Tuesday 15 May 2012

The Internet and Online Communities

This entry will relate to spinal cord injury, as a practice area within Occupational Therapy. I plan to include three online communities within this post that relate to this practice area of OT.
I will include comments on each site address and relate to concepts as discussed in our Participation in Occupation 1 class. These are occupational justice, occupational disruption, occupational transition, occupational deprivation.


Traditional meaning of 'community' described by the Oxford English dictionary, is "a group of people living in the same place or having a particular characteristic in common" and the "people of a district or country consider collectively, especially in the context of social values and responsibilities; society" (Oxford Dictionary, 2012).
OK. So communities in the traditional sense, is within a group of people that share a common geographical location and share similar views and values. How has the internet changed this today? The internet has taken away the borders restricted by geographical location, therefore enabling users to connect with others - in cyber sense. For example, the communication of a New Zealander to an American living in Alaska- in an online spinal injury forum.


An online community is virtual, meaning it exists online; and whose members participate through taking part in its membership (Wikipedia, 2012). As discussed, the community is not a new concept, what is, is the transfer to the online world of the internet. Wikipedia (2012) states that a community was previously defined as a group from a single location, and, if you live within a particular area then you became a part of that community. Communication was achieved through face to face interaction and within a social setting, but in the online world, social interactions no longer have to be face to face or based on proximity, instead thy can be with literally anyone anywhere.  As a result, today, there are billions of online users on the internet. I am going to explore three different online communities that relate to Spinal Cord Injury.




http://www.spinal-injury.net/spinal-cord-injury.htm

The Spinal Injury Network site appears to be very a comprehensive and accessible site intended to be accessed by individuals with spinal injury or their family/ carer, or anyone interested in understanding spinal injury.
Ø  There is information regarding accessing the community, planning leisure and being out and about.
Ø  Spinal injury information, including levels of spinal injury, treatment, skin care and bowel management, sexuality, rehabilitation. Including books that are recommended to read.
Ø  Community: This area of the website includes online chat rooms, message boards, news letters and a guest book.
Ø  Fact-sheets. There appears to be many different fact sheets accessible within the site, that provide information on living with a spinal injury. These range from health related; leisure relate- such as tips for going on holiday, wheel chair seating, and using public transport; and further reading that is recommended.
Ø  Spinal cord injury research
Ø  Mobility- such as driving with a disability, choosing wheelchairs, and car adaptations
Ø  Leisure. This part of the site includes information regarding holidays and booking  accommodation, adaptive skiing, assistive dogs.

The site appears to be highly interactive, and includes an online chat room for people with spinal injury and paralysis; and an online forum. People can contribute to the online forum and until recently the guestbook. However the guestbook has been disabled due to "spam" and is currently in-active. The forum appears to be  in high use, with entries posted within the last day or so. The contributions range from introductions; discussions on both complete and incomplete injury; continence; carers; general spinal cord injury; and 'for sale'- which includes ski gear, wheelchairs, hoists and roho cushions.


I think people would choose to contribute to this online community because they can communicate with many other people in similar situations to themselves. Having a spinal injury would really make accessing some of this information difficult. A lot of the advice looks extremely helpful. I think that being part of the forums would improve peoples reconnecting with others and with the world. They users of the forums appear to be seeking information - a mother looking for advice to motivate her son, questions relating to sex- which I am sure would be a difficult topic to broach, general information regarding spinal cord injury, medication advice. The information is shared via messages that are attached to a subject within a forum topic. For example, "New Spinal Cord Injuries". Within this forum topic there are subjects or threads started by an individual forum member. The threads can be used as a conversation within them selves, or the user can simply state information that others can read.


Christopher & Dana Reeve Foundation - Today's Care. Tomorrow's Cure


http://www.spinalcordinjury-paralysis.org/app/render/go.aspx?xsl=tp_community.xslt


The Spinal Cord Injury and Paralysis Community is coordinated alongside the Christopher and Dana Reeve Foundation. It appears to be hugely informative and interactive.
I would say that the sight is designed for individuals with spinal injury first and foremost, their family, friends and carers- and anyone interested in the spinal injury and paralysis.
In terms of the sites' interactive-ness'- it looks really good! There is the option to join groups, create groups, create blogs, upload photos to share, and 'find others'. People can contribute within groups, or within discussions. Users can contribute by joining up to groups and opening threads in the discussion forum. The topics range from "tell us about yourself" to "Rehabilitation and recovery"- "New Paralysis" and "Care giving".


