Children's Experiences of Living With Asthma: Fear of Exacerbations and Being Ostracized

doi:10.1016/j.pedn.2010.05.003

Journal of Pediatric Nursing

Volume 26, Issue 4, August 2011, Pages 295-303

https://doi.org/10.1016/j.pedn.2010.05.003 Get rights and content

The aim of the study was to explore children's experiences of asthma to tailor a learning program based on their perspectives. Fifteen children (7–10 years) were interviewed, and they narrated the meaning behind their drawings; a phenomenological hermeneutical approach was used in the analysis. The findings are described in two themes with five subthemes: fear of exacerbation (bodily sensations, frightening experiences, and loss of control) and fear of being ostracized (experiences of being excluded and dilemma of keeping the asthma secret or being open about it). Drawings are a good tool for initiating a dialogue with children.

Section snippets

Background

Asthma is the most common childhood disease and long-term medical condition affecting children (Masoli, Fabian, Holt, Beasley, & Global Initiative for Asthma [GINA] Program, 2004). The prevalence of asthma is increasing, and atopic diseases are considered to be a worldwide health problem and an agent of morbidity in children (Masoli et al., 2004). A Norwegian cohort study among 10-year-old children concluded that lifetime prevalence of asthma was 20.2%, current asthma was 11.1%, and doctor

Design

A qualitative approach was chosen to acquire a deeper understanding of how children experience asthma in their daily life and to obtain a view of their thoughts and meanings (Kvale, 1997). Data have been collected by means of interviews and drawings. Phenomenology, as created by Husserl and further developed by Merleau-Ponty (2004), focuses on people's lifeworld as they experience it. The lifeworld perspective goes back to the things themselves, that is, experience is considered to be an

Findings

The findings are described in two themes with five attendant subthemes relating to the main themes covered in the interviews: fear of exacerbation and fear of being ostracized. The subthemes include different aspects of the themes (Table 3). The themes are also illustrated with six drawings made by the children (Figure 1, Figure 2, Figure 3, Figure 4, Figure 5, Figure 6).

Discussion

In this study, children described in their own words and from their perspective what it is like living with asthma. The drawings made by the children and their explanations provided a deeper understanding of their lifeworld and their inner thoughts. The findings reveal their fear of bodily sensations of exacerbation as well as their fear of being ostracized. The fear of being isolated and different from others sometimes forced the children to participate in activities causing breathlessness or

Conclusion

Asthma management is a major issue not only for children but also for HCPs, teachers, and parents. This study clearly shows that there is a risk that a child suffering from asthma feels lonely and isolated and that this feeling of isolation might be detrimental to the child's physical and psychosocial development. The children's descriptions can contribute to an increase in the HCPs', teachers', and parents' understanding of the children, and they should have a cooperative responsibility for

Acknowledgments

The authors want to especially thank the children for participating in this study. Hedmark University College, Innlandet Hospital Trust, and Nordic School of Public Health have funded the study. No other commercial funding is involved.

