My NING site

I know you and Frank were planning to di by ....Tim, on Flickr
Creative Commons Attribution-Noncommercial-No Derivative Works 2.0 Generic License  by  ….Tim 

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.


4 thoughts on “My NING site

  1. This is exciting to have an update on how your site is developing. This is of interest to me both professionally and personally. I have taken second year students to a cardiology ward for three years in a row for their consolidation practicum in May and June. I will be keeping in touch to refer students to a resource for patient education and support. My brother-in-law required a heart transplant at the age of 48, just over 3 years ago due to a genetic condition. Prior to the transplant, he suffered 2 years of ill health with progressing heart failure and what an emotional toll it took on him and my sister and nieces. Keep us posted.

  2. Looking forward to hearing more as this goes along. Thanks for sharing your progress so far. It sounds like the tool aspect of the project is pretty much worked out – the community building and resource sharing – that’s always the hard part. Best of luck in the upcoming weeks!

  3. Great progress so far! I’m enjoying the opportunity to follow your journey. It would be so much easier to just do this project on your own, but you’ve taken the courageous path of sharing it with others from these earliest stages. It can be more work and little scary to do it this way, but it is so much better to get people involved from the get-go. Very nice!

  4. Pingback: My Major digital project | E-nurse Shauna

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