Four key themes emerged from the FGDs and in-depth interviews and are discussed in the following sub-sections; 1. challenges with asthma care in Blantyre; 2. acceptability of using non-clinicians as educators; 3. perceived value of asthma education sessionsa; 4. facilitators and barriers to delivery and uptake of asthma education, including recommendations.
Challenges with asthma care in Blantyre
Busy clinical environment
Participants reported several challenges in accessing asthma care within the government health facilities. Both parents and children commented that health care workers did not have enough time to explain the various aspects of asthma management, both during admissions and outpatient attendances, largely due to the busy clinical environment. Parents felt unable to ask all the questions they had about their child’s medication and asthma more generally.
“…the explanation there is really brief, and you will be lucky if you find a person that is able to answer any question that you have because they are very busy.” Mother of 12-year-old asthmatic child, FGD.
In addition, some parents and children also expressed their concerns about hostile attitudes they had encountered from some medical staff previously, which affected their willingness to ask for clarification when needed. Children also reported they were given conflicting information from different doctors, which was confusing.
“Some doctors get really angry and annoyed when you keep asking questions.” Mother of 11-year-old asthmatic child, FGD.
“We kept on meeting different doctors at the clinic, that was really disturbing me because you end up being told different things by different people.” 13-year-old male asthmatic, FGD.
Access to information
Another challenge reported by both parents and children was the lack of asthma information provided by health care staff. Some parents expressed their lack of knowledge of what the disease (asthma) is and how it affects the human body. Specific areas of concern were what to do during an asthma attack and how to administer inhaled medication. Children said they were not aware of the triggers for their asthma or the importance of using inhaled treatments.
“In fact, I didn’t even know that asthma causes the airways to close but when we came here, they started teaching us from there” Father of 7-year-old child, FGD.
Access to medication
Access to inhaled medication was also expressed as a challenge, especially by parents, with inhaled medication largely unavailable at primary health centres. Parents described extremely stressful situations when they had no medication to use at home during a severe attack.
“She was attacked at around 10 in the night, we didn’t have an inhaler. So, we tried making phone calls to try and find an inhaler from other people, but we didn’t find it. And then we tried looking for transport, we still didn’t find it. We were only able to get to the hospital at 4 in the morning.” Father of 14-year-old asthmatic child, FGD.
Acceptability of using non-clinicians as educators
Perspectives of patients and families
The parents did not express any concerns that the education sessions were delivered by non-clinical personnel. Some of the parents said they assumed the educators had some medical training because of their professional manner. Many parents praised the educators’ overall competence and asthma-related expertise. The children said the asthma educators were friendly and caring and that they felt free to ask questions without fear of being rebuked. Parents also said the openness and friendliness of the educators made the children look forward to coming back for the next study appointment.
Perspectives of the asthma educators
The asthma educators said they were initially nervous to conduct the asthma education sessions with patients and their families. They reported that their knowledge on asthma was very limited before they participated in the training, after which they understood more about the disease and how to deliver the sessions. The educators also commented that they gained confidence to deliver the education sessions over time, with ongoing experience.
Perceived value of asthma education
Participants described various aspects of their lives were before the asthma education intervention and the subsequent impact of the education they had received (Table 2).
Table 2
Participant’s perceptions of the impact of asthma education on knowledge levels, symptom control and aspects of daily life.
Before asthma education intervention
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After asthma education intervention
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Participants’ reports of asthma knowledge
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No clear understanding of asthma, common triggers and inhaled medications.
Unable to identify asthma symptoms.
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Improved knowledge of asthma, common triggers and inhaled medications.
Greater understanding of what to do in an emergency.
Confidence to identify symptoms of asthma and manage appropriately.
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Participants’ reports of asthma symptoms
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Difficulties breathing at night, often interfering with sleep.
Frequent cough and wheeze.
Frequent visits to health facilities.
Frequent school absence.
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Families able to manage asthma symptoms more effectively.
Fewer attacks, school absence and hospital visits.
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Interaction between asthma and family life
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Disruption to sleep for whole family.
Stressful situations during deteriorating symptoms.
Staying home to care for child.
Removing child from school to allow closer monitoring.
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Greater control of asthma.
Knowledge of asthma triggers and self-management has reduced child’s symptoms and enabled parents to be more productive.
Improved asthma knowledge among wider family, including other asthmatic individuals.