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Children's and adolescents’ descriptors of asthma symptoms: An integrative review
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Studies that elucidate racial or ethnic differences in word descriptors were few (Harver et al., 2011; Mammen et al., 2017, 2019; Q.M. Van Dellen et al., 2008; Yoos et al., 2005a). Two studies did not report the race/ethnicity of the participants (Carrieri et al., 1991; Lebowitz et al., 1981), and five studies included a single racial/ethnic group (Chiang, 2005; Houle et al., 2010; Peterson and Sterling, 2009; Phankingthongkum et al., 2002; Trollvik et al., 2011; van den Bemt et al., 2010a). Racial/ethnic differences could not be examined in a study conducted in Canada due to the homogeneity of the sample being predominantly white (Woodgate, 2009).
Accurate assessment of asthma symptoms is central to appropriate treatment and management; however effective communication about symptoms−how it is perceived and reported−remain challenging in pediatric clinical and research settings.
To synthesize the existing pediatric literature on children's and adolescents’ word descriptors of asthma symptoms.
In this integrative review, we systematically searched Cumulative Index of Nursing and Allied Health Literature and PubMed databases to identify original research studies from 1980 to 2021 on children and adolescents’ word descriptors of asthma symptoms.
The search yielded 2,232 articles, of which 21 studies met the eligibility criteria. Scientific literature focused on children and adolescents’ descriptions of asthma symptoms are limited. In addition to standard asthma symptom terminology (e.g. cough, wheeze, chest tightness, shortness of breath), pediatric populations used nonstandard word choices to describe the asthma symptom experience. Children and adolescents used a variety of affective (e.g. ‘helpless’, ‘afraid of dying’) and sensory words (e.g. ‘pressure in chest’, ‘tightness, lungs feel shut’) to describe the phenomena. Literature examining race differences in word descriptors in pediatrics is limited; thus it is unclear if word descriptors vary by race or ethnicity. Evidence of relationships between descriptors and gender and age are also lacking.
Our review elucidates gaps in the literature regarding the full extent of the language common to racially and ethnically diverse samples of children and adolescents. Further research is warranted to help clinicians and researchers query children and adolescents’ experience of asthma symptoms.
Recommendations for Physical Activity in Asthma: A Work Group Report of the AAAAI Sports, Exercise, and Fitness Committee
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Children, adolescents, and their parents or caregivers may perceive asthma as a firm barrier to physical activity or sports. Negative experiences, including fear of being excluded or isolated from group physical activities, have led to children avoiding participation in activities they otherwise would have been interested in pursuing.66 Fear of physical activities exacerbating asthma may lead parents to enforce unnecessary limitations.
Regular physical activity not only improves general health but also can positively impact asthma outcomes, such as control and quality of life. Despite this, many asthma patients do not engage in regular physical activity because they mistakenly believe that they should restrict exercise participation. Health care providers have an opportunity to influence the physical activity levels of their patients during regular office visits. Nonetheless, health care providers often overlook physical activity counseling as an adjunct to pharmacological therapy in asthma patients, and in particular, overlook physical activity counseling. Some providers who acknowledge the benefits of physical activity report being unaware how to approach a conversation with patients about this topic. To address these issues, members of the Sports, Exercise, and Fitness Committee of the American Academy of Allergy, Asthma, and Immunology (AAAAI) performed a focused literature search to identify and evaluate the effects of physical activity in patients with asthma. The purpose of this report is to summarize the evidence for physical activity’s impact on asthma patients’ disease control, pulmonary function, and overall well-being. Several subpopulations of patients with asthma, including children, adolescents, and older adults, are considered individually. In addition, this report offers practical recommendations for clinicians, including how to identify and overcome barriers to counseling, and methods to incorporate physical activity counseling into asthma treatment practice.
Effect of high-intensity interval training in adolescents with asthma: The eXercise for Asthma with Commando Joe's® (X4ACJ) trial
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These findings have important implications for the design of future interventions for those with asthma, highlighting that those with asthma are able to tolerate, and benefit from, similar exercise stimuli recommended for their healthy counterparts. This study demonstrates the fallacy of the perception that adolescents with asthma should be excluded from exercise, including HIIT because they are unable to participate and keep up with their peers when involved in similar activities.56,57 In accord with previous research and recent systematic reviews,27,58 the present study found that HIIT elicited increases in cardiorespiratory fitness in adolescents.
Higher levels of cardiorespiratory fitness are associated with reduced asthma severity and increased quality of life in those with asthma. Therefore, the purpose of this study was to evaluate the effectiveness of a 6-month high-intensity interval training (HIIT) intervention in adolescents with and without asthma.
A total of 616 adolescents (334 boys; 13.0 ± 1.1 years, 1.57 ± 0.10 m, 52.6 ± 12.9 kg, mean ± SD), including 155 with asthma (78 boys), were recruited as part of a randomized controlled trial from 5 schools (4 control and 1 intervention). The 221 intervention participants (116 boys; 47 asthma) completed 6 months of school-based HIIT (30 min, 3 times per week, 10–30 s bouts at >90% age-predicted maximum heart rate with equal rest). At baseline, mid-intervention, post-intervention, and 3-month follow-up, measurements for 20-m shuttle run, body mass index (BMI), lung function, Pediatric Quality of Life Inventory, Paediatric Asthma Quality of Life Questionnaire, and Asthma Control Questionnaire were collected. Additionally, 69 adolescents (39 boys (of the 36 with asthma there were 21 boys)) also completed an incremental ramp test. For analysis, each group's data (intervention and control) were divided into those with and without asthma.
