reconnecting becoming a blogger after abi

Re-connecting: Becoming a blogger after an acquired brain injury.

Anita Hamilton – Lily Ma – Lana Malinowski – Janet Marcelino

Participatory Action Research

Participatory Action Research is aligned with occupational therapy as it values participant collaboration for meaningful research outcomes.

(Cockburn & Trentham, 2002)

Identify

Individuals with brain injuries often face the challenge of integration in their communities (Egan, Worrall, & Oxenham, 2005)

Loneliness, depression, and social isolation have been reported as long-term mental health concerns in individuals with brain injuries (Crisp, 1994)

Barriers to occupational engagement

Web 2.0 addressing barriers

Web programs with a collaborative dimension (wikis, blogs, podcasts)

Blogs (weblogs) are online journals or filters for information

Single or collaborative authorship

Entries may include commentary and links

Entries archived in reverse chronological order

Putting feelings into words

Putting feelings into words alleviates emotional distress (Lieberman et al., 2007)

Blogging may facilitate “putting feelings into words” due to the “online disinhibition effect” (Suler, 2004)

Blogging can facilitate mental health benefits similar to those achieved through psychotherapy (Tan, 2008)

Blogging and health promotion

Blogging and Social Support

Recent studies also indicate the efficacy of blogging as a means of increasing social connectedness. (Egan, Worrall, & Oxenham, 2005; Baker et al., 2008)

Connecting individuals with chronic illness (Seeman, 2008)

Blogging and health promotion

Blogging and Social Support

Feelings of isolation can be relieved through uniting likeminded communities via blogging (Baker & Moore, 2008)

Health, goal-oriented blogging - support for individuals in a weight-loss program (Adams, 2007)

Cyberspace is not universally accessible (Fok et al., 2009)

Cognitive-linguistic barriers and technology design barriers can prevent individuals with TBI from accessing the internet (Egan, Worrall, & Oxenham, 2005)

“Digital literacy” disability (Fok et al., 2009)

Leveraging the benefits of blogging

Accessibility of Cyberspace (creating courses) Egan, Worrall, & Oxenham, 2005 Sohlberg et al., 2005

Internet training for individuals with ABI: Moderate to high levels of independence

achieved in internet use Increased social connectedness

Leveraging the benefits of blogging

Reduced Concentration

Small chunks of information

Described in manual

Demonstrated in class

Time to practise

Design Course: Account for impact of ABI

Memory loss

Manual

Summary sheet (laminated)

Linked steps

Lana’s blog for tips between class

Personal relevance


Increased Frustration

Step by step approach to teaching

Guided practise

Review steps

Network of bloggers


Physical limitations

Fatigue easily Plan breaks

Slow to move around (get to washroom etc) Offer assistance

One-handed typing Keyboard selection Workstation set up


Implementation

Overview of the course

Four sessions of 2 hours

Online privacy and safety

iGoogle: Personalized home page

Blogging: creating, commenting and following

Facebook: joining, personalizing, searching for contacts

Continual revision and refreshers

Evaluation

Our participants

Alison: female mid-40’s

Chris: male mid-20’s

Frank: male mid-40’s

Frasier: male early-40’s

Maureen: female mid-40’s

All names changed to protect identity

Approach to teaching

Facilitation

Class size 1:1 help as required

Flexible and individualized Staying to finish with

individuals Incorporating Facebook

Course resources

Manual

Laminated summary sheet

Lana’s blog for tips

Network of bloggers

“They’re probably the most easy-going people I’ve ever met” (Alison)

Approach to teaching

Content

Relevant

Interesting

Individualized

Next time

Speak a bit more slowly

More orientation to what a “blog” is

Give examples of blogs

Make manuals relevant to range of computers (e.g. for use at home)

“They taught us step by step” (Chris)

Computer skills

Skill level Negative self-perception

of skill level was detrimental to one participant’s enjoyment.

Skills translated between programs (e.g. blogging to Facebook)

Next time More even skill level in

class or one more volunteer to support.

“Myself, [I’m] very dumb, didn’t understand it all” (Maureen)

“But now with posting and copying and pasting… I feel a lot more comfortable” (Chris)

Physical barriers

Equipment

One handed typing is difficult and makes typing slow

Physical limitations

Next time

Equipment options

Computer station set up at course and at home

Typing skills course“Now that I only have one hand I find it very difficult to type…” (Alison)

“Yeah that’s another thing… I can’t sit that long, right!” (Chris)

Other barriers

Support

Reliable transport

Attitude of family

Access to a reliable and online computer

Passwords

Internet users require passwords to many sites: it is becoming overwhelming

“We have to have 10 or 12 different passwords…” (Frank)

“I don’t have high speed internet anymore so I haven’t been blogging at all.” (Alison)

Risks

“Junk” occupation

Gaming: “Junk” occupation… or recuperation?

