UTILISING DIGITAL SERVICES TO EMPOWER THE UNPAID CARERS OF INDIVIDUALS WITH LONG-TERM COMPLEX NEEDSPeter Glick, Open Lab, Newcastle University, United Kingdom firstname.lastname@example.org
This study is developing sociotechnical responses to the challenges that families in England experience as they provide unpaid care for their children with profound disabilities such as autism, cerebral palsy and genetic disorders. A point of commonality between the families being the intense and enduring care work that is placed upon them, their complex lives inhibiting social interactions and negatively affecting their health and quality of life. The National Health Service in England is promoting a policy of “Personal Health Budgets” to address this burden of care, and although successful in some regions of England, has not been adopted nationally and lacks infrastructural support. This project seeks to address the families’ challenges through Participatory Action Research and Participatory Design, providing a set of design criteria for a technology to share assets and knowledge between the families, exploring trust and governance such that families can build an infrastructure to support one another in realising the potentials of Personal Health Budgets.
Families become marginalised when they give life to a child with long term complex needs such as autism, cerebral palsy or genetic disorders , the overwhelming levels of care that the child demands inhibiting social and life choices for the entire family, reducing both quality of life and health . The National Health Service in England (NHS England) accept the intensity of care placed on these families and offer "Personal Health Budgets" (PHBs)  as one element of a Personalised Care policy, where the families coproduce their care plan with local healthcare authorities. PHBs have been successful for families with children of high need , though with issues in accessing a PHB  and acknowledgements that "heavy responsibilities" are placed on vulnerable citizens with inadequate support . This PhD is working with families and healthcare authorities in England to develop an understanding of the trust and governance requirements that will allow for technologies that can support families in realising the potentials of PHBs.
BACKGROUND AND MOTIVATIONn
This study is working with parents of children with profound disabilities, the children living within a breadth and depth of needs extending over their lifetime , that includes combinations of cognitive disability, physical disability and behavioural difficulties. The term "parent" used as a placeholder for those citizens acting as the primary caregivers for a child, usually within a home rather than any institutional setting. A number of terms are in use for the role of the parents in this context such as "unpaid carer", "informal carer", "family caregiver". This study employs "unpaid carer", as it is how this study’s participants describe themselves, the UK government are increasingly using the term  and it excludes possible negative connotations of ’informal’ inferring casual, relaxed or easy going . The UK government reporting in 2015  “that 1.4 million UK citizens were providing unpaid care of more than 50 hours a week”, and Public Health England stating in 2017  that there were “over 39,000 children with Severe and Profound Multiple Learning Difficulties”.
A PHB is funding provided from NHS England to an individual or their proxy, that allows the recipient to manage their long-term healthcare and wellbeing needs, empowering by passing control of the budget to the family. Eligibility for a PHB is assessed by the local healthcare authority and a care plan coproduced with the recipient. NHS England’s policy of PHBs requires local healthcare authorities to undertake a transformative shift from delivering care through transactional relationships, to engaging in a personalised, relational manner with families. However, this shift is a "wicked problem"  that impacts on national healthcare authorities, down through local healthcare authorities, to the citizen. Muir and Parker  discuss this move to the relational, providing a historical context with recent international examples, though not visiting negative aspects such as a destabilisation in healthcare services. Naylor and Wellings in their 2019 report , examine the asset-based and place-based transformation of public health services to the relational, concluding that transferability is not a straightforward task. Both of the reports discuss the wicked problem, though with case studies being driven by national and local authorities, not the citizen, which this study explores.
HCI research has examined unpaid caring, providing a broad view of how technology can be a supporter , with the scenario of caring for an elderly family member of frequent interest. Research has commented on the lack of attention to unpaid carers , finding that care management technology can add to the burden of care, with design criteria of interest being that casual communication was important, not just interchanges of facts . Specific applications for unpaid carers include those that address the task of the unpaid carer repeatedly replaying their family member’s ‘lacks’ and ‘needs’ to new healthcare providers, medication plans  and unified planning systems . How technology can be designed for families to deal with healthcare authorities is a nuance that demands research, especially in the context of when issues are experienced by families gaining access to PHBs  and experiencing a lack of infrastructural support once a PHB is in place [5,13,21].
I am an unpaid carer for a family member with long term complex needs, this experience providing the motivation to embark on this Digital Civics study in the North East of England, based on citizen-empowerment and long-term engagement .
