Using Facebook for Social Networking after Acquired Brain Injury (CAOT 2011)


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  • We are occupational therapy students from the University of Alberta who participated in a Web 2.0 online technology module that continued into a volunteering role at the Edmonton Brain Injury Relearning Society.
  • This project is part of a larger participatory action research project for people with acquired brain injury (ABI). This method of study is used to empower people with ABI and help them realize their actions have influence in the social world thus situating them in the community (Cockburn & Trentham, 2002).  The participants are partners with the researchers in the research process. Participatory Action Research is aligned with Occupational Therapy as it values participant collaboration for meaningful research outcomes. From the previous course on blogging, feedback from participants showed an interest in learning how to use Facebook to interact with their friends and family.
  • Many research studies have demonstrated the importance of social connections for everyone Social support: psychological benefits, discourage negative behaviours, encourage positive behaviours
  • - Define social network: social ties that allow individuals to associate with each other and become active participants - Do not have as many meaningful relationships with friends, acquaintances and co-workers
  • Smaller social networks means a risk of reduced social support and meaningful friendships. Persons with ABI have problems making new social connections They are at higher risk for developing anxiety or depression
  • Personality change, aggression, impulsivity, are all components of acquired brain injury that can impact their social relationships How other people respond to the injury may also affect their relationships The gradual change of social networks over time due to the loss of a job or completion of education
  • Define social network Maintain social support (e.g. online support groups) Personal connections (e.g. emailing family members), even if they are far away
  • The internet opens up new venues for social interaction. It allows for the opportunity to create new ties with individuals with similar interests or backgrounds, forming a sense of an on-line community Accessibility Not dependent Disability
  • Literature shows that there is a gap between those who use internet technology and those who do not, this is referred to as a digital divide.    People who have disabilities, such as ABI, are less likely to be connected to the internet then those who are non-disabled.  This emergence of this divide may occur because the internet is not necessarily inclusive, acceptable and/or available to people who have acquired brain injury.
  • The internet presents some risks for persons with ABI. Sharing of personal information could result in loss of privacy, from photographs, phone numbers, to credit card data. With the use of Facebook, there is also a risk of contact with unknown persons. This could come in the form of an online predator or in the form of an individual who bears the same name as a friend that the user is seeking. Individuals with Acquired Brain Injury are more susceptible to these risks because of their personal difficulties that they have with general internet use Remembering  passwords or leaving open pages unattended   Forgetting procedures (how to login) Decision making   Awareness of potential problem s Impulsive responding (ads or links)
  • That leads us to the question: "Given the risks involved with individuals with ABI when they access the internet, can a person with a ABI use online technology to enhance social connections?"  - There are studies that teach persons with ABI how to use internet and email, and shows that this is indeed possible. - Participants who had never used the internet prior to the study reported that email became their primary mode of communication and significantly increased their sense of social connectedness.     - We will draw on previous research to design our program
  • What does occupational therapy have to do with the use of computers? Computers are now part of every day life In order to ensure that people with disabilities are not getting left behind, occupational therapists are well-equipped to address the gap by using problem solving strategies that will allow the safe use of computers and the internet. Community internet courses are not enough. Instructors are not trained to teach persons with ABI to resolve difficulties and often misunderstandings & misconceptions about their disability
  • Important considerations: Does the need to use Facebook outweigh the risks that are involved with the use of Facebook with a vulnerable population? Can we identify and manage the risks? What role can occupational therapists play in this area? What barriers exist for successful learning for this population? How do we plan a program that will address the risks and barriers?
  • - Facebook provides the opportunity for communication by having access to pages created by friends and family, ability to instant chat with friends, share photos and play games
  • - Conducted a literature review, we found that there were several barriers present in the use of Facebook for persons with ABI. - We addressed the barriers in our course design and as they came up during the class.
