Transcript Adolescents` Interest in Bereavement

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…to talk about
and focus on the
circumstances.
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…to mourn the
loss of the former
self-image and
way of being in
the world.
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…to acquire
information,
support, and learn
about the illness
and disease process.
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…to make personal
meaning of the
experience.
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Getting a new medical diagnosis often means
that one must adapt to a change in health
circumstances (one’s own or a family
member’s).
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The news often will involve treatment that
requires medical adherence to restore or
maintain health.
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Onset
 Acute…gradual
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Duration
 Brief … intermittent … lifelong
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Course
 Remitting … relapsing
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Predictability
 Known and predictable … unknown or
unpredictable
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Prognosis
 Normal life … terminal
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Burdens of Care
 None … extensive
▪ Medications, monitoring, appliances, personal
assistance…
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Transmission
 Genetic…traumatic…contagious
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Obviousness
 Blatant…invisible
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Social Tolerance
 Stigmatizing…acceptable
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Who is Anna Sthesia?
Cystic Fibrosis or…
 Sixty-five roses
 Sick-sick fibrosis
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Sickle cell anemia or…
 Sick-as-hell anemia
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Diabetes or…
 Die-a-betes
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Adherence to (or compliance with) a
medication regimen generally addresses:
 The extent to which patients take medications as
prescribed or otherwise follow health care
providers’ recommendations.
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I prefer the word "adherence", because
"compliance" suggests passively following
orders, rather than a therapeutic alliance or
contract.
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Reports of adherence rates for individual
patients generally cite percentages of
prescribed doses of medication taken over a
specified interval.
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Some studies further refine the definition by
focusing on dose taking (i.e., prescribed # of
pills each day) and timing (taking meds within a
prescribed period).
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Adherence rates typically run highest
among patients with acute conditions.
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Persistence among patients with chronic
conditions often declines dramatically
after the first six months of therapy.
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Average rates of adherence reported in clinical trials
can run misleadingly high due to attention focused
on participants and selection biases.
 Even so, average adherence rates in clinical trials run only
43 to 78 % among patients receiving treatment for chronic
conditions.
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No consensual standard exists for what constitutes
adequate adherence.
 Some trials consider rates greater than 80% acceptable,
while others consider rates of greater than 95 % mandatory
for adequate adherence (e.g., treatment of HIV infection).
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Physicians have little ability to recognize nonadherence, and interventions to improve
rates have had mixed results.
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Poor medical adherence accounts for
substantial worsening of disease, death, and
increased health care costs.
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Of all medication-related hospital admissions
in the U.S., 33 to 69 % follow poor medication
adherence, at a cost of approximately $100
billion annually.
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Direct methods
 observed therapy
 measurement of concentrations of a drug, its metabolite, or a chemical
marker
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Indirect methods of measurement of adherence include
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asking the patient about ease in taking prescribed medication,
assessing clinical response,
performing pill counts
ascertaining rates of refilling prescriptions
collecting patient questionnaires
using electronic medication monitors
measuring physiologic markers
asking the patient to keep a medication diary
asking the help of a caregiver, school nurse, or teacher.
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Consider consequences of
the specific threats to
patient’s or family
members’ psychological
adjustment.
 How will life activities and
goals be disrupted.
 The more complex and
disruptive the regimen, the
greater the likelihood of
adherence problems.
Koocher, G.P., McGrath, M.L., & Gudas, L. J. (1990).
Typologies of non-adherence in cystic fibrosis.
Journal of Developmental and Behavioral Pediatrics,
11, 353-358.
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Identifying the
basis for
deviating from
the prescribed
course of
treatment is
the first step.
Is information
available to
patient and
family?
 Is the form of
information
comprehensible?
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Is the
information
appropriate to
age and culture?
Are the
rationales for
components of
treatment clear?
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Consider the
practitioners’
behavior.
 “Referent
power” issues
“Hi, my name is Kevin.
I’ll be your doctor for today.”
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Explore social or
cultural pressures.
Assess
environmental
factors
Address
complexity of
regimen
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Assess for
psychological
factors
 Attributions
 Motivations
 Defense
mechanisms
 Psychopathology
“This is gonna hurt like hell.”
“Before each of you, you will find a bitter pill
and a glass of water”
Czajkowski, D. R. & Koocher, G.P. (1986). Predicting
Medical Compliance among Adolescents with Cystic
Fibrosis. Health Psychology, 5, 297-305. Reprinted
in: Melamed, B.G., Matthews, K. A., Routh, D. K.,
Stabler, B., & Schneiderman, N. (Eds.) (1988). Child
Health Psychology. Hillsdale, NJ: Lawrence Erlbaum
and Associates, pp. 335-343.
(35% non-adherent in CF sample) N = 40 ages 13-23.
“Well, how long do you want to live?”
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What has your doctor asked you to do in
order to best manage your illness (or to stay
healthy)?
What are the hardest pieces of medical
advice to follow?
Which parts to you skip or miss most often?
What gets in the way of following the
recommendations?
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Osterberg, L. & Blaschke, T. (2005). Drug
Therapy: Adherence to Medication. New
England Journal of Medicine, 353, 487-497.
Rapoff, M. A. (2009). Adherence I Pediatric
Medical Regimens (2nd Ed). New York:
Springer.
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Methods available to improve adherence can
be grouped into four general categories:
 patient education
 improved dosing schedules
 increased hours when the clinic is open (including
evening hours), and therefore shorter wait times;
and
 improved communication between physicians and
patients.
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Most methods of improving adherence
involve combinations of behavioral
interventions and reinforcements in addition
to increasing the convenience of care,
providing educational information about the
medical condition and the treatment, and
other forms of supervision, monitoring, or
attention.
Hart, C., Harrison, A., & Hart, C. (2006). Breaking Bad News. In Mental
health care for nurses: Applying mental health skills in the general
hospital. (pp. 82-94): Blackwell Publishing: Malden.
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Most important: how do we know that the news we
are about to impart will be perceived by the patient
as 'bad'?
 A patient may receive definite news--whether or not it is
perceived by clinicians as 'bad'--as conferring a degree of
certainty and feel grateful for this, particularly if it confirms
a long held suspicion or belief.
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Equally important: information that the bearer may
have thought of as relatively unimportant may have
a severe impact on the patient and/or family
members.
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Who should tell the patient the particular news.
 Someone who knows him/her.
 The person who has all the information available, to cover
any question the patient and/or relatives may wish to ask.
 The primary care physician, as the person with overall
responsibility for the patient's treatment, or a 'specialist' in
such matters as breaking bad news?
 Communicating bad news is most closely associated with
having to tell patients about a terminal prognosis. As such,
much of the literature comes from the areas of critical care
and palliative care.
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Try not to
protect yourself
with distancing.
 Just because
you have bad
news should
not prevent you
from offering
support
“You have a serious illness of an undisclosed nature.”
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Try to
understand
and respect
the
perspective
of the
recipient.
“Well, I guess I’ll have the
ham and eggs.”
“It was touch and go for a while, young man,
but I think we were able to save your leg.”
 Deliver
the
bottom
line first,
then
explain.
“You’re doing it wrong.”
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The "good
news/bad news
approach does
not help if the
news is only
really bad.
“Which do you prefer; sharing a room with
a person who’s slightly out of his mind
from heavy medication, or a room with a
person who’s throwing up all the time?”
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Have a plan or help
the recipient to
engage in
developing one.
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When stress is high
written information
can help.
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Set up ongoing
support and
availability.
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Be human,
and be
present.