What contextual factors make older adults unique?
Older adults, i.e., people in the 3rd and 4th age of their lifecycle, are likely to share some similar characteristics, depending on their position in the lifecycle, such as not in paid work, diminishing eye sight, hearing, looking after grandchildren, acting as main carers for aged parents (or both), mobility limitations. I would define older adults broadly as people over the age of 65, although I think this is debateable.
I’ve worked with ‘older adults’ throughout my career and enjoyed and profited from the resulting interactions both as an academic research support librarian and as researcher. What is unique, for me, is the storehouse of personal experience and historical knowledge which informs and influences their, usually, frank insights from which we can learn a lot, if we engage as equals. I am interested in how ageism is acceptable by large sections of the population which in any other circumstances would be unacceptable. Physical deterioration and limitations associated with ageing give license to blanket assumptions making the person the problem not the design of products, services, buildings, transport etc. Ageism is also reflected in social and economic policies affecting this population. Whilst there is common agreement that youth requires investment, to learn, grow and develop their potential, this is not true for the oldest old or even the young old.
Over 80’s are of particular interest (to me) due to the concomitant likelihood (but not universal) of physical and/or cognitive deterioration impacting on quality of life through health and wellbeing, limited personal choices and independence in life style, such as giving up driving, and inability to get out and about. Increased longevity means a greater potential for diminishing physical and mental facilities, memory especially, as well as social and digital exclusion due to political, economic, educational, health or social reasons. Changing family structures exacerbates the impact of rapidly changing technologies for some older adults, i.e., smaller families, single children, more widely dispersed globally; complexities in family makeup through more frequent, common divorce rates, half & step siblings, gaps in family interconnectedness and a growing population of single childless people whose families have moved, or passed, away. Older adults are less likely, therefore, to have support in exposure to new and emerging technologies and no technical support for familiar or new technologies. There is a greater likelihood of being negatively affected by social exclusion, economically disadvantaged, disenfranchised from civic life and lost from the community radar.
Social policy has addressed the population growth of ‘disabled’ elders with ‘ageing in place’ policies or residential care. Both policies create a population separated from their local networks and communities. For single people, shopkeepers, bank tellers, hairdressers, postal deliverers are ‘consequential strangers’ who create a safety net of social interactions. Family and friends who are main carers may also be older adults with decreased social capital and economic limitations due to their caring responsibilities, equally impactful on health and wellbeing. The result is vulnerability due to age; potential marginalisation, disadvantageous power relationships and disability dependency with rights and civil liberties effectively removed. Research evidence reports that as long as a person is in control of their life, even just the daily requirements of living, they will continue as independent agents for as long as possible. When taken away deterioration tends to speed up.
The voice of this generation is missing in most research around accessibility and usability or indeed around devices which might enhance health and wellbeing such as making social networking more accessible in community spaces, public buildings, care homes etc. Studies rarely ‘walk in their shoes’. Research papers rarely evidence the representative nature of their older participants. Wider use of ethnographic and empathic approaches out in communities is necessary to understand context and inhibiting factors. BUT outreach into communities and relationship-based work is challenging and time consuming. It requires heavy investment in recruitment and relationship building. There is a gap in work being done with isolated older adults (housebound or dependent on others for connecting with outside world) either in their own home or in residential care homes. The potential for them using technologies to connect with others is not well studied. The potential for vicarious use either with family friends or volunteers is probably understood by CHI community but there is not much research to roll out to social policy communities. Hardest part is getting people to visit in care homes and there is a problem of security issues for people in their own homes.
Why do you think aging is an interesting area to research?
It’s an equality issue which I think academic research should address in order to provide evidence to underpin debate and hopefully, policy. But it is also of universal relevance, it is the one irreversible destination towards which everyone is headed. From a CHI viewpoint once technologies are designed for the least able, everybody benefits. Ageing is almost universally considered negatively (at least in western cultures) by all ages, no one wants to get older and each generation experiences very different worlds, accruing a wealth of knowledge and experience which is rarely utilised or even acknowledged by the following generation. The injustices exposed in studying the lives of older adults motivate me to better understand and maybe contribute to improving or at least highlighting situations. I am interested in their world view and believe they have much to contribute to their communities, other generations and research, if enabled. It’s an unresolved civil liberties and social justice issue while the oldest old, in particular, are side-lined out of sight with no recourse to a voice.