  • A model developed by Martelli et al. (2008) to address learning and relearning problems for people with ABI Three components used in rehabilitation: Planning: Perform task analysis and break down tasks into simple steps, promote errorless learning Practice: provide practice opportunities, immediate feedback Positive attitude: negative emotions lead to anger and frustration, encourage meaningful tasks and promote positive environment for learning by supporting small successes
  • We worked together with EBIRS, which already has established computer courses for persons with ABI and a computer lab with which to teach the students. - Give time for hunt and peck typing
  • We worked together with EBIRS, which already has established computer courses for persons with ABI and a computer lab with which to teach the students. - Give time for hunt and peck typing
  • Classes are conducted with a projector so participants can follow along with each step and immediately get the feedback from trying out the steps. Tasks are broken down into smaller steps (e.g. press a button) so that the content is not overwhelming
  • We provided a manual with the task breakdown for each step that is involved with using Facebook. Steps are accompanied by screen shots so that participants will know where to click and type Summary sheets are provided for tasks used most often: e.g. how to sign on to Facebook Repetition and practice are often used in the course. There are often multiple ways of completing tasks on Facebook, but the same steps are used each practice time. - Participant feedback to find what they want to learn for the lessons to be personally relevant and meaningful - Made an EBIRS facebook profile for immediate feedback of adding a friend and writing on someone’s wall. Also encouraged participant interaction by adding other participants to their own Facebooks.    
  • - Summary sheets are provided for tasks used most often: e.g. how to sign on to Facebook Repetition and practice are often used in the course. There are often multiple ways of completing tasks on Facebook, but the same steps are used each practice time. - Participant feedback to find what they want to learn for the lessons to be personally relevant and meaningful - Made an EBIRS facebook profile for immediate feedback of adding a friend and writing on someone’s wall. Also encouraged participant interaction by adding other participants to their own Facebooks.    
  • We provided a manual with the task breakdown for each step that is involved with using Facebook. Steps are accompanied by screen shots so that participants will know where to click and type Summary sheets are provided for tasks used most often: e.g. how to sign on to Facebook Repetition and practice are often used in the course. There are often multiple ways of completing tasks on Facebook, but the same steps are used each practice time. - Participant feedback to find what they want to learn for the lessons to be personally relevant and meaningful - Made an EBIRS facebook profile for immediate feedback of adding a friend and writing on someone’s wall. Also encouraged participant interaction by adding other participants to their own Facebooks.    
  • In facebook there are multiple and often overlapping steps for many activites (such as adding friends or uploading photos) Participants can become frustrated due to the number of steps. Could be overwhelming and result in negative emotions that hinder learning. Small class size allowed us to teach and interact, provide one on one feedback that is specific to each participant Step by step instruction and guided demonstration is helpful here too in addressing this problem, following the HHR model. -The majority of other difficulties include technical difficulties - slow internet connections, problem browsers. Address them as they came up, difficult to control for.
  • - Teach participants how to change privacy settings Reminders of logging out of Facebook after class is done Reminders not to share personal information such as addresses and phone numbers online - Reminders to log-out of Facebook
  • - Persons with ABI experience physical and mental fatigue - Planned breaks for mental rest and washroom Upgrade web browsers so that Facebook can be viewed full screen, adjusted font sizes so that the visual strain is not too much Allowed participants to proceed at their own pace and request breaks when needed
  • Each class involves a review.  The class is structured with a projector while signed in to the instructor and a virtual student Facebook account, so participants can follow along on the screen exactly what buttons to click and what links to follow.
  • - Older group of participants who may not have grown up using computers. (William does not have an e-mail account, but was keen on learning more about computers) - The younger participants Emily and Sherry appear to be more comfortable and confident in their use of online technology than the older participants.  Example: Maureen wanted to know how to transfer photos from her phone to her Facebook and states that "her son can do it" and called her son for help. - Introduce Sarah: Discuss outcomes of program, which we have now completed.
  • During the evaluation two separate students, not involved in the teaching of the course conducted Pre and post interviews, then a follow up interview 10 weeks after the course.
  • Data analysis was completed by our team of researchers. The transcribed interviews were coded to the identified pre-determined themes and information that did not fit into the existing themes was categorized as an emerging theme.
  • Participants were motivated for a variety of personal reasons, all participants wanted to increase social connections either with friends, family or other people that they were able to meet. Another motivation was to learn new skills – Sherry commented that she wanted to take this course to learn more about security and online safety. Another motivation was to help combat boredom, or to “kill time” as Emily stated, another participant also commented on wanting to “kill time” Throughout teaching the course, Judy and I did notice that the participants were highly motivated to learn how to share YouTube videos on their Facebook pages. Everyone in the class shared their favorite type of music.
  • Through out the course, participants increased their Facebook skills which included: writing on walls, finding friends, sending and posting messages and uploading photos. Participants also became more aware of the safety features that are available to Facebook users – such as blocking friends and hiding your profile. Previous computer use and comfort was an asset in learning these new skills. *All participants had previously taken additional computer course offered through EBIRS prior to taking the Facebook course. During the course it was also apparent that Brain Injury presented with many barriers to learning and maintaining these new skills, learning difficulties and memory problems made it challenging for participants to remember more complex tasks – such as uploading photo’s and remembering their passwords to access online accounts.
