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

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.

The proposed CDT for Digital Civics aims to develop a cohort of 60+ students engaged in theorising, designing, developing, and evaluating personal & community-based digital technologies to explore and create forms of civic engagement that support local communities, local service provision, and local democracy. The CDT will work directly with several local authorities (in the Northeast of England), a variety of SMEs and NGOs and some larger international corporations. As such there are various potential beneficiaries of the CDT.

Firstly, there are the students themselves who will graduate as highly skilled academic and applied researchers - well-versed in interdisciplinary collaboration and trained to transfer, leverage and exploit the insight generated from their research and who are able to contribute to the economic and social development of the UK.

The research they will conduct will be focused on supporting local communities, and given the aim to enhance public service provision and support engagement in local issues. It is likely that their research will enhance quality of life, health and wellbeing in these areas, improve social welfare and social cohesion in the participating communities and generally increase public awareness of social and economic issues that are likely to be affecting these research participants, and this will be done at various levels from older adults through to school-aged communities.

The research is also intended to have impact at a Government level, and through our direct collaboration with our participating local authority partners student research projects will directly influence policy making at local, regional and national levels. Case-based research will transform evidence-based policy, and provide evidence to support changing organisational cultures and practices (for example enhancing the role of public participation in local governance) and through shaping and enhancing the effectiveness of public services, by directly designing and developing digital augmentations. As such the research projects directly intend to enhance the efficiency, performance and sustainability of public services through the user-centred development of new digital technologies and the promotion of local activism and civic engagement.

Another significant impact of the CDT will be the development and training of skilled people in non-academic professions through the development and open-sourcing of learning materials, which aim to transfer research insight (including skills and processes as much as research 'findings') to non-academic organisations, such as SMEs, NGOs and larger corporations (sourced through our broad partner network). These SMEs, NGOs and corporations (alongside the doctoral students themselves) are also likely to be commercial beneficiaries of the research. Active processes of knowledge transfer will directly contribute towards wealth creation and economic prosperity by supporting the enhancement of research capacity, knowledge and skills in businesses and organisations and through the commercialisation of research in the formation of spin-out companies to serve the private, public and third sectors.