Exploring parents' understandings and concerns on self-management of childhood asthma

KY Lai 黎啟業, Karry K L Lam 林嘉莉, S C Lam 林秀珠, Amber CW Tang 鄧翠樺, Lawrence K K Yeung 楊國傑, Martin C S Wong 黃至生, Albert Lee 李大拔

HK Pract 2005;27:172-178

Summary

Objective: To estimate the knowledge level, understanding and attitude of parents pertaining to self management of childhood asthma.

Design: A semi-structured focus group interview conducted in a community health intervention programme.

Subjects: Six parents whose children suffered from asthma or "bronchial hypersensitivity" participated in a 45-minute focus group interview.

Main outcome measures: (1) Knowledge level of the difference between asthma and bronchial hypersensitivity; (2) Understanding of the management of bronchial hypersensitivity and asthma; (3) Acceptance of the diagnosis of asthma made by doctors; (4) Parental concerns during asthmatic exacerbation and management strategies; (5) Views as to the adequacy of public health resources for the management of asthma and its education, and the associated underlying reasons.

Results: There were misconceptions concerning asthma and bronchial hypersensitivity among parents, evident by the level of the parents' difficulty in accepting the diagnosis due possibly to stigmatization. Some parents were skeptical about the usefulness of proper exercise and the use of Western medicines, particularly locally inhaled steroids. The main concerns they had as regards managing asthmatic exacerbations were time investment, home environmental alertness and frustrations in "inheriting the disease". There have been no obvious strategies to relieve the stress and worries. They believed that more resources should be put towards health education of asthma for the parents or care-givers.

Conclusion: There should be a tailor-made community educational initiative for childhood asthma to find out parental concerns and ideas in order to allow self-management programmes successful. We suggest more extensive public health education so as to improve the knowledge gaps and address the worries and concerns of childhood asthma care-givers.

Keywords: Parental concerns, asthma, self-management

摘要

目的： 評估父母在自行照顧兒童哮喘上的知識，了解和看法。

設計： 在一項社區健康活動中，進行半結構性小組討論及面談。

研究對象： 六位子女患有哮喘或「氣管敏感」的家長，參予約四十五分鐘的面談。

主要測量內容： (1) 對區別哮喘與氣管敏感的認識；(2) 對處理哮喘與氣管敏感的理解；(3) 對哮喘診斷的接受程度；(4) 父母在急性哮喘病發時的關注及在處理上的憂慮，(5) 覺得投放在此病的公共衛生資源是否足夠，及其背後相關原因。

結果： 父母對哮喘與氣管敏感的認識存有誤解。因恐怕其標籤效應在接受子女哮喘上感到困難。 部份家長對運動及西藥的使用尤其局部類固醇存有保留。在孩童急性病發時，父母會憂慮治病所要付出的時間， 家居環境的重要及此病的遺傳性。對紓緩此焦慮，暫未有任何可行策略。但他們認為應投放更多社會資源在教導哮喘病患之照顧者上。

結論： 社區的健康教育活動應考慮包括父母對孩童哮喘的關注與期望，以達致成功及適切的效果。 我們建議進一步推廣社區教育活動，以增加照料哮喘病患者的知識及舒緩他們的擔憂。

詞彙： 家長關注，哮喘，自行照料。

Introduction

Asthma is the most common respiratory disease in Hong Kong representing one of the most common chronic diseases of childhood.¹ The American Lung Association estimated that 4 million children under 18 years old had an asthmatic attack in the past 1 year, and many suffered from "hidden" or undiagnosed asthma.² Asthma is the most common cause of school absenteeism due to chronic disease, and general practitioners (GPs) frequently encounter children presenting with wheezing and asthma in their daily practice.

According to International Study of Asthma and Allergies in Childhood (ISAAC)³ and an update article on childhood wheezing disorders by Lee and Wong,⁴ the prevalence of asthma in Hong Kong children is approximately 10%.^5-6 Indeed, the prevalence is increasing in recent years.⁷ Despite effective treatments and national guidelines, the morbidity due to asthma remains high in adolescent populations.⁸ Hence more attention should be paid to proper management of this disease entity as it poses a challenge for GPs.

