Archive for the ‘patient perspective’ Category

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If She Yells ‘Help Me’ – Poster Therapy to Convey the Needs, Identity of an Ailing Parent

July 23, 2014

Joan Melton, MSN, lives in Indiana.

Photo by Ann Gordon, via Flickr

Photo by Ann Gordon, via Flickr

I am a geriatric nurse practitioner and have also been the daughter to an ill, aging parent. I felt well trained for my professional role but struggled with the latter.

I joked that, despite my logical understanding of what was going on with my mother, it could be hard to accept her physical and functional changes, which sometimes seemed to fly in the face of logic. There were days Mom’s hospice nurses spent more time with me than with my mother. They’d sit and allow me to vent my frustration at watching my mother slowly leave me, at feeling overwhelmed and “losing my cool” with her, at not being able to practice the advice I’d so readily handed out to so many other families over the years, not being able to “fix it” and successfully comfort all of Mom’s fears and ailments 24 hours a day, seven days a week.

Yes, I know how unrealistic that last statement sounds. Thank goodness for hospice nurses, who reminded me that I was “the daughter” and did not need to be “the nurse practitioner.” They reminded me that as the daughter I had amazing insight no one else had.

So, when Mom spent a week in the nursing home to give my family some long-overdue respite time, her hospice nurses suggested I share all of my rich, personal, daughterly insight.

Their idea was brilliant. It made me feel useful and allowed me to feel less guilty about taking Mom to the nursing home. Most of all, it reminded me of who my Mom really was behind the mask of her dementia.

Mom’s health issues had begun with chronic, recurrent atrial fibrillation. Placed on Coumadin for stroke prevention, she fell, hit her head, and had a cerebral bleed. She was taken off Coumadin, and during her recovery had another episode of atrial fibrillation, this time suffering a thrombotic stroke that left her with memory problems and expressive aphasia. In addition, Mom was blind from the effects of glaucoma and macular degeneration.

In summary, Mom was unable to walk by herself, couldn’t find words to say what she wanted to say, and could only see shadows. Naturally, she became fearful and frustrated as her world closed in on her. Confusion and anxiety were side effects of her condition(s). At times, she was so anxious that she became short of breath. Her oxygen levels would drop, and her confusion would get worse. In addition, her appetite changed. She lost weight, and like many elderly patients, she had recurrent urinary tract infections from not drinking enough fluids.

Two posters. Before it was time to take Mom to the nursing home, the hospice nurses suggested I make two posters to display in her room. They suggested that on the first I list who my Mom was behind the mask of her dementia. What did Mom love to do before she became ill? They also suggested I put photographs of Mom on the poster to show what she’d been like before she became so frail.

On the second poster they suggested I write things to help the staff at the nursing home take better care of Mom, tips that only I knew from my past experiences as her caregiver and her daughter. Seeing these things written on a poster and displayed in her room would serve as a reminder for the staff, and would provide an easy way to share important information about her to all the different staff members who would be involved with Mom’s care.

I took the nurses’ excellent advice and began making the two posters. The entire family helped. Mom’s posters were the talk of the nursing home. People would come into her room just to read them. Here are a few examples of what we wrote:

Poster #1
Mom loves flowers, especially zinnias.
Mom’s was married to Dad (name) for 51 years. Dad went to heaven eight years ago.
Mom had five children (we listed their names). Mom calls out for her oldest son.
He and his wife took care of Mom at home.
Mom loves to waltz and old-time country music.
Mom loves to talk to her sister (name) on the phone every day. Mom is extremely close to her sister. Their mother died when they were only four and six years old.
Mom loves cooking for her family. She makes the best fried chicken.
She loves listening to the Catholic mass on TV or praying the rosary.
Mom loves going to the country, raising cows and bottle feeding the baby calves. She would give the cows names like pets.
Mom loves having her hair fixed and putting on make-up and looking nice every day. Read the rest of this entry ?

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Tragic Plane Crash, Truvada Concerns, Changing Infection Rates: AIDS/HIV Issues in the News

July 21, 2014
Truvada

Truvada / via Wikimedia Commons

By Jacob Molyneux, AJN senior editor

There have been a number of recent high-profile news stories as well as some notable new research related to HIV/AIDS and its treatment and prevention.

First, AJN would like to add its voice to those expressing heartfelt regret at the deaths of a number of prominent and widely respected HIV advocates and researchers in the Malaysia Airlines jet that appears to have been shot down over Ukraine last week.

The Truvada controversy. Those who who died on the plane had been heading to an international conference in Melbourne, Australia, where one of the hot topics under discussion would be the pros and cons of the continuing expansion of the use of the antiretroviral drug Truvada beyond the treatment of existing HIV infection to long-term prophylactic use by the uninfected.