Reliving trauma

Blogging can be traumatic to self or others if not facilitated

“I was into gaming crap and all that… I never should have been, it wasn’t a smart idea… I had to get a grip on my life… get back to the living… so I did, and it happened” (Frank)

“Yeah, as you can see, I didn’t have a great rate of survival… conservative dead 71%... It’s even less if you read on” (Alison)

Connecting

With each other

With old self

With friends and family

With information

Connecting with each other

“it was nice seeing everybody doing the same thing you know, just kind of being involved in a group” (Alison)

“… she had her skull removed and so did I” (Frasier)

“It was the first class… the first thing I actually went out and did on my own, it was good that way” (Alison)

Connecting with old self

“I got that job as a systems administrator when I first started there, and from there I moved into building computers, I built all the computers they used… and after that I started buying all the parts, so I was responsible for buying all the hardware and software for the company” (Frasier)

“…the last 16 years I've been in the computer industry it was in the supplies business not on the actually computers…” (Alison)

Connecting with friends and family

“I’ve gotten in touch with my daughter’s boyfriend through this and my brother… [who] I haven’t seen in two years… I talk to him on Facebook” (Maureen)

“I have a couple of friends that moved away and they have blogs and I'm connected to them through their blogs, so I know what they're up to” (Frasier)

“… everyone would be bitchin’ at me, coz I would never go on Facebook right, and so ever since I’ve been takin’ this class I’ve been going on there” (Chris)

Connecting with information

“…It is like having library access for me.” (Alison)

“…then I added weather to my iGoogle page… I always check gold… and the Canadian dollar… and there’s Vancouver Canucks… and two Oilers ones” (Chris)

“ Last night I got… a pattern for a sock… I thought that was fabulous” (Maureen)

Are these connections “real”?

“…it’s real because I know it’s him talking to me… just the way he’s talking…” (Maureen: about her brother)

“…like I have people that, you know from before that are, I would consider my friends, but I’ve never actually met them… you know everything about them…” (Frasier)

Participatory Action Research

… Identify new areas of need

Typing skills

Computer set-up & accessibility

Online security, passwords & banking

Blogging & Facebook

In summary

Safe and effective use Web 2.0 tools, like blogs and Facebook, are excellent ways enable people to connect with self, others and information.

Accessing the virtual world using a computer is now a mainstream activity of daily living & enhances feelings of connection & belonging.

Enabling people to access a computer and participate in the virtual environment is therefore part of our role as occupational therapists.

References Baker, J.R. & Moore, S.M. (2008). Blogging as a social tool: A

psychosocial examination of the effects of blogging. CyberPsychology & Behavior, 11, 747-749.

Cockburn, L. & Trentham, B. (2002). Participatory action research: Integrating community occupational therapy practice and research. The Canadian Journal of Occupational Therapy, 69(1), 20-30.

Crisp, R. (1994). Social reintegration after traumatic brain impairment: A qualitative analysis. Journal of Applied Rehabilitation Counselling, 25,16-21.

Egan, J., Worrall, L. & Oxenham, D. (2005). An internet training intervention for people with traumatic brain injury: Barriers and outcomes. Brain Injury, 19(8), 555-68.

References Fok, D., Polgar, J.M., Shaw, L., Luke, R., Mandich, A. (2009).

Cyberspace, real place: Thoughts on doing in contemporary occupations. Journal of Occupational Science, 16(1), 38-43.

Lieberman, M.D., Eisenberger, N.I., Crockett, M.J., Tom, S.M., Pfiefer, J.H., & Way, B.M. (2007). Putting Feelings Into Words: Affect Labeling Disrupts Amygdala Activity in Response to Affective Stimuli. Psychological Science, 18(5), 421-428.

Pennebaker, J.W. (1990). Opening up: The healing power of expressing emotions. New York: The Guilford Press.

Roulstone, A. (1998). Enabling technology: Disabled people, work and new technology. Philadelphia, PA: Open University Press.

References Suler, J. (2004). The Psychology of Cyberspace. Retrieved

05/20/2009 from http://wwwusr.rider.edu/~suler/psycyber/psycyber.html

Tan, L. (2008). Psychotherapy 2.0: MySpace blogging as self-therapy. American Journal of Psychotherapy, 62(2), 143-16

Williams, A.L.,& Merten, M.J. (2008). A review of online social networking profiles by adolescents: Implications for future research and intervention. Adolescence, 43(170), 253-274.

Ybarra, M.L. & Mitchell, K.J. (2009). How Risky Are Social Networking Sites? A Comparison of Places Online Where Youth Sexual Solicitation and Harassment Occurs. Pediatrics, 121, e350-e357.

Questions and contact details

Please feel free to contact us for further information, we will be happy to share our resources with you.

Anita: [email protected]

reconnecting becoming a blogger after abi

Technology