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BACKGROUND

Issues of ‘wandering’ or becoming lost outside are among the most frequent problems faced by people living with dementia. Technologies based on Global Positioning Systems (GPS) can constantly give a person’s position online, thus enabling carers to track and locate the person with dementia outside their home. These technologies can be configured to raise alerts if the wearer exits predefined ‘safe zone’ or leaves the home at certain times. 

At this case site, we are working with Adult Social Care teams to support effective implementation and use of GPS solutions. There are a number of challenges to the successful use of such technology. For example, users must remember to wear the device, it must be charged daily, and a ‘responder’ must be available and able to find the wearer in the event of an alert. In addition, it requires a greater degree of configuration than standard telecare, such as geographical and temporal parameters that enable sufficient freedom, while providing safety and reassurance. 

This project seeks to establish how the care service can provide and support personalised GPS solutions through co-production. Co-production is a participatory design approach that focuses on user-centred ‘design-in-use’ of both the technology and ways of working with it, through continually feeding back users’ experiences and practices into ongoing design and development process.

STUDY DESIGN AND METHODS

This organisational case study involves ethnography and action research with service staff (and their collaborators), service users with dementia and their carers. The ethnography explores current practice in the provision of GPS tracking, and challenges faced by professional staff (e.g. occupational therapists, technicians, call centre monitors, technology suppliers), users and carers during implementation and use. 

The action research is implementing and evaluating a co-production methodology to support personalisation and ongoing adaptation of GPS solutions in-use. This involves working with 5-10 people with dementia (and their care networks) to customise and adapt the technology and service. The work is being conducted alongside the service to establish organisational change to support co-production as part of routine practice. 

ACHIEVING CHANGE

The study seeks to transform the capacity of the service to customise and support the use of assisted living technologies for people with dementia. The action research with 5-10 cases will illuminate the need to customise solutions in-use and highlight organisational change required to support this.

Co-producing personalised solutions: Ethnographic and participatory design methods are being used to build a rich picture of participants’ lives and experiences with the GPS technology. Each case narrative captures the everyday reality of using the technology. In partnership with the service staff, JW produces case narratives to provide insight into how the technology could better meet the user’s needs and explore opportunities to improve and resolve problems. This can include subtle, but important, configurations within the technology (e.g. changing ‘safe-zone’ parameters to reduce ‘false alarms’) or materials at hand (e.g. attaching device to house keys to avoid forgetting it). However, in other cases the adaptations must address more complex problems, drawing on the technical, clinical and personal knowledge across the formal and informal support network (e.g. users repeatedly discarding or dismantling the technology). 

JW is conducting multiple visits to case participant, to help review and modify the intervention concurrently over time. The data will be written as a longitudinal case narrative to show how people adapt – and adapt to – the technology in use. Each case is unique, with great diversity in terms of how the technology supports them. However, they consistently demonstrate how the service can successfully involve service users in the development of personalised solutions so that they can make significant changes to their lives.

By focusing on a small sample of cases, the action research will highlight the complex social and organisational difficulties to be addressed in order to embed the co-production approach within routine practice. These data will be taken forward to inform service development. 

Co-production in routine practice: The action research is using ethnographic study of the organisational structures to establish how to support the co-production of GPS technology solutions within routine practice. The capacity of the organisation to support co-production is being explored through informal discussions, meetings and workshops with key staff (e.g. management, commissioning, telecare coordinators, care professionals). The case narratives will provide a context to guide these discussions and identify opportunities to change social and technical processes. This could include, for example, strategies to maintain dialogue with users and their carers, communication channels between call operators and social care staff, and resources for training and hands-on support. Therefore, the role of the researcher will be to bring together key stakeholders from within service (and collaborating organisations) in order to establish the inter- and intra-organisational change needed in order to support the co-production of personalised GPS solutions, and to evaluate and inform these changes as part of an iterative service development process. 

CHALLENGES BEING EXPLORED

User involvement: This study will help service staff adapt and apply the ethnographic and participatory design approaches to engage with users over time. A major challenge here will be exploring how to move from a labour-intensive, ‘research quality’ assessment of people’s lives to a briefer but still effective (and cost-effective) approach that is possible to use as part of health and social care.

Coordination and collaboration: An analysis of communication and interactions (formal and informal) across the multiple people and service is planned, in order to establish how information about the user’s experience with the technology can be usefully harnessed and shared. 

Managing bespoke solutions: The action research will encourage the organisation to consider multiple technology options and devices, in order to deal with one-off problems. A challenge here will be to integrate a range of solutions and products within the service, while maintaining the staff’s capacity manage and support users with different technologies.