Why Do Children With Visible Disabilities Make Us Uncomfortable?

What do you do when you see a child who has obvious visible disabilities? Do you say hello? Do you turn away?

In this month’s Viewpoint, “Afraid to Notice: On Responding to Children with Visible Disabilities,” pediatric nurse Lindsey van Gennep talks about her experiences working with medically fragile children in the community. She has learned a lot about kids with various abilities and their capacity to simply be “kids,” and also a lot about how people react to children who are different.

“While taking them on field trips or to doctor’s appointments, I’ve noticed looks of sadness and pity. I’ve noticed the mothers who, assuming the child is mine, look at me as if I must have abused substances during pregnancy—looks of disgust.”

Pretending not to see.

But van Gennep found that the reactions of people who didn’t even acknowledge the child she was with could be even more upsetting.

“Four women with children walked by. They didn’t stare at her, or at me. Instead, they quickly looked away, as if they had just seen a stranger naked. They looked away—out of embarrassment that they had looked at all. The passing children followed their mothers’ cues and snapped curious eyes away from my patient.”

[…]

2018-09-12T11:28:10-04:00September 12th, 2018|Nursing|0 Comments
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Is This Child in Pain?

When the child is nonverbal.

Nurses regularly assess patients’ pain. It’s a much more difficult task when the patient is unable to articulate what they’re feeling or even where they hurt. How much more difficult is it when the patient is a nonverbal child with a complex medical history?

In this month’s AJN, Brenna Quinn and colleagues share their research on pain in these children. They define “children with medical complexity” as “those having a cognitive-chronological age mismatch, profound developmental delays, limited or no verbal abilities, and multisystem diagnoses, and who are completely dependent on others for care.” These kids tend to experience pain more frequently (often, daily or weekly), and are more likely to be hospitalized than are neurotypical children.

A ‘wide range of pain-associated behaviors.’

While it is often harder to assess pain in children than in adults, most children have a narrow range of “pain behaviors” that are easily identifiable. This isn’t true of children with medical complexity; some may even seem, from their expressions, to be laughing when they are in pain.

“More than 40 pain assessment tools have been developed for use in infants and children who cannot provide self-report. Despite the availability of these tools, the evaluation of pain in children with medical complexity remains challenging, in […]

2018-08-13T08:09:58-04:00August 13th, 2018|family caregiving, Nursing, Patients, pediatrics|0 Comments
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August Issue: Pain in Nonverbal Children, Sepsis Update, Particulate Matter Exposure, More

“I didn’t really know what to do . . . . This happened to other people’s families, not mine. I was supposed to be reading the monitors and titrating the drips. I was supposed to be taking care of the patient. I was supposed to be comforting the family. I was the nurse.” —Tonja Padgett, author of this month’s Reflections essay, “The Crazy Aunt or the Nurse“

The August issue of AJN is now live. Here are some of the articles we’re pleased to have a chance to publish this month.

CE: Original Research: Pain in Nonverbal Children with Medical Complexity: A Two-Year Retrospective Study

Children with medically complex conditions often experience pain, but in the absence of self-report, assessing pain can be challenging. The authors of this article sought to describe the signs and symptoms parents of such children find worrisome, the sources of pain in these children, and how to best assess their pain.

CE: A Review of the Revised Sepsis Care Bundles

An update on recent revisions to the sepsis care guidelines, including development of the new one-hour bundle, plus screening and assessment tools to identify sepsis in the ICU, in the ED, on the medical–surgical unit, and outside the hospital.

Environments and Health: Nursing Practice and Particulate Matter Exposure

Both indoor and outdoor particulate matter pollution […]

2018-07-27T09:18:49-04:00July 27th, 2018|Nursing|0 Comments
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What the Patient Knew: Communication and Patient Safety

Anticipating emergencies.

by rosmary/via Flickr

At the start of every shift after receiving report, I take a moment to consider what emergencies I might anticipate for my particular patient in our PICU. Monitor for excessive bleeding in a liver failure patient. Monitor for an altered neurological status in a patient with a head bleed. I try to envision how I would start CPR in the room if required. I try to be thorough in checking that all my emergency equipment is present and working. I try to keep patient safety at the forefront of my mind and priorities.

I came to work one day and received report about my 9-year-old patient who was post-operative day one from a planned craniofacial surgery. He would remain nasally intubated with eyes sutured shut for a few days until the swelling had reduced, and then would return to the OR to be extubated and to have the eye sutures removed. I’d had patients like him before and felt he would be very easy to keep safe, especially given that per handoff report, he was comfortably sedated and not overly agitated when he did briefly waken with nursing care.

A patient’s question.

As I got to know him through the first couple hours of my shift, I found that he was indeed comfortably sedated though easily […]

2018-05-24T10:08:09-04:00May 24th, 2018|Nursing, patient safety, Patients|0 Comments
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Recognizing Delirium in Hospitalized Children

A hospital can be a scary place for any of us, but the experience is likely to be especially upsetting for children. An unfamiliar environment, possibly painful procedures, immobility, food that’s not from home (or no food), and disturbed sleep are hard on most people. A child’s particularly vivid imagination may exacerbate an already-frightening experience. It’s not surprising that delirium can occur in hospitalized children.

Characteristics of pediatric delirium.

Delirium in children has not been explored to the extent that it has been in adults, but research suggests its manifestations in either group can include five characteristics: agitation, disorientation, hallucinations, inattention, and sleep–wake cycle disturbances. Some evidence also suggests that children with delirium may have a more labile affect than adults, and more severe perceptual disturbances. […]

2018-04-25T10:05:56-04:00April 25th, 2018|Nursing, pediatrics|0 Comments
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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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