Assessment of acute asthma in children: do parents and healthcare providers speak the same language?

Abstract Objective Education and self-management plans enhance parents’ self-efficacy in managing their child’s asthma symptoms. By understanding how parents recognize and interpret acute asthma symptoms, we can compile patient information using terms that are familiar to parents. Method Semi-structured interviews were carried out with 27 parents of children with asthma aged 2–12 years. The interviewees were selected from three groups: parents of children admitted for acute asthma, parents of children receiving outpatient asthma care, and parents who had access to a self-management plan. Parents were invited to report symptoms they would associate with acute asthma. Subsequently, parents were queried about their recognition of symptoms from a predefined list and asked to explain how they would assess these symptoms in case their child would experience an attack of acute asthma. Results The most frequently reported symptoms for acute asthma were shortness of breath (77.8%) and coughing (63%). Other signs such as retractions, nasal flaring, and wheezing were reported by less than 25% of the parents. All parents recognized shortness of breath, wheezing and gasping for breath from a predefined list of medical terms. Retractions and nasal flaring were recognized by 81.5% and 66.7% of the parents, respectively. Recognizing the medical terms did not necessarily translate into parents being able to explain how to assess these symptoms. Conclusion Parents and healthcare professionals do not always speak the same language concerning symptoms of acute asthma. This may hamper timely recognition and adequate self-management, highlighting the necessity to adjust current medical information about acute asthma. KEY MESSAGES Education and self-management plans enhance parents’ self-efficacy in managing their child’s asthma symptoms. Parents may identify symptoms of acute asthma differently than healthcare providers Information material about acute asthma should be adjusted to empower parents to decide when to commence treatment and when to seek medical attention.


Introduction
Asthma is one of the most prevalent childhood chronic diseases, and one of the most frequent causes of hospitalization.Children experiencing an acute asthma attack primarily suffer from dyspnea, wheezing, and coughing.To achieve optimal asthma control it is essential providing children and their parents with comprehensive information (1).Studies have shown that education and a self-management plan contribute to parents' self-efficacy in treating their child's symptoms (2,3).Furthermore, children who have access to their own self-management plan experience fewer asthma exacerbations and less frequent visits to the emergency department (4).
An essential part of asthma education is to inform children and their parents when to commence treatment with bronchodilators and when to contact a healthcare provider or the emergency department.However, parents of children admitted for acute asthma often express uncertainty about when and how frequently to administer bronchodilators, and whether they should have consulted a doctor sooner.Indeed, it has been reported that it is challenging for parents to assess the severity of symptoms, determine how often bronchodilators should be administered, and when to contact a doctor (5)(6)(7)(8)(9).Furthermore, interpretation of asthma symptoms by parents and healthcare providers may differ as has been reported previously (10).It is obvious that this may hamper recognition and management of acute asthma, and result in potential insufficient use of bronchodilators (5,11).These findings underscore the need to understand how parents recognize and interpret symptoms of acute asthma.This knowledge is essential to improve education and patient information in such a way that it only contains terms parents are familiar with (12,13).
Our aim is to reduce potential barriers for adequate self-management of acute asthma in children.The first step, and therefore our primary objective of this study, is to gain insight in symptom recognition and interpretation by parents.As we intend to modify our patient information in line with the outcome, our secondary objective is to evaluate parental preferences about information methods regarding the recognition and treatment of acute asthma symptoms.

Methods
This study was performed in a large teaching hospital.A qualitative descriptive design was chosen, utilizing semi-structured interviews.Interviews were preferred over focus groups as it was important for the study to capture individual experiences, knowledge, and opinions (14).We intended to invite approximately 30 parents for an interview or until data saturation.Parents of children with asthma were purposively chosen from a list provided by the data manager for each group.The interviewees were selected from this list in sequential order by one of the authors (AK).Our aim was to interview parents of children aged 2-6 years and 7-12 years, and evenly assign them to the following three groups.The first group of parents was selected from children who were admitted to the pediatric department for treatment of acute asthma between January and December 2021.The second group of parents was selected from children who were under outpatient control and had visited an asthma nurse for inhalation instructions and education at least once in the last year.A third group of parents was selected from children who have access to an asthma portal including a digital self-management plan.
Exclusion criteria were comorbidity other than atopy and/or inadequate proficiency in the Dutch language.
The selected parents were sent an information letter.Approximately one week later, the parents were contacted by telephone to inquire about their willingness to participate.If they agreed, they were asked to sign and return the consent form.An interview appointment was scheduled after informed consent was obtained.If parents declined to participate, the next person on the list was invited.This study was approved by our Institutional Review Board (MEC no.2022-081).