  • Participants reported that the teaching style helped increase confidence and learn new skills I think the most important lesson I learned is to not pretend that you know everything or have all the correct answers. Now I would consider myself pretty skilled at using all the functions of Facebook – but I will tell you the truth, I have never uploading a picture using my cell phone. It happened one class a participants wanted to learn how to take photos from her cell phone and upload them. I had no idea how to do that, and neither did Judy. I tried to work with the participant one-on-one to figure it out – but we were not having the best of luck – so I facebooked one of my friends who has uploaded photos and asked her is she would kindly guide us through the process. It was also apparent that reviewing the concepts learned in the previous class, one-to-one tutoring, time to practice and flexibility were very important aspects of the course. Reviewing and time to practice allowed for increased repetition and structured practice to learn the new skills. Flexibility allowed us to teach that participants what they wanted to learn and made the course more personally relevant. Some participants in the class worked best with one-to-one guidance through a new task to ensure that proper learning could occur. Throughout the teaching we tried too positively reinforce these skills!
  • Some participants were not as concerned about the risks of using online technologies as others – participants learned to how to block people from their accounts, how to check or send a message to someone who requested to be there friend, and how to always “sign out” following the class. Exposure to additional risks identified included how to handle spam, pop-ups, and remembering passwords to access accounts.
  • Using Facebook participants made connections to friends and family. For example Sherry communicated with family from her home country and has used facebook to plan reunions; another participant, Maureen, connected with a past friend who now lives in Germany. Hanna has used Facebook to connect with family in a more passive manner. She has connected with them through observation of their pictures and ongoing posts – but has not yet communicated with any of them, similarly Maureen states that she is able to stay connected with people everyday because she is able to see what they are doing on facebook. But it is important to recognize that seeing other peoples lives can be upsetting. You may realize that you are missing out on certain events or that you may not have has much to do in a day compared the next person.
  • Through reviewing the transcripts we noticed that sometimes looking at other peoples lives could be a little “in your face” and we called that “in your face-book”. (pause). Some participants felt less connected when they were able to see what all their friends and family were doing. Emily shared, “It kind of made me realize how distant I am, Like I’ll ummm, because I said, most people don’t want to talk to me on Facebook” Hanna also shared, “I don’t have anything to talk to people about” The emergent theme of “disconnections” became apparent.
  • Additional emergent themes included having essential starting points, including basic computer skills, basic social skills – conversation appropriateness, computer and internet access, and an online social network – even if it is just 5 people. EBIRS runs introduction to computer skills, typing skills, e-mail and internet browsing courses. Prior to taking the Facebook course, most participants took part in the aforementioned courses that provided them with the essential starting points for participation in the Facebook course. All the participants in the class at home computers and access to the internet, which is different from the general brain injury population – In a consumer survey completed by Vaccaro et al, found that only 2/3 have computers and half have internet access. EBIRS has done an incredible job overcoming the access barrier faced by those with brain injury in edmonton.
  • During the course we followed the Holistic Habit Retraining principles that Judy mentioned in the introduction to this presentation - we tried to incorporate the elements of planning, practise, and positive attitudes. However we could not control for how the participants home and community supports could impact their learning. For example – Sherry’s son has helped her with using Facebook but does not provide the appropriate guidance that’s she needs to learn to the new skills. She also stated in class that her son is impatient and would end up doing it for her.
  • Secondly, Holistic Habit Retraining model states that one can facilitate positive experiences and reinforce small changes by combating negative attitudes and self-talk. Throughout teaching the course and within the transcripts we noticed that negative self-talk was apparent in some of the participants. As exemplified by Emily quotes as seen above, Maureen also stated that she was fearful that nobody would respond to messages if she sent them. This concept is further discussed in the manuscript written for publication.
  • In Summary - We reconfirmed that those living in ABI have specific barriers and challenges to using online social networks – such as access, cognitive deficits, physical challenges, and social skills. We identified that some essential started points are needed for success while using online social networking sites – such as computer skills, access, social skills and an online social community. Education and support for family is needed to increase understanding of the Holistic Habit Retraining principles of Planning, Practice and positive attitudes. This would allow participants to practice these principles at home and continue to solidify the skills learned in class in hopes that using Facebook would become “habit” Finally, the concept described as “IN YOUR FACEBOOK” illustrated that their could be potential negative aspects of using online social networks to connect with family and friends. ****We believe that these identified key messages can be applied to other populations such as seniors, at risk youth, and those with mental illness – which also have their own barriers and challenges to using online technologies. ***Anita or Judy – do you have a really good summary statement??????