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Interaction between asthma and school life
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Stigmatised by peers.
Lack of understanding among school community.
Belief that asthma is contagious.
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Children gaining support from peers through greater openness and understanding.
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Interaction between asthma and the community
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Negative attitudes towards inhaled treatment.
Belief in healing through traditional medicines and prayers.
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Parents keen to act as asthma advocates and share their new knowledge with the wider community.
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Children who were frequently sick and often missed school due to their asthma described a great improvement since implementing what they had learnt during the asthma education sessions. The improvement in clinical condition had a positive impact on family daily life, with families reporting reduced school absence and increased productivity at work.
“When it’s time for me to go to the village to farm, seeing that she won't be able to stay without being monitored, I was withdrawing her from her school here in town and I would go with her to the village. But all that stopped now - I am able to leave her.” Mother of 13-year-old asthmatic child, FGD.
Parents were previously anxious about how to manage their child’s asthma, particularly during an attack, and how to use their medication but reported increased confidence and a feeling of control, as a result of their increased knowledge levels.
“Most times…. when the child starts to get sick, we would not do anything. We would wait till maybe two days pass and then start off to the hospital. But when we were taught, it really helped…. When he gets sick again, before it reaches the point of taking him to the hospital, because of what we learnt in the research we are able to help him control the asthma before it gets worse.” Mother of 7-year-old asthmatic child, FGD
Both parents and children reported misconceptions and negative opinions relating to asthma and inhaled medication which they had experienced from family members, school peers and the wider community.
“When I am at school and I have asthma symptoms, my friends tell me that I am bewitched and when I am trying to play with them, they tell me that I will spread my asthma to them.”11-year-old male Child, FGD.
“Some of my friends scared me saying "That is a bad drug, if your child starts using inhalers now, his asthma will never improve and will be dependent on inhalers all his life." I was really scared so much that when I got home with him, I didn’t use the inhalers, I just kept them.” Mother of 6-year-old child, FGD.
Facilitators and barriers to asthma education
Intervention design: training, guidelines and support
The asthma educators and the study nurse mentioned specific resources which were helpful in ensuring the education sessions were delivered effectively. The asthma educators explained that the pre-study training they received was one of the main activities that helped them gain knowledge and confidence to deliver the sessions effectively. The educators also reported that education session checklist ensured that everyone was teaching information uniformly, was helpful in reminding the educators of their own training, and helped staff to focus while teaching the participants.
Both the educators and the study nurse mentioned that the support given by supervisors and peers was also essential in ensuring the educators delivered the sessions effectively. The study nurse reported that she was available to the educators to help answer any questions and provide any additional support as needed. The educators also described the positive and motivating effect of words of appreciation from the study participants.
Individual and open approach to education sessions
Both children and their carers reported that the asthma educators were very approachable, patient and friendly which helped in understanding the asthma education sessions. The parents also said the educators ensured they felt comfortable to ask any questions that they had about their child’s condition or asthma more generally. The educators described the importance of building a good rapport with their patients when meeting them for the first time as this ensured that everyone was open and free to learn and ask questions.
“First of all, we build a rapport in order to create an environment for both participant and guardian to feel that they are free…. they shouldn’t be afraid of anything.” Asthma educator, interview.
Asthma educators said the difference in levels of education of the parents was one of the main barriers to the delivery of asthma education. Although the session was delivered in Chichewa, which parents appreciated, some still found it challenging to follow the content.
The educators explained that due to different baseline education levels among parents and children, they made sure that information was delivered according to an individual’s ability to understand and paused frequently to check comprehension and give clarification. Parents appreciated the physical demonstration of inhaler administration techniques, using an improved “bottle spacer”.
Recommendations
The parents and the children reported recommendations that can be put in place to overcome some of the barriers to delivery and uptake of the asthma education that they experienced:
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Both the parents and children recommended that asthma education sessions should be conducted in a private and well-sheltered location.
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Some of the children reported that the education sessions interrupted their school schedule, and that this was problematic – however, others commented that this disruption was acceptable, due to the beneficial nature of the education sessions.
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Some parents highlighted the importance of providing additional written information, to reinforce the asthma education they had received. Written information would allow participants to revisit the information at a later date and also help share the knowledge with the wider community.
The key components of an ideal task-shifting intervention for asthma education by lay educators are summarised in Fig. 1.