Teachers’ lack of knowledge about asthma and school policies regarding the disorder have been shown to contribute to and exacerbate children’s reluctance to use their inhaler while at school. This was among the findings of a study aimed at developing an app to help families manage childhood asthma that was recently published in the journal NPJ Primary Care Respiratory Medicine.
In the current study, investigators sought to examine how children with asthma and their parents perceive their illness, their experiences with asthma, and how they manage their symptoms and medications within and outside their home. Researchers collected and analyzed data obtained from focus groups specifically designed to explore the perspectives and experiences of children with asthma and their caregivers.
The recruitment of participants (ie, children and their parents) took place in 2017 across 4 Australian states with the use of e-newsletters and online or physical noticeboard advertisements. The children-caregiver pairs participating in the study all included children with a medical diagnosis of asthma who were 6 to 11 years of age.
The children-caregiver pairs were divided into 2 groups, based on the child’s age: group A included 6- to 8-years-olds; group B included 9- to 11-years-olds. All focus groups included up to 6 children in the same age-group and occurred at metropolitan research institutions in the participant’s state of residence. All focus groups had 2 sessions, which included an initial group discussion that was followed immediately by hands-on user testing of asthma self-management apps. Each of the sessions lasted for a maximum of 60 minutes (120 minutes in total for both sessions). Each focus group included 1 research team member and the professional facilitator, along with the children with asthma and their caregivers.
All group discussions were divided into 4 sections: (1) asthma perceptions and feelings; (2) current experience with self-managing asthma; (3) desired asthma self-management strategies; and (4) self-management technology and asthma. In order to foster maximum engagement among the children, multiple discussion formats were used. Sections 1 and 2 involved group discussions and small task format, with children and their caregivers participating together. In Sections 3 and 4, the caregivers and children were divided into separate groups, with the caregivers continuing with a group discussion format and the children completing a drawing or collage activity to design an asthma management “machine” using the prompt “create a machine that takes you from your asthma feeling bad to feeling good.” These machines were utilized to prompt discussions.
During March and April of 2017, a total of 41 children and 38 caregivers participated in the focus groups. Caregiver surveys were completed for 37 children. All of the caregivers who participated in the focus groups were females. All demographic information, including age, gender, ethnicity, and asthma profile, was obtained via an online caregiver survey.
Based on the caregiver surveys, none of the participants were newly diagnosed or new to the management of asthma, with more than half of the participants having been diagnosed with asthma for at least 6 years. Overall, 54% of the children had their asthma diagnosed by a general practitioner (GP); 95% had a written asthma action plan. About 52% of the children had undergone less than 4 GP consultations for asthma in the prior 12 months, 39% had undergone at least 1 emergency department visit for their asthma in the past 12 months, and 16% had undergone an inpatient hospital admission for their asthma in the prior 12 months. In total, 76% of the children had used mobile phone apps (either with or without parental support), whereas only 8% had ever used health/medical apps and only 5% had ever used asthma-specific apps.
For the data collected, 3 themes were identified: (1) fear, sadness, and frustration associated with having asthma; (2) parental responsibility for proactively monitoring triggers, symptoms, and medication; and (3) the need for a child to communicate about his or her symptoms in order to manage asthma at school. Findings from the study showed the impact that asthma can have on children’s social and emotional well-being, thus highlighting how reliant school-aged children are on their parents to effectively manage their asthma symptoms.
Schools were recognized as a source of difficulty with respect to the management of asthma. According to some of the parents, children may be self-conscious about having asthma and about using their inhaler while at school. Most of the parents indicated that they became aware of asthma flare-ups when observing symptoms in their child, such as wheezing, coughing, shortness of breath, and low level of energy, with this occasionally becoming an issue when children were at school and parents were not present to monitor their child’s symptoms. In fact, only 1 of the parents reported that their child would consistently communicate their asthma flare-up to their parents/teachers.
A common issue encountered was that school policy frequently required that children’s inhalers be kept locked in the office, which concerned parents because children often waited too long to ask for the inhaler. Further, children rarely reported that their response to experiencing physical symptoms of asthma was to tell a teacher, with parents largely responsible for communicating their child’s asthma needs to the school. Much variability was observed with respect to responses to a child’s asthma among teachers and among schools.
The investigators concluded that the findings from this study show that additional research on phone apps that help guide children’s self-management of asthma or joint decision-making with parents is warranted.
Kelada L, Molloy CJ, Hibbert P, et al. Child and caregiver experiences and perceptions of asthma self-management. NPJ Prim Care Respir Med. 2021;31(1):42. doi:10.1038/s41533-021-00253-9