Primary Nursing of Medically Complex Children in the ICU Increases Parental Trust

Differing views about quality of life.

Photo by Pat Smith/Pexels

As medical care has become increasingly advanced in its ability to prolong life in the face of serious, chronic illness, it has also presented complicated challenges for both the caregivers and care-receivers alike. This holds especially true when we venture into the thorny, subjective realm of “quality of life.”

Sam was a patient with serious chronic illness and severe developmental disability who had been in and out of our pediatric ICU for many years. His most recent nine-month hospitalization had been the most frightening and uncertain thus far, and the gap between the perspectives of the medical team and Sam’s mom had became more apparent. The medical team speculated whether Sam was approaching the end of his life, while his mom asked us to continue doing all we could to maximize Sam’s physical longevity.

Unspoken questions also involved our struggle to measure what exactly comprises “enough” quality of life to justify the continued offering of health care resources. It’s an inevitable struggle with scarce resources and the monetization of quality of life, particularly with a chronically ill, severely disabled child who can feel so “other” to those of us living “normal” lives.

Parents come to our unit seeking […]

2022-09-14T10:01:23-04:00September 14th, 2022|family experience, nursing roles, pediatrics|1 Comment
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A Call for a More Balanced Approach to Family Presence During a Public Health Emergency

What would you want for your family?

Nine years ago, AJN published a Viewpoint article asserting the essential role of family caregivers. The article featured an elderly woman recuperating in a hospital, her daughter at her bedside planning for discharge with the care team. The authors argued that family engagement creates the foundation for safer care, better patient outcomes, and greater efficiency for nurses.

The same patient’s experience would likely have been very different during the Covid pandemic, especially during the intermittent surges over the past two years. The patient would be alone in the hospital, her daughter’s assurances communicated through a digital tablet. Overstretched nurses would provide updates to the family over the phone. Discharge education would occur through a car window moments before the patient’s daughter drove her home, feeling unprepared for what came next.

COVID-19’s highly transmissible properties have complicated the family engagement equation. Over the past two years, hospitals and nursing homes have enacted, eased up on, and then reinstated visitation bans, at times leaving questions as to whether restrictions implemented to reduce disease spread may be more detrimental than beneficial.

As we contended in recent months with the extremely contagious Omicron variant, family caregivers who had assumed an essential role as advocate, […]

2022-03-02T10:21:04-05:00March 2nd, 2022|Nursing|2 Comments
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The Particular Pain and Challenge of Educating Patients During a Worldwide Pandemic

Working in a rural community access hospital during the pandemic has been a struggle. Here as in many areas of the U.S., many in the surrounding community have not accepted the the existence of a virus like Covid-19. Against the backdrop of this widespread disbelief in the reality of the virus, the “government-mandated” vaccine was a final straw for many.

Many of these patients wholeheartedly believe that the vaccine is the “mark of the beast” mentioned in the Book of Revelation and that this is the beginning of the end of the world, with getting the vaccine understood as an expression of loyalty to Satan.

This belief is shared by various religious groups in other areas of our country. Many patients in our community also believe the vaccine is made with stem cells and fetal tissue and includes microchips. There are widely circulated rumors of tracking devices in the vaccine itself.

How do we as nurses and advanced practice registered nurses (APRNs) educate patients on the science of vaccinations in the face of the anger and passion we experience daily from a suspicious community?

The many other strains on nurses.

It hasn’t helped that nurses and APRNs alike have had to deal with more than they bargained for on many levels in […]

2022-02-24T14:38:16-05:00February 24th, 2022|Nursing, patient engagement, Public health|0 Comments
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The Baby with Tetralogy of Flow

It is a good day so far—none of the 16 critically ill babies in the neonatal intensive care unit has coded or died. So far, the shrill electronic alarms for dying babies have been silent.

As the neonatologist on call, this gives me the opportunity to talk to Anna and Jake, Baby Milo’s parents. Milo peers up at them with big brown eyes as Anna leans over his crib and whispers to him. A small transparent plastic mask covers Milo’s tiny nose to help him breathe, and a cluster of saliva bubbles percolate between his lips. Despite a sleeve of tape securing his right hand, his tiny fingers tug the orange orogastric tube taped to his cheek.

Milo’s father, a brawny man wearing scuffed brown shoes, ripped blue jeans, a T-shirt, and a tattered Green Bay Packers cap, sits in a chair and nervously taps his knee while he stares with bloodshot eyes at the vital signs on Milo’s bedside monitor.

“Milo is adorable,” I say from the doorway. His parents look over to me as I step into the room.

“We think so,” Anna says with a smile.

“How are you both doing?” I ask. “Being in the NICU can be pretty stressful.”

Milo’s parents glance at each other and nod. Anna takes a seat next to Jake, who touches her shoulder.

I pull up a chair. “Can you tell me Milo’s story? How did you end up in the NICU?” I say.

“We were celebrating my birthday at a steakhouse,” Jake says. “Right after they brought […]

2020-07-15T11:23:21-04:00July 15th, 2020|family, family experience, pediatrics|0 Comments
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Who’s Listening to Hospitalized Patients with Hearing Impairment?

In my early years in nursing, attention to patients’ hearing deficits was a big deal. It was assumed that we couldn’t properly care for someone if that person couldn’t hear us. Every admission assessment included an appraisal of the patient’s hearing: “Hears ticking watch eight inches from each ear,” or “hears quiet conversation at three feet without difficulty,” or “patient states deaf in right ear,” or some other specific description.

When hearing difficulties were evident, a sign was prominently posted over the head of the bed, a note in red ink was written in the Kardex (those quick-reference summaries of key points on all patients that were updated daily), and a special label was affixed to the front of the (paper) chart.

A communication impediment, often ignored.

Why don’t we do these things anymore? I see little indication that the needs of a hearing-impaired patient are a clinical priority. The deficit is not noted on the whiteboards that seem to be standard issue in patients’ rooms today. As a hospital visitor, I watch with dismay as staff fail to acknowledge acutely obvious hearing impairments.

A family member has tumor-induced hearing loss in one ear, and I explain on every admission that people need to speak up when addressing him. I ask them to make use of his intact […]

2018-06-12T12:53:06-04:00June 12th, 2018|Nursing, nursing research, patient experience|1 Comment
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Views expressed on the blog are solely those of the authors or persons quoted. They do not necessarily reflect AJN’s views or those of Wolters Kluwer Health/Lippincott Williams and Wilkins.
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