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Aims: To explore how long-term and late effects of paediatric brain tumours influence the everyday lives of survivors at various ages and their parents., Design: A qualitative interview study using reflexive thematic analysis., Methods: We conducted individual interviews and focus groups with 14 paediatric brain tumour survivors aged 9-52 years and 16 parents, which were audiorecorded and transcribed. We inductively analyzed the data using Braun and Clarke's reflexive thematic analysis. Inductively derived themes were then mapped onto the components of the International Classification of Functioning, Disability and Health framework to examine the survivors' everyday functioning., Results: All survivors experienced ongoing long-term and late effects but with considerable variations in how these restricted the survivors' functioning and thus their ability to participate in everyday life activities (e.g. social, educational and work activities). All survivors expressed an explicit focus on and use of different strategies to manage their perceived functional limitations and participation restrictions. Many survivors expressed discrepancies between their own goals, expectations and actual abilities post-cancer; making them very aware of their limitations. In addition, many survivors and parents experienced ongoing concerns about the survivors' future, including the risk of late effects, relapse or other complications., Conclusion: A wide range of long-term and late effects continue to affect the survivors and their parents' functioning and everyday lives. Their ongoing needs emphasize the importance of comprehensive, life-long follow-up care, as recommended., Implications for the Profession And/or Patient Care: The complex challenges across the biopsychosocial realms faced by the survivors supports the call for multidisciplinary survivorship care. Nurses are well positioned to lead such care, as they are trained to provide holistic care and thereby support survivors' functioning and activity participation in everyday life., Reporting Method: We used the COREQ guidelines when reporting the study., Patient or Public Contribution: Two user representatives (one young adult PBT survivor and one mother of a PBT survivor) ensured the relevance and quality of the semi-structured interview guides prior to the interviews with the survivors and parents. The guides were sent to the user representatives by mail, and they provided their written feedback by mail to the first author., (© 2023 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Objective: The aims of the present study were to compare fatigue levels in children with pediatric acquired brain injury (pABI) with healthy controls (HCs), and examine the interplay of fatigue with associated factors., Method: We used baseline data from a preregistered randomized controlled trial. Seventy-six children aged 10-17 (median 13 years) with pABI in the chronic phase (88% with confirmatory cerebral imaging findings) and executive function (EF) complaints were included, most with moderate disability according to The Glasgow Outcome Scale Extended (GOSE-E) categorization. HCs consisted of 60 children aged 10-17 (median 13 years). All 127 participants completed measures of fatigue and intelligence. pABI participants were also assessed for behavioral problems, health-related quality of life (HRQoL), and EF. Nonparametric statistics were employed, in addition to a network analysis to model the unique associations between parent-reported fatigue and related factors., Results: Parents reported significantly more fatigue in the pABI-group (75% of scores in clinical range; < 70) compared to HCs (11.7% of scores in clinical range). No strong associations were found between fatigue and injury characteristics, but findings indicated more fatigue in the older than younger age-group for pABI participants. Network modeling revealed a central role for HRQoL, behavioral, and EF symptoms in relation to fatigue., Conclusions: Fatigue is reported to be highly prevalent in the chronic phase of pABI. When addressing fatigue, our findings demonstrate the advantage of including multidimensional measures of fatigue and examining associated psychological and cognitive constructs, such as HRQoL, behavioral problems, and EF. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Fear of cancer recurrence (FCR) in breast cancer survivors (BCSs) is common, associated with reduced quality of life and effective interventions exist. There are knowledge gaps concerning FCR among long-term, early-stage BCSs and its associations with other late effects. Within a national cohort, we explored these knowledge gaps, with the ultimate aim of improved care for BCSs experiencing long-term FCR. In this cross-sectional study, all BCSs aged 20–65 years with early-stage breast cancer in 2011–2012 (n = 2803), were identified by the Cancer Registry of Norway in 2019 and mailed a survey including the Assessment of Survivor Concerns used to measure FCR. Factors associated with moderate/high FCR (defined as a sum score of ≥ 6 of a possible range 3–12, or a single score on one of the items of ≥ 3) were explored using a three-block regression analyses including relevant sociodemographic-, health- and cancer-related variables. In total, 1311 BCSs were included (47%). Median age at survey was 60 years. Fifty-six % reported moderate-to-high FCR, associated with younger age (OR 0.96, 95% CI 0.95–0.97) and receiving chemo- and endocrine therapy (OR 1.59, 95% CI 1.15–2.20). After adding late effects into the model, FCR remained significantly associated with these variables, in addition to sleep disturbances (OR 1.58, 95% CI 1.18–2.10). In the final block, adding mental distress, FCR remained significantly associated with younger age (OR 0.97, 95% CI 0.96–0.99), receiving chemo- and endocrine therapy (OR 1.14, 95% CI 1.00–1.97), sleep disturbances (OR 1.44, 95% CI 1.08–1.94) and anxiety (OR 2.67, 95% CI 1.38–5.19). FCR was prevalent eight years after early-stage breast cancer. Being younger, receiving intensive treatment, experiencing sleep disturbances and/or anxiety were associated with moderate/high FCR. Addressing FCR should be part of standard follow-up care of long-term BCSs. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]