Participants’ backgrounds

A total of 54 participants took part in the study of which 46 were children and their family caregivers while the rest were the HCPs caring for the children. Majority of the children with asthma (15/23) and their caregivers were recruited from TASH. Of the total child participants, majority were female (13/23), within the age range of 8 to 12 (19/23) and between the grades of 1 and 5 (14/23). With regards to the family caregiver participants, majority were Muslim, were married females, were in the age range of 35 to 45 and completed high school. It was also apparent that nine were patients with asthma as can be seen in Table 1. Among the eight HCPs, majority were females and physicians (Table 2).

Table 1 Socio demographic characteristics of caregivers
Table 2 Profile of health care providers

Themes

The key findings from this explorative study were clustered into three key themes: low biomedical knowledge towards asthma, burden of asthma and management of asthma. The third theme for its part had three sub-themes, namely adherence to the biomedical treatment, use of traditional home remedies and religious healing and interaction with healthcare providers.

Low biomedical knowledge towards asthma

Both children and their caregivers reported that they were not well informed about the meaning of asthma by the HCPs. Majority of children with asthma have described signs and symptoms of asthma as difficulty of breathing, coughing and sweating. Caregivers who were themselves were patients with asthma also thought that genetic predisposition solely causes asthma as shown by the following quote.

“In my opinion the cause is hereditary because I am also asthmatic.” (Caregiver 8)

Some of the physicians also described that the children had limited knowledge about the disease and admitted that they didn’t adequately work on creating awareness about the disease to the children and their caregivers which affected their medication taking behaviors.

“Majority of children with asthma and caregivers do not know much about the disease and its behavior…So, they discontinue the medication as soon as they get a relief and they come back when symptoms aggravate.” (Physician 1)

All of the physicians also believed that majority of children with asthma as well as caregivers, had no clear knowledge about the cause of asthma as depicted by the following quote.

“Personally, I don’t think that children with asthma and their caregivers have a clear knowledge about the cause and aggravating factor of asthma. For example, some of them believed that asthma can be transmitted through coughing and inhalation like Tuberculosis.” (Physician 3)

Burden of asthma

Almost all children with asthma expressed the psychological and physical burden of asthma on their daily life. A notable example relates to the children recounting how asthma affected play time at school and relationships with school friends. Furthermore, majority of the children explained how their daily activities such as playing outdoors or their choice of meals were scrutinized by their caregivers which may have its own impact on their physical and social activity.

“I usually feel its impact while I play with my friends. There were times when I stopped playing because I was afraid that I might suddenly face difficulty of breathing in the middle of the game.” (Child 20)

“At school, most of the children don’t want to play with me because they believe that I couldn’t play or run as good as they do.” (Child 10)

“Since my mother fears that my asthma will be aggravated, she always yells at me whenever I went to play outdoors with my friends. Frankly speaking, I hate to stay at home.” (Child 8)

The children also explained that asthma made them feel worried and nervous. The emotional burden extends to worries related to their inability to administer the medicine by themselves. On the other hand, majority of caregivers reported that asthma caused feeling of dependency on the children. They also described that it made them shy and limited their communication with people. Fear of exacerbation of asthma was another thing both the children and caregivers worried as depicted by the quote below.

“My life has become different since I was diagnosed with asthma. Emotionally, I feel anxious in my daily activity.” (Child 1)

“I am so worried about my child’s condition in case she suddenly experiences exacerbation of asthma symptoms.” (Caregiver 8)

Management of asthma

Both biomedical and non-biomedical approaches were described in the process of managing asthma. By and large, the biomedical approach was the mainstay of treatment as would be expected in this hospital-based study although traditional healing was reportedly used as discussed below.

Adherence to the biomedical treatment

The major therapy in the pediatric chest clinic was inhaled steroids as explained by the HCPs. Different issues were however identified with regards to implementing the biomedical treatment both on the side of the care providers as well as the recipients. The major issue raised from the providers side were not achieving the goals of asthma treatment which were controlling acute exacerbation, improving patient’s quality of life and side effects. They reported high patient load in the hospitals and the inability of the physicians to correctly follow the recommendations of pediatric asthma management as reasons which are depicted by the following quotes.

“Most of the time, we don’t clearly classify asthma as mild, moderate, mild persistent etc. Therefore, the treatment in our clinic is more of symptomatic. In addition, as we treat children with steroid, we don’t strictly follow step-up, step-down principle.” (Physician 2)

“Personally, I am not fully confident when to prescribe steroids for children since the diagnosis is not clear and it is too difficult once it is started. I may give them high dose instead of medium dose and not sure when to discontinue the drug.” (Physician 4)

On the care recipient side, majority of children and caregiver participants described how they didn’t take their medication regularly as recommended and instead discontinued if they had no problem of breathing. This may have led among other things to the use of an opened inhaler after three or four months.

