The Fear, Frustration, Financial Strain and Fatigue of Living with

Asthma

Barbara P. Yawn, MD, MSc

Peter Wollan, PhDOlmsted 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

BeliefsTriggers

and Asthma

Access &Use of

Health Care

MedicationUse &

Concerns

Methods

Focus Groups

Resultsand

Recommendations

CrystallizationEmersion

Parents of asthmatics

Adults with asthma

Subjects

52 parents of asthmatics

8 teens with asthmatics

AZ12

NB15

NJ15

MN24

Life with Asthma

is aConstantStruggle

PervasiveImpact Financial

Concern

UnmetExpectations

EmotionalBurdens

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 don’t know how to treat– Schools don’t control air quality and

triggers

• Occupation– Mothers can’t 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– Don’t 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

– Didn’t do enough to prevent the attack

– Need to be away, but can’t ask others to baby-sit

– Can’t 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 can’t 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!

• Can’t choose physician

• Can’t control course of disease

• Doctors don’t listen to my concerns about– Drugs– Triggers– Fears of death– Access to care problems– Need to learn about asthma management

• Insurance companies make decisions• Can’t control indoor air quality

– School, work, home

• Can’t 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 family’s 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