The topic is particularly timely here in New York where Governor Cuomo last week announced that New York State would make Truvada a centerpiece of its HIV-prevention strategy. The drug, taken every day, is more than 90% effective in preventing infection, but, as an NPR story recently described, a number of experts have raised concerns about widespread long-term use of Truvada for HIV prevention, noting

  • serious potential side effects of Truvada.
  • the $1,300/a month cost of the drug.
  • the reduction in the use of condoms by some of those taking Truvada, which could lead to higher rates of other sexually transmitted diseases.

Read the rest of this entry ?

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Getting Patients Involved in Care Redesign: What the Research Says

July 16, 2014

By Sylvia Foley, AJN senior editor

“I think the whole thing is we’re trying to im­prove care. It’s all about [patients] anyways. So if we’re gonna make changes that impact them I think we have to get them involved.” —study participant

Although there is considerable support for increasing patient involvement in health care, it’s not clear how best to achieve this. And few researchers have specifically investigated the views of patients and providers on patient engagement. In this month’s CE–Original Research feature, “The Perceptions of Health Care Team Members About Engaging Patients in Care Redesign,” Melanie Lavoie-Tremblay and colleagues describe findings from their recent study. Here’s a brief overview.

Objective: This study sought to explore the perceptions of health care workers about engaging patients as partners on care redesign teams under a program called Transforming Care at the Bedside (TCAB), and to examine the facilitating factors, barriers, and effects of such engagement.
Design: This descriptive, qualitative study collected data through focus groups and individual interviews. Participants included health care providers and managers from five units at three hospitals in a university-affiliated health care center in Canada.
Methods: A total of nine focus groups and 13 individual interviews were conducted in April 2012, 18 months after the TCAB program began in September 2010. Content analysis was used to analyze the quali­tative data.
Findings: Health care providers and managers benefited from engaging patients in the decision-making process because the patients brought a new point of view. Involving the patients exposed team members to valuable information that they hadn’t previously thought about during decision making.
Conclusion: Health care teams stand to benefit from engaging patients in the change process. Patients contribute a different point of view, and this helps to ensure that the changes proposed and implemented address their needs.

Noting the importance of mindset, the authors concluded that “perhaps the most important facilitating factor in including pa­tients on care redesign teams is for all those involved to believe that their participation is crucial to im­proving the design and delivery of services.”

For more details, read the article, which is free online. What’s your take on patient engagement?

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Preparing Patients to Care for Themselves After Discharge

July 11, 2014

Here’s your prescription. Don’t drive if you take it. Call your surgeon if you have a temperature or are worried about anything. See your doctor in two weeks. Want a flu shot? If you need a wheelchair to take you to the door, I’ll call. If not, you can go. Take care of yourself. You’ll do great!”

These were my nurse’s parting words before I left the hospital after a weeklong stay and surgery to remove my stomach and the tumor in it. I said goodbye. Then I panicked. What did I need to know about my new digestive system? What about that big scar? Until then I’d been closely monitored and checked on every 90 minutes.

Now it was 8:45 in the morning. My husband hadn’t arrived. I was supposed to move on.

Jessie Gruman

Jessie Gruman

That’s the start of our July Viewpoint column, “Preparing Patients to Care for Themselves,” written by Jessie Gruman, president and founder of the the Center for Advancing Health, a nonpartisan policy institute that’s played an important role in the growing patient engagement movement.

In this essay and elsewhere, Gruman draws on her own experience as a cancer patient as well as her public health expertise to bring insight and clarity to the often nebulous concept of patient engagement.

With greater success in treating certain types of cancer, and more and more people living with one or more chronic illness, patients increasingly need the tools and confidence to become partners in their own care. Such phrases, used too often, can becomes clichés that we no longer really hear—but the stakes are very high for both patients and institutions. Read the rest of this entry ?

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How a Nurse Helped My Health Anxiety

July 1, 2014
IF

Photo by Sheila Steele, via Flickr.

By Amy M. Collins, editor

As a person who suffers from health anxiety, going to the doctor is always an ordeal. While some hypochondriacs tend to seek medical care with fervor, I am of the variety that avoids it at all costs. Unless it’s necessary.

Recently I had a necessary diagnostic test that involved a contrast agent. Several things about the test worried me. I was told it might hurt; I’d never had a contrast agent before (and on House—a show I should never watch—patients are always allergic to it!); and I was afraid that during the exam I would panic, faint, or cry.

