BARRIERS TO ADHERENCE AND COMPLIANCE BEHAVIORAL CULTURAL AND

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: • • • educational socioeconomic psychosocial cultural behavioral and environmental factors • Discuss implementation strategies that address barriers

Asthma Management Goals • • • 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) • • • 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. 1999 b) • 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 • • • 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 • • 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 • • • 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 • • • 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 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 • • 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. Mac. Arthur 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: • • • 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-t 4 -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.