Improved support for regional and remote paediatric oncology families: a randomised controlled trial of videotelephony

儿童癌症对整个家庭来说是一个主要的生活压力源。家庭日常生活的重大变化，在实际、社会和情感上造成重大破坏。有证据表明，这种破坏导致家庭成员之间的孤立和沟通不良，兄弟姐妹和焦虑的焦虑、低自尊和学校问题，创伤后应激症状和父母的抑郁风险。为这些家庭提供持续的支持是护理工作的重要组成部分。布里斯班皇家儿童医院儿科肿瘤科是昆士兰州、新南威尔士州北部和西南太平洋地区主要的三级儿科转诊中心。一个由医疗、护理和联合卫生专业人员组成的多学科团队为患有癌症的儿童及其家人提供护理和支持。每年大约有100名新诊断的病人得到照顾。该服务所照顾的家庭中约有60%生活在地区和偏远地区。在向这些地区公平提供专业保健服务方面存在一些挑战，包括是否有保健专业人员，以及由于距离、时间、费用和交通等原因能否获得这些服务。对于儿科肿瘤家庭，获得支持的机会是有限的。一种可能的解决办法是使用在线支持机制，例如视频电话，以便向患者、父母、兄弟姐妹和整个家庭提供急需的支持。这项研究的目的是看看视频电话是否可以用于支持皇家儿童医院儿科肿瘤服务的地区和偏远家庭，提供个性化的交流、教育、咨询和监测。这将展示视频电话技术的一种新的创新应用，以及一种支持区域和远程肿瘤患者及其家属的新方法。

Childhood cancer presents a major life stressor for the entire family. Significant changes to the everyday lives of families, practically, socially and emotionally cause major disruption. There is evidence that this disruption results in isolation and poor communication between family members, anxiety, low self-esteem and school problems for siblings and anxiety, post-traumatic stress symptoms and risk of depression for parents. Providing ongoing support to these families is an essential part of care. The Royal Children's Hospital (RCH) Paediatric Oncology Service in Brisbane is the major tertiary paediatric referral centre for Queensland, northern New South Wales and the southwest Pacific. A multidisciplinary team of medical, nursing, and allied health professionals provides care and support to children with cancer, as well as their families. Each year around 100 newly diagnosed patients are cared for. Around 60% of the families cared for by the service live in regional and remote areas. There are a number of challenges which inhibit the equitable provision of specialist health services to these areas including availability of health care professionals and accessibility due to distance, time, cost and transport. For paediatric oncology families, opportunities to receive support are limited. One possible solution is the use of online support mechanisms, such as videotelephony, to facilitate the provision of much needed support to patients, parents, siblings and the family as a whole. The objective of this research is to see if videotelephony can be used to support regional and remote families of the Royal Children's Hospital Paediatric Oncology Service providing indizidualised communication, education, counselling and monitoring. This will present a new and innovative use of videophone technology as well as a new method for supporting regional and remote oncology patients and their families.