Normalization Strategies of Children With Asthma
ABSTRACT Despite understanding the physiologic effects of childhood asthma, less is known about how children perceive living with asthma. We undertook semistructured, in-depth interviews with 11 boys and 11 girls (all aged 11) drawn from a larger ongoing asthma study of Manitoba children born in 1995. All had asthma, as diagnosed by a pediatric allergist. We sought to further understand how children perceive asthma. Children spoke of feeling different and commonly used words such as "pain" and "hurt." We have categorized children's strategies to normalize their lives as (a) minimizing the health impact, (b) stressing normality, (c) emphasizing abilities, (d) making adaptations in daily living, and, (e) managing symptoms with medications. These findings suggest that aspects of other researchers' work regarding normalization efforts of children with various chronic diseases also apply in a chronic condition that is less obvious.
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ABSTRACT: In this study, we explored the lived experiences of children with beta-thalassemia major (β-TM). We considered children as experts on their experiences in contrast to the prevalent approach of asking parents or other adults about children's perspectives. The sample consisted of 12 children aged 8 to12 years. There were two stages to data collection. In Stage 1 we employed two focus group discussions and two role plays and analyzed the data thematically. This directly informed Stage 2, consisting of 12 in-depth interviews subjected to interpretative phenomenological analysis. From our findings we show that living with β-TM involves a continuous struggle between feelings of being different and strategies to minimize these differences to strive for normalcy. We suggest that understanding the experiences of living with β-TM from children's perspectives can provide unique insights into their experiences, which can fill the gap in the existing, predominantly adult-oriented research on chronic illness.Qualitative Health Research 09/2014; 25(3). DOI:10.1177/1049732314552663 · 2.19 Impact Factor
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ABSTRACT: We previously reported that indirect and intangible costs burden households with a food allergic adult. We now extend our investigation to households with food allergic children and adolescents. The objective of this study was to estimate direct, indirect, and intangible costs of food allergy in households with a child and/or adolescent with objectively diagnosed allergy to staple foods (cow's milk, hen's egg, and/or wheat), and to compare these costs with age- and sex-matched controls. Direct and indirect cost parent-reported data collected via the Food Allergy Socio-Economic Questionnaire of 84 children (0-12 years) and 60 adolescents (13-17 years) with objectively diagnosed allergy to staple foods ("cases") and age- and sex-matched controls (n = 94 children; n = 56 adolescents) were compared. Annual household costs were calculated. Total household costs included direct plus indirect costs. Intangible costs included parent-reported health of their child and/or adolescent, standard of living, and perceptions of well-being. Amongst cases, total household costs were higher by €3961 for children and €4792 for adolescents versus controls (P < .05), and were driven by direct (eg, medications) and indirect (eg, time with health care professionals) costs. For children only, a history of anaphylaxis was associated with higher direct costs than no anaphylaxis (€13,016 vs €10,044, P < .05). Intangible costs (eg, parent-reported health of a child and/or adolescent) were significantly impacted amongst cases versus controls (P < .01). Households with a child and/or adolescent with objectively diagnosed allergy to staple foods have higher total household costs than controls. Direct and indirect costs were significantly higher for cases versus controls amongst children only. Amongst both age groups, such allergy adversely impacted intangible costs. Copyright © 2015 The Authors. Published by Elsevier Inc. All rights reserved.01/2015; 3(1):68-75. DOI:10.1016/j.jaip.2014.09.021
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ABSTRACT: This paper presents a review of findings from qualitative studies on children’s experience of feeling different when living with the long term conditions; diabetes, epilepsy and asthma. Following electronic database and hand searches of reference lists of identified papers, eighteen studies were selected for inclusion in the review. These studies revealed three common themes; participation in everyday life-restrictions and adjustments; treatment regimens-constraining and enabling; and communication–disclosure, stigma and support. Across these themes it was evident children felt different physically and socially and they grappled constantly with balancing the dilemma of feeling and acting normal or feeling, being and revealing difference.Journal of Pediatric Nursing 10/2014; 30(1). DOI:10.1016/j.pedn.2014.09.016 · 0.92 Impact Factor