Navigating childhood asthma care in Kenya: barriers identified by children and their caregivers

Abstract

Background

Asthma is one of the most common chronic conditions in children, with significant morbidity and mortality, especially in Africa. Achieving adequate asthma control in children remains challenging because of gaps between standard recommended management strategies and actual treatment practices. This study explored barriers to asthma management as perceived by children and their caregivers in a private tertiary care setting in Kenya.

Methods

An exploratory phenomenological qualitative study was conducted at Aga Khan University Hospital (AKUH), Nairobi. Children aged 6–18 years with a confirmed diagnosis of asthma and their caregivers were recruited. The participants had been receiving treatment for at least one year but had partly controlled or uncontrolled asthma. Purposive sampling was used, and in-depth interviews were conducted with 14 child-caregiver pairs until data saturation. The data were analysed via NVivo software version 12.

Results

Three predetermined themes were highlighted and explored in this study. These were barriers to medication use, barriers to treating modifiable risk factors, and barriers to nonpharmacological interventions. One emerging theme was identified: loss of trust in the health care system. Barriers to medication use were most frequently reported and included challenges with drug administration, forgetfulness, lack of support from schools and extended families, stigma, and monotony in treatment regimens. Modifiable risk factor barriers focused on difficulties attending clinic appointments, whereas nonpharmacological intervention barriers included the high costs of implementing recommended adjustments and ineffective environmental control.

Conclusions

Despite access to specialist-led care and good caregiver knowledge, children with asthma faced barriers such as poor medication adherence, environmental triggers, limited drug access, and inadequate school support. This suggests that expert care alone is insufficient, and a broader, system-wide approach is needed to improve asthma outcomes in Africa.

Supplementary information

The online version contains supplementary material available at 10.1186/s12887-025-06013-9.

Background

Asthma is a prevalent chronic respiratory condition in children, contributing significantly to global childhood morbidity and mortality [1]. It is defined by the Global Initiative for Asthma (GINA) as a heterogeneous disease with variable symptoms and chronic airway inflammation [2]. Severe asthma remains a significant challenge, defined by the need for high-dose inhaled corticosteroids and long-acting beta agonists (ICS-LABAs) to achieve or maintain control [2].

Global childhood asthma prevalence stands at approximately 10.2%, with higher rates in Africa at 11%, latin America 14% and Oceania 23% [3]. In Kenya, ISAAC (International Study of Asthma and Allergies in Childhood) data report a mean symptom prevalence of 14.8% [4]. Despite established diagnostic frameworks and treatment guidelines, asthma remains underdiagnosed and poorly controlled in sub-Saharan Africa. In 2024, a study on Asthma symptoms, severity, and control with or without a clinical diagnosis of asthma in adolescence in sub-Saharan Africa (ACACIA) by Oyenuga et al. found that two-thirds of adolescents had severe asthma symptoms, yet most lacked a formal diagnosis [5]. Among those diagnosed, a significant proportion were not receiving treatment, pointing to barriers beyond diagnosis [5].

These barriers to effective childhood asthma management can be grouped into three main domains as determined by the GINA 2025 guideline treatment framework: barriers to medication use, barriers to treatment of modifiable risk factors and comorbidities, and barriers to non-pharmacological interventions. Challenges related to medication use include inadequate communication from healthcare providers, which limits caregivers’ understanding of asthma and its treatment [6–9]. Denial of diagnosis [9], stigma surrounding inhaler use [7], and reliance on traditional remedies [10] further contribute to poor adherence. Difficulties in symptom recognition among children and caregivers also hinder timely treatment and effective self-management [8, 11]. These fall under barriers to treatment of modifiable risk factors and comorbidities. Limited control over housing conditions, exposure to triggers, and school restrictions on inhaler use—reduce the effectiveness of non-pharmacological interventions [12]. Collectively, these factors contribute to poor asthma control, resulting in frequent exacerbations, increased school absenteeism, hospitalizations [13], and financial strain on families and health systems [14].

