Lived Experiences of Adults with
Sickle Cell Disease and Pain:
Voices Untold
Maxine Adegbola, PhD, RN, CNE, ANEF
Assistant Professor
The University of Texas at Arlington
February 27 to March, 2013
SNRS, Little Rock, Ark.
Acknowledgement
• Research was conducted with:
• Support from Pain and Associated Symptoms:
Nurse Research Training [NINR/NIH, T32
NR011147]
• Funding from STTI, Delta chapter
• Gratitude to participants
• University of Texas at Arlington
• Reference: Adegbola, Barnes, Opollo, Herr, Gray, & McCarthy
[2012]. Voices of Adults Living with Sickle Cell Disease Pain.
Journal of National Black Nurses Association,23:2
Objectives
• Describe the lived experience of adults with sickle
cell disease pain (SCD) highlighted by their personal stories
• Discuss implications for clinicians and providers who
serve individuals with SCD and wish to personalize care,
thus reduce health disparities
Practice Gap:
Inadequate clinical management of individuals with
sickle cell disease. Individuals , after the
presentation, will consider incorporating new
information into their practice and care of individuals
with sickle cell disease.
Background
• Adults with SCD are living longer [Platt et al., 1994;
Quinn et al, 2004]
• In the past,
– Pain trajectory different than previously thought
[Smith et al,2008]
– Researchers assumed that SCD pain was only
episodic and acute
– Did not thoroughly or accurately describe SCD
chronic pain from the participant’s perspective
– Quality of life concerns
– Chronic pain not clearly described/defined
[Taylor et al,2010]
Purpose
To remedy this gap in knowledge, the
researchers aimed to :
• advocate for the client's voice in SCD
pain description and treatment
approaches
–Lived experiences
Method
• Design: Qualitative
• Phenomenological approach, Heideggerian
hermeneutic
• Sample:
• Purposive sample of 13 African American adults
living with SCD
• 18 years & older
• Recruited from a national SCD support group
• Consented individuals via telephone
• Each participant described day-to-day experiences
of living with SCD-related chronic pain.
Findings
• Sample:
– The 13 participants African-American.
– 3 males and 10 females
– average age of 31 years (range = 21-54 years)
Genotype
– 11 HbSS, 1 HbSc, 1 βeta0 Thalassemia
– 9 single
– 3-10 hosp admissions/unscheduled visits, year before study
• ANALYSIS:
– description of the pain experience
– pain scales don’t work
– managing pain
– managing relationships
Description of Pain Experiences
• Adults with acute pain described their pain
as “unbearable,"
– "excruciating,"
– "sharp," "penetrating,"
– "like a hammer, beating and beating,"
– "throbbing," "stabbing," and "squeezing.”
• "a pain that I wouldn't wish on my worst enemy."
• "It's like being hit by a truck and getting run over."
• "The sickle cell pain is what takes you down. You
can't move; can't do anything."
Description of Pain Experiences
• "The majority of time, my life has been filled
with pain.“
• Participants described chronic pain as
– “constant,"
– "every day,"
– "regular basis,”
– usually “managed at home.”
Pain Assessment:
Scales do not work
• "The questions they ask are outdated . . .
the numbers are for children who don't
understand pain and can't register it”.
• “If you are going to use a scale of 0-10, then
what I've always heard is the worst pain will
never be felt. If I tell you it's an 8 compared to
the worst pain I've ever felt, it's probably a 25
on a scale of pain for an average person, so I
think it's deceptive”.
Pain Assessment: Scales do not
work
“I just think the questions they ask adults are
outdated I don’t think that they try to encompass
all what the adult is going into to be a reason why
they might be having this type of pain”.
“So to me you have to identify other parts of their
lifestyle and everything to be able to make a
good diagnosis and to whether they are having
chronic pain because you know something’s
worn out in your body or because of something
that they might be experiencing emotionally”.
Pain Assessment:
Scales do not work
• “For adults it may be quite different.“
• For patients who have lived with chronic pain
in the range of 8 to 10, acute pain was "off the
charts“
• That is, pain could not be accurately &
adequately described by existing pain scales,
as used currently.
