As
I have mentioned in my first blog posts, my first fieldwork placement was in
the S.T.A.R. ward in Palmerston North public hospital. Here I met many patients
who had had a stroke of some kind which had left them with multiple
impairments. Below are three online communities that have been set up for, and
by people who have had a stroke so that they can communicate, share knowledge
and ask questions to others in the same boat as them.
The
first site is called StrokesSuck and it is on a popular social media networking
site; Facebook. The purpose of this site is to give those people who have had a
stroke, or a family member or friend has had a stroke a place to meet and talk
to others who are in a similar situation to them. As this is a Facebook page it
allows the user to post positive photos and quotes that help them get through
their day. It allows people to chat with others, ask any questions they may
have and be linked in to any helpful websites people have found. People can
contribute to this site by sharing their own stories, helpful encouraging
messages, and by linking new current information about strokes to the page for
everyone to check out. As Facebook is a vastly popular social media site many
people are already connected to it in some way which makes the site very
interactive and easy to use. By ‘liking’ of ‘joining’ the page a person can be
notified by email or pop up if any events are happening, if someone has posted
a photo, or if someone has directly asked spoken to you so you are continuously
in the loop.
The
Second site is called StrokeNet. Stroke Net is an online question based forum
page that allows anyone to log in and ask questions, read information and be
educated in all things stroke related. Here you can log on as an anonymous user
and browse all the question forums to your heart’s content; you can comment on
the forums and ask questions and you can tell your own stories and others can
comment to you. There are online chat rooms for all ages and categories
(there’s a stroke caregivers chat room, a young survivors chat room and many
more). This site has a donation service linked to it so if you feel like
donating to a stroke trust, that option is available for you on the side of
your page. This site is very easy to use, once you register the whole site is
available for you to see and use to its full extent. People can contribute
their thoughts, stories, feelings, encouragement and prior knowledge to this
site by just being online and logging in.
The
third site is called Stroke Central. This site is an online community made to
help those who have survived a stroke and their families. This site is very
education based with many Doctors posting information that is useful to anyone
who is affected by stroke; it has chat rooms to make friends who have
experienced similar things to you, and discussion question and answer forums
for anyone to comment in. This site is member based meaning as a member you
have access to the full site but as a guest you can see a portion of the
site. This site offers great links to
stroke related events happening near you, blogs where relevant information can
be found, and offline support groups in your area. People can contribute to
this site via comment and email online, they can post comments, stories,
photos, links and helpful tips on the forums. This site is very interactive as
it gives the viewer many different choices of where to find specific
information they are looking for with ease as the website is easy to follow.
I
believe that people choose to contribute to these different online communities
to feel like they are not alone in their situation; they can reach out to
others who truly understand what they are going though, and ask questions that
they know will be answered truthfully, from an encouraging and helpful source. The
people who visit these sites are seeking guidance, support, information and
friendship; they seek to gain helpful knowledge that my help them in their own
situation, and share insider knowledge that only they may have to help others.
The information on these sites comes from all angles; there are links set up to
public information pages and events around NZ, people with experience of stroke
post personal knowledge and there are comments directly from health
professionals with medical experience in stroke. Many people who have suffered
from a stoke experience occupational deprivation in some way. Occupational
deprivation is defined by Christiansen & Townsend (2010) as “a state of
prolonged preclusion from engagement in occupations of necessity or meaning due
to factors outside the control of an individual” (p. 420). The effects after a
stroke on an individual can be huge; a person can lose the ability to walk,
speak, cognitively and physically function properly, see with full vision and
many more. All of these resulting factors effect on an individual’s meaningful
occupations, and how they can participate in them; for example, if a person who
loves to sing suffers from a stroke and as a result has Broca’s aphasia, they will
not be able to fully participate in that meaningful occupation like they did
previously because the stroke has affected their ability to articulate words.
Individuals
who suffer from a stroke or are affected by the impact of stroke on a family
member or friend often go through changes in occupational transition.
Occupational transition is defined by Christiansen & Townsend (2010) as “circumstances
creating a change in the nature or type of occupational engagement pursued by
or available to an individual” (p. 421). When an individual is affected in some
manner by stroke they go through occupational transitions; this may be a change
in role from wife or husband to semi caregiver, a change in occupation, from a
truck driver to a stay at home dad, or change in meaningful participation in chosen
occupations, like a debate team enthusiast who now writes the scripts but can’t
articulate the words.
Ethical
considerations must be taken into account when using and posting in online
communities. Websites like the ones linked above are great for posing and
questioning with a sense of anonymity, as you real name and personal details
are not a prerequisite to using all of the sites features. This however can
cause huge ethical dilemmas when those few people (we’ve all seen them) post
rude, irrelevant and sometimes hurtful things – knowing they can’t be caught as
the site has no information on who they really are. These types of people (and
there are many out there) can also go one step further and steal your online
identity. (stay with me here this isn’t like the Bourne Identity) – as online
communities do not require identification validation anyone can sign in to site’s
like those linked above as anyone they liked. I, for example, have access to my
flatmates and friend’s Facebook profiles… one quick right click and I’ve saved their
photo to my desktop…another few click later and I’m all signed up to Habbo
Hotel as one Aimee McKay – with the picture to match, and no one know who I really
was.
Online
communities are great. You can be anonymous if your embarrassed about anything,
it can add as a surplus to real life communities, there are large amounts or relevant,
useful information provided, a person can log in from anywhere in the world,
instantly, and not have to travel great distances (which also saves on petrol
costs!), you don’t have to sit through irrelevant nonsensical information you don’t
want or need to know – you can go straight to your desired information and browse
to your heart’s content instantly. Online communities also give you the option
NOT to join in on discussion, but just watch, observe and take all the
information in. However amazing online communities may seem as with everything,
they have their downfalls. As I mentioned before identities can be stolen and
inappropriate and irrelevant content can be splashed about by some rouge who
feels the need to rebel against the system. There can be a huge lack of
understanding between generations – where the slightly older are mightily confused
by the youngsters talking in letters, and the youngsters are losing patience
with the elderly as they continuously fail to get the technology to work for
them. There is also the feeling that if everyone is community-ing online who
will be in the real life community? And will people lose touch with real people
around them? - when everything they need is told to them on their favourite
blog via some super expert from India.
References:
Christiansen,
C., H., & Townsend, E., A. (2010). An
introduction to occupation: The art and
science
of living (2nd
ed.). United States of America: Pearson Education Inc.
