Department of Paediatric Haematology and Oncology, Division of Paediatric and Adolescent Medicine, Oslo University Hospital, Oslo, Norway.
Department of Behavioural Medicine, Institute of Basic Medical Science, Faculty of Medicine, University of Oslo, Oslo, Norway.
J Adv Nurs. 2024 Feb;80(2):550-565. doi: 10.1111/jan.15812. Epub 2023 Aug 3.
To explore how long-term and late effects of paediatric brain tumours influence the everyday lives of survivors at various ages and their parents.
A qualitative interview study using reflexive thematic analysis.
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.
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.
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.
We used the COREQ guidelines when reporting the study.
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.
探讨小儿脑瘤的长期和晚期影响如何影响不同年龄段幸存者及其父母的日常生活。
采用反思性主题分析的定性访谈研究。
我们对 14 名 9-52 岁的小儿脑瘤幸存者和 16 名家长进行了个人访谈和焦点小组，这些访谈都进行了录音并记录下来。我们使用 Braun 和 Clarke 的反思性主题分析对数据进行了归纳分析。然后，将归纳得出的主题映射到国际功能、残疾和健康分类框架的组成部分上，以检查幸存者的日常功能。
所有幸存者都经历了持续的长期和晚期影响，但这些影响对幸存者的功能产生了相当大的限制，从而限制了他们参与日常生活活动（如社交、教育和工作活动）的能力。所有幸存者都明确关注并使用不同的策略来管理他们感知到的功能限制和参与限制。许多幸存者表示，他们在癌症后对自己的目标、期望和实际能力存在差异，这使他们非常清楚自己的局限性。此外，许多幸存者和家长对幸存者的未来持续存在担忧，包括晚期影响、复发或其他并发症的风险。
广泛的长期和晚期影响继续影响幸存者及其父母的功能和日常生活。他们持续的需求强调了全面、终身后续护理的重要性，正如建议的那样。
对专业和/或患者护理的影响：幸存者在生物心理社会领域面临的复杂挑战支持了多学科生存护理的呼吁。护士有能力领导这种护理，因为他们接受过提供整体护理的培训，从而支持幸存者在日常生活中的功能和活动参与。
我们在报告研究时使用了 COREQ 指南。
两位用户代表（一名年轻的小儿脑瘤幸存者和一名小儿脑瘤幸存者的母亲）在对幸存者和家长进行访谈之前，确保了半结构化访谈指南的相关性和质量。指南通过邮件发送给用户代表，他们通过邮件向第一作者提供了书面反馈。