I think that users would choose to contribute to an online community because either they may be looking for information or support, or looking to communicate with other people that experience a spinal injury, or they may wish to share their journey or story with others.


New Zealand Spinal Trust Logo


The New Zealand Spinal Trust is a website set up for people with spinal cord injury, their families, friends, caregivers and health professionals (New Zealand Spinal Trust, 2012). 
I think that this website is the most comprehensive of the three web communities that I have looked at, in terms of the interactive options that the New Zealand Spinal Trust has developed.
The following is taken from the website:


We are continuing to build our database of people who have lived with and around SCI, so there is someone ready and willing to support and share no matter where you live.

This can be achieved through a variety of means.

 Online
 Facebook
 Email 
 Outings
 Meals
 Coffee 
 Recreational
 Activities
 Sport and entertainment
 Women’s and Men’s groups
 One on one connections 

http://www.nzspinaltrust.org.nz/connect_people.asp


Users of the Spinal Trust website can contribute in many ways, as seen in the list above. The aim is to enable users to connect with others both online and also within the greater community in where they live. "Connecting People aims to develop active networks in each region that will host regular get togethers and support all newcomers to their area, making them feel welcome and including them in these gatherings" (New Zealand Spinal Trust, 2012).


Occupational Transition: An occupational transition is described by Christianson and Townsend (2010) as a change in occupational roles and activities in which a person engages in change or are replaced by new ones. The transition can be expected, or unplanned, such as the change in occupations resulting from a spinal injury.
Occupational Deprivation refers to the inability of the individual to engage in meaningful and desired life occupations, as influenced by external factors (Amini, 2004). Deprivation may prevent an individual from acquiring, using or enjoying occupation over time.
In relation to the sites that I have included in this post: The Spinal Injury Network, Spinal Injury and Paralysis.org; and The New Zealand Spinal Trust, these sights directly relate to both of these concepts. Users of these websites may feel that they suffer from occupational deprivation, and may access this site to communicate with others in a similar situation. However these sites also provide an individual with a spinal injury,  information that they can apply to their own situation, in terms to learning how to live with spinal injury and transitioning into new occupations as a result. These include health: skin care, Transportation: wheelchair seating, and rehabilitation.


In terms of the potential ethical issues that may arise within the online communities, there could be a few. The site does require a user to register and to log in, and the online forum and chat only requires an alias or nick name, such as 'star123'. So this is good. But there is still the opportunity for people to meet online users that they think that they can trust- the site would not be able to monitor users that take advantage of other online users. As with any internet community, it pays to be really careful about what is disclosed, and not identifying oneself unless you feel comfortable. The New Zealand Spinal Trust has set up groups in different areas, this would be a safer way of meeting people in the community.


The material presented in the online forums would be hugely helpful in terms of ease of access, in communicating with others, and in accessing information. In regards to traditional geographical communities,  allowing users from any geographical location to access information, without worrying about having to drive, and not missing out due to living away from larger centres. It is sites like these that remind me how important the internet is today, and especially so for those of us that face living with a spinal injury. I suppose that the limitations of the first two sites would be that users are not engaging physically with others, as they may have done in more traditional communities. Although a user is interacting online with another, and even though that interaction is very necessary, being able to be with others physically is really important. The New Zealand Spinal Trust has taken this a step further, and encourages the users of the site to make use of activity groups and networks.
"Whether you have a Spinal Cord Injury (SCI) or you live around someone who does (family, friends, supporters), you could give your time and be prepared to offer support or answer the occasional question for someone new to life in or around SCI. Connecting with someone, either in person, on the phone or by email, who understands what it is like to be going through the experience can be invaluable" (The New Zealand Spinal Trust, 2012).

References:


Amini (2004). Occupational deprivation. Retrieved from http://occupational-therapy.advanceweb.com/Article/Occupational-Deprivation.aspx


Christensen, C., & Townsend, E. A. (2010). Introduction to occupation: The art and science of living. (2nd Edn). New Jersey: Pearson.

Oxford Dictionaries (2012). Community. Retrieved from http://oxforddictionaries.com/definition/community

Wikipedia (2012). Online Communities. Retrieved from http://en.wikipedia.org/wiki/Online_community







3 comments:

  1. Hi Jess, very well researched and explained nicely - well done

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  2. Hi Jess.
    Whats your favourite one of all of these that you've listed?
    Great blog by the way!

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    Replies
    1. Hi Lisa! Thank you for your comments. I think that the New Zealand Spinal Trust website is very well done. As well as having a lot of information in regards to spinal injury, and online forums- they have included activity groups for people to attend. So users can transition from being within an online community into their own physical community.

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