Thanks for your compelling entry, Dr. Mathews. It prompts some questions.
Can you describe further what you witnessed concerning the increased adherence among patients who'd previously been a bit weak on the adherence front? Do you think this increased adherence will extend to patients who will need to manage their own illnesses at home, rather than returning to (or being dependent upon) hospitals for their next round(s) of treatment?
I know that your project's name and goal, HOPE, indicate that it's focused on children experiencing chronic illnesses who are in hospitals. Have you the goal of extending your project to include kids who are chronically ill at home? I'd wonder whether the pleasure of -- perhaps even the increased adherence that comes from-- a child's finding a supportive environment in the hospital could be undermined by his/her losing that community once s/he returns home (in between treatments) or gets better.
a) We specifically asked our kids whether the HOPE carts made the process of dialysis more interesting, to which all the respondents replied yes. Furthermore, looking at the attendance records pre and post intervention, we noted a rise in the attendance rates from one boy and one girl who previously were known for their absenteeism. As this wasn't a powered study looking at this specifically, we can only speculate as to the significance of this data, however, the implication that this somehow made dialysis more appealing was quite promising. With regards to increasing adherence at home - well, I'm glad you asked. Frankly it makes a great deal of sense to allow this type of intervention to take place at home. While our particular group of kids all had chronic kidney disease, the intervention lends itself well to all forms of chronic illness - in essence, any circumstance that creates the perception of ostracism from one's typical peer support group, be it in the hospital or out.
b) Furthermore, the thought of family members connecting with patients in and out of hospital and gaming together has always been a compelling one to me. I once read about a child who had been diagnosed with leukemia, with a father that traveled a great deal as a businessman, making in-person hospital visits difficult. They tackled the problem by agreeing to meet online and slay dragons together, which according to the boy, was absolutely the next best thing. I also liked the role-reversal that took place, with the child (being more adept at the game) taking the commanding role. So yes, to answer your question, the natural evolution of such a network would be to extend out beyond the reach of the hospital bed and provide a peer support 'safety net' through all the aspects of the disease, inpatient and outpatient.
Chrissy - zounds! the url from the Changemakers site isn't working! I'm really sorry about that! Our project url is www.HOPEconnectsKIDS.org - thanks for looking!
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Thanks for your compelling entry, Dr. Mathews. It prompts some questions.
Can you describe further what you witnessed concerning the increased adherence among patients who'd previously been a bit weak on the adherence front? Do you think this increased adherence will extend to patients who will need to manage their own illnesses at home, rather than returning to (or being dependent upon) hospitals for their next round(s) of treatment?
I know that your project's name and goal, HOPE, indicate that it's focused on children experiencing chronic illnesses who are in hospitals. Have you the goal of extending your project to include kids who are chronically ill at home? I'd wonder whether the pleasure of -- perhaps even the increased adherence that comes from-- a child's finding a supportive environment in the hospital could be undermined by his/her losing that community once s/he returns home (in between treatments) or gets better.
I look forward to hearing your responses.
Best,
Diane
Changemakers
Diane,
Thanks for looking our 'blueprint' over!
a) We specifically asked our kids whether the HOPE carts made the process of dialysis more interesting, to which all the respondents replied yes. Furthermore, looking at the attendance records pre and post intervention, we noted a rise in the attendance rates from one boy and one girl who previously were known for their absenteeism. As this wasn't a powered study looking at this specifically, we can only speculate as to the significance of this data, however, the implication that this somehow made dialysis more appealing was quite promising. With regards to increasing adherence at home - well, I'm glad you asked. Frankly it makes a great deal of sense to allow this type of intervention to take place at home. While our particular group of kids all had chronic kidney disease, the intervention lends itself well to all forms of chronic illness - in essence, any circumstance that creates the perception of ostracism from one's typical peer support group, be it in the hospital or out.
b) Furthermore, the thought of family members connecting with patients in and out of hospital and gaming together has always been a compelling one to me. I once read about a child who had been diagnosed with leukemia, with a father that traveled a great deal as a businessman, making in-person hospital visits difficult. They tackled the problem by agreeing to meet online and slay dragons together, which according to the boy, was absolutely the next best thing. I also liked the role-reversal that took place, with the child (being more adept at the game) taking the commanding role. So yes, to answer your question, the natural evolution of such a network would be to extend out beyond the reach of the hospital bed and provide a peer support 'safety net' through all the aspects of the disease, inpatient and outpatient.
what is your website called because i want to go on it thankyou.
Chrissy - zounds! the url from the Changemakers site isn't working! I'm really sorry about that! Our project url is www.HOPEconnectsKIDS.org - thanks for looking!
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