"The post-it note just said leukemia" - Information exchange challenges of teachers and local stakeholders supporting young childhood cancer survivors at school - A qualitative study from the Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) group.

PURPOSE: Explore teachers', school nurses', cancer coordinators' and other local stakeholders' experiences providing education and support for young childhood cancer survivors in the years after treatment. METHODS: We conducted four focus groups and three individual telephone interviews with 15 teachers, nine nurses and three other stakeholders, using inductive thematic analysis inspired by Braun & Clark. Nvivo v12 was used for data-management. RESULTS: Three main themes were developed; "Perceived parent attitudes and facilitation", "The missing link - lack of communication and collaboration", and "Enabling mastery, inclusion and thriving". Parents were perceived to be the sole managers of providing cancer information and school-related follow-up needs. Teachers and other stakeholders experienced the nonexistence of information from specialist healthcare services and poor communication within the municipality. Teachers went to great lengths to meet survivors' pedagogical needs and facilitate peer interactions. Teachers voiced a need for more cancer and late effect knowledge, not being dependent solely on parents' for information. CONCLUSIONS: Teachers and other stakeholders have essential roles in the continuing school experience for survivors. A more regulated teamwork between the stakeholders in the municipalities and the specialist healthcare system could ensure tailored late effect information at school. Implementing formal support could enable a co-creation of a personalized follow up that could relieve the burden on survivors, parents and teachers.

Physical Activity Among Adolescent Cancer Survivors: The PACCS Study.

OBJECTIVES: Physical activity (PA) may modify risks of late effects after cancer. We aimed to examine levels of PA and sedentary time (ST) in a large, international sample of adolescent childhood cancer survivors in relation to sociodemographic and cancer-related factors and compare levels of PA and ST to reference cohorts. METHODS: Survivors from any cancer diagnosis who had completed cancer treatment ≥1 year ago, aged 9 to 16 years, were eligible for the multicenter Physical Activity in Childhood Cancer Survivors study. PA and ST were measured by ActiGraph GT3X+ accelerometers. We performed linear regression analyses to assess factors associated with moderate-to-vigorous PA (MVPA) and ST, and compared marginal means of total PA, MVPA, and ST in 432 survivors to sex- and age-stratified references (2-year intervals) using immediate t-tests for aggregated data. RESULTS: Among survivors, 34% fulfilled the World Health Organization's PA recommendation of ≥60 min of daily MVPA on average and their ST was 8.7 hours per day. Being female, older, overweight, a survivor of central nervous system tumor, or having experienced relapse were associated with lower MVPA and/or higher ST. Generally, male survivors spent less time in MVPA compared with references, whereas female survivors had similar levels. Both male and female survivors had higher ST than references in nearly all age groups. CONCLUSIONS: The low PA and high ST in this large sample of adolescent childhood cancer survivors is worrisome. Combined, our results call for targeted interventions addressing both PA and ST in follow-up care after childhood cancer.

"I have to do things differently now, but I make it work"-young childhood cancer survivors' experiences of self-management in everyday living.

PURPOSE: Living with late effects can affect young childhood cancer survivors' (CCSs) self-management (SM) abilities. In this study, we explored different approaches to SM of everyday life by young CCS. METHODS: This is a sub-study of a larger study on Physical Activity among Childhood Cancer Survivors (the PACCS study). We conducted individual interviews with 22 CCS aged 9 to 18 years who were at least 1 year off-treatment. An hybrid inductive-decductive thematic analysis was used. RESULTS: Three main themes were identified: (1) managing everyday life with fatigue, (2) building self-management competence, and (3) cancer survivor as part of identity. Late effects, especially fatigue, contributed to a perceived ability gap compared to peers, limiting participation in everyday activities. CCS developed new SM skills to overcome such challenges and pushed themselves physically and mentally to master and balance activities and rest to regain energy. CCS changed activities, adapted their expectations, or legitimized their apparent lack of SM skills to regain a sense of self-efficacy. Managing the impact of cancer on relationships with family and friends also required use of SM strategies. CONCLUSIONS: The findings expand our currently limited knowledge of young CCS and SM skills they develop to manage everyday life after treatment completion. These, combined with ongoing support from family and peers, "make it work". IMPLICATIONS FOR CANCER SURVIVORS: The perspectives of young CCS illustrate their SM skills and support needs beyond transitioning off-treatment. Conceptualizing this within follow-up care may contribute to a feeling of mastery and increased satisfaction among CCS.