In order to minimize the morbidity associated with asthma, many educational programmes^9-13 have been initiated, with foci of improving asthma knowledge and self-management techniques. These programmes are often characterized by extensive responsibilities on patients' part,¹⁴ and the objectives are concerned with satisfactory control of the condition with obvious strategies to derive the expected clinical outcomes.

However, self-management intervention programmes targeted towards chronic disease have been reported to exert little influence on morbidity outcomes.^15,16 It has been suggested that successful programmes targeted at asthma self-management should focus positively on affecting patient behaviour tailored to the population.^17-19

As a first step towards designing and implementing optimal self-management, intervention programmes for asthmatic families in general practice, it is crucial to explore the parents' knowledge, beliefs and concerns towards this chronic disorder. Childhood asthma is a chronic disease requiring substantial patient (and parent) compliance, and a correct understanding of the disease entity together with proper self-management is indispensable. Therefore, it is important for GPs to acknowledge the concerns, beliefs and underlying needs of parents taking care of their asthmatic children. Accordingly, we conducted a qualitative study of parents whose children have been diagnosed with bronchial hypersensitivity or asthma in order to explore their knowledge, attitudes and perceptions of these allergic disorders. Qualitative research such as focus group interviews are useful for exploring the patient's views, gaining an in-depth understanding of the experience of individuals, and are particularly valuable for interpreting the meaning of patient behaviour, attitudes, and interactions.²⁰ This mode of research was used to address our present research question.

Methodology

The Chinese University of Hong Kong collaborated with the Tai Po Doctors' Network of the Hong Kong Medical Association in carrying out a Public Health Education Program in 2004. One 2-day programme was conducted in a primary school in the Tai Po district, including health talks delivered by doctors, health-related games and competitions, together with exhibition boards. The participants included parents, students and coordinating teachers.

We conducted a semi-structured, focus group interview inviting six parents to discuss their views on two allergic disorders, namely "bronchial hypersensitivity" and asthma. All the parents had children suffering from asthma or "bronchial hypersensitivity" as diagnosed by medical doctors, and were invited to join on a voluntary basis. The latter term was told by GPs to be the provisional diagnoses to the interviewing parents, whose children have not been diagnosed as asthma yet. The interview lasted around 45 minutes and we achieved data saturation. It was conducted by five students supervised by one medical doctor working in family practice, with one chairman and one scriber selected by the supervising professor. The interview was recorded by both audio-taping and note-keeping. After obtaining prior consent, we emphasized issues of confidentiality, anonymity and the sole purpose of collecting information for research. It consists of five questions exploring parental knowledge, understanding and attitude on asthma self-management.

The parents were allowed to freely interact with each other and come up with more ideas. These questions were chosen since they are important in family practice, commonly asked by adolescents or parents during our consultations, and are largely modifiable through health education if there is a knowledge gap compared with standard medical knowledge.

Results

Question 1: Do you think there is any difference between the term bronchial hypersensitivity and asthma?

All of them believed that asthma does share similar symptoms as bronchial hypersensitivity, but the former is much more "aggressive" and serious in terms of symptoms and treatments. One of the parents thought that if bronchial hypersensitivity was not treated properly, it would progress to develop asthma later.

"I am anxious that my child may suffer from asthma eventually, and it is fortunate he (she) is now only having bronchial hypersensitivity"

The difference between asthma and bronchial hypersensitivity was poorly understood.

"I would advise my child to avoid touching other asthma children since he (she) may become infected."

One parent believed that "flatfoot" has a relationship with allergies, such as asthma; while one parent believed that asthma is infectious.

Question 2: What is your understanding of the management of bronchial hypersensitivity or asthma?

All of the children were followed up with their family doctors during each exacerbation of symptom attack, and received symptomatic treatment only. Two of the parents thought that taking too much Western medicine would have a negative influence on their children's immune system, and therefore avoided visiting their family doctors unless the symptoms persisted and were not well controlled by medication they had.

"I was told that swimming or other exercises may cause more asthma attacks"

One parent was not willing to let her child to go swimming as she was afraid that the condition of the disease would be worsened by polluted water. As a result, she was very reluctant to let her child to join such activities.

