Part 1 discussed the different ways in whichasthma terms such as wheeze and difficulty breathing are interpreted by patients and parents who do not have a medical background. Part 2 continues to discuss the difficulties faced by patients when talking about asthma.
Parents and children listed other symptoms that herald an asthma exacerbation. They listed the early markers of an exacerbation as headache, stomach ache, fatigue, dizziness, throat pain, throat tightening, and malaise. When asked how they knew their children were having an asthma exacerbation, they provided the following observations:
- work hard at breathing
- see his chest slipping in
- rattling and coughing
- having to stop and slow down
- struggling to breathe
- looking panicky
- looking worn out
- bending over to get air
- decreased activity and play
Parents also noticed behavioural changes in their children prior to an exacerbation and noted that they seemed panicked, crying, whiny, restless,1 became silent, tired, irritated, got easily angry, lethargic, tired and unable to do anything, could not play and lost appetite.2
Children also listed a number of emotional responses that they perceived as clues to an exacerbation. They felt frightened, worried, nervous, or sad. In this same study by Yoos and others, when asked to describe asthma symptoms, 78% of parents and 75% of children used one standard term but almost 50% also used non-standard terms to describe an asthma exacerbation. Parents and children described 136 unique symptoms that they associated with asthma.
Ethnicity and Asthma Symptoms
The symptoms of asthma have been defined by Caucasians, and the choice of words to describe symptoms does not reflect the culture or language of other races. It comes as no surprise that there are ethnic differences in the use of terminology to describe asthma symptoms. African Americans tend to describe asthma symptoms with the following words:3
- tight throat (primary symptom)
- voice tight
- itchy throat
- tough breath
They perceived their symptoms in the upper airway and not in their chests. Further, they did not use words like wheezing and shortness of breath. (The latter statement also held true for the Caucasians in this particular study.) Only one person who had had a previous methacholine challenge used the phrase “shortness of breath”. It is obvious that this phrase is part of medical terminology that has to be learned by patients.
Caucasians describe their asthma symptoms in these terms:
- deep breath
- aware of breathing
- hurts to breathe
- light headed
- out of air
- not enough air
It is clear that asking patients to describe their asthma symptoms results in a variety of word descriptors. African Americans are likely to use words that relate to the upper respiratory tract while Caucasians refer to the lower respiratory tract or to chest-wall symptoms. The study by Yoos and others also saw a difference in reportage between African American and Caucasian families. African American parents were far more likely to use non-standard descriptions of symptoms to describe asthma exacerbations. Their children were also more likely than Caucasians to report more non-pulmonary symptoms. They were also more likely to report cough as a symptom. Their parents were twice as likely as Caucasian parents to report on nocturnal symptoms and on chest tightness as a particular symptom.
The language of asthma differs not only between African Americans and Caucasians but is also different between and within other ethnic groups. Many languages do not have a word for wheeze and hence if wheeze is not mentioned or understood, miscommunication will occur and asthma may not be diagnosed. Misinterpretation is increased if English is a second language and if the patient is on Medicaid.4
A study in the UK asked parents how they knew when their children were wheezy. Their answers were grouped into sound, difficulty in breathing, cough and signs that the child was unwell. When asked how they knew their child with asthma was wheezy, two out of three parents used non-auditory clues to determine this.5 When asked to select just one clue that indicated wheezing, 40% chose wheeze but 41% chose a non-auditory clue that included both what the parents felt about the child and what they saw in terms of the child being unwell. Less than 25% failed to connect wheeze with what they heard. Of concern is the fact that there was less than 50% agreement about wheeze between parents and practitioners.6
It appears that when describing the symptoms of asthma, patients have to learn a new vocabulary so as to be understood correctly by health care professionals. Standard asthma symptom descriptors – such as shortness of breath, wheezing, breathlessness – do not translate into the common tongue without explanatory help from a health care professional. In eliciting symptoms from patients, health care professionals tend to use medical terminology. Since this terminology is foreign to new patients and is then learned and used, often incorrectly, by them, it is clear that what is said and what is meant must differ and lead to misunderstanding and miscommunication. If patients are required to monitor their symptoms, a clear explanation of the words used to describe the sensation of breathlessness, shortness of breath, wheeze and cough must be given to them in an unambiguous, understandable and culturally sensitive manner. An audio-visual presentation with verbal explanations that teach patients how to recognize symptoms can only be helpful. This will avoid the pitfalls inherent in miscommunication which can lead to both lack of appropriate diagnosis and to under-treatment during acute episodes. However, it may be even more appropriate to listen to parents and ask them to explain what they mean by the terms they use instead of requiring them to use words that are unfamiliar to them.
- Yoos HL, Kitzman H, et al. The language of breathlessness: Do families and health care providers speak the same language when describing asthma symptoms? J Ped Health Care. 2005;19(4):197-205
- Ostergaard MS. Childhood asthma: parents' perspective--a qualitative interview study. Fam Pract. 1998 Apr;15(2):153-7.
- Hardie GE, Janson S, et al. Ethnic differences: word descriptors used by African-American and white asthma patients during induced bronchoconstriction. Chest. 2000;117(4):935-43.
- Cabana MD, Slish KK, Nan B, Lin X, Clark NM. Asking the correct questions to assess asthma symptoms. Clin Pediatr (Phila). 2005;44(4):319-25.
- Calley P. Qualitative: How do parents recognise and make judgements about respiratory signs and symptoms in their young children? Evid Based Nurs 2003; 6(2): 59
- Cane RS, Ranganathan SC, McKenzie SA. What do parents of wheezy children understand by "wheeze"? Arch Dis Child. 2000;82(4):327-32