This study explores perceived barriers to asthma management among children and their caregivers at a tertiary clinic in Nairobi. While specialist care is often seen as the benchmark for improving asthma outcomes in Low Middle Income Countries (LMICs), this study seeks to understand why many children continue to have poor control despite access to such care. Insights from this work aim to inform broader strategies beyond clinical access to improve asthma management outcomes.

Methodology

Study design

An exploratory phenomenological qualitative research design was used to explore the barriers to asthma management from the perspectives of children and their caregivers.

Theoretical framework

Health belief model

This study was guided by the health belief model (HBM) (Fig. 2), as expounded by Naimi et al. 2009 below [15]. The HBM predicts individuals’ likelihood of adopting behaviours aimed at preventing or managing illness [16]. Our study focused on perceived barriers, which guided the operationalization of the study variables and thematic analysis of the study findings.

Fig. 2.

Health belief model [15]

Study location

This study was conducted at the paediatric chest clinic at Aga Khan University Hospital (AKUH). AKUH is a tertiary referral nongovernmental institution located in Nairobi, Kenya. AKUH predominantly serves middle- and upper-class populations and hosts busy paediatric chest clinics operated by pulmonologists four days a week. On average, 467 paediatric patients diagnosed with asthma visit the chest clinic at AKUH annually. AKUH was purposively selected because, as a referral hospital, it receives a substantial number of children receiving specialized asthma care from across Kenya and other countries in Africa.

Study population

Children aged 6–18 years (and their caregivers) with a confirmed clinical diagnosis of asthma by a paediatric pulmonologist were included in the study. Study participants were required to have been receiving regular treatment at the chest clinic for at least one year but continued to have partly controlled or uncontrolled asthma. This was necessary to help in understanding why they remained partly controlled or uncontrolled despite receiving optimal treatment and guidance at the clinic.

Asthma control was assessed via the GINA asthma control test [17]. Symptom control over the past four weeks was evaluated on the basis of the presence of daytime symptoms more than twice per week, any night waking due to asthma, the use of a short-acting beta-agonist (SABA) reliever more than twice per week, and activity limitations due to asthma. Partially controlled asthma was defined by the presence of 1–2 of these symptoms, whereas uncontrolled asthma was characterized by 3–4 symptoms.

Inclusion and exclusion criteria

All children aged 6–18 years with a confirmed asthma diagnosis by a specialist, receiving regular treatment at the chest clinic for at least one year, and classified as having partly controlled or uncontrolled asthma as per the asthma control test; as well as their caregivers were purposively selected to take part in the study. However, those with chronic illnesses such as chronic rhinosinusitis or gastroesophageal reflux, which could confound asthma management, and those not conversant in English or Kiswahili were excluded from the study.

Sample size and sampling procedures

Purposive sampling, a non-probability sampling method, was employed to identify patients with characteristics most relevant to addressing our research question. Participants meeting the inclusion criteria were recruited during routine visits over a four-month period. The primary investigator collaborated with the chest clinic triage nurse to identify eligible participants via a screening survey (designed using the GINA guidelines assessment for symptom control) provided to caregivers during clinic visits. The screening survey also included a section to record any history of nebulizations or previous hospital admissions in the past year, along with the participants’ contact details (Appendix 1).

Contacts of eligible participants were obtained from the completed surveys. The primary researcher subsequently contacted participants via telephone to explain the study objectives, confirm their interest, and schedule an appointment, preferably during their next clinic visit or at their convenient time.

Being a homogenous population in terms of economic status, interviews were conducted until data saturation at a sample size of 14 participants.

Data collection procedures

In-depth interviews were conducted to collect data from the consenting participants. A semistructured interview guide was administered in either English or Kiswahili, depending on the participant’s language of preference. The guide was developed in English, translated to Swahili and back-translated by a bilingual to ensure linguistic validity. The interview guide questions were informed by conceptual and theoretical frameworks (Figs. 1 and 2) and other questions adapted from the literature [8]. A content expert reviewed the guide to ensure content validity.

Fig. 1.

(Conceptual Framework): Barriers to asthma management as adapted from literature review and extrapolated from GINA guidelines [2]

The interview guide covered information such as the demographics of the study participants, the child’s and caregiver’s experiences in asthma management across three key domains, namely, barriers to medications, barriers to the treatment of modifiable risk factors and comorbidities, and barriers to nonpharmacological interventions, as shown in Fig. 1. The interview guide was pretested with one child-caregiver dyad (excluded from the study) to ensure face validity and estimate interview duration.

