BARRIERS TO ADHERENCE
AND COMPLIANCE:
BEHAVIORAL,
CULTURAL AND OTHER
CHALLENGES
Presented by
Kristine Carrillo, LISW
This session will:
• Assess needs and identify issues that contribute or
hinder asthma management including:
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educational
socioeconomic
psychosocial
cultural
behavioral and
environmental factors
• Discuss implementation strategies that address
barriers
Asthma Management Goals
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Be free from severe symptoms
Sleep through the night without symptoms
Participate fully in activities of your choice
Not miss school or work due to asthma
Have fewer or no emergency care visits
Use meds with as few side effects as possible
Needs Assessment of Risk Factors
• Readiness for learning
– Language
– learning disability
– difficulty hearing or
seeing
– In children it also
includes:
• Age-appropriate physical
development (e.g., fine
and gross motor skills)
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Socioeconomic status
Family stressors
Psychosocial status
Cultural barriers
Health care beliefs
Quality of Life Questionnaires
Validated Instruments for Assessment and
Monitoring of Asthma:
• Asthma Control Questionnaire (Juniper et al.
1999b)
• Asthma Therapy Assessment Questionnaire
(Vollmer et al. 1999)
• Asthma Control Test (Nathan et al. 2004)
• Asthma Control Score (Boulet et al. 2002)
NAEPP. EPR-3, page 80.
Build The Partnership
• Recognize the importance of culturally sensitive
approaches
• Explore barriers to adherence with every patient
• Fit and simplify the plan to the patient’s
– family daily routine
– ability to afford medicine or the environmental
change
– family’s cultural view
Build The Partnership
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Use open communication
Elicit and allay fears and concerns
Dispel myths that they may believe
Clarify patient’s expectations and goals
Listen and adapt - Ask how asthma interferes in
the individual’s life and incorporate their
responses into personal management goals.
Maintain The Partnership
• Demonstrate, review, evaluate, correct
techniques (inhaler/spacer/holding chamber at
every visit) because these techniques deteriorate
rapidly.
• Give patients simple, brief written materials that
reinforce the actions recommended and skills
taught to reach management plan goals.
Barriers
• Review of barriers previously identified
Barriers to Adherence
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Level of education
Level of understanding
Not able to read or comprehend
Difficulty hearing
Visual impairment
Language - English is a second language
Too much information at one time
Barriers to Adherence
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Too emotional - feel overwhelmed
Fearful, Anxious, stressed
Conflicting information
Level of material is inappropriate or too complex
Uncomfortable environment
Attitude of instructor
Uniformed instructor
Previous negative experiences with learning
Burden of family, work and social responsibilities
Additional Barriers
• Lack of school health professionals
– During the school day, the child with asthma may not
have access to adults trained in asthma management,
nor adequate access to their medications.
• Lack of community resources
• Lack of financial resources for appropriate home
environmental control of allergies
Assessing Barriers
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Psychosocial
Socioeconomic
Health care beliefs and practices
Cultural
Behavioral and
Environmental factors
Psychosocial: Assess Coping Strategies
• By observation and questioning determine:
– Whether patient's (or parent’s) attitude and outlook
appear to be conducive to participation in his or her
health care, or the care of a child
– Whether patient perceives himself as able to cope
with his health care
– Level of family support and patient’s and parents,
spouse’s, or partner’s capacity to recognize severity
of an exacerbation. Does denial persist?
Psychosocial: Assess Coping Strategies
• Consider using quality-of-life profiles to
determine patient's general outlook and attitude
or to determine the presence of low self-efficacy.
Psychosocial Stressors Can Result in…
• Alcohol or drug
abuse
• Psychological illness
• Recent family loss or
disruption
• Recent
unemployment
• Domestic violence
• Other ill family
members
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Hostility or anger
Depression
Denial of disease
Inadequate social
support
• Parenting difficulties
• Coping problems
• Relationship conflicts
Socioeconomic Assessment
Socioeconomic status is often a strong predictor of
health, regardless of access to medical care. Better
health is associated with having more income, more
years of education, and a more prestigious job, as
well as living in neighborhoods where a higher
percentage of residents have higher incomes and
more education.
