Aetiology
None of the study participants, mothers nor children, actually knew what caused asthma. However, most of the participants had some kind of explanatory model explaining their asthma, ranging from their genes to a broad spectrum of triggers which cause asthma symptoms. It was discovered that most children, regardless of age or ethnicity, were taught about the aetiology of asthma by their GPs or paediatricians and not by their mothers or fathers. However, in spite of the ideas the children expressed about the possible aetiology of asthma, the majority of the children stated they were uncertain about the true aetiology:
"I don't know why I have asthma?" (the majority of the children), and "Why do I have asthma and my friend doesn't?" (a Dutch boy, 8 years old)
In addition, the majority of the mothers, regardless of ethnicity, were uncertain about the cause of asthma. One of the most striking similarities among the mothers was that they seemed to know that asthma has a genetic component:
" It runs in the family." (the majority of the mothers)
Moreover, a remarkable difference was seen in the immigrant Moroccan and Turkish mothers. The most commonly reported EM for the aetiology of asthma held by these mothers was the rainy, damp Dutch climate:
"When we are in Morocco, my child never has asthma." (a Moroccan mother), "We live in a very run-down house and because of the damp climate, the house is also very damp. This is the reason my daughter suffers from asthma." (a Turkish mother)
These types of comments, most frequently stated by the non-Dutch mothers, are examples that suggest that many of these mothers believed that the onset of asthma was related to a particular trigger. In addition to stating that the cold weather triggered asthma, the mothers mentioned dust, pets, cigarette smoke, playing sports and becoming fatigued as other possible triggers. Related to this, a common notion among all mothers and children was the idea of asthma as an acute rather than a chronic illness:
"Fortunately it is not present every day. Sometimes, very suddenly, it is there. It depends on what I do."(a Turkish boy, 16 years old)
In other words, the idea of no symptoms, no asthma was frequently heard among all mothers and children:
"During the summer my child doesn't have asthma." (a Turkish mother), "My child only has asthma in her father's house." (a divorced Dutch mother), "I only have asthma when I'm at school. It is very dusty at school says my mum!" (a Turkish boy, 8 years)
Course of illness
This category describes what the participants think of the general course of asthma. All mothers and children, regardless of ethnicity and age, had individual expectations about the course of the illness. These expectations were mainly focused on the consequences of the asthma in both the near and distant future.
Concerns/problems
The majority of the Surinamese mothers had the idea that, although their children would be affected by asthma their entire lives, they could live with it and manage the disease:
"If you know how to deal with your asthma, you can live with it!" (a Surinamese mother suffering from asthma herself), "If my child takes his daily medication, he can live a normal life and will have no problems in the future." (another Surinamese mother)
However, all ethnic Dutch mothers had strong concerns about their children's future, the level of education they could obtain and their careers. They mentioned that their children miss more school than their peers due to illness, and this could influence their marks. An opinion shared by both mothers and children of non-Dutch origin, and which is somewhat similar to the opinion expressed by the Dutch mothers, is that asthma can be particularly bothersome during the night and because of this the children are often very sleepy in the classroom and have trouble following class lessons. Another similarity that was highlighted during most child and mother sessions, regardless of ethnicity and age, was that children with asthma get tired more quickly and experience more physical constraints than children without asthma:
"I can't do everything my friends can do. Like swimming or gym in school. Most of the times I stand aside." (a Moroccan girl, 11 years old), "It is not that I can't do as much as my friends can do, I just get tired earlier and have to stop the activity." (a Dutch boy, 15 years old)
Because of these physical restrictions, young children are afraid of being bullied and excluded by their peers:
"None of the boys in our street ever ask me to join a football game, because they know I have asthma and so I can't run fast." (a Dutch boy, 11 years old)
On the other hand, there were some younger and older children, regardless of ethnicity, who told us that it could also be to an asthmatic child's advantage to tell friends and classmates about having asthma, because then they could show you consideration:
"I can't go to my friend's house to play, because they have a cat and I'm allergic to cats. Since my friend knows, we always play at my home." (a Turkish girl, 12 years old)
The Moroccan and Turkish adolescent boys did not share this view. These boys did not see the benefit of telling their friends they are suffering from asthma:
"As long as no one can see I have asthma, why should I tell them?!" (a Moroccan boy, 14 years old)
It remained unclear why exactly the Moroccan and Turkish boys felt this way.
