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

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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.