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  • Zencius, A.H, & Wesolowski, M.D. (1999). Is the social network analysis necessary in the rehabilitation of individuals with head injury? Brain Injury, 13 (9), 723-727.
  • Using Facebook for Social Networking after Acquired Brain Injury (CAOT 2011)

    1. 1. Re-connecting: Using Facebook for Social Networking after an Acquired Brain Injury Judy Lin, Sarah Langenhoff, Anita Hamilton, Lily Ma , Erika Bannert,& Nicole Anstey.
    2. 2. Participatory Action Research Participatory Action Research is aligned with occupational therapy as it values participant collaboration for meaningful research outcomes. (Cockburn & Trentham, 2002)
    3. 3. ABI Population <ul><li>Acquired brain injury affects approximately 10 million people worldwide </li></ul><ul><li>Caused by MVAs, falls, medical illnesses </li></ul><ul><li>A ‘hidden disability’ </li></ul><ul><li>Cognitive and behavioural changes </li></ul>(Hyder et al., 2007)
    4. 4. Importance of social connections <ul><li>Benefits on health and well-being </li></ul><ul><li>Access to social support </li></ul><ul><li>Provides meaning and fulfillment to everyday lives </li></ul>(Ashida & Heaney, 2008; Kawachii& Berkman, 2001; Obst & Stafurik, 2010; Pescosolido, 2011)
    5. 5. How ABI Affects Social Networks <ul><li>Reduced size of social networks post-injury </li></ul><ul><li>Lower satisfaction with level of support received </li></ul><ul><li>Limited to family members & service providers </li></ul>(Finset et al. , 1995; Stalnacke, 2007; Zencius & Wesolowski, 1999)
    6. 6. Why is this a problem? <ul><li>Risk of reduced social support and meaningful friendships </li></ul><ul><li>Problems making new social connections </li></ul><ul><li>High risk for anxiety and depression </li></ul>(Conneeley, 2002; Morton & Wehman, 1995)
    7. 7. Why is this happening? <ul><li>Due to impairment (e.g. personality change) </li></ul><ul><li>Response of others </li></ul><ul><li>Natural change of social networks </li></ul>(Conneeley, 2002)
    8. 8. Using the Internet to Improve Social Connections <ul><li>Maintain social support </li></ul><ul><li>Establish personal connections </li></ul><ul><li>Adds to current social network </li></ul><ul><ul><li>Decreases social isolation and improves community reintegration </li></ul></ul>(Heaney & Israel, 2002; Rauch &Ferry, 2001) (Wikimedia Commons, 2011)
    9. 9. What are the benefits? <ul><li>A new practice of social interaction </li></ul><ul><li>Source of information and knowledge </li></ul><ul><li>Accessible at anytime of day </li></ul><ul><li>Not dependent on community program </li></ul><ul><li>Do not have to reveal disability </li></ul>(Bache & Derwent, 2008; Ballantyne et al. , 2010; Fokeema & Knipscheer, 2007; Vaccarro et al., 2007)
    10. 10. <ul><ul><li>Cyberspace is not universally accessible </li></ul></ul><ul><ul><li>Physical, cognitive and technological barriers </li></ul></ul><ul><ul><li>Problem is not lack of desire to use the internet, but lack of knowledge and access </li></ul></ul>The emerging digital divide  (Egan, Worrall & Oxenham, 2005; Fok et al., 2009; Vaccarro, 2007)
    11. 11. What are the risks? <ul><ul><li>Privacy: loss of personal and financial data </li></ul></ul><ul><ul><li>Online predators </li></ul></ul><ul><ul><li>Exposure to unknown people </li></ul></ul><ul><ul><li>Inappropriate social contact </li></ul></ul><ul><ul><li>Personal Difficulties     </li></ul></ul><ul><li>  </li></ul>(Boyd & Ellison, 2007 ; Houghton & Joinson, 2010; Hoadley et al., 2010)
    12. 12. <ul><ul><li>Internet training for individuals with ABI: </li></ul></ul><ul><ul><ul><li>Moderate to high levels of independence achieved in internet use    </li></ul></ul></ul><ul><ul><ul><li>Increased social connectedness </li></ul></ul></ul>Overcoming the digital divide (Egan, Worrall & Oxenham, 2005; Sohlberg et al., 2005) (Wikimedia Commons, 2011)
    13. 13. OT and Digital Divide <ul><ul><li>Computer and internet use is now an important and relevant ADL </li></ul></ul><ul><ul><li>Growing digital divide </li></ul></ul><ul><ul><ul><li>Community education courses are not enough </li></ul></ul></ul><ul><ul><ul><li>Training required </li></ul></ul></ul>(Egan et al., 2005)
