Recent advances in cancer treatment have resulted in increased survival rates for childhood cancer.1 However, despite the improved prognosis, cancer treatment-including radiotherapy, chemotherapy, surgical intervention, and bone marrow transplant, alone or in combination-may have long-term effects on the physical and psychological well-being of survivors that can adversely affect their quality of life.2-5 Apart from possible associated chronic health problems, such as secondary cancers, alternation in growth and development, and organ damage,6 the most commonly reported therapy-related adverse effects are fatigue, decreased muscle strength and endurance, and poor concentration.7-9 Although childhood cancer survivors in Hong Kong do receive regular medical follow-up, most attention is focused on their physiological care.10 The consequences of cancer and its treatment on the quality of life of Chinese childhood cancer survivors remain relatively underexplored.11
The National Cancer Institute in the United States has emphasized the importance of assessing and evaluating patients' quality of life to gain a better understanding of the impact of cancer and its treatment from the patient's perspective.12 It is vital to develop and evaluate interventions that can promote the psychosocial well-being of such children and help them maintain a good quality of life.13,14 Most importantly, the effects of such interventions can be sustained over time. We defined sustainability in this study as the intervention effects that can be sustained over time.
Background
Physical activity has traditionally been viewed as less important by Hong Kong Chinese parents than physiological care or medical treatment and academic performance of their children.15 Moreover, it has been well documented that such people are influenced by the philosophy of Confucianism,10,16 which emphasizes balance and harmony in everyday life, achieved through the notions of chung and yung.17 Under the influence of this philosophy, cancer is regarded as "bad spirits," and it is believed that exercise will only aggravate the existing disease and violate the harmony principle.18 In this cultural context, many Chinese parents of childhood cancer survivors might advise them to take more rest and not to engage in any high-energy activities, especially those of a physical type.19 Nevertheless, numerous studies have shown that regular physical activity enhances the physical and psychological well-being of childhood cancer survivors.4,20-22 Therefore, it is of paramount importance for healthcare professionals to correct the misconceptions about physical activity in Hong Kong Chinese parents and to promote their awareness of the importance of physical activity for the well-being of their children.
An integrated adventure-based training and health education program was conducted with the aim of promoting regular physical activity among Hong Kong Chinese children.23 The results of this study showed that participants in the integrated program reported statistically significant differences in the stages of change in physical activity and higher levels of physical activity and self-efficacy than did those receiving standard medical follow-up care. However, the results also showed no statistically significant difference in children's quality of life between the 2 groups. The effect size for the proposed intervention on the quality of life of childhood cancer survivors was small. One limitation of the study was that, because of limited funding support, data collection was carried out only up to 9 months after the intervention itself had been implemented. As a result, its long-term effects on the survivors' outcomes are unclear, in particular those related to quality of life that might require longer to respond to the intervention.23 Another of the study's limitations was that the researchers did not include a process evaluation to identify the strengths and weaknesses of the integrated program from the participants' perspective. Indeed, a process evaluation could help clarify the important elements of the intervention and improve its future presentations. Most importantly, process evaluation helps to optimize the quality of a newly developed intervention and to determine whether its delivery is feasible and acceptable to participants.
With funding support from a local university, a follow-up study of a previous randomized controlled trial (RCT)23 was conducted with the aim of examining whether the effects of the adventure-based training and health education program on changing the exercise behavior and enhancing the physical activity levels, self-efficacy, and quality of life of childhood cancer survivors could be sustained over time, up to perhaps 12 or 18 months. In particular, this study was targeted at evaluating how an integrated program caused changes in quality of life over time. As the Pediatric Quality of Life Inventory (PedsQL) used in both previous and present studies comprises 4 subscales, physical, emotional, social, and school functioning, it is interesting to find whether the program affects any particular functional area of the survivors' quality of life. In addition, the study aimed to evaluate the potential for implementing this program for Chinese childhood cancer survivors in the Hong Kong context.
