For most children and adolescents diagnosed with a brain tumor, whether malignant or not, there will be an irrevocably negative impact on their life and that of their family. In Australia, 5 year disease-free survival is 76% meaning that many young people will go on to live with the negative consequences—including neurological and cognitive deficits, reduced school performance, psychological problems, and problems with peer social relationships—of the tumor and associated treatment. Little is known about the experiences and psychosocial healthcare needs of families living with brain tumor, particularly from the perspectives of children and adolescents. We will fill this knowledge gap with a multimethods approach for flexible data collection that addresses the diverse needs of children and families living with a life-threatening illness. Recruited through the largest state pediatric health service in Queensland, Australia, we will follow families from diagnosis to capture their experiences and healthcare needs as they navigate their child’s treatment and survivorship or death. Data collection methods include semi-structured interviews, virtual tours and Photovoice; all family members will be invited to participate. Reflexive thematic analysis will be used to explore the lived experiences of families, and their community and health services needs and associated facilitators and barriers to receiving such care. Our analysis will consider multiple perspectives: the individual, dynamics within each family, and patterns observed across families. This research will inform the co-design of interventions with families to address the service gaps and healthcare needs identified by participants.

对于大多数被诊断患有脑肿瘤的儿童和青少年，无论是否患有恶性肿瘤，都会对其生活和家庭生活造成不可挽回的负面影响。在澳大利亚，五年无病生存率为76％，这意味着许多年轻人将继续承受肿瘤的负面后果，包括神经和认知缺陷，学习成绩下降，心理问题以及同伴社会关系问题及相关治疗。关于患有脑瘤的家庭的经历和社会心理保健需求知之甚少，尤其是从儿童和青少年的角度。我们将通过一种多方法方法来填补这一知识空白，从而灵活地收集数据，从而解决患有威胁生命的疾病的儿童和家庭的各种需求。通过澳大利亚昆士兰州最大的州儿科医疗服务机构招募的人员，我们将跟踪诊断后的家庭，以帮助他们了解孩子的治疗和生存或死亡时的经历和医疗保健需求。数据收集方法包括半结构化访谈，虚拟游览和Photovoice；所有家庭成员都将被邀请参加。反思性主题分析将用于探索家庭的生活经验，他们的社区和卫生服务需求以及相关的促进者和获得此类护理的障碍。我们的分析将考虑多个角度：个人，每个家庭内部的动态以及在整个家庭中观察到的模式。