    14. 14. Identify
    15. 15. Facebook <ul><ul><li>Social networking website </li></ul></ul><ul><ul><li>500 million users </li></ul></ul><ul><ul><li>More than 70 translations </li></ul></ul><ul><ul><li>Interact with others, share content with others, play games </li></ul></ul>(Facebook, 2011)
    16. 16. Barriers <ul><li>Access to computer and internet </li></ul><ul><li>Motor deficits using keyboard and mouse </li></ul><ul><li>Cognitive impairment </li></ul><ul><li>Challenging social interactions </li></ul><ul><li>Fatigue </li></ul>(Todis et al., 2005; Fox et al., 2009)
    17. 17. Plan
    18. 18. Model <ul><li>Holistic Habit Retraining (HHR) </li></ul><ul><ul><li>Plan </li></ul></ul><ul><ul><ul><li>Task analysis and breakdown </li></ul></ul></ul><ul><ul><li>Practice </li></ul></ul><ul><ul><ul><li>Repetition </li></ul></ul></ul><ul><ul><li>Positive Attitude </li></ul></ul><ul><ul><ul><li>Address negative emotions </li></ul></ul></ul>(Martelli, Nicholson & Zasler, 2008)
    19. 19. Addressing Barriers <ul><li>Barrier 1: Access to computers and the internet </li></ul><ul><ul><li>Financial considerations </li></ul></ul><ul><ul><li>Problems with public access </li></ul></ul><ul><li>Solution: </li></ul><ul><ul><li>Community partner: EBIRS </li></ul></ul>(Fox et al., 2009)
    20. 20. Addressing Barriers <ul><li>Barrier 2: Motor Deficits </li></ul><ul><ul><li>Problems typing on a regular </li></ul></ul><ul><ul><li>keyboard </li></ul></ul><ul><li>Solution: </li></ul><ul><ul><li>Allow them to choose workstation </li></ul></ul><ul><ul><li>Provide access to one-handed keyboard </li></ul></ul>(Wikimedia Commons, 2011)
    21. 21. Addressing Barriers <ul><li>Barrier 3: Cognitive Impairments </li></ul><ul><ul><li>Attention </li></ul></ul><ul><ul><li>Memory </li></ul></ul><ul><ul><li>Frustration & Negativity </li></ul></ul>(Conneeley, 2002)
    22. 22. Attention <ul><ul><li>In-class demonstrations </li></ul></ul><ul><ul><li>Immediate feedback </li></ul></ul><ul><ul><li>Practice opportunities </li></ul></ul><ul><ul><li>Step-by-step instruction </li></ul></ul>(Wikimedia Commons, 2011)
    23. 23. Memory <ul><ul><li>Manual for at home practice </li></ul></ul><ul><ul><li>Supplemental illustrations </li></ul></ul>
    24. 24. Memory <ul><ul><li>Summary sheets </li></ul></ul><ul><ul><li>Repetition </li></ul></ul><ul><ul><li>Personal relevance </li></ul></ul>(Wikimedia Commons, 2011)
    25. 25. EBIRS Facebook Profile <ul><ul><li>INSERT IMAGE HERE </li></ul></ul>
    26. 26. Managing Frustration <ul><ul><li>Small class size </li></ul></ul><ul><ul><li>Step by step approach to teaching </li></ul></ul><ul><ul><li>Guided practice </li></ul></ul><ul><ul><li>Review with one to one assistance </li></ul></ul><ul><ul><li>Technical Difficulties </li></ul></ul>
    27. 27. Managing Risks <ul><li>Barrier 4: Challenging Social Interactions </li></ul><ul><ul><li>Privacy </li></ul></ul><ul><ul><li>Interacting with strangers and friends </li></ul></ul><ul><ul><li>Inappropriate social contact </li></ul></ul>(Conneeley, 2002; Heaney & Israel, 2002)
    28. 28. Managing Risks: Privacy <ul><li>Changing privacy settings </li></ul><ul><li>Logging out of Facebook </li></ul><ul><li>Sharing personal information </li></ul>(Wikimedia Commons, 2011)
    29. 29. Managing Risks: Inappropriate Social Contact <ul><li>Participants to reflect and consider: </li></ul><ul><ul><li>- How well do I know this person? </li></ul></ul><ul><ul><li>- Do I want to share this with this person? </li></ul></ul><ul><ul><li>- Do I remember that if I post on their wall, the information is shown to all of my friends and their friends? </li></ul></ul>
    30. 30. Managing Fatigue <ul><ul><li>Planned breaks </li></ul></ul><ul><ul><li>Upgrade web browsers </li></ul></ul><ul><ul><ul><li>-Full screen view </li></ul></ul></ul><ul><ul><ul><li>-Font sizes </li></ul></ul></ul><ul><ul><li>Proceed at their own pace </li></ul></ul>(Wikimedia Commons, 2011)
    31. 31. Implementation