Data collection procedures
Patient characteristics were retrieved from the electronic medical chart.The following data were obtained; age, sex, duration of asthma diagnosis, medication usage, family history of asthma and history of hospital or intensive care admittance.Semi-structured interviews were conducted with one or both parents.Primary caregiver gender, and educational level were registered.To ensure the privacy of participants, the interviews were processed anonymously.Parents were first asked to identify all symptoms they would attribute to symptoms of acute asthma.Subsequently, we presented a number of symptoms regularly used by healthcare providers and inquired whether parents were familiar with these terms to assess the respiratory condition of their child.These commonly used symptoms were retrieved from information leaflets about the management of acute asthma written by pediatricians, respiratory therapist or asthma nurses.These leaflets guide parents when to initiate, increase and taper the administration of bronchodilators and/or contact a physician.The symptoms were retrieved from several leaflets accessible from the internet as well as the one provided in our own clinic.We inquired parents about their ability to identify the specific symptoms when their child experiences acute asthma.Interviewees were asked to provide additional information about their response on this question.They were invited to describe how they would recognize the specific symptom when their child experiences acute asthma (elaboration probe) (15).During the interviews, we also invited parents to share their preferences regarding how they would like to receive information on recognizing and managing acute asthma.The open-ended interviews were conducted over the phone by one of the authors (JM) and lasted approximately 20-45 min.The interviews were not recorded but structured memos were written.

Data analysis
All interviews were conducted by one member of the research team (JM) and transcribed verbatim.
The information obtained was analyzed and coded by two members of the research team (JM and AK).The first author has experience with a previous qualitative study.The other authors have conducted clinical studies in childhood asthma and experience in the concepts discussed in this study.The symptoms identified by parents were clustered to develop themes from the data.Discrepancies between the two authors who coded the data were discussed and resolved by consensus.The preferences for the method of information provision were also coded before analysis.Themes were predefined for symptoms reported by parents, symptoms recognized from a standard list of medical terms, and parental preference for future information on asthma symptoms.If other themes emerged during the interviews, they were added during the analysis.Interviewees did not review transcripts or provide feedback on the selected themes.This report is in adherence with COREQ guidance (supplementary file) (16).Quantitative analysis was performed for data regarding the knowledge of acute asthma symptoms and recognition of asthma symptoms.All statistical analyses were conducted using IBM SPSS version 29.

Results
A total of 49 parents were invited to participate in this study.Nine of the eligible parents did not respond to the invitation.Seven parents expressed initial interest in participating but did not return the informed consent form.Five parents declined to take part, citing time constraints or deeming their knowledge on the topic as insignificant.Overall, informed consent was obtained from 28 parents, of which one could not be reached to make an appointment for the interview.The study cohort consisted of ten girls and seventeen boys, with 40.7% falling within the 2-6 years age group and 59.3% in the 7-12 years age group.Interviews were conducted with mothers in twenty-three cases, fathers in two cases, and both parents were present during two interviews.Characteristics of the patients and parents in the three groups are presented in Table 1.

Reported symptoms of acute asthma
Parents reported a total of thirty nine symptoms that they would assign as a symptom of acute asthma.In Box 1, some examples are presented of the exact words and phrases used by parents to indicate symptoms of acute asthma.After clustering, the number of signs was reduced to twenty-one (Figure 1).The symptoms were reduced to three different categories of reported symptoms, namely "respiratory", "gastrointestinal" and "general".For example, for coughing parents also reported "nighttime coughing", "asthma cough", and "coughing fits".For retractions parents used the term "retractions in the neck" and "retractions of the chest".One or more respiratory signs were reported by 26/27 (96.3%) of the parents.The most frequently reported symptoms were shortness of breath (77.8%), and coughing (63.0%).Wheezing and difficulty breathing were both reported by 6/27 (22.2%) of the parents.Retractions were reported by 5 out of 27 parents (15.8%), all of whom had a child aged between 2 and 6 years.Nasal flaring was reported by 6 out of 27 parents (22.2%), with 5 of them having a child in the 2-6 years age group.Other respiratory symptoms mentioned included panting (22.2%), chest pain (11.1%), rapid breathing (7.4%).Two parents mentioned gastrointestinal symptoms.One of these parents only mentioned gastrointestinal symptoms as a sign of acute asthma.Both parents mentioned that their child was nauseous and vomited, and one also mentioned stomach ache as a symptom.
Eight out of 27 parents (29.6%) reported general complaints as a sign of acute asthma.Five out of 27 mentioned that their child became very tired.Other symptoms reported by parents included "raising of shoulders" (2/27), speaking in short sentences (1/27), that their child was less active (1/27), poor appetite (1/27), agitation (1/27), and headache (1/27)." After conducting fifteen interviews, the frequency of novel responses began to decline, and data saturation was achieved after twenty-four interviews

