The Fear, Frustration, Financial Strain and Fatigue of Living with Asthma Barbara P. Yawn, MD, MSc Peter Wollan, PhD Olmsted Medical Center Rochester, Minnesota, USA

Funding provided by an unrestricted grant from the American College of Asthma, Allergy & Immunology and the Environmental Protection Agency, Indoor Air Quality Division

Abstract: Aims: To study the family burden of childhood asthma. Methods: A qualitative study using focus groups of mothers, analyzed by immersion crystallization. Results: Three main themes emerged; mothers have unmet needs and expectations regarding asthma, the impact of asthma is pervasive on daily life and childhood asthma is an emotional burden for the family. Conclusions: Living with asthma is a constant struggle that can but often is not eased by the health care system.

Objective: To understand the perceptions and needs of people who live with asthma Asthma Treatment Plans Beliefs about etiologies Beliefs Triggers and Asthma Access & Use of Health Care Medication Use & Concerns

Methods Focus Groups Results and Recommendations Crystallization Emersion Parents of asthmatics Adults with asthma

Subjects 52 parents of asthmatics 8 teens with asthmatics AZ 12 NB 15 NJ 15 MN 24

Life with Asthma is a Constant Struggle Pervasive Impact Financial Concern Unmet Expectations Emotional Burdens Desire for Control Results

Expectations of those living with asthma are often unmet Expect answers: –Why do I have asthma? –What can I do to make it better? Expect competent and caring medical services: –Physicians and systems that respond quickly –Doctors that know the answers and give consistent messages

Expect education: –Information that helps them provide better self care –To identify and control or prevent exacerbations Expect helpful therapy: –Medications that work –Medications that are safe –Medications with few side effects Need a knowledgeable and supportive community –Home, school, work and play

All reported that asthma had a pervasive impact on their lives School –Schools dont know how to treat –Schools dont control air quality and triggers Occupation –Mothers cant work-must be available

Recreation –Trips planned around nebulizers, seasons –Little energy left to play Family –Focus is always on asthma –No down time Unpredictable and requires constant vigilance –Dont know when it will happen or where –Must always be prepared –Have to shape life around asthma

The emotional burden extends to the whole family Fears –Damage from symptoms –Death –Medication side effects Sleeplessness Agitation Growth Behavior Problems Guilt –Too much attention for the child with asthma –Didnt do enough to prevent the attack –Need to be away, but cant ask others to baby-sit –Cant work and no money –My child is different

Asthma just costs too much Medications –Daily medications –Multiple inhalers (car, school, home, childcare) –Special emergency medications Equipment –Nebulizers, peak flow meters, and holding chamber –Allergen control measures (air filters)

Doctors –Regular appointments –Referrals Emergency Care –The ED cant turn you away –The ambulance has to come get you Loss of income –No childcare for sick children –Missed work and school days –No promotions or raises - absent too often

Whose life is it? I want to have some control! Cant choose physician Cant control course of disease Doctors dont listen to my concerns about –Drugs –Triggers –Fears of death –Access to care problems –Need to learn about asthma management

Insurance companies make decisions Cant control indoor air quality –School, work, home Cant control outdoor air quality –School, recreation Neither rural nor urban residents felt they had control. Rural residents worried about agricultural pollution and distances to care, urban residents worried about substandard housing and indoor air quality.

Summary: Life with asthma is a constant struggle. Physicians and the health care system often add to the struggle. Families living with asthma need validation of their concerns. Families living with asthma need action.

Recommendations for health care: Recognize and affirm the burden and efforts Provide family-centered care Become familys advocate Develop and give consistent messages about asthma Address concerns regarding medication side effects Facilitate adequate medication resources (e.g. multiple inhalers) Educate the schools Educate the public