Three of the parents, thinking that conventional Western medicine was only symptomatic control rather than cure, turned for help to alternative medicine. However, they later found that herbal medicine was not of much help and switched back to Western medicine. One parent preferred to choose "healthy natural food" or "bee pollen" rather than doctor's treatment as she did not want her child to take too much Western medicine. All parents noticed that changing of weather would precipitate the symptoms and hence they would pay more attention to their children on such occasions. One of the parents found out from her general practitioner that giving a glass of hot water for the child to breathe was useful when symptoms occurred. For preventive measures, she would therefore utilize hot steam for her child to breathe in and put on more clothes when the weather became unstable.

"I do not completely understand the difference between management methods for asthma and bronchial hypersensitivity"

In addition, most of the parents reflected a lack of knowledge of asthma and bronchial hypersensitivity, as well as their clinical importance.

Question 3: Do you accept the diagnosis of your child made by the doctor?

All the parents did accept the diagnoses given by their GPs, but none were willing to receive long-term treatment for their children, as they thought that chronic management implied a more serious disease and their children's condition would then belong to the more severe "asthma" rather than allergic disorders.

"I was afraid that if my child receive long-term drugs, that may imply a more serious chronic disease."

Some parents reckoned that their children's conditions were not severe enough to receive such treatment. One of the parents did suspect that her child was suffering from asthma, but she would like to observe for longer period and consult more advice before she could accept the diagnosis of asthma.

"I have heard about steroid side-effects and therefore I do not wish my child to be put on it long-term"

The main reasons for them refusing to use low dose inhaled steroid as long-term maintenance therapy were that they knew the disease was not curable, and had concerns over the possible side effects brought about by the locally inhaled steroids, such as candidiasis and hirsuitism.

Question 4: What are the worries during the exacerbation period of the illness? And how would you manage the stress and worry?

One parent blamed herself for her daughter inheriting the disease from her. She was depressed as one of her friends who also suffered from bronchial hypersensitivity, had complications like vomiting blood. She thought that her residential environment might be one of the causes for her daughter's symptoms; she claimed that her house had only a few windows, and that all of them were facing the same direction which was just opposite to the chimney of a restaurant. Therefore the airflow was very much polluted and she had to keep all the windows closed all the time. She would ask her daughter to avoid having close contact with someone who coughed. Another parent expressed different opinions and believed that the more she worried about her son, the weaker he would be, as she thought worries would only put additional stress on her child. Therefore she would ask her son to do more exercise like swimming in the cold weather, and she would take her son to their GPs if the symptoms were not well controlled and persisted for a while.

"I need to visit general practitioners more frequently, but otherwise I thought I may cope with my child's illness."

All of them agreed that during the peak seasons of the illness like winter, their children were more susceptible to attacks, which gives them additional psychological stress.

There had been no obvious strategies to relieve their stress and worries brought about by their children suffering from asthma.

Question 5: Do you think there should be more resources putting on the management of the illness of your child? If so, why?

All parents would like to learn more on the condition particularly on proper preventive measures.

"It would be nice to have more health-related programmes to educate parents on how to deal with this disease"

All of them obtained information of the illness from their GPs as well as their friends and pamphlets. They were told that allergy is common. However, they found that doctors' explanations were sometimes inconsistent, making them confused and they believed that doctors could do better on the area of health education. They preferred health information offered by health talks, or activities like health promotion days.

Discussion

From the interviews it is noticeable that most of the parents do not realize that their children have asthma. Possible reasons include poor insight, lack of knowledge on this condition, and denial.

Instead, they preferred the term "bronchial hypersensitivity". All parents believed that bronchial hypersensitivity and asthma were similar in terms of symptoms, but asthma was actually more serious, while one parent thought bronchial hypersensitivity was a "pre-asthmatic" state, and would progress to asthma if not treated properly. It was observed, therefore, that parents tend to accept the diagnosis of bronchial hypersensitivity more easily than asthma.

This is consistent to a review of 32 patient-interview studies that many parents were concerned about peer-stigmatization.²¹

This finding might bear implications in our practice when we diagnose a child as "likely to have asthma" - the wordings to address the condition and explanations offered to the parents must be judiciously exercised.