Prognosis
A remarkable similarity in all mothers was the concern about the duration of the disease:
"When will my child get better?" (the majority of the mothers)
Nevertheless, most Turkish and Surinamese mothers were hopeful for the future. The majority of the participants, including mothers and children, shared the belief that asthma was less severe than in the past. Therefore, they were under the impression that the asthma would continue to improve. Some children were even convinced that they could outgrow their asthma. However, contrary to this hopeful idea was the pessimistic view held by the majority of the mothers and children that asthma would always remain a problem in their lives:
"Once I heard, I forgot who told me, that asthma is a chronic disease, which means, uuhh I have heard this too, that it will always bother me."(a Surinamese boy, 15 years old), "I think I will have asthma my entire life, because I was born with it." (a Turkish boy, 16 years old)
Onset of symptoms
This paragraph discusses what mothers and children perceived as provoking symptoms of asthma. When discussing the onset of symptoms of asthma, the mothers mentioned a very broad spectrum of triggers. One of the similarities between the majority of the children and mothers, regardless of age and ethnicity, was that they had clear ideas about which triggers provoke asthmatic symptoms. Some mothers mentioned triggers such as dust, grass, milk, peanuts, trees and animals, which can all be tested for in an allergy test. Other mothers mentioned triggers such as fatigue, crying, laughing, playing (sports), perfume, unpleasant smells, fog, rain, humidity, cold weather, cigarette smoke, cold, or spicy foods. All participants were quite sure of the provoking triggers and the following onset of symptoms:
"It is something you learn over the years." (a Dutch boy, 14 years), "I recognise the symptoms very early, I've learned it over the years. It looks like my child is drowning." (a Moroccan mother), "The moment my daughter tells me, puffing and blowing, that she is feeling tired, I know her asthma is bothering her." (a Dutch mother), "It always starts in the evening, when he is playing around with his younger brother. I always think he will drop dead. He looks so pale!" (a Turkish mother), "Thanks to my maternal instinct, I recognise the symptoms immediately. Sometimes my daughter gets stuck halfway up the stairs. I can see in her eyes that she is having a hard time." (a Surinamese mother)
An interesting difference between the adolescents boys and younger children was that the adolescents expressed experiencing a feeling of sadness when they feel the onset of symptoms, for instance during a football game or at a school party:
"I feel like a dope when it starts on the dance floor." (a Turkish boy, 15 years old), "For me I feel like a weakling when I need to stop before the game is over. Duhhhh, for me the game is over..." (a Moroccan boy, 14 years old)
Treatment
Asthma causes problems in the daily lives of affected children and their families. Treating this disease is a necessity, and the children and their families must find ways to manage the asthma. This section of the paper explains how children and mothers manage the asthma.
Avoiding triggers
In all sessions, regardless of ethnicity and age, we saw that children and mothers knew that by avoiding triggers, they could reduce the risk of an asthma attack. But even with this understanding that asthma triggers should be avoided, in actual practice it appeared to be sometimes difficult to do so. In particular, the avoidance of some triggers was considered to be beyond the control of the individual:
"Sometimes I can't avoid the trigger. I can't help it if it's misty!" (a Moroccan boy, 14 years old), "In our culture, it is bad manners to ask a guest not to smoke in the house." (Moroccan and Turkish mothers), "My child needs anti-allergic bed covers, but my insurance company will not reimburse the costs, so I can't afford it." (a Moroccan mother), "I don't want to stay home when my friends are going to the school party. But I can't avoid it when they smoke." (a Dutch boy, 15 years old), "Sometimes I feel confused. The doctors and my mum tell me it is good and healthy to do some sports. But, on the other hand, when I start running I'm short of breath." (a Surinamese girl, 12 years old)
In addition to being aware of the importance of avoiding triggers, a clear similarity among all mothers, regardless of ethnicity, was the idea that their children should live healthy lives in order to suffer fewer side effects from asthma. During all focus group interviews, both mothers and children mentioned that clean houses, no pets, healthy food, no smoking and plenty of exercise are factors which will help reduce asthma symptoms.
