Download presentation in PowerPoint format.

Addressing the Psychosocial Needs of
Individuals Living with Sickle Cell Disease
8th Annual Sickle cell Disease Educational Seminar 2016
The Culture and Politics of Pain
Coretta Jenerette, PhD, RN, CNE
Pat Corley, RN
OBJECTIVE
Describe the cultural and political aspects of living with
SCD that lead to poor psycho-social health outcomes
Culture
Politics
Challenges for Adults with Sickle Cell Disease
3
PERCEPTION OF SICKLE CELL
Genetic disorder
Affecting 100,000 in
US
Hallmark: PAIN
REALITY OF SCD
5
CULTURE OF SICKLE CELL
SICKLE CELL FIRST DESCRIBED IN THE
LITERATURE
• James Herrick was a doctor in
•
Chicago, USA, and wrote
about his observations of a
patient (dental student from
the West Indies) with severe
anemia.
When blood samples were
viewed under the microscope
Herrick noted “peculiar
elongated and sickle-shaped
red blood corpuscles”.
7
TODD SAVITT, PHD: MEDICAL HISTORIAN
• Savitt, T. L. (1981). The invisible malady: Sickle cell anemia
in America, 1910-1970. Journal of the National Medical
Association, 73(8), 739-746.
• Savitt, T. L., & Goldberg, M. F. (1989). Herrick's 1910 case
report of sickle cell anemia: The rest of the story. JAMA,
261(2), 266-271.
• Savitt, T. L. (2010). Tracking down the first recorded sickle
cell patient in western medicine. Journal of the National
Medical Association, 102(11), 981-992.
8
Rare Plus….
“The problem with SCD is
that it is both rare and
prevalent in historically
disenfranchised
populations. So it is
almost invisible to the
American eye.”
Wally Smith, MD
9
PAIN OF SCD VS CANCER PAIN
CANCER PAIN
 Non-ischemic
 Continuous
 Progressive
 Predictable
 Terminal event
 Not questioned
 Many objective correlates
 May be absent
 Few to no ED visits
 Longitudinal specialty care
SICKLE CELL PAIN
 Ischemic
 Intermittent
 Remitting
 Unpredictable
 Throughout life
 Questioned by healthcare
providers
 Few objective correlates
 Prominent feature of the
disease
 Frequent ED visits
 Episodic care
(Smith & Alsalman, 2012)
10
DISPARITIES IN PAIN MANAGEMENT
• Racial/Ethnic Minorities
o
Less adequate pain treatment
o
o
Considers age, gender, pain intensity
Pain intensity reporting contributes
• Provider treatment disparities
o
o
Own cultural beliefs
Stereotypes
Pain
o Minority patients
o Use of narcotics
o
(Mossey, 2011)
“If you want to be dehumanized,
go to the ED”.
12
CARE-SEEKING
Mean Pain Score: 8.6
(SD 1.4)
(Jenerette, Brewer, & Ataga, 2014)
13
Nurses’ Attitudes & Health-Related
Stigmatization
14
WHAT IS HEALTH-RELATED STIGMA?
refers to a form of devaluation, judgment or
social disqualification of individuals based
on a health-related condition
(Bediako and colleagues, 2014; Jenerette & Brewer, 2010;
Jenerette and colleagues, 2012)
IMPACT OF HEALTH-RELATED STIGMA
• Higher levels of depressive symptoms
• Low self-esteem & feelings of hopelessness
• Psychological disturbances (depression and anxiety)
• Diminished ability to cope with pain
Anie & Green, 2002; Edwards et al., 2005; Jenerette,
Funk, & Murdaugh, 2005; Ohaeri et al., 1995;
POLITICS OF SICKLE CELL
Number of federal government requests for applications funded for sickle cell disease and
cystic fibrosis: 1975–2004
(Smith and colleagues, 2006)
©2006 by American Academy of Pediatrics
2015 NIH Funding Comparison
EVIDENCE-BASED PRACTICE
•
Do not consider the psycho-social
aspects of living with SCD.
o
o
o
o
o
Depression/anxiety
Fatigue
Insomnia
Social isolation
Health-related stigma
o
o
o
o
o
Public
Healthcare providers
Social support
Education
Employment
(Yawn and colleagues, 2014)
20
WRAPAROUND CARE
a philosophy of care and defined planning process
SUMMARY
• Challenged by the intersection of culture and politics.
• Culture might be improved with…
o
o
o
Increased SCD awareness
Additional SCD education for healthcare provider
Better prepare individuals with SCD to navigate the
healthcare system
• Increased SCD funding with an even political playing
field
• The goal is comprehensive wrapraound care
SUMMARY FOR NURSES
• Nurses should …
Care for the whole patient.
 Listen.
 Advocate for vulnerable, underserved patients
 Believe pain is what the patient says it is and occurs
when the
patient says it does.
 Be on the frontlines of creating and using EBP

It’s time for nursing to make a difference in the lives of
patients living with SCD.
SUMMARY FROM A SICKLE CELL WARRIOR
I Could’ve Died last night
QUESTIONS
Thank you!
CONTACT INFORMATION
Coretta Jenerette
[email protected]
Pat Corley
[email protected]