Eligible participants were invited via phone by the primary researcher and provided with study details before a convenient interview time was scheduled. On the appointment day, consent was obtained, and in-depth interviews were conducted by the primary researcher in English or Swahili, depending on the participant’s language of preference, in a private room at the hospital.

The interviews lasted approximately 13 min for children and 27 min for caregivers on average. The child was interviewed first, followed by the caregiver. Children over the age of 13 were interviewed individually, as adolescents may be reluctant to discuss certain topics in the presence of their parents. Parents were interviewed afterward. In contrast, younger children were interviewed with a parent present.

All interviews were audio recordings and field notes were taken during the interviews. As a homogenous population in terms of economic status, interviews were conducted until data saturation at a sample size of 14 participants.

Data management

Audio recordings were transcribed verbatim by a research assistant (experienced in qualitative research) and verified by the primary researcher for accuracy. Swahili transcripts were translated into English, with back-translation by a native Swahili speaker to ensure meaning retention. The transcripts were cross-checked against field notes for consistency and analysed via NVivo software version 12.

Data analysis

Both deductive and inductive thematic analysis approaches were employed. Predetermined themes derived from the conceptual framework guided the initial coding frame, which was refined with emerging themes/subthemes from the data. Thematic analysis followed five phenomenological procedures: bracketing researcher biases, identifying units of meaning, grouping similar codes into themes, summarizing interviews for validation, and constructing a composite thematic summary presented in thematic categories.

Results

Participant demographics

A total of 14 interviews were conducted with child-caregiver pairs. The average duration of the children’s interviews was 13 min (ranging from 6 to 30 min), whereas the caregivers’ interviews lasted an average of 27 min (ranging from 15 to 52 min). The average age of the child participants was 13 years (from 6 to 18 years), and for the caregivers, it was 45 years (from 27 to 57 years).

Among the 14 children interviewed, 11 were male (78.5%). Half of the participating children attended boarding school. Of the 14 parents interviewed, 12 were female. The majority (92.8%) held higher education qualifications, such as diplomas or undergraduate or master’s degrees. 64% of the caregivers were married, and all had an active insurance policy for their child at the time of the interviews.

Challenges in asthma management

Three predetermined themes were highlighted and explored in this study. These are barriers to medication use, barriers to the treatment of modifiable risk factors and barriers to nonpharmacological interventions. One emerging theme was identified: loss of trust in the health care system. Table 1

Table 1.

Summary of study findings

Specific objectives	Main Themes	Subthemes
To explore barriers to asthma management medication as perceived by children and their care givers.	Barriers to medication use	• Difficulty in administering the drug to the child • Forgetfulness • Lack of support from extended family and schools • Stigma • Patient or caregiver beliefs • Cost of medication • Tedious routine • Pill burden • Availability of the medication • Absence of overt illness • Adverse effects of the medication
To explore barriers to treatment of modifiable risk factors and multimorbidities of asthma as perceived by children and their care givers.	Barriers to treatment of modifiable risk factors.	Barriers to regular clinic • Absence of overt illness • Negative experience in the clinic e.g. long queues • Conflicting commitments e.g. work • Consultation fees • Political insecurity • Inaccessibility to appropriate emergency care services
To explore barriers to asthma nonpharmacological management therapy as perceived by children and their care givers.	Barriers to nonpharmacological interventions.	• Difficult to avoid triggers e.g. dust • Limited control on environment e.g. rentals with molds, school environment • Cost of making adjustments

Barriers to medication use

All the children involved in the study followed an inhaler regimen prescribed by a pulmonologist. Parents and older children who self-administered the inhaler reported receiving instructions on how to administer the medication appropriately while in the hospital. The perceived barriers to medication use reported by parents and children are discussed below.

Difficulty in administering the drug to the child

Some children expressed a dislike for the inhaler, and their parents noted the child’s reluctance to use it, which made administering the medication challenging.