The challenge is the complexity of the problems (health care, nutrition, isolation, dependency, economic and social deprivation). The solutions lie within cross disciplinary collaboration so that e.g., designers, artists, health researchers, geographers, architects, technologists, social policy and transport all understand the positive or negative impact of their work and the interconnections required to improve planning and provision of services for older adults. The challenges for the CHI community is thinking, studying, researching and learning about the contextual reality for the target users, working with those communities and populations and then working with other disciplines to share findings, e.g., ways in which technology can enhance the effectiveness of service delivery when looking at e.g. transport solutions to enable ‘housebound’ elders out to: events, day centres, schools, shops, the park etc., so that statutory, private, voluntary and community options are working together and clients can actually find a transport solution that addresses specific needs.
The challenge is also enabling the voice of the users, co-production, and empathic methodologies which bring this population into the research world. This is very time consuming and requires personal investment and relationship work.
What themes have you explored in your work?
- Ways of involving representative users in research, learning from and seeing through the eyes of participants. Originally seeing from the point of view of users, reluctant users and non-users of technology.
- Recruiting large numbers of older adults to join a User Pool and take part in a variety of digital research studies. Actively identifying gaps in the pool and targeting, social class, age or genders to fill gaps.
- Themes have included: Digital inclusion and exclusion; Ethical Processes; Voice of vulnerable population; Empathic and relationship–based approaches to including older people in research.
- Older adults (aged 65+) digital exclusion. Discovering technology adoption by older adults: what they like, enjoy and their motivation talesoftechnology.co.uk
- Interviews with care home stakeholders, visitors, workers and residents. Mainly focused on ways the built environment had an impact on the health and wellbeing of the people who live, work and visit care homes. This work led to further study on:
- The ethics of working with vulnerable adults and the emotional impact on the researchers.
- Developing a visual and participative method to encourage ease of, and relaxed participation in, research (social activity using visual stimuli in the form of a ‘game’) by care home residents. A vulnerable population due to their situation, where ‘criticising the hand that feeds them’ might influence their freedom to respond openly about their care home.
What research methods have you used to engage older adults in the design process or otherwise elicit relevant design criteria?
Mainly interviews, founded on establishing a relationship with participants prior to, during and following studies. The importance of ‘levelling the playing field’ for people from communities with little or no experience of academic interactions. Thus tailoring the ethics process and the environment to be accessible, user friendly and non-threatening (intellectually or socially). The ultimate aim was to widen participation and broaden the representation of different people from different backgrounds, i.e. not the already engaged ‘usual suspects’. I was lucky to be part of a 5 year research study where it was possible to develop working (distant) relationships with a large pool of older adults and recruitment worked because of this.
I developed a ‘game’ interview model for the inclusion of care home residents. Visual stimuli were employed to maintain objectivity, allow for broad interpretation from participants, and to address the need for non-threatening participation by representatives of the oldest old. The ‘game’ concept worked as it created a democratic situation in which sitting side by side allowed greater ease of conversation sharing. Taking part in an activity whilst responding to questions reduced the formality of participating in academic research. The challenge was not to patronize or infantilize participants in efforts to be less academic, whilst maintaining academic rigour. Again many visits were needed to establish a relationship before the study. However, the biggest personal challenge here was to build relationships and then disappear.
What aspects of aging, or what challenges in aging research, will continue to be relevant in decades to come, and why?
- Maintaining independence and control. Rights to live an independent life with all of the risks that involves.
- Issues of economic limitations as well as physical and cognitive.
- Inclusion = civic, social, community.
- Engagement = socially, entertainment access: literature, film, documentaries, education and training.
- Health and Wellbeing = personal responsibility for own health
How will applications of the future differ from today for older adults?
