The ATHENE Project Outputs
Understanding the assisted living needs of older people
Telehealth and telecare research has been dominated by efficacy trials. More work is needed to understand what matters to older people with assisted living needs, how illness affects people's capacity to use technologies.
40 people aged 60-98 were visited at home several times. Using ethnographic methods, we built a detailed picture of participants' lives, illness experiences and use (or non-use) of technologies. Participants presented a range of health conditions, family settings and ethnic backgrounds.
It was found that participants had multiple, mutually reinforcing impairments (e.g. tremor and visual loss and stiff hands), which they managed subjectively and experientially, appropriating or adapting technologies so as to enhance their capacity to sense and act on their world.
Successful adaptation of technologies to individual needs often occurred through 'bricolage' – pragmatic customisation by someone who knew the person well. The design challenge to support self-management in the home by producing "bricks" and developing and supporting bricolage by users and carers, could form the basis of a significant and radical research agenda in assistive living.
Our findings also highlighted the distinction between the 'objective' patient represented on the typical telehealth monitor (consisting of test results, biometric data and so on) and the subjective (and culturally framed) sensations and motor intentionality of the lived body. We believe this distinction has profound implications for assistive technology design, especially in relation to telehealth and the goal of self-management of multi-morbidity.
We have produced detailed narrative case summaries of the phase 1 participants. The summaries include:
• social, cultural and historical context
• participant's experience of ageing and ill health
• people in the participant's life
• what matters to the participant
• technologies in the participant's home and life
• materiality and capability
• real incidents of using (or choosing not to use) an ALT
• comment
Some examples are in the Case Summaries section."
Methodology for co-production of assisted living technologies
Pursuing ethnography in domestic settings raises practical and ethical challenges. We developed a cultural probe [link to 'cultural probe section] tool, the 'Home and Life Scrapbook' produced as part of the ATHENE project to support home visit interviews with elders with a range of ethnic and social backgrounds, family circumstances, health conditions and assisted living needs.
The Home and Life Scrapbook consists of an A4 booklet containing seven activities: Digital camera, maps, lists, wishes, body outline, home plan and diary. The researcher presents the materials to participants at the end of an initial home visit interview. On a return visit, the researcher and participant discuss the content of the scrapbook activities.
Digital camera: The digital camera was for participants to take pictures during the week (e.g. people they met, things important to them).
Maps: The maps activity was for participants to indicate their relationships with people, places and objects. Each page included a silhouette figure in the centre, representing the participant. They could draw/write on the page to indicate important people/places/objects.
Lists: The lists activity included four separate sections to write down 'likes', 'dislikes', things they were 'comfortable with' and things they were 'concerned about'.
Wishes: The wishes activity involved writing down three things they would like to change or improve about their life.
Body outline: The body outline was to draw/write on to indicate symptoms or concerns related to their health.
Home plan: The home plan activity involved drawing the layout of rooms in the home and indicating activities and relevant objects within them.
Diary: A diary was included at the back of the booklet to record routines/events. Each day included cue questions: "What did you like about today?" and "How could today have been better?"
The probe materials helped gain insight into features and routines within domestic settings to inform how assisted living technologies, such as telecare and telehealth, might fit into the home.
Dialogue: Probe materials promoted dialogue between researcher and participant, and engaged participants in discussions about their circumstances and needs.
Reflection: By keeping probe materials at home for a week, participants were able to reflect on their daily lives and capture events and experiences in situ.
Memory aid: The probes acted as a memory aid for participants to recall personal routines and key events and also capture the subjective elements of these experiences.
Communication: Visual materials provided a means for 'cognitive offloading', helping to communicate complex aspects of daily living, such as members within
For more information on the use of the cultural probe methodology in the ATHENE project read
Training programme for ALT industry and service providers
We have produced a training curriculum on co-production for ALT stakeholder groups. In the training curriculum, we will develop and expand on themes concerning the challenges of understanding the assisted living needs of older people in domestic settings, and methods for involving older people and their carers in the co-production of ALTs and services.
The curriculum will cover:
• Introduction: overview of ATHENE and related literature
• Ethnographic methods and materials
• Case studies of assisted living needs
• Bricolage/co-production overview
• Challenges for designers and service providers
• Discussion: take home lessons
The target audience is people involved in the design and development of ALTs, healthcare professionals involved in the planning, management and delivery of assisted living services, Computer-Supported Cooperative Work (CSCW) and Social Science researchers, including those in health and social care, and commercial researchers and consultants working in the field.
This material was showcased at the Design4HealthTutorial and ECSCW 2013 Masterclass.
For more information on the training programme, please contact us.
Examples of some training material is available here.