"He hates the inhaler, yeah, he really hates it. We actually fight for him to use it. So, when he goes to school, I cross my fingers he’s uses it..."

CA05 (Mother to 6-year-old).

Forgetfulness

The majority of older children who self-administer their inhalers identified forgetfulness as a key challenge in adhering to their medication, hence lowering their self-efficacy in managing the condition. They explained that this was often caused by other commitments, particularly at school, which kept them busy. The worsening of symptoms or reminders from a friend or family member typically serves as a cue to action.

"I would find that maybe I was so busy during the day, especially in school, so by the time I realize I’ve not taken it, it’s like a day or two days have passed. I’ll now rush and then I take, but I already start feeling the tightness back then."

CH14 (17-year-old male)”.

Lack of support from extended family

Parents were generally well informed about their children’s treatment regimens. However, when children are away from home, such as with extended family or at school, their management often relies on others who do not always follow the recommended treatment.

"I’m saying he went to his grandma’s place. The seretide we use at home was almost over, so I put a new seretide. It came back like that. They didn’t open, they did nothing, and he came back sick.…. And the solution is just an inhaler."

CA05 (Mother to 6-year-old).

Lack of support from schools

Schools pose a particular challenge, as teachers and school nurses were reported to be slow in responding to exacerbations. Additionally, parents were uncertain about whether their children adhered to their medication while in boarding school.

"Then asthma like today, I can’t go to the nurse because the nurse will just say I’m faking. I’m supposed to go when it’s bad."

CH13 (16-year-old male).

Stigma

Some parents and children expressed discomfort with others knowing about their asthma diagnosis or using inhalers in public. They feared that it might lead to them or their children being perceived in a certain way.

"I don’t like using it in front of people yeah so, I just step out or like walk away then come back well or when it’s really bad when I have no choice well yeah, I go ahead and use it at that time but I don’t like using it in front of people yeah…. I don’t want someone to feel that they should be worried about me when probably they are all having fun and stuff like that."

CH08 (18-year-old female).

Patient or caregiver beliefs

Parents voiced concerns about accepting the asthma diagnosis and the use of regular inhalers. One parent shared that she struggled to accept the diagnosis and even sought second opinions by visiting multiple hospitals. Another expressed worries about using steroid inhalers on her child at such a young age and the potential long-term effects.

"I didn’t want to imagine that yes; I have found that from the research no one in my lineage with this thing yet now the doctor is telling me that my daughter is like this. And actually, I remember there is a time when we had to go to **, **, we had to loiter from one hospital to another seeking a second opinion and unfortunately, it became the same that its asthma."

CA04 (Mother to 14-year-old-female).

Tedious routine with daily medications

Several parents and children expressed concern about the daily use of the inhaler and the resulting fatigue. However, despite acknowledging this fatigue, many noted that they continued the medication due to its perceived benefits.

"So sometimes maybe it is, he also gets tired of taking it sometimes he plays around so he doesn’t take it in quite well. But then once he demonstrated again how he should do it, he would be good to go."

CA 10 (Mother to 8-year-old).

Availability of the medication

Parents raised concerns about the availability of medication, with some reporting difficulty accessing certain formulations of inhaled corticosteroids in different parts of the city. Others mentioned a period when there was a shortage of salbutamol inhalers in the market due to rebranding. For some setting aside time to renew inhalers was a challenge owing to conflicting obligations as well as perceived low susceptibility to exacerbations.

"For me the biggest challenge is getting his medication not because of cost, availability… Availability is, so you can imagine if Symbicort in Kitengela, which is a cosmopolitan, I can only get it in **…."

CA09 (Mother to 15 years old).

"Now, it a got finished by the way, when we were… she was at school, but now to go now and get another one becomes a disaster due to my tight schedule."

CA04(Mother to 14 years old).

Stop using inhalers when feeling well

Low perceived susceptibility to exacerbations was identified as a barrier to medication use. Some children and parents mentioned that once the child was feeling well, they believed that there was no need to continue using the inhaler.

"I don’t use any medication at home. It does not disturb me at all. Yeah."

CH13 (16-year-old male).

Adverse effects of the medication

One parent acknowledged the side effects of the medication as a challenge but reported that this did not deter them from continuing with the treatment regimen.

