For my final project, I am working on developing a NING site for patients with congestive heart failure. It has been an exciting week- first I will share with you my experiences with NING . It was really easy setting up the account. You do have 3 options to choose from- I went with the basic format but added other features such as the ability to set up groups. My first hurdle was choosing the name of the network. I would never have guessed how difficult this could be as I wanted it to be easy to find, as it is hard to have anybody participate if they cannot find you. At the same time I did not want it to be too restrictive so that others would not want to check it out. The other issue was that I did not want it to be too similar to groups already in existence so that patients and family members would not think that I am receiving support from a particular association. In the end I chose the name Saskatchewan Heart Failure Network. It is limiting from the standpoint of will others who live outside of Saskatchewan want to participate? I am not sure but hope to find out eventually. I would ultimately like to have this site up and running but will require ethics approval first.
Now back to the site- as I had access to the basic format (and no programming skills) I chose one of the available backgrounds which happens to be a cork board. It is okay, would not be my preferred choice for a background but given the other selections it is the easiest to read and follow. Attaching videos is really easy and similar to what you do on wordpress.
I have started two groups- one for patients with heart failure, the other for family members and friends who also may want to share their story. A third group was also set up for just general questions. As well I started several discussion postings on various topics such as what is heart failure, medications, diet, monitoring etc. In each of these discussion postings I have provided an overview of the topic with links to websites. I have tried to keep with as many Canadian resources as possible and particularly Saskatchewan based for relevancy. I also started a forum on medications- this was started as so many patients do not take medications as scheduled due to side effects.
I met with the nurses at the Congestive Heart Failure Clinic in the Regina Qu’ Appelle Health Region and they are very excited about this project as there is such a need. I was told that patients last week were asking if such a site exists. These nurses will be given access to the site and I look forward to their comments and how I can improve it. I will be continuing to develop it throughout the month- ultimately I would like the site to become a place where patients, family members and friends can seek advice, share experiences and stories, support one another and have access to current and relevant information monitored by a nurse.
I have also been asked to share this with the Canadian Council of Cardiovascular Nurses in one of their webinars when I am further along. I will continue to blog about what content I chose for the site as well as about the feedback I receive so I will keep you posted.