Managing Pain
• Learned to balance their daily activities, to make
decisions about jobs, relationships, and family activities
based on their pain levels, and to choose effective medications.
– with certain pain triggers, such as cold weather, they had to choose
indoor jobs or allow for sick days
• In addition to using pharmacologic agents, participants used
natural approaches to pain management such as heat,
massage, or phytochemicals from vegetable and fruit juices.
• Others coped with the pain by using a positive attitude, faith
in God or spirituality, and a support group.
– “having a relationship with a higher power, God that I tap into
to help me cope.”
Managing Relationships
Personal
• Put on a “mask”
– pretended to be normal in order to carry out
routine activities with friends. One participant
said, "I always say I am 'OK' because I don't want
people to act like I can't do things. I know how to
put on a mask."
– Adults with SCD have to balance their desire to be
treated normally in personal relationships with
their need to be clearly understood when they
need help or understanding in coping with pain.
Managing Relationship
• Professional
• One participant described her frustration during a recent
admission: "Your hematologist might be able to stop by, but
you are actually under the care of hospitalists, which I really
don't like because I don’t think they have enough history to
be able to treat me effectively.“
• Participants wondered whether their pain levels and
symptoms would be believed and taken seriously by HCPs
• Labels: "Oh, it's the sick blood who wants her pain medicine
again." "drug addict"
– labeling was hurtful on an emotional level in addition to their physical
pain.
Managing Relationships
• Negative consequence of putting on a mask
– may cause HCPs to also discount their pain,
– leading to inadequate or no treatment in the
emergency department.
– "I may not appear to be in as much pain as I'm
telling you, but I'm saying, hey look, I got about
three more minutes and I'm about to go off in here
if you don't hurry up."
– Another participant explained, "I would really like
people to know that chronic pain does not mean
that it is not pain or that I'm so used to it that it
does not need to be treated. I'm having pain that
must be treated because it's not going anywhere.”
What?
– Perceived inadequacy of pain assessment
• scales do not capture multidimensionality of pain
– Desired to be valued by some
“…at the end of the day they look at me like I’m still a
human being, just like a person without sickle cell”.
– Sub-therapeutic healthcare provider[HCP]-patient
relationships
– ‘Masks’
– HCPs mistrust of pain symptoms
“mental & emotional pain”
So what?
–Human impact eroded
–Intentional caring lacking
"I would really like people to know that
chronic pain does not mean that it is not
pain or that I'm so used to it that it does
not need to be treated. I'm having pain
that must be treated because it's not
going anywhere.”
?
• Now what?....
Now what?
• Professional & ethical responsibility
• Intentional caring
• Pain is “whatever the experiencing
person says it is, existing whenever
the experiencing persons says it
does.”
[Margo McCaffery, 1968]
Clinical Implications
• Pain assessment
• Using comprehensive bio-psycho-sociospiritual [holistic]assessment
• Provider knowledge about disease trajectory
• Improved professional-patient relationships
– Therapeutic relationships
– Trust/veracity
– Intentionally care
Future Research
• Modify/update/amend pain assessment
• Participate in collaborative intra-professional
research to identify objective proxy
measurement for pain
• Identify new models of care
– targeted to the population, and tailored to the individual
(Brown, 2012).
• Intervention studies
Conclusion
The findings provide data to:
• Direct healthcare providers in care
delivery unique to this population
“So to me you have to identify other parts of their lifestyle and
everything to be able to make a good diagnosis and to
whether they are having chronic pain because you know
something’s worn out in your body or because of something
that they might be experiencing emotionally”.
• Support further research aimed at the
assessment and management of SCDrelated chronic pain among adults.
Nurses….Care
“Our lives begin to end the day we
become silent about things that matter.”
Dr. Martin Luther King Jnr.,
1929- 1968
How to Care..
• With Intentionality
– targeted to the population
– tailored to the individual [Brown, 2012].
Questions
Thank You!
Thank You!
Voices Untold
Maxine Adegbola, PhD, RN, CNE, ANEF
Assistant Professor
College of Nursing
411 S. Nedderman Drive
Arlington, Texas 76019-0407
office: Pickard Hall # 553
T 817 272 2776// F 817 272 5006// C 214 876 9767
e-mail adegbola@uta.edu