"The challenges again, we have when she takes the puffs, she gets tremors… she gets tremors and then dry throat sometimes, you just see she’s not okay, but now there is nothing I can do because when I asked, I was told it’s the effect of the medication, yeah…."

CA06 (Mother to 9 years old).

Barriers to treatment of modifiable risk factors

The majority of the participants were aware of asthma symptoms and were prompted to manage worsening symptoms. However, some challenges were observed, particularly concerning regular clinic attendance.

Absence of overt illness

Parents reported a reluctance to attend clinic appointments when their child was feeling well. Although they were aware of the need for regular visits, they often did not follow through, owing to a perceived low susceptibility to exacerbations.

"He gave us a follow-up clinic for him and I think his last clinic… was it January or March maybe, we even missed one or two, yeah. Laughing… but yeah, I think the last time we spoke we… we… we are supposed to have regular clinics, how consistent we are, that is something else, yeah… I think because he’s okay."

CA03 (Mother to 8-year-old).

Political insecurity

One parent highlighted how political instability had an impact on access to healthcare.

"I missed one because of demonstrations, unfortunately, yeah. It was the one I missed."

CA05 (Mother to 6-year-old).

Cost of consultation services

All patients in our study had some form of insurance coverage; however, many reached their coverage limits, forcing them to pay for consultations out of pocket, which placed a strain on the family.

"Yeah… yeah, it’s a big challenge noting that the economy is not good… doing well, yeah you will find us that those who are employed, we will over depend with the medical card that we have been given. So, when we are overboard the limit and now, we have to fetch money from our own pocket, yeah you find it is a big challenge anyway, because per visit it’s not some few coins, it’s… it’s a lot."

CA04 (Mother to 14-year-old female).

Time to attend clinics

Parents reported that conflicting obligations, such as work commitments and children missing out on school activities, were barriers to attending regular clinic appointments.

"Let me say I’ve been tight. I’ve been tight in my place of work, the dad is also a banker, we are tight, yeah and then also she is in boarding, so that maybe time of going and pick her, coming to the clinic, yeah sometimes we… we find it like it… it is inconveniencing on our end."

CA04 (Mother to 14-year-old female).

Negative experience in the clinic

The parents expressed grievances about the extremely long queues and waiting times during clinic visits, noting that doing so was discouraging and sometimes served as a barrier to attending regular appointments. They also raised concerns about the overcrowding of patients in waiting areas.

"Mehn, Dr ** is tight… is tight. I think maybe when you see the queue you will always think you just enter you finish with him and you give your own… you go. I don’t know whether he has a specific place to sit…that small place. I don’t like it by the way, it is congested eh, mehn."

CA04 (Mother to 14-year-old female).

Inaccessibility to appropriate emergency care services

Parents reported that despite attending regular clinics, there are times when their children require emergency care. Unfortunately, the care received in these situations is sometimes not optimal for managing the exacerbation or is delayed, leading to worse outcomes.

"sometimes Dr ** is not available, unfortunately. So, when you go to another doctor, because you have to bring him to hospital, he’s put on antibiotics. So, by the time Dr ** is back he’s like, this child has not gotten better, and the inhalers are not working… The doctor would have already prescribed antibiotics, cough syrup, I think even a steroid to open up the… because he clogs completely."

CA05 (Mother to 6-year-old).

Barriers to non-pharmacological interventions

All participants in our study recognized the triggers for asthma exacerbations and made efforts to avoid them. Some identified triggers included dust, insects, molds, respiratory infections, emotions, cold air, and certain foods, such as fish. Nearly half of the participants had undergone allergy testing at the clinic. The barriers to avoiding these triggers are discussed here.

Cost of making the required adjustments

Parents reported being aware of the triggers and having received advice on necessary adjustments to make in the home to minimize them. However, they expressed concern about the cost implications of making these changes. One parent noted that the molds in the rental triggered asthma exacerbation in her child; however, she had limited control of the rental environment and did not have the finances to move to another house.