Participants with asthma did not differ from their peers in any parameter of aerobic fitness, at any time-point, but were characterized by a greater BMI. The intervention elicited a significant improvement in maximal aerobic fitness but no change in sub-maximal parameters of aerobic fitness, lung function, or quality of life irrespective of asthma status. Those in the intervention group maintained their BMI, whereas BMI significantly increased in the control group throughout the 6-month period.
HIIT represents an effective tool for improving aerobic fitness and maintaining BMI in adolescents, irrespective of asthma status. HIIT was well-tolerated by those with asthma, who evidenced a similar aerobic fitness to their healthy peers and responded equally well to a HIIT program.
Assessing Asthma Symptoms in Adolescents and Adults: Qualitative Research Supporting Development of the Asthma Daily Symptom Diary
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Despite the widespread availability of patient-reported asthma questionnaires, instruments developed in accordance with present regulatory expectations are lacking. To address this gap, the Patient-Reported Outcome (PRO) Consortium’s Asthma Working Group has developed a patient-reported asthma daily symptom diary (ADSD) for use in clinical research to assess outcomes and support medical product labeling claims in adults and adolescents with asthma.
To summarize the qualitative research conducted to inform the initial development of the ADSD and to provide evidence for content validity of the instrument in accordance with the Food and Drug Administration’s PRO Guidance.
Research informing the initial development and confirming the content validity of the ADSD is summarized. This comprised a review of published qualitative research, semi-structured concept elicitation interviews (n = 55), and cognitive interviews (n = 65) with a diverse and representative sample of adults and adolescents with a clinician-confirmed diagnosis of asthma in the United States to understand the asthma symptom experience and to assess the relevance and understanding of the newly developed ADSD.
From the qualitative literature review and concept elicitation interviews, eight core asthma symptoms emerged. These were broadly categorized as breathing symptoms (difficulty breathing, shortness of breath, and wheezing), chest symptoms (chest tightness, chest pain, and pressure/weight on chest), and cough symptoms (cough and the presence of mucus/phlegm). Conceptual saturation was achieved and differences in the experience of participants according to socio-demographic or clinical characteristics were not observed. Subsequent testing of the ADSD confirmed participant relevance and understanding.
The ADSD is a new patient-reported asthma symptom diary developed in accordance with the Food and Drug Administration’s PRO Guidance. Evidence to date supports the content validity of the instrument. Item performance, reliability, and construct validity will be assessed in future quantitative research.
Research commentary-evaluating educational programs in pediatric nursing: Translating research outcomes to improve practice
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Management of Intermittent and Persistent Asthma in Adolescent and High School Athletes
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Citation Excerpt :
Asthma can also have an impact on social and academic life, often resulting in isolation. Feelings of ostracism are often cited by those with asthma, with some deliberately denying symptoms and “struggling through” exercises with their healthy peers to avoid social isolation52 and being identified as different.53 Sometimes, adolescents consider their symptoms as a “normal” response to exercise, or prefer to hide them, possibly in fear of being dropped from their team.54
Asthma is the most common chronic condition during childhood and adolescence, affecting an estimated 8% of children and youngsters below 18 years in the United States and the United Kingdom. In adolescent athletes, asthma-like symptoms may represent a common consequence of regular sport practice. Asthma in young athletes poses several challenges, including the ambiguity of definitions and diagnosis of asthma resulting from exercise-induced symptoms, the best pharmacological treatments, and the nonpharmacological options for the management of disease and the challenges inherent to this age group. At a time when the regular practice of sports is increasingly being recommended for a healthy living, the support network around the young athletes is crucial to reduce the impact of asthma on their physical and emotional well-being. In this review, we examine the main issues around the definitions and clinical differentiations of asthma in young sport athletes. We discuss best practice approaches to improve the adherence to the clinical management, including nonpharmacological strategies directed at the family and trainers of athlete adolescents.

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¹: The study has been presented in two conferences: The 6th Nordic Health Promotion Conference, August 20–22, 2009, Gothenburg, Sweden, and The International Conference on Public Health Nursing, October 15–17, 2009, Diakonova University College, Oslo, Norway.

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Children's Experiences of Living With Asthma: Fear of Exacerbations and Being Ostracized1

Section snippets

Background

Design

Findings

Discussion

Conclusion

Acknowledgments

Journal of Pediatric Nursing

International Journal of Nursing Studies

Social Science & Medicine

The salutogenic model as a theory to guide health promotion

Health Promotion International

Health and well-being of children in the five Nordic countries in 1984 and 1996

An audit of medication administration: A glimpse into school health offices

Journal of School Nursing

Asthma in every fifth child in Oslo, Norway: A 10-year follow up of a birth cohort study

Allergy: European Journal of Allergy & Clinical Immunology

Physical activity and physical self-concept: Comparison between children with and without asthma

Journal of Advanced Nursing

Research with children

Perspectives and practices

Description vs. interpretation—A new understanding of an old dilemma in human research