Empowering the family caregivers of individuals with long-term complex needs

有长期复杂需要的儿童的家庭照顾者肩负着照顾儿童一生的重担，国家卫生服务体系（NHS）提供“全面照顾”，承诺“为患者、其家庭和其照顾者带来改变”。另一种观点认为，照顾父母的人更有可能感到他们的社交和生活选择受到限制，生活质量差，自身健康也有问题，四分之一的人每周照顾孩子的时间超过100小时。在这种情况下，“复杂需求”一词可以定义为多种相互关联的需求的广度和深刻而强烈的需求的深度，这些需求导致家庭对其子女的日常个人、医疗和行为护理提出强烈要求。随着医疗的进步，这类儿童的数量正在增加，使这些儿童能够存活到至少中年，2016年有73,000名有复杂需求的儿童在学校，比2004年增加了近50%。财政紧缩也在这方面发挥了作用，2019年欧洲对这些家庭的一项调查发现，“与10年前相比，残疾儿童的需求现在明显没有得到很好的满足”。英国国民医疗服务体系最近开始着手解决这些问题，并将其作为“个性化护理”政策的一部分。这是一种改变，从地方卫生保健当局传统的交易关系立场，到以个性化的关系方式参与。然而，这种变化是一个由多个相互交织的因素构成的“邪恶问题”，这些因素在个人层面上有所不同，正是这个邪恶问题构成了这个博士项目的基础，目的是研究公民如何影响国家、地区和家庭层面上的关系转变。该项目将研究与医疗保健当局互动的历史交易性质如何剥夺了这些家庭照顾者的权力，以及这种转变对家庭的关系影响如何，以了解其好处并减轻新的责任。需要了解的是，在技术支持下，这些家庭通过何种方法能够影响国家、区域和家庭层面的变革，从而拥有对其子女的照顾。嵌入式行动研究将把作者定位为一个公民，作为一个有复杂需求的成年人的照顾者，在NHS英格兰，地方当局，NHS信托，ccg（临床调试小组）和家庭面前。理解将是调查的核心要素，因为各个层面的政治、权力和信任可能存在冲突。承认这项研究存在于一个邪恶的问题中是很重要的，因为它需要跨多个实体的深入、长期的参与，以及对缺乏信任和关系距离的探索。在他们的“数字公民和城市挑战”中，赖特和奥利弗提出了利用嵌入式研究的未来愿景，在这种研究中，研究是基于地点的，远离实验室环境，与有生活经验的公民一起。作者在他们的“数字公民：转向本地”中补充了这一点，纽卡斯尔大学开放实验室的研究人员将与地方当局和公民一起开展“本地嵌入式”项目，探索现有服务提供模式的替代方案，使用“参与式平台”，公民共同制定议程并分享决策。这个博士项目是一个数字公民项目，在这个项目中，研究人员被嵌入到国家、地区和家庭层面，承认公民是他们家庭的专家，而不是任何专业人士，公民将与当局和研究人员一起工作，共同提供服务，研究将对公民的生活产生积极影响。

Family caregivers of children with long-term complex needs have a burden of care placed upon them for the lifetime of the child, with the National Health Service (NHS) in place to provide "comprehensive care", committing to making "a difference to patients, their families and their carers". An alternate view is that parent carers are more likely to feel they have restricted social and life choices, a poor quality of life and problems with their own health, with a quarter caring for more than 100 hours a week. The term "complex needs" in this context can be defined as both a breadth of multiple interconnected needs and a depth of profound and intense needs, these needs result in intense demands on the family for their child's daily personal, medical, and behavioural care. The numbers of such children are increasing as medical treatments progress, allowing these children to survive into at least middle age, with 73,000 children with complex needs at school in 2016, nearly a 50% increase from 2004. Austerity has also played a role here, with a 2019 European survey on such families finding that "the needs of their disabled children are significantly less well met now, compared to 10 years ago". NHS England have recently moved to address these issues as part of their "Personalised Care" policy. This is a change away from local healthcare authorities' traditional stance of transactional relationships, to engaging in a personalised, relational way. However, the change is a 'wicked problem' of multiple interleaving factors that vary at the level of the individual, and it is this wicked problem that underlies this PhD project, with aims of examining how citizens can influence the move to the relational at the national, regional and family levels.The project will look at how the historical transactional nature of interactions with healthcare authorities has disempowered these family caregivers and how the move to the relational impacts upon the families, to understand the benefits and alleviate new responsibilities. The need is to understand the methods by which such families, supported by technology, can be empowered to influence change at the national, regional and family layers to own the care for their children. Embedded action research will position the author as a citizen, as a carer of an adult with complex needs, in front of NHS England, Local Authorities, NHS Trusts, CCGs (Clinical Commissioning Groups) and families. Sense-making will be a core element of investigation, as there are likely to be conflicting levels of politics, power and trust across the layers. Acknowledging this research as existing within a wicked problem will be of importance, as it will demand deep, long-term engagement across multiple entities, as will the exploration of lack of trust and relationship distance. In their "Digital Civics and the Cities Challenge", Wright and Oliver lay out a future vision utilising embedded research, where research is place based, away from a lab environment and alongside the citizens with lived experience. The authors add to this in their "Digital Civics: Taking a Local Turn", where researchers in the Newcastle University Open Lab are to work alongside local authorities and citizens on "locally embedded" projects, exploring alternatives to current models of service provision, using "participatory platforms", where citizens coproduce the agenda and share the decision making. This PhD is a Digital Civics project, where the researcher is embedded at the national, regional and family levels, acknowledging that the citizen is the expert on their family rather than any professional, that the citizen will work alongside the authorities and the researcher to coproduce service, that the research is to have a positive impact on citizens' lives.