"It very expensive, yeah. It is very… very… very because we had to buy the bedsheets, we had to buy everything like; the vacuum, we had… eeeh it’s a lot. But I’m supposed… I want to buy a metallic bed. I’ve not bought that but that’s the plan because we saw those things don’t survive on metals, on woods they do… on wooden."

CA05 (Mother to 6-year-old).

Difficulty in avoiding triggers

Parents and children highlighted that certain triggers, such as cold air, dust, emotions, and viral infections, are particularly challenging to avoid.

"With the dust sometimes I would even go to school with the face masks to reduce on the dust but when I came home is when you would see I’m worse, then I had to increase my dosage and stuff like that yeah."

CH14 (17-year-old male).

"But I think mostly his trigger would be if he’s with somebody who has a cough. So usually even during school time, so the question I would ask him is, who in your class is sick? Yeah, yeah, it’s quite tricky to avoid."

CA10 (Mother to 8-year-old male).

Limited control of the environment

One parent acknowledged that mold was a trigger for her child’s asthma. However, by the time she noticed the mold in the rental home, she had already paid deposits and made adjustments to the house. Owing to the financial burden of relocating, she was unable to move with her daughter at that time.

"But now, she’s gotten it several times, because the bedroom is kind of damp and it has molds and all that. But for… when you look at it critically, there’s nothing they can do. So, it is us to move out, yeah, because it’s dangerous; it’s a health hazard."

CA06 (Mother to 9 years old).

Emerging theme: loss of trust in the health care system

Some parents expressed disappointment with how doctors managed their children’s care when they sought emergency treatment from general practitioners or other facilities. As a result, some chose to have their child’s asthma treated exclusively by a pulmonologist, whereas others opted to obtain medication from a pharmacy.

"So, we come, you go to a normal doctor and gives us antibiotics…I take him somewhere, instead of giving him an inhaler, they give him cough syrup… It’s too bad. It’s like they don’t know… I don’t know. Even if you tell them, it’s asthma, they tell you to increase Seretide, let me prescribe Seretide but use the rest…I stopped. Unless it’s diarrhea. That’s when I’m going. But the chest problem, no, because I discovered, as I said, too much medicine and it does not work."

CA05 (Mother to 6-year-old).

"I’ve had frustrations from hospitals, even renowned hospitals. This makes me go for an alternative of rushing to a chemist, where I don’t need to explain myself, where I don’t need to tell you what you’re supposed to do."

CA09 (Mother to 15-year-old).

Discussion

This study identified several barriers to effective childhood asthma management, as perceived by children and their caregivers. These were grouped into three predefined categories: barriers to medication use, barriers to addressing modifiable risk factors and co-morbid conditions, and barriers to non-pharmacological interventions. An additional theme that emerged was a growing loss of trust in the healthcare system. Notably, all participants in the study had been receiving regular care from a pulmonologist for at least one year, during which they were prescribed inhaler regimens and provided with instruction on proper inhaler use, symptom recognition, and asthma exacerbation management. Despite these efforts, various systemic and contextual challenges continued to interfere with optimal asthma control.

The Chronic Care Model (CCM), developed by Wagner offers a useful framework for understanding the complex, multi-level barriers identified in this study [18]. The model highlights six essential components for effective chronic disease management: the health system, delivery system design, decision support, clinical information systems, self-management support, and community resources.

Within the domain of the health system and organization of care, participants exhibited a strong understanding of asthma management. Although this was not objectively assessed, patients could recognize when prescribed medications differed from those recommended by their pulmonologist. This study assumed that the pulmonologist’s treatment recommendations aligned with current GINA guidelines or were informed by expert clinical judgment. This is in line with findings from western Kenya, where over 70% of respondents demonstrated adequate asthma knowledge [7]. In contrast, other studies have identified insufficient information and poor communication from health providers as major barriers [9, 10]. The difference in findings may be attributed to the regularity and continuity of care with a specialist in the current study, which facilitated repeated educational reinforcement. However, challenges such as insurance lapses, long clinic wait times, and costs associated with routine care (e.g., consultation fees and medication costs) threatened continuity and satisfaction with care. Zhang et al. (2023) noted that perceived wait times strongly influence satisfaction and adherence in chronic care, underscoring the importance of clinic design in enhancing service delivery [19].