Medication
In all sessions, regardless of age and ethnicity, mothers reported that two forms of management include the daily ICSs and remembering to take salbutamol with you when leaving the house. When we asked more specifically about the proper use of ICSs as maintenance therapy, all mothers, with the exception of the Surinamese, expressed reservations in some form or another. Their experience with the efficacy of ICSs as maintenance therapy was very good. The Surinamese mothers even mentioned that they supervised the use of medication, in order to make sure that their children inhaled the right medication at the right time. Most Moroccan mothers voiced that they performed a self-assessment, and also their assessment was more emotionally then rationally supported:
"If my daughter does not show any signs of asthma, I can't give her uuhh, her orange medication. I think it's very sad for children to take daily medication when they are feeling OK." (a Moroccan mother)
The Dutch mothers shared an overall negative attitude towards ICSs. Most Dutch mothers reported performing a detailed self-assessment of the state of their childrens' asthma before deciding whether or not to administer their ICSs. They mentioned this is something they have learned over the years. Most of the time these decisions conflicted with their doctors' instructions. Some of the children were taken off ICSs by their mothers when symptoms were absent, and other mothers terminated therapy when symptoms did not abate despite adherence:
"Often I do not give my child her Seretide, because I fail to see the point of it. Treatment based on maternal instinct is still the best". (a Dutch mother)
This statement was based on the mother's maternal instinct and feeling rather than knowledge. Another reason behind their decisions to sometimes not give the medication was that the Dutch mothers also worry about long-term side effects of ICSs. These mothers thought it would be harmful to give them for a long period. The Turkish mothers were also under the impression that the use of ICSs will have some side effects. The most frequently mentioned side effects, which were also mentioned as the major factor preventing mothers from giving children their ICSs, were weight gain, growth retardation and addiction.
The only mothers who mentioned using alternative medication with their children were the Turkish and Dutch mothers. When the Turkish mothers administered alternative medication to their children, they stopped the regular medication. The Dutch mothers, however, mentioned using a combination of alternative and regular medication. Examples of the alternative medication used includes over – the-counter drugs and homemade herbal (cough) mixtures.
We also observed reservations towards medication among adolescents. The majority of the adolescents admitted they listen to their bodies when deciding whether to take their ICSs, although their mothers remind them daily:
"It's rather annoying my mother asking me daily if I've taken my Flixotide. What's that got to do with her? I don't want to get mixed up in her problems either. I'll take it when I feel symptoms." (a Turkish boy, 15 years old), "I manage my asthma myself. I'm old enough and wise enough to do so!" (a Moroccan boy, 15 years old)
In contrast, the majority of the younger children, regardless of ethnicity, were not reluctant to take their ICSs. However, almost all the children mentioned forgetting to take their ICSs on a daily basis. The majority of the children expressed that a reason for taking their ICSs daily is because their parents tell them to, not because they are aware of the effects of ICSs. While most children are reminded by their parents, others put their medication in places where it will catch their eye, for instance on the TV remote control or on the computer.
Relationship with doctors
Another important element in the management of asthma, according to all the mothers and children, is their relationship with their doctors. All mothers and children expressed that they had a fairly good relationship with their paediatricians, but less so with their general practitioners (GPs). The most frequently heard reasons for being satisfied with the care were the doctor taking enough time for the visit, listening to the complaint and taking it seriously, and being easily accessible and friendly. Many Moroccan and Turkish mothers said that they experienced a linguistic barrier and found it difficult to make themselves clear. One of the most frequently heard complaints among children as well as mothers was that their doctor could be very impersonal and cold:
"He only looks at his computer, instead of looking at my son. As if the computer is his patient!" (a Moroccan mother)