Theoretical Framework
Kolb's24 experiential learning theory, self-efficacy theory,25 and transtheoretical model of behavior change26 were integrated into the framework of the study. Adventure-based training is built on the experiential learning approach, which involves a 4-step model of concrete experience, reflective observation, abstract conceptualization, and active experimentation. In general, learning takes place at the stage of concrete experience, where a person gains experience by participating in different activities. At the reflective observation stage, the person will try to consolidate and analyze the experience and search for the underlying implications of events; it is the application of newly acquired knowledge and skills gained through concrete experience and reflective observation that allows learning to take place. At the abstract conceptualization stage, the person will try to apply the skills gained through the earlier stages and estimate the chances of success in applying them, then actively use the skills to handle new challenges in the final stage of the learning cycle.
Adventure-based activities may facilitate the process of concrete experience by encouraging participants to accept an innovative approach in dealing with challenges. During the adventure process, emphasis is placed on changing the dysfunctional and negative actions of team members into functional and positive actions and on the interaction between team members in accomplishing different challenging tasks. Participants experience difficulties and look for possible ways round them, and with the proper guidance, assistance, and intervention of instructors, the objectives of the training can be achieved. Most importantly, such training and experience can enhance participants' self-efficacy. As this is closely linked to the stages of change (transtheoretical model of behavior change) in physical activity, it is expected that through adventure-based training participants will be helped stage by stage to engage in different levels of physical activities. A diagrammatic representation of the integration of the 3 theories is shown in the Figure. Previous studies have shown that regular physical activity helps to minimize adverse treatment-related effects and improve muscle strength and endurance, consequently enhancing cancer survivors' quality of life.4,21,22
Methods
Design
A follow-up study (12 and 18 months after the start of the intervention) of a previous RCT was conducted. A 2-group pretest and posttest, between-subjects design was used.
Participants
Seventy-one childhood cancer survivors who had participated in the previous RCT were invited to join this follow-up study. Of 71 survivors, 34 had taken part in a 4-day integrated adventure-based training and health education program, and 37 had received a placebo intervention.
Intervention
PLACEBO CONTROL GROUP
Participants received the same amount of time and attention as the experimental group. They were invited to attend 4 days of leisure activities organized by a community center over a 6-month period.
EXPERIMENTAL GROUP
Participants joined 4 alternative days of integrated adventure-based training at weekends over 6 months in a day-camp training center, where the program included health educational talks on physical activity, a workshop to develop a feasible individual action plan for regular physical activity, and adventure-based training activities. The adventure-based training contained a variety of well-structured activities with the purpose of changing participants' feelings, patterns of thought, and behavior through adventure experience and practice. Examples of activities included problem-solving games and team-building activities, some energy-intensive and some psychologically demanding. In addition, depending on their physical condition, participants might also be invited to join in challenging games, such as rock climbing and a low rope course. A debriefing session was conducted at the end of each activity to consolidate the participants' experience, feelings, and learning. More details of the program content are given in Tables 1 and 2 of our previous study.23
Study Instruments
THE CHINESE UNIVERSITY OF HONG KONG: PHYSICAL ACTIVITY RATING FOR CHILDREN AND YOUTH
Participants' physical activity levels were documented using the Chinese University of Hong Kong: Physical Activity Rating for Children and Youth, which adopts an 11-point scoring system (0-10) to grade the levels of physical activity ranging from no exercise at all (0) to vigorous exercise on most days (10). This scale has been used with Hong Kong Chinese children in previous studies,15,27 where the content validity index was 90% and the test-retest reliability coefficient was 0.86.15
PHYSICAL ACTIVITY STAGES OF CHANGE QUESTIONNAIRE
The stages of change in physical activity were assessed using the Physical Activity Stages of Change Questionnaire, a 4-item questionnaire where participants answer "yes" or "no" to questions to indicate their physical activity practices. The psychometric properties of this scale have been examined,15 with the content validity index of 92% and test-retest reliability coefficient of 0.83.
PHYSICAL ACTIVITY SELF-EFFICACY
Children's self-efficacy in performing physical activity was assessed using the Physical Activity Self-efficacy.28 This scale had been used with Hong Kong Chinese children, with internal consistency coefficients ranging from 0.67 to 0.69.29
PEDIATRIC QUALITY OF LIFE INVENTORY
Participants' quality of life was assessed using the PedsQL. The instrument consists of 23 items divided into 4 subscales: physical functioning (8 items), emotional functioning (5 items), social functioning (5 items), and school functioning (5 items). The psychometric properties of this scale have been reported in a previous study,30 with an internal consistency coefficient of 0.86 and test-retest reliability ranging from r = 0.62 to r = 0.8.