John D. and Catherine T. MacArthur
Research Network on Socioeconomic Status and Health
http://www.macses.ucsf.edu/Network/Mission.htm
Socioeconomic Risk Factors
Poverty
• More than 16% of children live in poverty
• 7.9% of children at or below 200% of poverty do not
have health insurance. (U.S. Census Bureau, 2001)
• 12% of children in families below the poverty line had no
usual source of care. (Institute of Medicine. Coverage
Matters, 2001)
• Single-parent family
• 27% of families in the US are single parent households
(Statistical Abstract of United States, 2002)
• Single parent families are less likely to use preventive
and ambulatory care
Socioeconomic Stressors Can Result In…
• Low income
• Limited (or no) health
insurance
• Lack of transportation
to medical care
• No regular provider
• Deteriorating housing;
unable to change
environment
• No $$ to purchase
medications
• Use of Emergency
Department instead of
primary care provider
• Missed appointments
for follow-up
appointments
• No continuity of care
• Environmental allergens
or irritants that cause
flare-ups
Family Stressors for a Child Can Result In…
• Family
• Lacks knowledge about
asthma
• Is uncooperative
• Misunderstands instructions
• Multiple care givers
• Multiple parental
responsibilities
• Inability to understand
asthma’s severity or how to
care for a child with asthma
• Family member may
continue to smoke around a
child
• Over use a relief medication
or rescue inhaler
• Inconsistent care
• Forget medication, esp.
when if child is without
symptoms
Health Care Beliefs that Affect Adherence
MEDICATION RELATED:
• Belief that medicines are unsafe/cause side effects, are
addictive
• Real or imagined side effects
• Complexity of regimen
• Fear of corticosteroids
• Over reliance on bronchodilators
• Cost & accessibility
• Difficulties with Inhaler technique
• Misunderstanding or lack of instruction
• Difficulty of giving to young children or don’t believe or support
giving medications to children
Assess Primary Source of Healthcare
Sample questions:
• Where do you go to get your medication?
• When is the last time that you saw a health care
provider for your asthma? Where did you see
this health care provider?
• Do you see the same health care provider each
time?
The Emergency Department
Emphasize the need for continual, regular care
in an outpatient setting:
• A visit to the emergency department is often an
indication of inadequate long-term management
of asthma or inadequate plans for handling
exacerbations
Assess Symptom Management
Interview questions:
• What are your symptoms?
• What do you do when that happens?
• What medications do you use?
• Please show me how you use your inhaler
– Observe patient's performance of therapy and
determine whether skills are adequate for self-care
• Describe for me how you know when to call the
doctor or go to the hospital for asthma care?
Assess Social Support
Ask:
• What family members/friends know that you
have (your child has) asthma?
Advise asthma patients to:
• Identify an “asthma partner” among their family
or friends who is willing to be educated and
provide support.
• Bring at least one of these individuals to the next
follow-up appointment.
Assess Environment
What if anything at home, work or school makes
your asthma worse?
• The identification and control of triggers are
essential for successful asthma management.
When common allergens and irritants that trigger
attacks are removed from the patient’s
environment, asthma symptoms and
hospitalizations can be prevented and medications
reduced.
Multi-disciplinary Approach
Utilize other members of the health care team
such as:
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Mental Health Professional
Social Work
Spiritual Advisor
Asthma Specialist
Other
Culture
A patterned behavioral response:
• Develops over time
• Guides our thinking, doing, being
• Shaped by values, beliefs, norms, customs,
language, attitudes and practices
• Collective expression of who we are, what we
believe, think, and do
Importance of Cultural Competency
Consider by 2070:
• Minority sub-groups will become the majority of the total
population in the United States
• Three minority groups will constitute 52% of the total
– Hispanics - 29%
– African American - 13.2%
– Asian/Pacific Islander - 10.6%
Source: US Census Bureau
www.census.gov/population/projections/nation/summary/np-t4-h.txt
Cultural Sensitivity
Definition:
• Awareness, knowledge, and understanding of
another person’s culture
• Appreciation of both similarities and differences
• Adaptation of treatment protocols and
educational materials to meet client needs
Cultural Competency
A person who is culturally competent:
• Has developed an awareness of one’s own
existence, sensations, thought and environment
without letting it have an undue influence on those
from other backgrounds.