“I am taking the ‘oxygen’ (ICS) whenever my symptoms aggravate, like when I have difficulty of breathing.” (Child 3)

Majority of children and their caregivers believed that their asthma is under control while using ICS which they describe as ‘oxygen’. Both participant groups appreciated the necessity of the ICS although its use was in the form of a reliever rather than as a controller medicine. There were some children however who revealed taking the prescribed medication under the coercive force of their parents.

“I think it is a better medicine because it will enable me to breathe when I get difficulty of breathing. I mean it gives me oxygen.” (Child 8)

“Mostly, I am forced to take the “oxygen” (ICS)… I wouldn’t take it if my father did not strictly follow my medication.” (Child 11)

The health care providers likewise explained as to how children with asthma were taking ICS for some time and would then discontinue as soon as they felt better. Some of the HCPs also reported that children considered ICS as a reliever medicine instead of the preventer medicine as it was intended, as can be seen in the following quote.

“Most of children with asthma were not taking ICS as we prescribed; they took it on a PRN (on need) basis by themselves.” (Physician 2)

The children and caregiver participants reported different concerns about the medicine that are related to its ‘bad’ taste and smell, and loss of smell and taste. In addition, they also reported difficulty of administration, fear of side effects and general dislikes that contributed to their decisions not to take it as illustrated by the following quotes.

“I don’t like its smell. In addition, my tongue will not sense anything for some time after I administer the ICS.” (Child 3)

“As I heard from my friends, ICS will cause some side effects like hypertension and I think it will cause my child to be dependent only on this medication.” (Caregiver 22)

Some caregivers also described that they faced some challenges from the society about their children’s asthma therapy as depicted by the following quote from one of the caregivers.

“My neighbors and even my wife tried to persuade me that I shouldn’t administer ICS to my child as they thought it will make her dependent on this medication. However, this didn’t make me change my mind…” (Caregiver 9)

All of the physicians believed that children with asthma did not take their prescribed medicines, especially the ICS, as recommended. They explained that the reasons may be negative perception about the medicine, fear of side effects and ‘creating adaptation’ and difficulty of administration.

“I think that majority of our patients are undertreated… usually they hesitate to begin steroid treatment but once they started, they will rush to discontinuing the steroid.” (Physician 3)

“The main concern is that majority of the caregivers had a bad perception about the ICS… For example, they thought the medicine will make adaptation and through time the patient will not respond to this medicine…” (Physician 2)

Furthermore, all participants including the health care providers complained about the unavailability of ICS and other essential medicines in the hospitals which would then force the caregivers to buy them at a private pharmacy at a much more expensive price. It was also cited by some participants that the medicines may sometimes not be available even in the private pharmacies. This was depicted below by the quotes from an emotional mother and her child as well as an HCP.

“I was so disappointed when I couldn’t find the medication when my child was very sick. I thought the hospital has a separate chest clinic unit and serves many children with asthma daily. So, it was hard to believe that this huge hospital lacked this medication.” (Caregiver 21)

“The ‘oxygen’ which was prescribed for me is not available in the hospital. For example, last time we couldn’t find the medicine. Then my mom was forced to buy it from private pharmacies. Currently, it is also not available everywhere (in town).” (Child 21)

“I don’t think that ICS as well as salbutamol is available in adequate amount in this hospital, I mean it (availability) is not constant.” (Physician 3)

Use of traditional home remedies and religious healing

Majority of the children with asthma as well as their caregivers cited that they used traditional home remedies as well as religious healing practices on a complementary and alternative basis. With regards to the home remedies, the most commonly mentioned were “tazma mar” (a special type of honey obtained from stingless bees), and other remedies that they believed will help with their asthma such as ‘milk with honey and garlic’. Caregivers also shared the use of preventive measures such as making adaptation at home and dietary modifications such as avoiding cold foods (e.g. ice-cream) and giving warm foods and drinks. Illustrations of the above can be seen in the following quotes.

“Sometimes, I will give him a special honey called “tazma mar” because, I heard that it is good for relieving cough and other symptoms of asthma.” (Caregiver 3)

“Oftentimes, I discontinued administering the medication and started natural treatment like dressing him in a sweater, giving him honey and milk with garlic.” (Caregiver 12)

There was also the practice of religious healing to help manage the asthma as can be seen in the quote below.

“We usually went to church to pray and I will drink holy water when my symptoms get worse.” (Child 3)

Interaction with healthcare providers

The interaction that the children and caregivers had with the HCPs can be described in generally as good and friendly. The high patient load in these tertiary hospitals however preclude the provision of adequate education about asthma. Some of the HCPs also expressed expectations that the children may have some knowledge about their condition given by the other colleagues which further reduced the amount of information provided. These ideas are depicted by the following quotes.

“I have a good relationship with the healthcare providers. I like their friendly relation with my child and he also liked them. So, he is happy when there is an appointment to this clinic.” (Caregiver 9)

“I think the children may not have adequate knowledge about the disease because we are not working on creating awareness about the disease due to patient load in the clinic.” (Physician 2)

“Since I believe that the doctors will advise them before coming to the pharmacy, I don’t usually advice about the disease. However, I will tell them little about the administration of ICS.” (Pharmacist 1)

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