Process Evaluation
To assess the implementation potential of the integrated adventure-based training and health education program, a short one-to-one semistructured interview was conducted at 18 months with 5 childhood cancer survivors and their parents, randomly selected from the experimental group. They were asked to express their views on the acceptability and suitability of the program. An interview guide was used, and the questions asked were as follows: How did you feel about the adventure-based program? Did you have any concerns about joining the program? Did you find the program was feasible for you/your child as a participant? Did you find the content of the program was suitable for you/your child in promoting regular physical activity?' All of the interviews were conducted by a full-time research assistant with considerable experience of qualitative interviews.
Data Collection Methods
Study approval was sought from the institutional review board of the University of Hong Kong and the Hospital Authority, Hong Kong West Cluster. The target participants were invited to participate in the study during their medical follow-up at the oncology outpatient clinic. Written consent was obtained from the parents at the clinic after they were told the purposes of the study. The children were invited to put their names on an assent form, and they were assured that their participation was voluntary.
All quantitative data were collected over the telephone by a research assistant at 12 and 18 months. Participants were asked to respond to the Chinese versions of the Physical Activity Self-efficacy, Chinese University of Hong Kong: Physical Activity Rating for Children and Youth, Physical Activity Stages of Change Questionnaire, and PedsQL. Semistructured interview were conducted with selected participants at the pediatric oncology outpatient unit.
Data Analysis
SPSS version 19 for Windows (SPSS Inc, Chicago, Illinois) was used to analyze the quantitative data. As the major objective of this follow-up study was to evaluate whether the effects of the intervention could be sustained over time, up to 12 or 18 months, analyses were performed at baseline (T1), 12 months (T2), and 18 months (T3) to determine any changes in outcomes. Mixed between-/within-subjects analysis of variance (ANOVA) was used to analyze whether the integrated program was effective in promoting childhood cancer survivors' physical activity, self-efficacy, and quality of life. This type of analysis was also used to determine any particular intervention effects on different functional areas of the survivors' quality of life. Independent t tests were conducted to examine any differences in the physical, emotional, social, or school functioning of the PedsQL across the 3 time periods for both groups. Pairwise comparisons were conducted to examine how physical activity, self-efficacy, and quality of life changed from T1 to T2 and T1 to T3. The Friedman test was used to examine any differences between the exercise behavior of participants in the 2 groups.
Results
We aimed to follow up all 71 children who had participated in our previous study. However, we excluded 2 participants, one from the experimental group who had been readmitted to hospital for a recurrence of cancer to be investigated, and another from the control group who declared that he was no longer interested in participating. Therefore, 69 survivors were included in the final investigation, with 33 in the experimental group and 36 in the control group.
There were similar numbers of boys (52.1%) and girls (47.9%) in the study, with an average age of 12.6 (SD, 2.1) years; most were diagnosed with leukemia (49.3%) or lymphoma (25.4%). Most participants (69.1%) received chemotherapy, with 18.3% receiving more than 1 treatment. Most (95.8%) had completed their entire medical treatment within 5 years, with only 3 patients continuing for longer. The results of inferential statistics showed that there were no statistically significant differences in any demographic or baseline data between the experimental and control groups.
The results of the mixed between-/within-subjects ANOVA on the scores for physical activity levels, physical activity self-efficacy, and quality of life across the 3 periods are shown in Table 1. The results indicated that there were statistically significant main effects for time, suggesting a change in the levels of physical activity, self-efficacy, and quality of life in children in both groups across the 3 time periods. There were statistically significant interaction effects between time and intervention, indicating that the changes in the levels of physical activity, self-efficacy, and quality of life in children at different time points were dissimilar between the experimental and control groups. The result of between-subjects effects showed that there was a statistically significant main effect for intervention on physical activity levels, self-efficacy, and quality of life, indicating that children in the experimental group reported higher mean scores for physical activity levels, self-efficacy, and quality of life than did those in the control group. Using the commonly used guidelines proposed by Cohen,31 the effect sizes for the integrated program on the levels of physical activity and self-efficacy were large and on quality of life were about moderate.