    32. 32. Overview of the course <ul><ul><li>Five sessions of 2 hours </li></ul></ul><ul><ul><li>Focus on online privacy and safety </li></ul></ul><ul><ul><li>Class 1: Finding Friends, Updating Privacy, Writing on Walls </li></ul></ul><ul><ul><li>Class 2: Status Update, Posting Links, Sharing Photos </li></ul></ul><ul><ul><li>Class 3: Tagging Photos, Joining Groups, Likes & Dislikes </li></ul></ul><ul><ul><li>Class 4: Sending Messages, Blocking, Participant's Choice </li></ul></ul><ul><ul><li>Class 5: Review </li></ul></ul>
    33. 33. Our participants 1.  Sherry, female, 40-45 2.  Emily, female, 28-32 3.  Maureen, female, 50-55 4.  Hanna, female, 50-55 5.  William, male, 55-60* *Chose not to participate in interviews All names changed to protect identity
    34. 34. Evaluation
    35. 35. Findings <ul><li>Coded using a set of pre-determined themes: </li></ul><ul><ul><ul><li>-Motivation -Skills -Teaching -Risk -Connection </li></ul></ul></ul><ul><li>Emergent themes </li></ul>
    36. 36. Motivation <ul><li>Increase Social Connections </li></ul><ul><li>Learn New Skills </li></ul><ul><li>Combat Boredom </li></ul>“ I don’t know about feeling connected to other people but it definitely helps to kill time.” (Emily) “ ...I’m really interested with the Facebook I hope, and yeah, I’m really hoping that I will be learning more like, uhh, for security reasons also”. (Sherry)
    37. 37. Skills <ul><li>Increased Facebook Skills </li></ul><ul><li>Increased Safety Awareness </li></ul>“ I learnt this but I can’t remember it” (Maureen) <ul><li>Barriers to Skill Development </li></ul>“ ...if you don’t want someone to view your profile or whatsoever then you can block them and you can edit and only choose the people that you want to view your profile” (Sherry)
    38. 38. Teaching <ul><li>Teaching Increased Confidence </li></ul><ul><li>Time to Review and Practise </li></ul><ul><li>Flexibility </li></ul>“ Yeah, very knowledgeable. But actually, they didn’t know something and they went and asked people a-at their wherever they lived or-a-at their school or whatever and come back and said this is how you do it. So you know they are very knowledgeable” (Maureen)
    39. 39. Risk <ul><li>Decreased Risk </li></ul><ul><li>Exposure to Additional Risks </li></ul>“ I don’t know cause I seem to have two different passwords. I don’t know which one’s right”. (Hanna) “… I'm really uh really glad and happy with what they teach us there at EBIRS. How to like to protect your uh go to your account and protect your privacy and then if you don't want somebody to access your profile like that you can they teach us that there at EBIRS. So I'm glad that I learned those things because before I only know how to open my profile”. (Sherry)
    40. 40. Connections “ had connected [on Facebook] with some people that are family and friends, but I haven’t communicated with them” she further stated, “it will, it will, but it hasn’t yet”. (Hanna) “… then when I have this Facebook and I communicate with them I feel more happy and it's like satisfaction.“ (Sherry) “ Like I’ll put some comment and people will be like writing me things like ‘this doesn’t sound good, what’s wrong…it’s nice to know they care; they just want to know what is going on”. (Emily) ”… I see those people every day on my Facebook, because I look at my Facebook everyday and I see what their doing everyday”. (Maureen)
    41. 41. Disconnections “ It kind of made me realize how distant I am, like I’ll umm, because like I said, most people don’t want to talk to me on Facebook, so…” (Emily) “ I don’t have anything to talk to people about.” (Hanna) “ For me talking to people on the computer, typing to them is not the same as face to face.” (Emily)
    42. 42. Emergent Themes <ul><li>Essential starting points for success </li></ul><ul><li>-Basic Computer Skills -Basic Social Skills </li></ul><ul><li>-Computer & Internet Access -Online Social Network </li></ul>“ 2/3 of people with brain injury have computer access, only one half of those have access to the internet” (Vaccaro, Hart, Whyte and Buchhofer, 2007)
