The University of Auckland, Private Bag 92019, Auckland, 1142, New Zealand.
National Child Cancer Network, Te Aho O Te Kahu Cancer Control Agency, Wellington, New Zealand.
Support Care Cancer. 2023 May 8;31(6):326. doi: 10.1007/s00520-023-07787-3.
This study aimed to understand the experience of families caring for a child with cancer in New Zealand (NZ) who received nutrition and dietetic support during cancer treatment and their preferences for the delivery, format, and timing of nutrition information.
Childhood cancer patients and their families (N = 21) participated in a mixed-methods study at a specialist paediatric oncology centre in Auckland, NZ. Before the semi-structured interview, participants completed a questionnaire capturing demographic, disease, and treatment characteristics of their child, their nutrition concerns, and their information needs. Quantitative data were described, and qualitative thematic analysis of the semi-structured interviews was performed using NVivo data analysis software.
Eighty-six percent of participants indicated they had concerns about their child's nutrition during treatment. The most common concerns were anorexia, vomiting, and weight loss. While many were happy with the quality of the nutrition support received, one-third of the patients wanted more support. Four key themes emerged from the interviews: (1) patients experience significant and distressing nutrition challenges; (2) patients and families have mixed perceptions of EN; (3) there are gaps in the current nutrition support system for inpatients; and (4) a desire for more accessible nutrition support.
Childhood cancer patients and families experience significant and distressing nutrition challenges during treatment. Standardising information given to patients and their families may optimise nutrition support for paediatric oncology patients and reduce the discordance between families and health professionals. Future implementation of a nutrition decision aid in this population is warranted.
本研究旨在了解新西兰（NZ）在癌症治疗期间接受营养和饮食支持的癌症患儿的家庭的体验，以及他们对营养信息传递、格式和时间的偏好。
在奥克兰的一家儿科肿瘤专科中心，对 21 名癌症患儿及其家庭进行了一项混合方法研究。在进行半结构化访谈之前，参与者完成了一份问卷，其中包括他们孩子的人口统计学、疾病和治疗特征、他们的营养关注点以及他们的信息需求。对定量数据进行了描述，并使用 NVivo 数据分析软件对半结构访谈的定性主题分析进行了分析。
86%的参与者表示，他们在治疗期间对孩子的营养有担忧。最常见的担忧是厌食、呕吐和体重减轻。虽然许多人对所接受的营养支持质量感到满意，但三分之一的患者希望得到更多的支持。访谈中出现了四个关键主题：（1）患者经历了显著且令人痛苦的营养挑战；（2）患者和家庭对肠内营养的看法存在差异；（3）住院患者的当前营养支持系统存在差距；（4）渴望获得更便捷的营养支持。
癌症患儿及其家庭在治疗期间经历了显著且令人痛苦的营养挑战。标准化提供给患者及其家庭的信息可能会优化儿科肿瘤患者的营养支持，并减少家庭与卫生专业人员之间的不一致。在该人群中实施营养决策辅助工具是有必要的。