The mean scores for physical activity, self-efficacy, and quality of life across the 3 time periods for both groups are presented in Table 2. Pairwise comparisons showed that there were statistically significant changes in the levels of physical activity, self-efficacy, and quality of life from T1 to T2 and T1 to T3 in the experimental group. However, with the exception of quality of life, there was no statistically significant change in the levels of physical activity and self-efficacy from T2 to T3 in the experimental group. Although the result showed that there were statistically significant changes in physical activity from T1 to T2 and T1 to T3 and self-efficacy from T1 to T3 in the control group, the actual mean different was very small when compared with the experimental group. The results also showed that there was no statistically significant change in the levels of physical activity, self-efficacy, and quality of life from T2 to T3 in the control group.
The results of the Friedman test on stages of change in physical activity for the 2 groups are shown in Table 3. There was a statistically significant difference in the stages of change of the experimental group but not of the control group across the 3 time periods.
The results of independent t tests for the physical, emotional, social, and school functioning of the PedsQL across the 3 time periods for both groups are presented in Table 4. The results of the mixed between-/within-subjects ANOVA on physical, emotional, social, and school functioning across the 3 periods are shown in Table 5. The results indicated that there were statistically significant main effects for the intervention on physical and emotional functioning, with children in the experimental group reporting higher levels in both areas than did those in the control group.
Process Evaluation
Most of the survivors participated actively in the adventure games and showed great interest and excitement when participating in various forms of adventure-based training. The results of process evaluation revealed that the program was both feasible and acceptable to childhood cancer survivors. There was a considerable amount of positive feedback from both participants and parents, and some of their comments are set out below.
EXAMPLES OF CHILDREN'S COMMENTS
I enjoyed participating in this special program; the activities were interesting and challenging. Although I needed to make extra efforts to catch up with my peers in academic performance, I did not have to struggle to join the program as it was only organized on separate days at weekends over 6 months.
I was a member of a football team at school. After cancer treatment, I believed that I was no longer able to join the team because of decreased physical strength and endurance. But after joining the program and having regular physical activities again for a year, I found that not only had my physical strength and endurance improved, but also I had the confidence to take up new and challenging tasks. I am now the key member of my school football team!
EXAMPLE COMMENT FROM A SURVIVOR'S PARENT
At first, I had some concerns about letting my son join the program. But after attending the briefing section, I found that the activities were suitable and appropriate for my child. The time and duration of the program also suited us, as it happened only on weekends and lasted for 6 months. Most importantly, my son showed great interest in joining this program.
In the past, my daughter felt easily fatigued and exhausted. I often advised her to take more rest and not to take part in any high-energy activities. Nevertheless, after joining the program, I realize that regular physical activity is very important to her and helps improve her physical strength and endurance. It is true-she is now obviously feeling less fatigued than before. I will encourage her to continue taking regular exercise.
Discussion
We investigated whether the effects of the program on changing the exercise behavior and enhancing the physical activity levels, self-efficacy, and quality of life of the survivors could be sustainable up to 18 months. Indeed, sustainability is an important consideration in the potential implementation of an innovation in clinical practice.32,33 In particular, it has been well documented that cancer and its treatment may have long-term negative effects on the physical and psychological well-being of survivors that can adversely affect their quality of life.3-5
The results showed that survivors participating in the program reported significantly higher levels of physical activity, self-efficacy, and quality of life than did those in the control group, as measured at 12 and 18 months. Moreover, there was an increase in the number of survivors in the experimental group progressing from the precontemplation to the contemplation stage and from the preparation to the action stage at a later date. Our findings add new evidence to the literature that an integrated program of this sort has substantial effects on enhancing the physical activity level, self-efficacy, and quality of life of childhood cancer survivors, over at least 18 months. The study also adds further empirical evidence to the literature that adventure-based training can enhance individuals' self-efficacy,22,34 which is vital in promoting the adoption and maintenance of regular physical activity.22
Not all interventions will produce immediate, constant, and long-term effects. The effect size of an intervention may vary, according to when the outcome variable is assessed.35 Moreover, there are variations in the decay functions of the intervention effect, such as interventions producing an immediate effect with no decay, early effect with slow decay, delayed effect, and immediate effect with rapid decay.36 Our findings are at odds with those of a previous study,23 where it was reported that the effect size of the integrated adventure-based training and health education program on the quality of life of childhood cancer survivors was small and that there was no statistically significant difference between the 2 groups in the children's quality of life as measured at 9 months. The present study indicated that the effect size of the program on the quality of life was about moderate and that there was a statistically significant difference in quality of life of the children in the 2 groups when data collection was extended to 12 and 18 months. Most importantly, the study showed that the quality of life of survivors in the experimental group continued to improve from 12 to 18 months, providing some evidence that their quality of life might take longer to respond to the intervention than the adoption and maintenance of regular physical activity. Nevertheless, the findings indicated that there was no further change in the experimental group's levels of physical activity and self-efficacy from T2 to T3. One possible reason may be that the intervention effect on physical activity levels and self-efficacy reached its maximum level at 12 months. To increase the sustainability of the intervention for longer, future research may consider adding some extra program sessions for the survivors at 12 months.