    43. 43. <ul><li>Support during Program vs. Support at home/community </li></ul>&quot;…especially when I attended this class…just like I told you it's very important that my son never has chance to tell me or to teach me how to do like uh…like for safety ”.  (Sherry) Emergent Themes
    44. 44. Emergent Themes <ul><li>Negative Self-Talk </li></ul>“ people don’t seem to want to talk to me on Facebook” (Emily) “ I don’t get a lot of pictures of me…I am just not interested…nobody wants to look at me.” (Emily – referring to uploading pictures)
    45. 45. In summary <ul><ul><li>Reconfirmed that persons with ABI have specific barriers and challenges to using online social networks. </li></ul></ul><ul><ul><li>Essential starting points needed for success: </li></ul></ul><ul><ul><ul><li>basic computing skills </li></ul></ul></ul><ul><ul><ul><li>computer/internet access </li></ul></ul></ul><ul><ul><ul><li>basic social skills </li></ul></ul></ul><ul><ul><ul><li>social network using online technology </li></ul></ul></ul><ul><ul><li>Education and support for the family by agencies to increase understanding of Holistic Habit Retraining. </li></ul></ul><ul><ul><li>Concept described as “In your Face-book” illustrates the potential negative aspects. </li></ul></ul>
    46. 46. Now What… <ul><li>Keep the cycle going building on lessons learned so far </li></ul><ul><li>Use the holistic habit retraining model for development of next course </li></ul><ul><li>Next computer course: </li></ul><ul><ul><li>Skype </li></ul></ul><ul><ul><li>Online games </li></ul></ul><ul><li>Investigate options for providing education and support for families based on Holistic Habit Retraining Model </li></ul>
    47. 47. Questions and contact details Please feel free to contact us for further information, we will be happy to share our resources with you. Anita Hamilton: [email_address]
    48. 48. References and Resources <ul><ul><li>Ashida, S. & Heaney, C.A. (2008). Differential associations of social support and social connectedness with structural features of social networks and the health status of older adults. Journal of Aging and Health, 20, 872. </li></ul></ul><ul><ul><li>Bache, J. & Derwent, G. (2008). Access to computer-based leisure for individuals with profound disabilities. NeuroRehabilitation, 23, 343-350. </li></ul></ul><ul><ul><li>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. </li></ul></ul><ul><ul><li>Ballantyne, A., Trenwith, L., Zubrinich, S. & Corlis, M. (2010). ‘I feel less lonely’: what older people say about participating in a social networking website. Quality of Ageing and Older Adults, 11(3), 25-35. </li></ul></ul><ul><ul><li>Boyd, D. M., & Ellison, N. B.(2007). Social network sites: Definition, history and scholarship. Journal of Computer-Mediated Communication, 13(1), 210–230 </li></ul></ul><ul><ul><li>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. </li></ul></ul><ul><ul><li>Conneeley, A.L. (2002). Social Integration following Traumatic Brain Injury and Rehabilitation, British Journal of Occupational Therapy, 65 (8), 356-362. </li></ul></ul>
    49. 49. References and Resources <ul><ul><li>Crisp, R. (1994). Social reintegration after traumatic brain impairment: A qualitative analysis. Journal of Applied Rehabilitation Counselling, 25, 16-21. </li></ul></ul><ul><ul><li>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 </li></ul></ul><ul><ul><li>Finset A, Drynes S, Krogstad JM, Berstad J (1995) Self-report social networks and interpersonal support two years after severe traumatic brain injury. Brain Injury, 9(2), 141-50. </li></ul></ul><ul><ul><li>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. </li></ul></ul><ul><ul><li>Fokkema, T. & Knipscheer, K. (2007). Escape loneliness by going digital: A quantitative and qualitative evaluation of a Dutch experiment in using ECT to overcome loneliness among older adults. Aging & Mental Health, 11(5), 496-504. </li></ul></ul><ul><ul><li>Fox, L.E., Sohlberg, M.M., Fickas, S., Lemoncello, R. & Prideaux, J. (2009). Public computering options for individuals with cognitive impairment: Survey outcomes. Disability and Rehabilitation: Assistive Technology, 4(5), 311-320. </li></ul></ul>
