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.

A qualitative study of adolescent cancer survivors perspectives on social support from healthy peers - A RESPECT study.

BACKGROUND: Adolescents' psychosocial development is generally influenced by their peers. Those facing hospital-based cancer treatment are particularly challenged as they are isolated from their social network and lack sufficient coping resources. AIM: This study explores the adolescent cancer survivor's perceptions and experiences with healthy classmate socialization support efforts via hospital co-admittance, from diagnosis to reinstatement in school, as an intervention of the RESPECT (REhabilitation including Social and Physical Activity and Education in Children and Teenagers with cancer) Study. DESIGN: A phenomenological, descriptive study. METHODS: Using variation sampling, 14 adolescents (aged 14-19), who completed the RESPECT intervention (April 2016-July 2017), participated in qualitative, in-depth, semi-structured interviews that were thematically analysed. FINDINGS: Four themes emerged: (a) Ambassadors as liaison persons; (b) Ambassadors as promoters of normalization and identity continuity; (c) Ambassadors as 'behind the scenes' friends; and (d) feelings of vulnerability and inferiority. Ambassadors reinstated a sense of normalcy in the adolescents' daily life. They supported identity construction and served as liaison persons who buffered loneliness and social isolation as well as bridging a continued sense of belonging to one's school peer network. In contrast with other peers, ambassadors understood cancer-related issues, knowledge which they partially gained witnessing the impact of treatment-related side effects on their hospitalized classmates. However, the consequence of this trade-off was an asymmetry in their relationship, with the adolescents requiring a certain level of safeguard from their ambassadors to maintain equal power in the relationship. CONCLUSION: The ambassadors enhanced the adolescents' ability to cope with their altered social position during treatment and to psychosocially reinstate it on their return to school. IMPACT: Future interventions should offer opportunities for healthy peers to be educated in what it means to live with cancer. Future programs to sustain socialization in adolescents with cancer should involve healthy peers for the entirety of the treatment period.

Back to school with telepresence robot technology: A qualitative pilot study about how telepresence robots help school-aged children and adolescents with cancer to remain socially and academically connected with their school classes during treatment.

Aim: To explore how an AV1 telepresence robot helps school-aged children and adolescents with cancer to remain socially and academically connected with their school classes during cancer treatment. Design: Qualitative pilot study. Methods: Data were collected through semi-structured interviews with school-aged children and adolescents (N = 3, 12-14 years) diagnosed with cancer, their parents (N = 3), teachers (N = 2), classmates (12-14 years, N = 15, focus group interviews) and healthcare professionals (N = 4). Participant observation was performed in the child or adolescents' homes and in the classrooms during education participation via an AV1 telepresence robot. Results: Five themes emerged: expectations, sociality, learning, spatiality and technology. Participants experienced the robots as facilitating social interaction processes with classmates and inclusion in learning activities, reducing their sense of loneliness and lacking behind educationally. Nevertheless, multiple factors determine whether the robot is perceived as exclusive, including the technical functionality of the robot, spatiality in the classroom and mutual expectations of the parties involved.