Some people might be thinking: “suck it up!”—and I wouldn’t blame them. But I promise you, this isn’t something I’m proud of. I’d love to be more stoic when it comes to medical procedures/visits. Unfortunately, anxiety is a real thing. It is illogical and it can sometimes take over one’s senses. I spent the days preceding the test sleepless and tense. Read the rest of this entry ?

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Providing Culturally Sensitive Care: It Takes More Than Knowledge

June 25, 2014

By Karen Roush, AJN clinical managing editor. Photos by the author.

DSC_0136One Saturday a few weeks ago I grabbed my camera and headed out to spend the afternoon taking photographs around the city. I ended up wandering around the streets of Chinatown, photographing the street life—the rows of fresh fish on piles of ice, the colorful patterns of vegetables in crates outside shops, old women in variations of plaid and flowered housedresses lined up on a bench, children scattering clusters of pigeons.

Eventually I happened upon a vigorous and highly skilled game of handball in a park. The competitors were predominately young Asian men, though there were a few Hispanic men playing too. Standing next to me, a young man was telling his friend about a clever way a mutual friend had devised to get out of paying a parking ticket. If you live in New York, or almost any big city, you will earn yourself a parking ticket or two at some point. Intrigued by this man’s idea, I asked him if it actually worked and he assured me it did. Then he rolled his eyes and said, “Oh no, I shouldn’t have said anything. Once the white people know, that’s the end of it!” Read the rest of this entry ?

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When Metrics and Testing Replace Listening and Physical Assessment

June 13, 2014

By Gail M. Pfeifer, MA, RN, AJN news director

Emergency x 2 by Ian Muttoo, via Flickr.

by Ian Muttoo/via Flickr

I was appalled as I read the Narrative Matters column by physician Charlotte Yeh in the June issue of Health Affairs, for two reasons. Aside from the compassion I felt for her suffering at being hit by a car on a rainy Washington, D.C., evening in 2011, I was dismayed that most of her story took place in an ED, one of the settings in which I used to work. While there, she met with a series of omissions that included not just medical care omissions but also—though she never explicitly connects the dots—basic and serious nursing care omissions.

It saddens me to think that one of the things I fought so hard to implement on our unit more than 20 years ago—transforming the staff’s automatic labeling of arriving patients (an MI, an MVA, a gunshot wound) into a unique picture of who that patient really was under those traumatic circumstances—has still not come to pass. Yet that change of vision is so important to completing the picture and arriving at an accurate diagnosis. Noting that her care demanded a better balance of necessary test-based care and “an understanding of me as a person and what mattered to me,” Yeh points out how, for many providers, the clinical measures “can become more important than the patient.”

She narrates her view from the hallway stretcher as the ED team looks at cursory objective data only—some negative test results, the fact that she was not lying in the street when EMTs arrived (she had been moved by bystanders at her request, to avoid being run over by oncoming traffic), and that meds relieved her pain. But the objective signs that could have been gotten only from listening to her and from a solid nursing assessment were ignored for far too long.

I would expect a Level 1 trauma center team to know that clinical measures form only the tentative outline of a complete patient picture. Yet Yeh did not even receive a thorough history and physical from any member of the team. Yeh is a physician and understandably focuses her finger-pointing on medical care, which failed to order the tests that might have clarified the outline of what was happening with this particular “auto-ped.” Read the rest of this entry ?

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Noise in the ICU: Terminology, Health Effects, Reduction Strategies, and What We Don’t Know

May 16, 2014

By Jacob Molyneux, AJN senior editor

Noise isolation headphones to use in loud environments

via Wikimedia Commons

I woke up this morning, as I do every morning now, to the sound of pile driving at a large construction site a block and half away on the Gowanus Canal. It shakes the earth and reminds me of the forges of evil Sauron in one of the Lord of the Rings movies. I once had a dog lose a good bit of hair when there was a pile driver for several months in the lot behind another apartment in Brooklyn.

The negative physical and emotional effects of excessive noise get an occasional mention lately in health reporting, but in New York City or along the remotest forest lane, the forces of quiet can seem to be in rapid retreat before an army of leaf blowers, all-terrain vehicles, diabolically amped-up motorcycles, huge TV sets, garbage trucks, helicopters, and the like.

Lest I sound like a total crank (I do have useful noise-cancelling headphones plus an Android app that offers such choices as white noise, brown noise, burbling creek, steady rain, crickets, and soothing wave sounds), there’s a reason for the preamble. Florence Nightingale herself called unnecessary noise “the most cruel absence of care which can be inflicted either on sick or well,” as is pointed out by the University of Washington researchers who wrote the latest installment of our column Critical Analysis, Critical Care.