    50. 50. References and Resources <ul><ul><li>Heaney, C. A., & Israel, B. A. (2002). Social networks and social support. In K. Glanz, B. K. Rimer, & F. M. Lewis (Eds.), Health behavior and health education: Theory, research, and practice (3rd ed., pp. 185-209). San Francisco: Jossey-Bass. </li></ul></ul><ul><ul><li>Hoadley, C.m., Xu, H., Lee, J.J. & Rosson, M.B. (2010). Privacy as information access and illusory control: The case of the Facebook News Feed privacy outcry. Electronic Commerce Research and Applications, 9, 50-60. </li></ul></ul><ul><ul><li>Houghton, D.J. & Joinson, A.N. (2010). Privacy, social network sites, and social relations. Journal of Technology in Human Services, 28, 74-94. </li></ul></ul><ul><ul><li>Hyder, A.A., Wunderlich, C.A., Puvanachandra, P., Gururaj, G. & Kobusingye, O.C. (2007). The impact of traumatic brain injuries: a global perspective. NeuroRehabilitation, 22, 341-353. </li></ul></ul><ul><ul><li>Kawachi, I. & Berkman, L.F. (2001). Social ties and mental health. Journal of Urban Health: Bulletin of the New York Academy of Medicine, 78(3), 458-467. </li></ul></ul><ul><ul><li>Pennebaker, J.W. (1990). Opening up: The healing power of expressing emotions. New York: The Guilford Press. </li></ul></ul>
    51. 51. References and Resources <ul><ul><li>Pescosolido, B. (2011). Social connectedness in health, morbidity and mortality, and health care – the contributions, limits and further potential of health and retirement study. Forum for Health Economics & Policy, 14 (3), Article 11. </li></ul></ul><ul><ul><li>Rauch, R.J. & Ferry, S.M. (2001). Social networks as support interventions following traumatic brain injury. Neurorehabilitation, 16, 11-16. </li></ul></ul><ul><ul><li>Roulstone, A. (1998). Enabling technology: Disabled people, work and new technology . Philadelphia, PA: Open University Press. </li></ul></ul><ul><ul><li>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. </li></ul></ul><ul><ul><li>Martelli, M.F., Nicholson, K., & Zasler, N.D. (2008). Skills reacquisition after acquired brain injury: A holistic habit retraining model of neurorehabilitation, NeuroRehabilitation, 23 , 115-126. </li></ul></ul>
    52. 52. References and Resources <ul><ul><li>Morton, M.V. & Wehman, P. (1995). Psychosocial and emotional sequelae of individuals with traumatic brain injury: a literature review and recommendations. Brain Injury, 9 (1), 81-92. </li></ul></ul><ul><ul><li>Obst, P. & Stafurik, J. (2010). Online we are all able bodied: online psychological sense of community and social support found through membership of disability-specific websites promotes well-being for people living with a physical disability. Journal of Community& Applied Social Psychology, 20, 525-531. </li></ul></ul><ul><ul><li>Suler, J. (2004). The Psychology of Cyberspace. Retrieved 05/20/2009 from </li></ul></ul><ul><ul><li>Stalnacke, B.M. (2007). Community integration, social support and life satisfaction in relation to symptoms 3 years after mild traumatic brain injury. Brain Injury, 21(9), 933-942. </li></ul></ul><ul><ul><li>Tan, L. (2008). Psychotherapy 2.0: MySpace blogging as self-therapy. American Journal of Psychotherapy, 62 (2), 143-16. </li></ul></ul>
    53. 53. References and Resources <ul><ul><li>Todis, B., Sohlberg, M.M., Hood, D. & Fickas, S. (2005). Making electronic mail accessible: Perspectives of people with cognitive impairments, caregivers and professionals. Brain Injury, 19(6), 389-401. </li></ul></ul><ul><ul><li>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. </li></ul></ul><ul><ul><li>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. </li></ul></ul><ul><ul><li>Vaccaro, M., Hart, T., Whyte, J., & Buchhofer, R. (2007). Internet use and interest among individuals with traumatic brain injury: A consumer survey. Disability and Rehabilitation: Assistive Technology. 2(2), 85-95. </li></ul></ul><ul><ul><li>Zencius, A.H, & Wesolowski, M.D. (1999). Is the social network analysis necessary in the rehabilitation of individuals with head injury? Brain Injury, 13 (9), 723-727. </li></ul></ul>