• Demonstrates knowledge and understanding of the
clients culture
• Accepts and respects cultural differences
• Adapts care to be congruent with the clients culture
Purnell, LD and Pauanka, BJ (1998) Transcultural Health Care:
A Culturally Competent Approach.
Culture and Language
Assessment/discussion of asthma care is best done in the patient’s native
language or with an interpreter that is equally competent in both languages
and knowledgeable about medical terms.
If English is the patient’s second language, try to get
an interpreter. Then, consider:
• Speaking slowly and distinctly using simple sentence
structure and active tense.
• Avoiding slang, technical terms and medical jargon.
• Asking patient to repeat your instructions in their own
words.
• Providing written materials in the patient’s native
language.
Increase Cultural Competence
• Find out the clients understanding of the
situation, interpretation of illness and symptoms,
and symbolic meanings they attach to an event
and their notion about treatment.
• Learn first from the patient, and then share with
the patient medical approaches to treatment.
• Negotiate treatment.
Be A Cultural Broker
• Provide unhurried interactions and allow extra
time to process information and work through
decisions
• Use non-technical language
• Communicate clients culture information to other
professionals involved
Assess Beliefs and Myths
Some myths:
1. You Can’t Die From Asthma
2. Asthma Medicines are Unsafe
3. Asthma is all in Your Head
4. You Can Outgrow Asthma
5. Asthma Needs to be Treated Only When There
Are Symptoms
Address Concerns and Dispel Myths
• Until such fears are identified and addressed
patients will not be able to adhere to the clinicians’
recommendations.
• Concerns and misunderstanding impact
compliance
– Fifty percent of all patients do not follow the prescription
they are given by their physician
MYTH # 1
Health Messages:
• Death from asthma do occur although they are
rare
• Individuals who have died did not have asthma
under control
• Working closely with your physician to develop a
tailored plan and following it in a self-regulated
manner will help you keep asthma under control.
MYTH # 2
Health Messages:
• Medicines for asthma are safe when used as
directed and with patient monitoring effects
• Corticosteroids are not the same as steroids that
athletes take and do not hold the same dangers.
MYTH # 3
Health Messages:
• Asthma is a physiological condition
• There is a genetic basis for asthma
• Stress can make asthma symptoms worse, but
does not cause an individual to develop asthma
• An individual with asthma is not psychologically
impaired.
MYTH # 4
Health Messages:
• Half of all children with asthma have no
symptoms by the time they reach age fifteen
• Asthma symptoms can reappear at any age.
MYTH # 5
Actions:
• Define asthma as a chronic disease versus an
episodic disease
• Define role of inflammation in the disease
• Clarify use of medicine to control flare-ups and
that it may need to be used on a continuing
basis to prevent inflammation
• Clarify what patient can expect when asthma is
under control.
Beliefs Assessment
Ask:
• What do you think causes your illness?
• What does your illness mean to you?
• What does your family do when you are ill?
• What kind of treatments do you think you need?
• What do you fear most about your asthma?
• What kind of treatments have you used in the
past?
Overcoming Barriers
1. Establish a partnership with the patient from the
beginning.
2. Promote open communication.
3. Jointly develop treatment goals.
4. Tailor education to the needs of the individual
patient.
5. Encourage family involvement.
Some Additional Solutions
• Suggest a telephone or face to face consultation
with clinician to verify asthma or specific allergies
• Have family member quit smoking; smoke outside
the home
• Provide letter; suggest a room change at school or
work
• Keep pet out of patient’s bedroom at all times
• Suggest using products that are perfume free
• Invite family members and friends to attend
appointments or educational sessions
Acknowledgements
• Lori Kondas
American Lung Association in Ohio
• Michelle Mercure, CHES
American Lung Association in Wisconsin
We will breathe easier when the air in every
American community is clean and healthy.
We will breathe easier when people are free from the addictive
grip of cigarettes and the debilitating effects of lung disease.
We will breathe easier when the air in our public spaces and
workplaces is clear of secondhand smoke.
We will breathe easier when children no longer
battle airborne poisons or fear an asthma attack.
Until then, we are fighting for air.