Perceived barriers and facilitators to physical activity in childhood cancer survivors and their parents: A large-scale interview study from the International PACCS Study.

BACKGROUND: Physical activity (PA) may reduce risks of late effects in childhood cancer survivors, yet many have low activity levels. Using the WHO's International Classification of Functioning, Disability, and Health for Children and Youths (ICF-CY) as a conceptual framework, we aimed to identify perceived barriers and facilitators to PA in young survivors and their parents. DESIGN/METHODS: We conducted individual, semi-structured interviews with 63 survivors, aged 9-18 years, ≥1-year off treatment, and 68 parents, recruited from three pediatric oncology departments in Norway and Denmark. Interviews were analyzed inductively using thematic analysis to identify barriers and facilitators to PA, which were mapped onto the ICF-CY model components; body function/structures, activities, participation, and environmental and personal factors. RESULTS: Two-thirds of the survivors described how treatment-related impairments of bodily functions (e.g., fatigue, physical weakness, reduced lung capacity) caused physical limitations, reducing opportunities to participate in PA, especially team sports and school physical education. This resulted in a perceived ability gap between survivors and peers, reducing motivation for PA. These PA barriers were moderated by environmental factors that facilitated or further hindered PA participation (family, peer, and school support). Similarily, personal factors also facilitated (acceptance, motivation, goal setting) or hindered (anxiety, low motivation, and lack of trust) PA participation. CONCLUSION: Treatment-related long-term or late effects represented significant barriers to PA as their functional consequences reduced survivors' capacities and capabilities to be active. Environmental and personal factors acting as facilitators or further barriers to PA were identified. Applying the ICF-CY framework in clinical practice could help to enable PA participation.

Childhood cancer survivors' and their parents' experiences with participation in a physical and social intervention during cancer treatment: A RESPECT study.

AIMS: This study explores experiences of childhood cancer survivors and their parents with a combined physical and social activity intervention during treatment, including how the survivors and their parents perceive physical activity post-treatment. DESIGN: A process evaluation using semi-structured interviews. METHODS: Using a criterion-sampling strategy, 18 Danish childhood cancer survivors (aged 11-18 years) and their parents were interviewed from September 2019 through May 2020. Data analysis used an inductive thematic approach focused on meaning. RESULTS: Three themes emerged: (1) being physically active during hospitalization; (2) peers as motivators and (3) physical activity post-treatment. During hospitalization, daily motivation to do physical activity was dependent on the daily well-being, that is, presence of the side effects from the child's treatment. Healthy classmates provided distraction, reduced loneliness and promoted normality for those hospitalized. For most of the survivors, their healthy peers provided motivation for being physically active during treatment. When surplus energy was lacking, some survivors preferred doing physical activity alone with a professional. Those who were physically active in the hospital sustained being physically active post-treatment while their parents continued seeking advice about appropriate activity levels. CONCLUSION: Childhood cancer survivors and their parents benefited from the intervention which also provided guidance to remaining physically active post-treatment. This was particularly true for the participants with leukaemia. IMPACT: Healthcare professionals should support children with cancer to be physically active during hospitalization. Including social and physical components in their care plan and being aware of individual preferences is pivotal to improving the survivors' level of physical and social well-being during and post-treatment. PATIENT OR PUBLIC CONTRIBUTION: The participants were involved in designing the interview guides to ensure that the interview guides were understandable for the participants to provide rich descriptions of their experiences with a physical and social activity intervention during hospitalization.

The gap between expectations and reality: A qualitative study of psychosocial challenges of young childhood cancer survivors from the PACCS study.

OBJECTIVE: In this sub-study from the 'PACCS' study, we explored the psychosocial experiences of children and adolescents in everyday life post-cancer treatment and the possible factors that can moderate these experiences. METHODS: This is a qualitative explorative study using semi-structured interviews with 43 childhood cancer survivors between the ages of nine and 18 from Norway and Denmark. We conducted a secondary thematic analysis using Malterud's systematic text condensation. RESULTS: Two main themes were identified: 'The post-treatment gap between expectations and reality' comprised two subthemes: (1) lack of mastery and feeling different and (2) lack of understanding and acceptance. The second main theme, 'Managing the gap', comprised three subthemes: (1) information and knowledge, (2) adjustments and adaptions and (3) social support and openness. The findings reveal that the psychosocial challenges resulted from the remaining ability gap(s). Measures such as tailored information, school adjustments and social support were potential dynamic factors affecting the gap(s) positively or negatively. Psychosocial challenges post-treatment are experiences of lack of acceptance and understanding from others. CONCLUSION: To safeguard a positive transition back to everyday life, health care providers should support the survivors' psychosocial care, including getting back to school and re-entering social interactions.

A qualitative study of young childhood cancer survivors and their parents' experiences with treatment-related late effects in everyday life post-treatment.

AIMS: The purpose of this secondary analysis was to explore how young cancer survivors and their parents experience and manage treatment-related late effects in daily life post-treatment. DESIGN: A phenomenological-hermeneutic explorative study. METHODS: Using purposive sampling, we included 15 childhood cancer survivors (aged 11-18 years) and their parents who participated in semi-structured interviews from September 2019 through May 2020. We analysed the interviews paired using a thematic approach focused on meaning. RESULTS: The central theme, 'Negotiation daily life', emerged as well as three interrelated sub-themes, that is 'A changed everyday life', 'Physical activity as a tool' and 'Friends as a tool'. The childhood cancer survivors and their parents experienced, understood and interpreted the late effects differently. The difference between the survivors' perceptions and those of their parents in managing treatment-related late effects in everyday life resulted in a continuous negotiation process between the parties. Parents highlighted the negative impact of late effects on their child's daily life in relation to physical activity, school and socialization while the survivors wished to leave the cancer experience behind and 'move on' with their friends. As a result, most of the survivors developed strategies to manage their social activities while their parents felt that the survivors neglected the late effects. CONCLUSION: The ongoing negotiation process between the childhood cancer survivors and their parents show the complexity of the new family dynamics on returning to everyday life post-treatment. For clinical nurses, that means that there should be focus on family dynamics and how the childhood cancer survivors and parents, respectively, manage the childhood cancer survivors' late effects. IMPACT: Healthcare providers should distinguish between the needs of the survivors and those of their parents as they transition from treatment to everyday life, and especially in the management of late effects caused by the treatment.