Medical terms recognized by parents
A list of common medical terms used in information leaflets to assess respiratory symptoms were consecutively presented to the parents.They were asked whether they were familiar with these specific terms.
All parents were aware that breathlessness, wheezing, shortness of breath, and gasping for breath are symptoms of acute asthma.Rapid breathing was recognized as a sign of acute asthma by 23 out of 27 parents (85.2%).Retractions and nasal flaring were identified as indicators of acute asthma by 22 parents (81.5%) and 18 parents (66.7%), respectively.Difficulty breathing was considered a sign of acute asthma by 21 out of 27 parents (77.8%).Of all parents, 59.3% and 55.6%, respectively, were aware that "shallow breathing" and "restlessness" may be signs of acute asthma.The results are presented in Figure 2.

Ability to explain symptoms of acute asthma
Subsequently, parents were invited to explain how they would recognize the common medical symptoms if their child were experiencing acute asthma.All parents could explain how to identify shortness of breath, rapid breathing, gasping for breath, unable to talk, and fear, while 24/27 (88.9%) parents could do "having trouble breathing, especially after running and in smoky conditions.""not wanting to do anything anymore, lacking energy.""Coughing while asleep.""I notice it in his energy level and behavior, quickly getting irritable.""Wheezing, especially during exhalation, as I believe it involves the lower airways.""Especially when she has a cold, it's a typical asthma cough with bouts of coughing.""Wheezing sound, but then it's quite extreme.""rapid and shallow movement of the chest up and down.""a lot of mucus, irritated airways.""an unpleasant cough."so for wheezing, 18/27 (66.7%) for retractions, 17/27 (63%) for shallow breathing, and 24/27 (88.9%) for restlessness (Figure 2).
Among the three parents who found restlessness unclear, they mentioned that they perceived it as a broad term and were uncertain whether it referred to restless behavior or restlessness related to breathing.

Provision of information
Among the surveyed parents, almost two third (63%) expressed dissatisfaction with the information they had received concerning the management of acute asthma.Ten parents expressed a strong preference for written materials that would effectively highlight symptoms of acute asthma, with three of them specifically mentioning the possibility to access videos explaining how to recognize symptoms of acute asthma.
Furthermore, seven parents expressed a desire for more comprehensive information regarding self-management, including guidance on the frequency of bronchodilator usage and when to seek medical assistance.Additionally, six parents would like to receive a list of steps they can follow themselves during their child's asthma attack.Only one of the parents expressed an interest in obtaining more information about potential side effects of inhaled medication.Some representative quotes of the parents are presented in Box 2.

