For my first interview, I thought I’d interview someone who would tolerate my novice interviewing abilities — my mother. Ginny, RN, BS, DDRN has been a nurse for over 30 years, most of that time in the Intensive Care Unit. (The apple did not fall far, did it?) She currently works as Developmental Disabilities Nurse and has done so for nine years.
A developmental disability is defined by Wikipedia as “a term used in the United States and Canada to describe life-long disability attributable to mental and/or physical impairments, manifested prior to age 18.” Ginny says that her clients have a range of mental and physical disabilities including cerebral palsy, Down Syndrome, mental retardation, and autism, with autism being the most prevalent. Her clients live in normal houses along with nurse’s aides and “direct support professionals” (DSPs).
How did you get started as a Developmental Disability Nurse?
A friend encouraged me to come work with her after I lost my job when they closed the children’s home where I had been working.
Do you like it?
I have had other nursing jobs including med-surg, peds, ICU, factory nurse, WIC nurse, children’s home nurse, and finally this job. I have liked all of my jobs but this has been the most rewarding. The people I care for just love it when the nurse comes around. There is always a “thank you” in their eyes.
What frustrates you about your job?
It is, of course, a job which requires state controls. Their idea of “nursing” is an awful lot of useless paperwork that makes no sense to me. The pay is not commensurate with other nursing jobs considering the reponsibilites of delegating nursing tasks to laypersons. There are so many things these people need and it’s hard to get. There are so many state mandates that are designed to move people toward being as independent as possible but the mandates also make us take many steps backward in that process. Read more »
A year ago Gangadhar Sulkunte shared his story here about how he and his wife became e-patients of necessity, and succeeded, resolving a significant issue through empowered, engaged research. As today’s guest post shows, he’s now actively engaged in thinking about healthcare at the level of national policy, as well – and he calls for all patients to speak up about this new issue. – Dave
Making patient-reported outcomes a more routine part of clinical studies and practice and administrative data collection.
In some cases requiring the information for reimbursement.
Patient-Centered Outcomes is outcomes from medical care that are important to patients. The medical community/research focuses on the standard metrics related to survival and physiological outcomes (how well is the part of the body being treated?). In the patient-centered outcomes research, they will also focus on outcomes important to patients such as quality of life. In other words, the care experience will be viewed through the eyes of the patients and their support groups to ensure that their concerns are also addressed. Read more »
*This blog post was originally published at e-Patients.net*
A 2009 journal article in the Proceedings of the National Academy of Sciences (PNAS) — promoted in a news release by the journal and picked up by many news organizations — has now been retracted by the authors. But the journal issued no news release about the retraction — an issue of transparency that the RW blog raises. And you can guess how much news coverage the retraction will get.
And this was all over a molecule that could supposedly “make breast tumors respond to a drug to which they’re not normally susceptible” — as the RW blog put it. But it was also a molecule, RW points out, that wasn’t even in clinical trials yet.
He or she who lives by the journal news release risks one’s long-term credibility.
Since the beginning of November, I’ve been dealing with a random few weeks of feeling “real-people sick” (RPS). Like I wrote about last week, diabetes is something I’m used to and can deal with pretty well, but the common cold knocks me right on my end. I deal with colds like a guy. I hate being RPS:
Real People Sick: The differentiation between blood sugar issues and the common cold. Phrase slips out most often when the diabetic admits to not feeling well and must specify that it is not blood sugar related.
This month’s Animas “Life, Uninterrupted” vlog is about being “sick” on top of having diabetes, and about how cracked-out squirrels and I sometimes share the same vocal patterns. Unfortunately, there’s another cameo by Abby (the cat) because she’s usually lounging, all lazy, while I record these things. (That cat needs to get on the ellipmachine or something — chubby little chomper.)
Enjoy, and thanks for not judging me for the squeaky voice and the whining!
*This blog post was originally published at Six Until Me.*
To complain or “be good” is an apparent dilemma for some patients with serious illness.
Yesterday I received an email from a close friend with advanced breast cancer. She’s got a lot of symptoms: Her fatigue is so overwhelming she can’t do more than one activity each day. Yesterday, for example, she stayed home all day and did nothing because she was supposed to watch a hockey game in the evening with her teenage son and other family members. Her voice is weak, so much it’s hard to talk on the phone. She has difficulty writing, in the manual sense — meaning she can’t quite use her right arm and hand properly.
“It’s something I would never mention to the doctor because it is very subtle,” she wrote. “But it has not improved and if anything has worsened over time.”
There are more than a few possible medical explanations for why a person who’s receiving breast cancer therapy might not be able to use her right arm. But that’s not the point of today’s lesson. What’s noteworthy here is that the patient — an educated, thoughtful woman who’s in what should be the middle of her life and is trying as best she can to survive — doesn’t think these symptoms are worth mentioning. Read more »
*This blog post was originally published at Medical Lessons*
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