Nxwisen, ntzarrin or ntzo'lin? Mapping children's respiratory symptoms among indigenous populations in Guatemala

Estimating the prevalence of asthma is an epidemiologic challenge, particularly in rural areas of lesser-developed countries characterized by low literacy and poor access to health care. To avoid under or over reporting of symptoms, questionnaires must use terminology familiar to participants and that accurately describes the triad of cough, wheeze and breathlessness characteristic of asthma. In preparation for a large longitudinal cohort study entitled Chronic Respiratory Effects of Early Childhood Exposure to Respirable Particulate Matter (CRECER) that will examine the effects of variable early lifetime woodsmoke exposure on the respiratory health of Mam-speaking children residing in communities in the western highlands of Guatemala, we conducted individual interviews (n=18) and five focus groups (n=46) with indigenous women from 17 of these communities to elicit and define local Mam and Spanish terms for common respiratory symptoms used to describe their own and their children's respiratory symptoms. Focus group participants were also shown an International Study of Asthma and Allergies in Childhood (ISAAC) video of wheezing children and adults. We developed a conceptual framework that can be used as an efficient model for future studies investigating health and/or disease terminology in isolated communities, an integral step in the development of standardized questionnaires. Among this Mam-speaking population, wheeze was best described as nxwisen or ntzarrin, "breathing sounds that are heard in the neck but come from the chest." The variation in understanding of terms between women with and without children with a history of wheeze (such that for those without wheezing children some terms were virtually unrecognized), has important implications for large-scale population surveys within countries and comparative surveys such as ISAAC. It is important to use linguistically and culturally appropriate terminology to describe wheeze in prevalence studies of asthmatic symptoms among relatively isolated communities in lesser-developed countries.