience | Yes | 15 (21.7) | |
No | 54 (78.3) | ||
Health status perceived by CCS | Very healthy | 6 (8.7) | |
Healthy | 21 (30.4) | ||
Moderate | 29 (42.0) | ||
Not healthy | 13 (18.9) | ||
Parental characteristics (n=69) | Relationship with children | Father | 4 (5.8) |
Mother | 65 (94.2) | ||
Parent's age (year) | 30‒39 | 30 (43.5) | |
40‒49 | 39 (56.5) | ||
Place of residence | Seoul | 13 (18.9) | |
Gyeonggi-do | 10 (14.6) | ||
Gangwon-do | 5 (7.2) | ||
Chungcheong-do | 5 (7.2) | ||
Jeolla-do | 12 (17.4) | ||
Gyeongsang-do | 9 (13.0) | ||
Other metropolitan areas | 15 (21.7) | ||
Parent's education | Less than high school | 14 (20.3) | |
College graduation | 50 (72.5) | ||
Graduate school | 5 (7.2) | ||
Marital status | Married | 66 (95.7) | |
Divorced or bereaved | 3 (4.3) | ||
Socioeconomic status | High | 2 (2.9) | |
Middle | 48 (69.6) | ||
Low | 19 (27.5) | ||
Religion | Protestant | 20 (29.0) | |
Catholic | 5 (7.2) | ||
Buddhist | 9 (13.0) | ||
None | 35 (50.8) |
Multiple-choice item; CCS, childhood cancer survivors; M, mean; SD, standard deviation.
Childhood Cancer Survivors' and Their Parents' Reports on Children's Healthy Lifestyles (
Sub-dimension |
Self-reported HLS of CCS (n=67) |
HLS of CCS observed by parents (n=69) |
t ( |
---|---|---|---|
M±SD | M±SD | ||
Stress management (5 items) | 3.30±0.55 | 3.34±0.39 | 0.46 (.647) |
Interpersonal relations (6 items) | 3.22±0.43 | 3.21±0.39 | 0.16 (.873) |
Positive life perspective (5 items) | 3.16±0.51 | 3.22±0.39 | 0.75 (.453) |
Health responsibility (6 items) | 2.87±0.41 | 2.99±0.39 | 1.77 (.079) |
Nutrition (4 items) | 2.84±0.50 | 2.82±0.52 | 0.16 (.877) |
Physical activity (4 items) | 2.77±0.68 | 2.84±0.69 | 0.61 (.545) |
Spiritual health (3 items) | 2.25±1.05 | 2.36±1.01 | 0.62 (.539) |
Total (33 items) | 2.97±0.39 | 3.03±0.31 | 0.86 (.390) |
4-point Likert scale; CCS, childhood cancer survivors; HLS, healthy lifestyle; M, mean; SD, standard deviation.
The Degree and Eigenvector Centrality of Keywords Regarding the Open Question
Question: What am I (or is my child) not doing well in order to be healthy? |
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---|---|---|---|---|---|---|---|---|---|---|---|
Children's responses |
Parental responses |
||||||||||
Rank | Keyword | DC | Rank | Keyword | EC | Rank | Keyword | DC | Rank | Keyword | EC |
1 | Exercise | .47 | 1 | Food | .50 | 1 | Unbalanced diet | .53 | 1 | Self- control | .42 |
2 | Unbalanced diet | .40 | 2 | Exercise | .49 | 2 | Exercise | .53 | 2 | Exercise | .42 |
3 | Food | .40 | 3 | Temptation | .44 | 3 | Self-control | .47 | 3 | Unbalanced diet | .38 |
4 | Cellphone | .33 | 4 | Unbalanced diet | .33 | 4 | Food | .47 | 4 | Food | .34 |
5 | Instant | .27 | 5 | Instant | .25 | 5 | Body | .47 | 5 | Deep sleep | .29 |
6 | Temptation | .27 | 6 | Cellphone | .19 | 6 | Vegetable | .37 | 6 | Instant | .24 |
7 | Body | .27 | 7 | Body | .18 | 7 | Environment | .32 | 7 | Body | .23 |
8 | Meal | .20 | 8 | Food | .17 | 8 | Cellphone | .32 | 8 | Vegetable | .23 |
9 | Snack | .20 | 9 | Habit | .13 | 9 | Needs | .32 | 9 | Environment | .16 |
10 | Computer | .13 | 10 | Snack | .12 | 10 | Treatment | .32 | 10 | Treatment | .16 |
11 | Habit | .13 | 11 | Water | .08 | 11 | Barrier | .32 | 11 | Cellphone | .15 |
12 | Water | .13 | 12 | Vegetable | .08 | 12 | Instant | .32 | 12 | Need | .15 |
13 | Friend | .07 | 13 | Computer | .06 | 13 | Deep sleep | .26 | 13 | Junk food | .14 |
14 | Vegetable | .07 | 14 | Friend | .02 | 14 | Junk food | .26 | 14 | Barrier | .09 |
15 | Annoyance | .00 | 15 | Annoyance | .00 | 15 | Water | .16 | 15 | Game | .07 |
16 | Sleep | .00 | 16 | Sleep | .00 | 16 | Game | .16 | 16 | Water | .05 |
17 | - | - | 17 | - | - | 17 | Study | .11 | 17 | Study | .04 |
18 | - | - | 18 | - | - | 18 | Caution | .11 | 18 | Stress | .04 |
19 | - | - | 19 | - | - | 19 | Stress | .05 | 19 | Diet | .03 |
20 | - | - | 20 | - | - | 20 | Diet | .05 | 20 | Caution | .02 |
Degree centrality index 29.5% | Degree centrality index 25.7% |
DC, degree centrality; EC, eigenvector centrality.