“Noise in the ICU” looks at current research about the health effects of noise in the ICU, provides useful definitions of the terminology used when talking about sound levels, and considers strategies for reducing noise, as well as what still needs more study. The article will be free for a month (until June 15), so give it a look and see if it gets you thinking. After all, to quote the article again, “Studies have found that sound levels in the ICU continue to exceed WHO recommendations.”

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Anxiety Apps: New Fad or Worth the Download?

April 16, 2014

photo3By Amy M. Collins, editor

Today there’s an app for everything. There are find-your-keys apps, map-the-stars apps, even an app to help you hone your stapling skills. And apps exist to help patients with every kind of health care need, from managing diabetes to prenatal care. Usually, in an attempt to keep my smartphone use to a minimum, I avoid jumping on the trendy app bandwagon. But recently I came across an article touting an app to reduce anxiety. As a long-term, mostly recovered sufferer of chronic anxiety and panic, this article piqued my interest (and my skepticism).

While certainly not the first app developed to reduce stress, this particular app—called Personal Zen—has been tested by researchers who found that participants with relatively high scores on an anxiety survey showed less nervous behavior after using the app than those in a placebo group, according to a study published in Clinical Psychological Science. Developed by psychologist Tracy Dennis, a professor at Hunter College in New York City (and, it should probably be noted, one of the study’s lead authors), the app incorporates the concept of cognitive bias modification to get the user to shift their focus from a threatening stimulus to a nonthreatening one. More studies are needed to see if such an app would have the same success in those with clinically diagnosed anxiety.

And there are literally hundreds of other apps catering to those with anxiety (click here for a Healthline article on the 17 “best” antianxiety apps; and here are more from Google Play).

Is it really that easy? If only antianxiety apps were available when I was first diagnosed over a decade ago. Back in that particular Stone Age, I had limited choices: antianxiety meds, talk therapy, alternative methods, or a combination of these options. I chose therapy and alternative methods and embarked on a 10-year quest to control the disorder instead of vice versa. I read books, employed relaxation techniques, joined groups, and challenged myself to face situations that caused anxiety. Employing these tactics eventually brought me to a place where I could live relatively anxiety free without medication. Read the rest of this entry ?

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The Power of Imagination: Helping Kids with Sickle Cell Disease to Cope with Pain

April 2, 2014

By Sylvia Foley, AJN senior editor

Many people with sickle cell disease suffer from both acute and chronic pain, which can be severe. Although the exact mechanism isn’t known, the pain is believed to result when sickled erythrocytes occlude the vascular beds, causing tissue ischemia. Such pain, which often begins in early childhood, arises unpredictably. Although some pain crises may require ED visits, hos­pitalization, opioid treatment, or a combination of these, most are managed at home. Yet little is known about at-home pain management in people with sickle cell disease, especially children.

Table 2. Changes in Self-Efficacy, Imaging Ability, and Pain Perception in School-Age Children After Guided Imagery Training

Table 2. Changes in Self-Efficacy, Imaging Ability, and Pain Perception in School-Age Children After Guided Imagery Training

Cognitive behavioral therapy (CBT) has shown promise in helping patients with other chronic illnesses to cope with pain. Cassandra Elaine Dobson and Mary Woods Byrne decided to test guided imagery, a form of CBT, among children enrolled at one sickle cell treatment clinic in New York City. They report on their findings in this month’s original research CE, “Using Guided Imagery to Manage Pain in Young Children with Sickle Cell Disease.” The abstract below offers a quick overview; if you click the image above, you’ll see an enlarged view of one table showing key results.

Objectives: The purposes of this study were to test the effects of guided imagery training on school-age children who had been diagnosed with sickle cell disease, and to describe changes in pain perception, analgesic use, self-efficacy, and imaging ability from the month before to the month after training.
Methods: A quasi-experimental interrupted time-series design was used with a purposive sample of 20 children ages six to 11 years enrolled from one sickle cell disease clinic, where they had been treated for at least one year. Children completed pain diaries daily for two months, and investigators measured baseline and end-of-treatment imaging ability and self-efficacy.
Results: After training in the use of guided imagery, participants reported significant increases in self-efficacy and reductions in pain intensity, and use of analgesics decreased as well.
Conclusions: Guided imagery is an effective technique for managing and limiting sickle cell disease–related pain in a pediatric population.

The technique was easily taught in training sessions lasting 15 to 45 minutes, with no child needing more than one session. The authors concluded that “the use of guided imagery in this population assumes that a child’s imagination has the potential to affect health, and our findings support that assumption.” Because this was a small study, they urged further large-scale clinical trials.

To learn more, read the article, which is free online. As always—and especially if you have experience caring for children with sickle cell disease—we welcome your comments.

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