Overcoming Stigma in Sickle Cell Disease

Overcoming Stigma in Sickle Cell Disease Presented by: Tosin Ola-Weissmann, BSN, RN

What is Sickle Cell?
What is sickle cell?
Hereditary
Evolutionary response to malaria
Population sickle cell affects
Millions worldwide
Globalization
Lifespan
Nature of SC

What Does Having SC Feel Like?
Anemia: Fatigue, exhaustion, low energy
Excruciating Pain
Side effects
Insomnia
Depression
Jaundice
On top of this, we deal with negative perceptions and ignorance of sickle cell in our homes, hospitals and communities
People with SC trait can exhibit these symptoms but to a milder intensity

Triggers of a SC Pain/Crisis
Dehydration
Stress
Infection
Temperature changes
Swimming
Weather change
Pressure changes
Snow sports
Flying
Periods
Sex
Rigorous physical activity

Sports & Sickle Cell
Overexertion requires higher metabolic and oxygen demand
Overcompensation by heart and lungs
Heart attack or respiratory failure
Avoid this trigger
Pace yourself
Pain is a warning signal
Hydrate
Take breaks as needed

Basic Treatment Principles
Hydration
Oxygenation
Pain Management
Blood Transfusions
Bone Marrow Transplant
Hydroxyurea
Herbal remedies
Nutraceuticals
Dietary
Lifestyle

SC Voices
Sickle cell pain is indescribable. I remember when I was in labor, I didn’t make a sound. My mother had to ask, "Why are you so quiet, doesn't it hurt?"
I responded, "Mom, I have sickle cell, this is nothing..." ~Belinda Sylvestre

Why do you think SC patients encounter so much ignorance, stereotyping and negative attitudes in our schools, communities and the healthcare setting?

Myth #1: SC Patients are Drug Addicts, Drug-Seeking, and Not Really in Pain
Chronic pain
Under-dosing/Tolerance
Delay in administration of analgesics
Pseudo-addiction
‘ 3 shot rule’ and Quick discharges lead to patients returning to the ED within 3 days from discharge STILL IN PAIN!
Reference: Solomon, LR. Treatment and prevention of pain due to vaso-occlusive crises in adults with sickle cell disease: an educational void. Blood. 2008; 111:997-1003

In a US survey, emergency department physicians significantly overestimated the prevalence of substance abuse, although research supports that less than 10% of patients with sickle cell disease meet the clinical criteria for dependence on or abuse of opioid analgesics
Reference: Elander J, Lusher J, Bevan D, Telfer P. Pain management and symptoms of substance dependence among patients with sickle cell disease. Soc Sci Med, 2003;57:1683-1696

Myth #2: SC Patients Over-use the ED
Do CHF/COPD patients over-use the ED? What about diabetics?
Patients with SCD with high utilization rates may actually have more severe anemia, more painful episodes, greater pain and distress ratings, and worse quality of life compared to those with lower utilization rates.
Reference: Aisiku, I. P., Smith, W. R., & McKlish, D. K. (2009). Comparisons of high versus low emergency department utilizers in sickle cell disease. Annals of Emergency Medicine , 53 , 587-593.

SC Voices
I detest going to the emergency room or getting admitted to the hospital for my disease. I will manage it at home as much as I can, but if I need to go to the hospital, it is because the pain is uncontrollable, and nothing in my arsenal works. I do go to my doctor’s visits, and have a healthy grasp of my disease process, but I still have to go to the emergency room when in an acute pain crisis. Most of the time, even if I go to my doctor’s office, it is just a waste of time, because he will tell me to go to the ED.

Myth #3: SC Patients are Difficult
Traumatized, embittered
Tremendous pain
Much more sensitive to delay and negative attitudes by personnel
The proactive ‘drug seeking’ behavior is as a result of previous negative experiences in the hospital setting. If sickle cell patients tend to be seen as cranky, aggressive, demanding, or with a chip on their shoulder; consider that it could well be a reaction to the treatment that they have received in the past, and understand the connection between your attitudes and the response of the patients.

SC Voices
I've been in the ER 8 times last year and admitted 4 times. All times there have been at least one nurse that comes in and treats me like an addict or like I completely don't know how much medicine my body can sustain. I usually end up not getting enough medicine to take the edge off the crisis pain, and in the long run, my crisis lasts longer because of (not to be rude) ignorant nurses who don't know the first thing about a sickle cell pain crisis. ~Simone

SC Voices
I abhor the term "frequent flyer." The ER staff at the hospitals in the DC area use that term to identify someone who has had to return to the ER often. Also, it's always assumed that you are there to seek drugs instead of medical care. I'm ...often told I'm not like the average SC patient because when I come in I'm "genuinely" sick. That really bothers me that we are judged so harshly because our treatment includes narcotics. They really don't understand and make me feel as if they don't care either. ~ Kena

Things You Shouldn’t Say to your Sickle Cell Patient…
So how long have you had sickle cell?
You don’t look/act/talk like most sicklers
Your lab work says you are ready to be discharged…
Pain
How can you still be in pain?
You can’t be in pain and ____ (talking, eating, sleeping, watching TV, on the computer)
You should be used to this pain by now

Assess Patient For
Anemia
Pain
Infections
Constipation
Insomnia
Jaundice
Respiratory distress
Acute chest syndrome
Renal and liver function
Depression

Complications of SCD
Strokes
Gallstones
Splenic Sequestration
Avascular Necrosis
Iron Overload
Migraines
Leg ulcers
Priapism
Renal failure
Acute chest syndrome
Pulmonary hypertension
Retinal damage/blindness
Deafness

SC Patient as a Teacher
Your patient knows more about their body and their sickle cell than you think.
Listen and learn
Collaborate with your patient on their plan of care
Reference: Campbell, A. D., Ross, P. T., Kumagai, A. K., Christner, J. G., & Lypson, M. L. (2010). Coming of age with sickle cell disease and the role of patient as teacher. Journal of the National Medical Association , 102 , 1073-1078.

Conclusion
For more information about the Sickle Cell Warriors, visit http://sicklecellwarriors.com
Email me at
[email_address]
Connect with SC patients on Facebook/SickleCellWarriors

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Overcoming Stigma in Sickle Cell Disease

by Spiderella on Jan 12, 2011

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