“Loss in the Internet Age”Technologies for Supporting the

Bereaved

Michael MassimiDepartment of Computer Science

University of Toronto

About Me and My Lab

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• “Technologies for Aging Gracefully” lab

• Interdisciplinary approach to technology during aging and late life

• Computer scientists, engineers, psychologists, designers…

• Ph.D. candidate in Computer Science

• Advisor: Dr. Ronald M. Baecker

Goals

1. Share some of our research in this space

2. Help you engage with technology through a design exercise

3. Identify some web resources for use with clients

4. Suggest some future directions for technology and bereavement

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CURRENT RESEARCH DIRECTIONSPart 1

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Q: What kind of training or background research

would be helpful if you were interested in

understanding death and bereavement?

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Thanatology

Natural Sciences

• Medicine– Palliative care

– Psychiatry

– Oncology

• Biology

Social Sciences

• Sociology

• Psychology

• Social work

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Humanities

• Theology

• Literature

• Drama/film

• Journalism

Business

• Funeral management

• Cemetery management

… many more?!

Thanatology

Natural Sciences

• Medicine– Palliative care

– Psychiatry

– Oncology

• Biology

Social Sciences

• Sociology

• Psychology

• Social work

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Humanities

• Theology

• Literature

• Drama/film

• Journalism

Business

• Funeral management

• Cemetery management

Computing??

• (Probably not your first guess!)

• Concerned with what can be efficiently computed or automated

• Some computer science subfields:– Artificial intelligence

– Discrete mathematics

– Software engineering

– Systems

– Computer graphics

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Computing

A contributing field to bereavement research and practice?

Yes!

Applying 2 subfields of computer science:

1. Human-computer interaction (HCI)

2. Ubiquitous computing (ubicomp)

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Human-Computer Interaction (HCI)

“A discipline concerned with the design, evaluation and implementation of interactive computing systems for human use and with the study of major phenomena surrounding

them.” – Association for Computing Machinery

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What is HCI?

• User-centered design

– Technology design flows from real user needs and preferences

• Multidisciplinary

– Psychology and sociology

• Not just “building”

– Design – how/why do we build it?

– Evaluation – how well does it achieve its goals?

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A shift in the landscape…

• HCI generally focused on productivity, efficiency, accessibility, error rates…

• But computing is more than this!

• Increasing interest inreal “human values”:

– Sustainability

– Health

– Developing nations

– … “life disruptions”?12

AKA:“off the desktop”pervasive computingsmart environmentscalm computinginternet of thingscontext-aware computingambient intelligencenomadic computingeveryware

Ubiquitous Computing (ubicomp)

Research perspective

• Computing is more important than ever

• HCI and ubicomp stand to contribute to how we understand the end of life:

– Theoretically/academically

– Practically

• Thesis research focused on this area

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What is a computer scientist doing studying bereavement???

“nerd_tomb.JPG”, gizmodo.com

How might technology better provide social support and impact the psychosocial well-being of the bereaved?

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II

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How do bereaved people use technology?

How do we design technology for the bereaved?

Research Questions

I: Web survey & interviews

• Question: How do bereaved people use technology?

• Web survey, follow-up semi-structured interviews

• Inheriting, remembering, and changing

• 41 survey responses 10 interviews

• Identified 10 opportunities for design

– “Social support problem”

Web survey (n = 41)

Follow-up interviews (n = 10)

Inheriting technology

Using technology to remember

Changes in behavior and attitudes

Respondents and Deceased

Respondents Deceased Relative

Age M = 35.1 (SD = 11.94, min = 18, max = 65)

M = 72.3(SD = 18, min = 25, max = 95)

Gender F = 28, M= 12, N/A = 1 F= 21, M= 18, N/A = 2

Occupation (top 3)

Student = 16Academic = 4Technology professional = 3

Homemaker = 11Retired = 7Trade worker = 5

Generational Differences

“No *files or online accounts+, she died roughly at the age of 95, so her generation...I’m 33 myself, so I was born into a digital era in a way.” – P56

Frequency of Inheritance

Total Inherited Sold Given away Charity Disposed Unknown Other

PC 19 12 0 0 1 3 2 1

TV/VCR devices 19 13 1 1 1 2 0 1

Mobile phone 15 7 0 0 2 3 2 1

Email account 15 2 0 0 0 4 7 2

Online banking 11 2 0 0 0 1 5 3

Digital camera 6 4 0 1 0 0 1 0

Social networking 4 0 0 0 0 2 1 1

IM account 4 0 0 0 0 2 2 0

MP3/music player 4 3 0 1 0 0 0 0Video game console 3 2 0 1 0 0 0 0Online photo sharing 1 1 0 0 0 0 0 0

Physicality in Inheritance

Frequently inherited:Personal computersTVs/VCRsMobile phonesDigital cameras

Frequently lost:Email accountsOnline banking accountsSocial networking accountsIM accounts

Passwords and Security

“We just left it, I couldn’t get into *my brother’s+

account.” – P58

“She was a good artist, and they are just small paintings she did…all of

them have been scooped up. Someone’s got their name on the

back of it.” – P8

Affordances for Claiming

Domestic Data

“My dad is still living, anything that was in the

house goes to him, and all of her

investments, all the money, goes back

to him.” – P8

Discovery and Privacy

“There are close things that are awkward and odd to see as you go

through, and you don’t know if there is something later that you

should see. It’s tough. At least with diaries you can recognize that they are a diary, and act accordingly.” –

P9

Emotion and Aesthetics

Emotion attached to inherited devices

“One of the computers, she let me have before she passed because

she wasn’t using it. After she passed away, the same year, I spilled tea on the keyboard… it totally froze and shut down. I

freaked out…because it was her computer, even though it wasn’t

something she used, she had given it to me.” – P21

About split on digital

as a meaningful

replacement for

physical items

(54%)

Emotion and Aesthetics

• ... Or not?