Discussion
The primary objective of this study was to gain insight into how parents recognize and interpret symptoms indicative of acute asthma in their children.Parents reported a range of symptoms that they associated with acute asthma.Interestingly, it was observed that only shortness of breath (77.8%) and cough (63%) were reported by more than half of the parents.Other signs such as retractions, nasal flaring, wheezing were reported by less than 25% of the parents.This finding is of particular significance since the majority of the "most of the information is communicated verbally, but when your child is hospitalized and you're under stress, it's challenging to remember everything.I'd appreciate having written materials that I can review at home once my child has recovered.""I typically rely on internet searches for information, but I believe it would be beneficial for parents to have a booklet containing essential symptom information as a handy reference.""I recall my initial visit to the emergency department when the doctor astutely assessed my child's breathing.It wasn't until later that I recognized she was actually noting retractions, a symptom I had never previously identified.""recognizing the symptoms can be difficult.You also don't want to administer the inhaler too quickly.""We were unaware that she could use salbutamol without restrictions when experiencing asthma symptoms.Knowing this could have potentially prevented hospitalizations.""Is there a guideline that outlines when it's essential to contact a doctor if your child is experiencing symptoms of asthma?" "It would be more comprehensible if parents were provided with visual resources, such as a video demonstrating the symptoms, either sent directly or accessible through a Qr code included in a letter." patients in this study had been admitted for acute asthma, and we assumed that these terms would have been used by healthcare professionals.On the other hand, we should acknowledge that parents may not retain all the information provided during their child's admission.Indeed, some parents reported that the sudden and overwhelming nature of the situation hindered their ability to remember it.
When we presented a list of common medical terms associated with acute asthma symptoms, the majority of the symptoms were recognized by the parents.However, terms such as 'nasal flaring, ' 'shallow breathing,' 'restlessness/agitation,' 'difficulty speaking,' and 'fear' were recognized by less than 80% of parents.We hypothesize that parents find it easier to determine the frequency of their child's breathing than to qualify their breathing pattern or recognize associated symptoms.
It is also important to note that recognizing the medical terminology did not necessarily translate into parents being able to describe how to assess these symptoms.
Additionally, our results revealed that there was no significant difference in the knowledge of acute asthma symptoms between parents whose children had been admitted for acute asthma in the previous year, had consulted an asthma nurse, or had access to a self-management plan.These findings underline the need to improve our current information, as the ability to identify symptoms of an acute asthma attack is crucial for initiating effective treatment.A previous study conducted in the Netherlands, focusing on the recognition of COPD exacerbations, demonstrated that the inability to recognize symptoms significantly impedes proper management (17).To the best of our knowledge, this has not been studied for children with acute asthma.
Our aim is to improve our patient information based on the outcome of this study.To this end, we inquired about parents' preferred methods of receiving information related to the recognition and management of acute asthma symptoms.Parents indicated a preference for receiving information in written form, ideally accompanied by visual aids to enhance comprehension, enabling them to review it at their convenience in a calm environment at home.They expressed a desire for this information to include details about symptoms, and the treatment of acute asthma.Previous research has indeed demonstrated the efficacy of visual materials in conveying information (18,19).It is essential to develop and compile educational material for acute asthma in collaboration with caregivers.Examples of improving asthma action plans with input from caregivers have been reported recently (12,20).
This study offers valuable insights into the knowledge of acute asthma and the resources parents require to enhance their understanding.Ideally, visual materials will be created that explain a select number of symptoms of acute asthma.These materials should empower parents to decide when to commence bronchodilator treatment and when to seek medical attention.Future research should investigate how parents' knowledge improves if the information is compiled in consultation with the parents.Even more important is whether this results in more effective self-management and the prevention of hospital admission.
This study is subject to the following limitations.Firstly, the interviews were conducted by a single member of the research team, and were not recorded.We feel that this has not likely influenced the responses related to the identification and recognition of symptoms, given that these were dichotomous in nature.However, it may have affected the accuracy of note-taking during the description of symptoms and preferences for information provision.On the other hand, during the interviews, detailed notes were taken, and responses were transcribed verbatim to minimize potential bias.
Secondly, this study was conducted at a single center within a healthcare system that offers accessible and routine follow-up care to all patients.Furthermore, the way medical terms differ from layman's terms may be dependent on language.Therefore, the findings may not be readily applicable to other populations.
Thirdly, we acknowledge that a relative small number of parents were interviewed for the number of variants.On the other hand, data saturation was achieved.
In conclusion, parents and healthcare professionals do not always speak the same language regarding symptoms of acute asthma.This may hamper timely recognition of acute asthma and adequate self-management.We therefore need to equip parents with comprehensive and understandable information to guide them in deciding when to commence bronchodilator treatment and when to promptly seek medical attention.It is imperative to adapt our current information about acute asthma to the parent's need.

Disclosure statement
No potential conflict of interest was reported by the author(s).

Funding
The author(s) reported there is no funding associated with the work featured in this article.

Figure 2 .
Figure 2. Percentage of parents who can recognize and explain medical terms.

Table 1 .
Baseline characteristics* (results are presented as number (percentage) or mean (sD).