PROPOSED SOLUTION AND METHODOLOGIES
The approach is to engage in Participatory Action Research (PAR) and Participatory Design (PD) with the micro, meso and macro – in this context the citizens, the local healthcare authorities in the North East of England, and NHS England. My rationale for operating with these levels being that healthcare is a complex, siloed system that demands investigation as a whole to understand how best to influence, the assumption here is that attempting change at a single level is unlikely to deliver sustainable impact . Research questions being “How can citizens influence the sociotechnical infrastructuring of personalised healthcare budgets for families with children with long term complex needs?” and " What are the sociotechnical systems and digital services that can support the infrastructuring of personalised healthcare budgets for parents of children with long-term complex needs?". The data gathered from participants at all levels will be qualitative, with engagements undertaken as groups or as interviews (likely all remote due to Covid-19), to provide a rich set of data, rather than surveys or other high-volume interactions.
The citizen level will centre on technologies that aim to provide support with the new responsibilities placed upon families with PHBs. Families will be interviewed to understand their needs, with a working assumption of sharing assets and knowledge. An enabler here will be to use HCI to generate an understanding of the governance and trust demanded. The approach is to engage in PD with the families to create a user interface for technology that supports them in caring for their own and other families. Resources available to this PhD do not allow for an end-to-end production platform to be deployed, what is planned is a set of design criteria that form a set of functional and non-functional requirements coproduced with families, plus, one-off technologies as design probes such as spreadsheets for staff rota and staff monitoring webcams.
The local level will work with local healthcare authorities and a Community of Action (CoA) that I have co-created with seven families, all of whom have children with long-term complex needs. Participatory Action Research (PAR) is driving the approach, utilising its cyclical nature to design, collect data, analyse, plan and repeat. Critical ethnography will play its part to use participant observation and auto ethnography to collect data for analysis; the ‘critical’ aspect of the ethnography will carry importance as the healthcare authorities are likely to have a history that influences their current day actions. The theoretical standpoint of Action Science will be used to examine the workplace cultural aspects of local healthcare authorities, where staff appear to have two “theories of action”: their "espoused" attitude of working where they believe they are doing a good job, and their "theory-in-use" of how they actually operate.
At the national level, the study is working alongside NHS England to influence policies, with Participatory Action Research and critical ethnography based on auto ethnography and field notes to collect data.
Data collected from recent workshops with the CoA have been analysed using Thematic Analysis, creating codes and generating key themes. Data from my MRes has been analysed using Interpretative Phenomenological Analysis (IPA).
As the researcher is an unpaid carer and also a member of the CoA, bias is acknowledged. However, there is value in research being performed alongside families by a researcher that is seen as ‘one of us’, as this provides a novel perspective, providing deep access, an ease of empathy and an appreciation of these families’ lives that outsiders would find difficult to attain.
PREVIOUS AND PLANNED RESEARCH
The citizen level began with my 2018/2019 MRes and overlaps with the families that comprise the CoA. This will continue in 2020/2021 to create a technology design, starting with one-to-one interviews to gain initial ideas, moving to generative workshops to form a broad scope (using design probes), followed by iterative workshops to explore user interface possibilities, and finally, evaluation workshops to review prototypes of increasing fidelity.
The local level has formed around a set of engagements with the CoA, a key workshop taking place in March 2020 with local healthcare authorities. Of interest here are the tensions generated through performing PAR, with the CoA exerting control on the research through blocking research tasks and controlling workshop agendas and participants. Engagements will continue to centre around the CoA and local healthcare authorities, with meetings planned to explore working procedures and processes to address key deficiencies. Interviews and participant observation would be of use here, with a placement an ideal means to build relationships and gain access to staff working at the authorities.
At the national level, engagements have been in the form of business events rather than research initiated engagements, with field notes used to document over 30 meetings and workshops with NHS England and a national advocacy group. These engagements will shift to that of semi-structured interviews to develop an understanding of their views on the research questions.
Contributions will be founded on insights that reveal the disempowerment and tensions experienced by such families regarding the services in place to support to them. These insights will assist in the generation of a set of design criteria for a technology that supports the new responsibilities placed upon families that access a PHB. Understandings of trust and governance needs will be critical here to allow asset sharing through technology, providing confidence to both families and healthcare authorities. Non-functional requirements will be of significance as any technology is anticipated to be web-based, this allowing for commonality of interface and simplicity of installation; the design will also need to be mindful of varying levels of technical abilities, allowing for legacy devices with minimal capabilities and the families’ potential lack of time and finance.
This work was funded by EPSRC award EP/L016176/1 (Centre for Doctoral Training in Digital Civics).
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