Beauty and aesthetics may play a role in making devices more desirable to inherit

“There’s no emotion attached to a computer, no memory attached to a

cell phone – they’re very easy to get rid of after death I think. It’s not like a

favorite vase or something that has a family history to it. It doesn’t have

beauty or genealogical significance. It’s just functional.” – P9

Small groups Large groups

Together • Technology gift-giving• Photo review

• Photo collages• Family videos

At a distance

• Telephone• Email

• Social networking • Online memorials

and obituaries

Remembering Together

Afterlifelogging

“I will tell you, before my dad dies (he’s 90, by the way), we’re going to get him to tell some stories or

jokes so we can have his voice recorded, and maybe we’ll video him…and put them with pictures

on a DVD.” – P8

Reconciling the Death with Digital Agency

“I got a call a couple of months from her office after

she died, but it was her phone number, and I thought I was

having some surreal poltergeist kind of moment…I recognized she passed away

and thought ‘My mom’s calling me’ and I froze and

freaked out there. I remember that terrified me, but how

excited I was at the potential to talk to her.” – P21

Attitudes and Behaviors

• Actively made plans (13%)

– “Directions for managing my personal technologies are mentioned in my will.” – P7

• Actively avoided plans (8%)

– “It is irrelevant to me what happens to possessions after I die.” – P44

• Haven’t considered it (79%)

– “I haven’t thought about it at all. I think my sister would take *my computer+ but I didn’t make those plans.” – P26

• Inheritance systems

• Sharing and remembering

Take-Aways

• Bereavement is mediated by technology

– Comforts and confronts

– Opportunities for improved and innovative design

• Designing for humans means designing for a limited lifespan

– “Thanatosensitive design”

Group Breakout Activity

• Imagine you are designing a website for social support for bereaved people

• In groups, come up with a fictional website that you think would be of use to the bereaved

• Share these ideas afterwards

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WEB RESOURCES FOR THE BEREAVED

Part 2

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Technology in Daily Life

• 74% of American adults use the Internet (Pew Research Center, 2010)

• Centre for communication, photographs, and information

• Technologies not often designed with the death of the user in mind

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Web Tour

• If you are a bereaved person, what is out there for you?

• Explore 3 kinds of sites:

– Inheritance

– Remembrance

– Social support

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Dealing with Inheritance

• http://www.entrustet.com

– http://www.youtube.com/watch?v=L7ZtOjDonUs&feature=player_embedded#!

• http://www.assetlock.net

• MyWebWill – Swedish, last Facebook update, last twitter

• http://www.deathswitch.com

• http://www.legacylocker.com

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Remembering the Deceased

• Religious:– http://www.christianmemorials.com/

• Pets:– http://www.petloss.com

• http://www.lifestrand.net

• Facebook– Groups:

http://www.facebook.com/group.php?gid=22639421199

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Social Support

• http://www.bereavementuk.co.uk

• http://www.onlinegriefsupport.com

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How to incorporate into your practice

• May be useful resources for grieving people

– One way to mourn or express grief

– Available any time of day, peer-supported

– Many sites available, tailored to particular needs

• However, ensure you are recommending an appropriate website

– E.g., religious reasons, type of loss

– Possibility of malicious “lurkers”

– Empirical evidence missing48

“Offline” activities

• Organizing, creating, and storing meaningful data

• Art-therapy based interventions

– Developing DVDs or stories

– Writing and journaling ( blogging)

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FUTURE DIRECTIONSPart 3

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Multimedia Life Stories

• “Lifelogging” – collecting data throughout a life, for purposes of finding patterns or review

• “Afterlifelogging” – using these collections of data as sources of reminiscing

• Multimedia life biographies

– E.g. SenseCam biographies

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Digitally-Augmented Ritual

http://www.flickr.com/photos/ericlitman/837639829/

• Virtual gravestones

• More incorporation into memorial services

• Think about burden this puts on the bereaved

Digitally-augmented objects

• Continued presence in the home through electronics like photo frames

• TimeCard (Microsoft Research UK): mms://wm.microsoft.com/ms/research/MSRC/eitr/Timecard.wmv

• Family Archive (Microsoft Research UK): http://www.youtube.com/watch?v=3OC2C142lF8

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Opportunities in Palliative Care

• Current project with Princess Margaret Hospital Psychosocial Oncology

• Understanding family communication needs during palliative care

• Developing touch-screen communication portal for families in palliative care ward

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Virtual Continuing Bonds

• Digital agency of the dead

– Continuing to “act” despitedeath

• Example in popular media: Caprica

– http://www.youtube.com/watch?v=sQlhlHwXjj0

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Discussion

• Where do you see technology going in the next 10 to 20 years?

• How will issues of death, dying, and mortality be implicated?

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Conclusion

• Discussed how technology is growing as a part of the end of life field

• Experienced some early design activities

• Showed some websites and assets for the bereaved

• Suggested some directions for the field/growth

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“When a person is born we rejoice, and when they're married we jubilate, but when they

die we try to pretend nothing has happened.” – Margaret Mead

Michael Massimimikem@dgp.toronto.edu

Thank you!