Four themes were determined according to the frameworks used: (1) determinants of participation, (2) perceived benefits and behaviour change, (3) attitude towards health behaviours and intention to change, and (4) suggestions for improvement (Table 3).
Theme 1: Determinants of participation
Participants reported many barriers to participation. The most important barriers were time and organizational constraints, which related to the inner setting of the program. Other barriers related mostly to the personal characteristics of participants and included lack of interest or need, physical or mental health issues and perceived difficulty of the intervention or burden. Indeed, for some parents, feeling overwhelmed had hampered their participation:
« You know, of course it is very challenging, in a moment where… it is not going really well… when you know you have already lost balance and you are trying to get back on your feet and it is difficult… and you have homeworks given to you and you know you are going to have to… you are already psychologically exhausted and you have to do that on top of it… » (L., parent of a 5-year-old1)
Age of participants was noted as an important factor impacting the level of participation and motivation of participants. Indeed, barriers related to personal characteristics, particularly lack of motivation, were reported mostly by adolescents. As one mother underlined: « if he had not been an old teenager, also […], you know if he had been younger, like 10 or 12 years old, he probably would have felt the need to be active.» (N., parent of a 16-year-old).
Elements of the inner setting were also viewed as facilitators. First, participants had to wait long hours at the clinic and were happy to fill those hours with the program interventions. The facility and materials were easily accessible when the participants were at the hospital. Moreover, the interventions could be delivered remotely (i.e., Zoom meetings or telephone), which was viewed as very convenient, especially considering the COVID-19 pandemic that impacted the second half of the program. Characteristics of the interventions that were reported as facilitators were the flexibility and adaptability in the delivery of the program and the tailoring of the interventions to individuals’ needs. Regarding personal characteristics, participants who had a good understanding of the potential benefits of the interventions or a positive attitude towards the adoption of healthy behaviours had a higher level of participation in the program.
Participants reported that the opinion of significant others, or the subjective norms according to the TPB, influenced their participation. Having positive relationships and trust in the research team members was a motivation for participating as well as including siblings or other family members in the interventions. Regarding opinion leaders, defined in the CIFR as individuals in an organization who have influence on attitudes and beliefs towards an intervention, most participants said they had received support from the clinical team to participate.
« I would say they were all in favor of [the VIE study]. When you talk to the nurses and all, they talk about it with interest… they are enthusiastic about this program… » (L., parent of a 13-year-old)
However, even though participants reported feeling supported by the clinical team, some participants did not feel like the health promotion activities were well integrated in the clinical care; for example, a participant considered that the research and clinical teams were disconnected, saying: « I thought that it was two different worlds” (I., parent of a 5-year-old). Moreover, one participant mentioned that having many different professionals involved made it difficult to build significant relationships and trust with everybody:
« There are already so many stakeholders who gravitate that at some point, making effort everywhere, we become exhausted and hum… we struggle to see the added value of everybody » (P., parent of a 13-year-old)
Theme 2: Perceived benefits and behaviour change
Regarding the benefits of the program, most participants reported that it had a positive impact on some of their nutrition or physical activity health behaviour practices during cancer treatment. Participants also reported they felt that the program improved their overall physical and mental health and brightened up their days at the hospital.
« Of course, it helped me to sustain healthy behaviours. Doing some exercises, once in a while, things like that, because if I had only listened to myself… » (L., 16-year-old participant)
The TPB states that behavioural achievement depends on both motivation (i.e., intention) and ability (i.e., behavioural control). During cancer treatment, suffering from symptoms of cancer and side effects of treatment limits the perceived behavioural control of children and adolescents. For example, physical symptoms such as pain and fatigue limited the participation to physical activity interventions and nausea or cravings for unhealthy food limited the adoption of nutrition guidelines.
Theme 3: Attitude towards health behaviours and intention to change
Even though all participants reported having a positive attitude towards the adoption of healthy behaviours, only half of them mentioned having the intention to modify their health behaviour practices in the long-term. Indeed, half of the participants thought they would have long-term benefits from having participated in the program.
“I have seen the importance of being active... we will keep this new way of living» (K., parent of a 5-year-old)
The other half did not think participating in the program would make a difference in the long-term regarding their health behaviour practices.
“But I don’t think that it will make a long-term difference. It did make a huge difference during the illness, though.” (I., parent of a 5-year-old)