Sickle Cell Disease in Children and Adolescents: Aligning Practice with Guidelines

CDC report points to areas for improvement.

The Morbidity and Mortality Weekly Report (MMWR) released by the Centers for Disease Control and Prevention on September 20, 2022, highlights an important opportunity for nurses to provide evidence-based care to children with sickle cell disease (SCD). The report highlights poor compliance with guidelines recommending that children ages 2 to 16 with sickle cell anemia (SCA)—the most common and often most clinically severe form of the disease—should receive transcranial Doppler (TCD) ultrasound screening and that hydroxyurea (HU) should be offered for all children with SCA ages 9 months and older.

In the past, children with SCD usually did not survive past age 20 because of infections/sepsis and stroke. Children with SCD now can live much longer, into their 40s, 50s, and 60s, as a result of the use of penicillin to prevent sepsis and screening for children at high risk for stroke. According to current guidelines for children and adolescents with SCA, when children are screened for stroke by TCD, those at high risk can be identified and referred for monthly transfusions, a practice that has been found to prevent stroke. In addition, there is much evidence supporting the use of HU, including prevention of severe pain episodes, acute chest syndrome, and hospitalization.

2022-09-29T10:59:11-04:00September 29th, 2022|Nursing|0 Comments
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October Issue: Substance Use Among Nurses, RN Involvement in Staffing Policymaking, More

“Under my leadership—like that of the editors before me—these pages will serve to document and transform clinical practice and provide a space for nurses to contribute their voices to matters affecting our world today.”—AJN editor-in-chief Carl Kirton in this month’s editorial

The October issue of AJN is now live. Here’s what’s new. Some articles may be free only to subscribers.

CE: The Impaired Nurse

A guide to early recognition, diagnosis, and treatment of substance-related disorders among colleagues in the workplace.

Original Research: ‘It Would Be Nice to Think We Could Have a Voice’: Exploring RN Involvement in Hospital Staffing Policymaking

This qualitative study examined staff nurses’ perceptions of factors that hinder or support nurse involvement in hospital nurse staffing policymaking—and how nurses are, or would like to be, so involved.

Historical Feature: A Long History of Abortion

In response to the Supreme Court’s decision ending the nationwide right to abortion, the author takes a close look at abortion in American history and AJN’s archives, including the various roles played and challenges encountered by nurses.

[…]

2022-09-26T08:56:14-04:00September 26th, 2022|Nursing|0 Comments
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In the Nick of Time: Advance Care Planning in the ICU

Marian Grant, palliative care NP

I’m a health policy consultant for national palliative care organizations and often advocate for advance care planning, a process that helps people with serious illness prepare for future decision-making. I also work as a palliative care nurse practitioner (NP) in an academic medical center where I see the real-life aspects of advance care planning.

I recently saw a patient whose case typifies how advance care planning and policies to support it can work. A middle-aged woman with metastatic breast cancer at our cancer center had been seen the day before by the palliative care NP there. The NP was called to help assess the patient’s new-onset dizziness. While seeing the patient, she also spoke to her about her cancer status and suggested completing an advance directive. According to the NP’s note, the patient’s son, who was there with her, seemed surprised that things were not going as well for his mother as they had hoped.

The ‘Five Wishes’ advance directive.

Later in that same visit, the patient became profoundly hypotensive and was sent to the emergency department and then admitted to the medical ICU. The team there put in a request for a palliative care consult for metastatic cancer. I first saw the patient the next morning. She […]

2022-09-22T10:08:13-04:00September 22nd, 2022|end of life, Nursing, Palliative care|1 Comment
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We Haven’t Made You Better: Orthopedic Trauma and Emotional Healing

Learning that healing the body isn’t always enough.

For much of my career as a trauma ICU nurse and orthopedic trauma nurse practitioner, I focused on building my knowledge of pathophysiology and mastering the assessment and procedural skills required to care for trauma survivors. After a decade of practice, I felt like I had entered the “expert” phase of clinical competence described by Dr. Patricia Benner in AJN in 1982.

But I was completely ignorant of a giant hole in my practice. A trauma survivor pointed out this gap during a routine clinic visit. Ms. H was six months removed from an ankle fracture she’d suffered in a motor vehicle collision on her way to work one morning. On exam, she had regained full strength and range of motion, the fracture was healed on radiographs, and her pain was limited to a minor ache after extended activity. She’d healed remarkably.

I told her that she had done an excellent job with her recovery and could resume her life, including going to work. I’ve come to believe that Ms. H’s response to this assertion changed my entire perspective on patient care. “I can’t go back to work,” she said. “Since the accident, I can’t get in a car without having panic attacks.”

I was […]

2022-09-16T11:39:37-04:00September 16th, 2022|Nursing, nursing research, Patients|0 Comments
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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 care for […]

2022-09-14T10:01:23-04:00September 14th, 2022|family experience, nursing roles, pediatrics|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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