I am not a technologist with any expertise in technology development. I’m a functional user motivated by work and keeping in touch with family and friends. As such I am no predictor of the future. Given my own experience I think technology will continue to change both subtly and exponentially so that I, and other older adults, will continue to struggle to keep up and stay confused. Some examples, for instance, family abroad currently communicate using a variety of apps and methods. I am constantly trying to work out which app they used to send a particular message, picture, email, text, messenger on Facebook, WhatsApp, Instagram, or indeed all of these under different family names or family groups. Recalling which app was used when historically trying to find something is very frustrating. I just realised I need to keep my phone with me so I can check on one device to see what is coming through on another device. At a railway station collecting pre-ordered tickets requires the phone with the requisite email and code and the purse with the card used to buy them online whilst managing luggage. For anyone with a tremor, limited mobility, poor balance or lack confidence all of these create tensions. I suspect this is not going to change and we will always be trying to keep up.
I hope that some technologies will become more ubiquitous (tablet, laptop, Wi-Fi and social media) enabling isolated elders to keep in contact with their friends and family wherever they are. Hopefully, as Wi-Fi becomes more universal in public buildings, community centres, and libraries (if any remain open), there may be other routes for people who cannot afford the technology themselves. The potential for people to use technologies to take responsibility for their own health through support groups and improved access to information is a further hope/expectation. The hope that local authorities will understand how technology can create more efficient access to information such as acting to triage services across sectors especially since the 3rd sector has picked up many of the services previously offered by social services or the NHS making the support less obvious and more piecemeal for the clients to discover the right one.
What are you hoping to get out of attending this workshop?
Ways to more effectively share research findings. Hope people might pick up on gaps in my work. Ways to have a practical impact for the target population. Ways to roll out good ideas, share experience and improve inclusion in research studies.
I am interested in how researchers identify the areas they decide to invest time, intellect, skills, research funding in. When starting out how do they know where the gaps are? How do they measure what is important or not? Should we be concerned that some research seems ephemeral or irrelevant to solving real world problems?
Dee, M., and Hanson, V. L. 2016. ‘Just passing through’: Research in care homes. ACM SIGCHI interactions, Volume 23 Issue 5, (Sept-Oct 2016), 58-61.
Dee, M., and Hanson, V. L. 2016. A pool of representative users for accessibility research: Seeing through the eyes of users. ACM Transactions on Accessible Computing, 8, 1, Article 4 (January 2016), 31 pages
Dee, M. and Hanson, V. L. 2016. The ethics of care home research. Paper at the workshop on ‘Ethical Encounters in HCI’ at CHI’16, ACM SIGCHI Conference on Human Factors in Computing Systems (San Jose, CA, May, 2016). https://ethicalencountershci.files.wordpress.com/2016/03/dee-and-hanson.pdf
Dee, M., and Hanson, V. L. 2014. A large user pool for accessibility research with representative users. In Proceedings of the 16th International ACM SIGACCESS Conference on Computers and Accessibility (Rochester, NY, USA, 2014). ASSETS'14. ACM, New York, NY, 35 – 42.
Conference Papers / Presentations
Dee, Marianne. Capturing the voice of care home residents. A pictorial ‘interviewing’ method. 2018. Presentation at the Design4Health 5th International Conference. 4-6, September, Sheffield Hallam University. Lab4 Living. https://research.shu.ac.uk/design4health/wp-content/uploads/2018/09/566.pdf
Dee, M. & Hanson, V. L. 2016. BESiDE: Investigating Care Home Design & Capturing the Voice of the Users. Presentation at British Society of Gerontology 45th Annual Conference Research Design for Wellbeing: Ageing and mobility on the built environment. University of Stirling, 6th – 8th July, 2016 2016.
Dee, M. and Hanson, V.L. 2016. The ethics of care home research. CHI’16 Workshop on Ethical Encounters (CHI San Jose, May 7-12, 2016)
Dee, M. and Hanson, V.L. 2014. A Large Pool for Accessibility Research with Representative Users. ACM. The 16th International ACM SIGACCESS Conference on Computers and Accessibility. Assets 20 -22 October 2014. Rochester, New York
Dee, M and Hanson, V.L. 2013. A welcome visitor: How visitors experience care homes – enabling and disabling visits. Lifelong Health and Wellbeing Conference December 2013, University College, London.
Dee, M. and Hanson, V.L. 2012.’Tales of Technology’. Digital Futures 2012, Third Annual Digital Economy All Hands Conference, Aberdeen University, October 23-25