It is not difficult to understand the reasons why parents have such concepts. Indeed, it is speculated that some doctors might avoid using the term "asthma" as a diagnosis, which could be purely out of good intention or lack of evidence of making a definitive diagnosis of asthma; therefore they use psychologically more acceptable terms like "bronchial hypersensitivity". However, without further education or proper follow-up, it turned out that most of them would keep bronchial hypersensitivity as the ultimate diagnosis, where the management could be completely different. Parents might not appreciate the importance of prophylactic treatment such as inhalation of steroid or even avoid the use. In past studies, important parental concerns included worry about dependence or diminished effectiveness with long-term use of the medication.²¹ On the other hand, parents could deny that their children were suffering from a long-term illness in order to avoid stigmatization. Hence, we believe that it is the GPs' responsibility to explain the illness clearly, communicate with the patients more thoroughly, and at the public health level more effort should be spent on improving the acceptance of asthma in our community.

Concerning the knowledge of asthma, we found that those parents still had lots of misconceptions. Serious misconceptions include that asthma or bronchial hypersensitivity was infectious, swimming could bring about a worsening of symptoms, and that the use of local steroid should be avoided. This could be one of the reasons for stigmatization of asthma in our society. It is also where GPs could act upon by practicing health education either in their consultations or by participating in community health education programmes.

These serious misconceptions can act as barriers for children having a normal and healthy life, and the stigmatization may extend to their peers and social circles. Therefore, these could be useful information to include in educating asthmatic patients. Since the knowledge of asthma varies among parents, it is recommended that doctors should explore the patients' level of understanding first in order to tailor subsequent health education.

It is noteworthy that all parents in our focus group interview came to the same idea that prolonged use of Western medicine would do more harm than good. This is shown by their reluctance in receiving long-term preventive treatment, even non-steroidal ones. We should try our best to understand and relieve their worries. Good drug compliance can only develop when parents have better understanding of the importance of proper drug use.

Nearly all parents had sought help from alternative medicine, mainly traditional Chinese medicine (TCM). Surprisingly, they all found that alternative therapies were not helpful at all, which may be due to incorrectly using TCM or purchasing over-the-counter alternative supplements as the mainstream treatment of choice. While there exists scarce evidence supporting the sole usage of TCM without Western medicine in the effective management of asthma, cooperation between herbalists and GPs in terms of educating patient may be potentially helpful, so as to minimize the chance that patients try ineffective treatments. In addition, research in TCM on the management of chronic disease like asthma is recommendable since many Chinese parents prefer this treatment option.

These deficiencies in knowledge could also exist in some other chronic diseases. Hence we suggest more research targeted towards the understanding and attitudes of patients or their guardians on other important and commonly encountered conditions in the primary care setting.

Are there any strategies for GPs to address the misconceptions?

In Caucasian countries, it has been demonstrated that multi-component educational, behavioural, and medical asthma management intervention initiatives could improve knowledge and quality of life among asthmatic children.¹⁷ Changing behaviour is more complex than just information giving. According to the Theory of Reasoned Action by Ajzen and Fishbein,²² there are two dependent variables for behaviour:

These two factors combine to form an intention. Apart from proper health education in our surgeries, could we also consider a more extensive participation in community services and health education programmes to create a social norm so as to improve the standards of our chronic disease management?

Conclusion

The misconceptions relating to self-management of asthma identified in this study raised many concerns, both in our consultation and at the public health level. The negative views on exercise and Western medicine are important areas for GPs to address. No practical strategies were in place to alleviate the worries of asthma self-management.

As identified by some parents, the resources put into asthma education in Hong Kong have been inadequate, and hence they may acquire knowledge of asthma from unreliable resources. This emphasizes the importance of health education in this area, both through doctor-patient interaction and community education programmes.

Key messages

1. There were parental misconceptions on the disease nature of asthma and bronchial hypersensitivity, their clinical importance and their differences.
2. Parents worried about allowing their children to exercise, use of Western medicine for asthma and tried alternative therapies.
3. Although parents accept diagnoses of asthma, they were reluctant to use drugs on a long-term basis since this was perceived as signifying more serious disease.
4. The main concerns for asthma management were time required to attend GPs. There were no practical strategies to relieve their worries relating to disease management.
5. Most parents believed there should be more resources directed to health education about asthma for care-givers.