When examining each subscale of the PedsQL separately, we found that survivors in the experimental group had higher levels of physical and emotional functioning than did those in the control group. Although there was some improvement in social and school functioning among the experimental group, the results were not statistically significant. One possible explanation lies in the difficulty of determining whether social and school functioning can be expected to respond to the adventure-based training and health education on physical activity. The proposed integrated program had a more precise effect on physical functioning and emotional behavior, while the outcome measures of social and school functioning might be less responsive to these interventions.
The Implementation Potential of the Integrated Adventure-Based Training and Health Education Program
Although the effectiveness of an intervention is important, it would be meaningless if the intervention was not appropriate or acceptable to the proposed users. It is therefore crucial to understand the values and perspectives of childhood cancer survivors and their parents about regular physical activity and the integrated program. Despite some possible cultural factors and misconceptions about physical exercise, most of the survivors participated actively in the adventure games, and we received a considerable amount of positive feedback from those in the program. Furthermore, most parents commented in the interviews that it was worthwhile and helpful for their children to experience such an intervention. Most importantly, many parents reported that joining the program increased their awareness of the importance of regular physical activity to their children's health.
Strengths and Limitations
One of the strengths of the study lies in the originality of the research question itself, which concerns an area that has been underrepresented in the literature. Another strength lies in the use of an RCT, which is the most powerful approach for testing cause-and-effect relationships between independent and dependent variables. Random assignment to experimental and control groups helps reduce the effect of extraneous variables on the dependent variables and ensures the strong possibility of the sample being unbiased. Nevertheless, with a sample of 69, the study might have been underpowered, and the findings could only be regarded as "preliminary' or phase II RCT. According to the Medical Research Council,37 phase II RCT is the crucial stage prior to the main RCT. Another limitation is that we excluded children with evidence of recurrence or second malignancies and those with a physical impairment. We understand that such children might certainly find their activity levels affected and require special attention to help them adopt and maintain physical activity, which would introduce a confounding variable if they were included. Nevertheless, this group of survivors may require more attention and assistance as they may well be more vulnerable to the adverse effects of cancer treatment, with their quality of life severely affected.
Implications for Nursing Practice and Future Research
The most important implication for practice concerns the sustainability of the integrated program in improving the quality of life of childhood cancer survivors. Nursing professionals can incorporate adventure-based training into their health education programs to promote the adaptation and maintenance of regular physical activity among childhood cancer survivors.
It is recommended that a longitudinal study, perhaps 2 more years of follow-up, with this group of survivors be conducted to see whether they can sustain regular physical activity over an extended period. It would also be worthwhile implementing this program and examining its effectiveness in other countries with different cultural backgrounds.
Future research may consider developing and evaluating an appropriate and tailor-made intervention for those children with evidence of recurrence or second malignancies or those with a physical impairment. Moreover, apart from monitoring physical activity behavior and quality of life of childhood cancer survivors, it is also recommended that any physiological changes that occur over an extended period be detected, such as fatigue or decreased muscle strength and endurance. In addition, to add empirical scrutiny of the effectiveness of adventure-based training to the existing literature, future research may consider conducting a phase III RCT using larger samples.
Conclusion
The study has addressed a gap in the literature by examining whether an adventure-based training and health education program could have a substantial effect by changing the exercise behavior and enhancing the physical activity levels, self-efficacy, and quality of life of childhood cancer survivors. The program was found to be very effective, feasible, and acceptable to childhood cancer survivors and their parents and its effectiveness to be sustainable for 18 months.
References