Building on from the previous posts here are some hyperlinks to three relevant online communities:
Care Cure Community:
Alzheimer's Association Online Community:
CampbellTeaching (YouTube):
A brief description of each community:
Care Cure Community is on online forum specifically to do with spinal cord injuries. They have a number of forums that the public can contribute to that cover a number of subjects within the cares and cures for a person with a SCI. SCI nurses contribute to these forums to answer the questions from the public and provide information to people about the best care to give if you are caring for a person with a SCI and also the latest in the research for a cure. The public are also able to ask questions, answer questions, or share and discuss a relevant piece of information. Within the cares category is a forum set up specifically focusing on pressure areas.
How interactive is this site? This site is very interactive with many people asking questions, answering questions and sharing relevant and helpful information.
How can people contribute? People can contribute by starting or participating in a discussion thread. Members who join are able to ask any question relevant to the thread topic, leaving other members and the medical members to answer the questions and provide advice.
What do they contribute? As mentioned they can contribute questions and answers, links to relevant information and share personal experiences of either having or caring for someone who has a pressure sore.
Example of the topics being discussed: This is an example of an online member who suffers from a SCI. The members introduces their current experience of a developing pressure sore and asks for some clarification as to what to do. The post is answered by a SCI nurse that is a moderator for the forum.
Example of the topics being discussed: This is an example of an online member who suffers from a SCI. The members introduces their current experience of a developing pressure sore and asks for some clarification as to what to do. The post is answered by a SCI nurse that is a moderator for the forum.
Excerpt from http://sci.rutgers.edu/forum/showthread.php?t=82229
Alzheimer's Association Online Community is also a public online forum that specifically focuses on topics related to Alzheimer's disease. Within this, a caregivers forum has been established and a specific thread of pressure ulcer's. This is a place where caregivers can ask questions, answer questions, share information or share their personal experiences of pressure ulcer's developing on individuals with Alzheimer's.
How interactive is this site? This site is also very active with members of the forum making regular posts that consist of questions, answers, information, links to relevant articles and sites and relevant personal experiences.
How can people contribute? Members can contribute by posting on a current discussion or by starting a new discussion or poll. They have the ability to make and reply to posts and share relevant information.
What do they contribute? As mentioned many provide links to relevant websites, articles, experiences with caring for pressure sores, relevant experiences, and asking questions for others to answer.
Campbell Teaching (YouTube) is an individual who posts educational videos on YouTube; many of which have a medical theme. Campbell has posted a number of videos regarding pressure sores giving an in depth look at how they develop and the different stages and types. One of his videos in particular has accumulated a number of comments on the online community of YouTube, some with general comments and others with question to which he has responded.
How interactive is this site? This site is interactive in that members can post and reply to comments, rate the video and have the ability to like and dislike the comments that are posted. Members also have the ability to subscribe the the YouTube channel of the person that has posted the video in order to "follow" them and any further videos that are posted.
How can people contribute? People contribute by sharing their opinions in the form of comments and ratings. They also contribute through their comments by starting discussions with other video views and even the poster of the video.
What do they contribute? In this specific case, many people have commented on how helpful and informative the video has been for them. There are also a number of members leaving relevant questions much like the previous forums discussed, in the hope that someone will give them an answer. Generally members do answer questions of other members with relevant helpful information, such as how to find a relevant pressure relieving cushion to improve their condition. Members also share their personal opinions, both positive and negative.
Example of topics being discussed:
The following example is one of a viewer leaving a an excerpt of her personal situation and the problem she is facing in terms of caring for an individual with a pressure sore. Her question is answered by the person who created and posted the video.
Why do people contribute to these online communities?
Online communities are similar to any communities in the sense that being a member of such a community gives you a sense of place and belonging; that you are not alone. By seeking answers from others with a similar experience or knowledge it provides it's members with the support that they may not be getting elsewhere. The information shared in these examples of online communities, the information shared is intended to be reciprocal; a give and take form of communication. Members respond to each others needs thus providing that communal support.
Of course like many other things I have discussed on previous blogs, these online communities post a number of ethical issues. It can open members up to be vulnerable when they share such personal experiences in such a publicly accessible space; that perhaps some individual might try and take advantage of them. Also some of the information shared is only based on experience and is not based on legitimate professional medical advice. There is also no means of proving members are who they say they are, such as "medical professionals" that contribute "free medical advice" to the forums.
However the benefits of having such online communities is that it has a way of reaching a specific group of people from many walks of life, in many places of the world, finds a common link between them all and provides them with an opportunity to communicate. For individuals who suffer from or care for those who suffer from pressure areas/sores, it can be very difficult to find people with the same experience in real life, let alone people that want to talk about it openly. The internet has a way of giving people the confidence of having a voice and speaking up, partly because of the anonymity of the user names where faces cannot be put to names.
Apart from these benefits, online communities such as these can lack certain things that traditional communities can provide. Traditional communities provide true relationships and support, on a much more personal level. It gives the community a face. Many more things can be communicated on a face to face level such as body language, emotions, change in voice and tone that can not be communicated over the internet. Somehow I do not think that emoticons will ever be taken seriously :(
So really it all depends on what a person is individually seeking; sometimes an online community is all you need, and sometimes it may not offer you enough. However when seeking for online support keep a watchful eye on the information being shared.
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