In terms of delivery system design, although clinical management was largely consistent, participants reported practical barriers such as forgetfulness, discomfort with inhaler use, and lack of systemic support in day-to-day environments. Adolescents in particular frequently forgot to take their medications, citing busy school schedules or lack of symptoms—an observation consistent with findings by Naimi et al. (2009) [15]. Other issues included dislike to daily medication routines, especially among younger children who disliked the spacer or who found the process tedious. These experiences parallel findings from Kassa et al. (2022), where medication adherence decreased during asymptomatic periods or due to dislike of administration methods [10].

Another notable delivery barrier involved the availability of inhaled corticosteroids (ICS) outside the study facility. Caregivers expressed frustration about inconsistent access to ICS in peripheral pharmacies and smaller hospitals. This sometimes forced them to alter their children’s treatment plans or request targeted stocking through outreach services. Similar issues were reported in Ethiopia, where caregivers and physicians noted poor ICS access [10]. Considering that medications such as budesonide-formoterol are on the WHO Essential Medicines List, this highlights the need for broader health policy intervention to improve equitable access.

The decision support component of the CCM was reflected in the participants’ knowledge about asthma symptoms, triggers, and medication side effects. Most caregivers and children were able to recognize signs of exacerbation and knew how to respond appropriately, demonstrating the impact of sustained health education. However, adherence remained suboptimal due to factors like perceived wellness, fear of stigma, and social discomfort—particularly among adolescents hesitant to use inhalers around peers. These challenges were mirrored in findings from Sub-Saharan Africa [20] and North America [12], although the degree of social stigma varied by region. Encouragingly, even when participants experienced side effects such as tremors from salbutamol, they remained committed to their regimens due to reassurance from their clinicians. This contrasts with studies showing greater reliance on alternative therapies and suspicion of inhaler safety [9].

The role of clinical information systems was not explicitly examined in this study; however, the regularity of follow-up suggests some level of tracking and continuity of care. Nevertheless, forgetfulness and missed doses, particularly during sleepovers or school trips, suggest that more robust systems—such as reminder tools or medication tracking—could strengthen adherence.

Self-management support was a central theme, as both children and caregivers showed a high degree of understanding about asthma and its management. Nonetheless, environmental and financial limitations often constrained their ability to act on this knowledge. For instance, although families understood the need to eliminate triggers, they were often unable to modify their homes due to financial constraints or landlord restrictions. School environments also posed a challenge, as exposure to strong fumes and dust exacerbated symptoms. These findings mirror those of Laster et al. (2009), where caregivers felt unable to exert control over environmental triggers despite being well-informed [12].

Community resources and policies were found to be inadequate, particularly in supporting children in school or under the care of extended family. Participants described scenarios where children were thought to be pretending during exacerbations or felt uncomfortable using inhalers in front of others due to stigma. Such issues were similarly reported in other settings, with institutions either lacking policies for asthma management or unintentionally reinforcing stigma [12, 20]. This highlights the need for inclusive asthma education campaigns that target not only families but also school personnel and community stakeholders.

An emerging theme in this study was a gradual loss of trust in the healthcare system. While participants largely maintained trust in their pulmonologists, frustrations related to inappropriate emergency care and medication access risk undermining long-term engagement. This underscores the need for health systems to strengthen not just clinical care, but also the surrounding ecosystem that supports families managing chronic conditions.

In conclusion, applying the Chronic Care Model to the findings of this study highlights both strengths and weaknesses in current asthma management practices. Although regular specialist care and patient education were strong points, gaps remain in medication access, systemic support, and community engagement. A more integrated approach addressing all six CCM components—especially delivery system design, community resources, and financial accessibility—would significantly enhance outcomes for children living with asthma.

Strengths and limitations

To the best of our knowledge, this study is the first of its kind in Kenya. It uniquely explores barriers to asthma management among Kenyan children with access to regular specialist care. Despite receiving this kind of care, many still experienced poor control, highlighting challenges beyond basic access. While offering valuable insights, the study’s small, highly educated sample limits generalizability.

Conclusion

In conclusion, although participants in this study were receiving regular specialist-led asthma care and demonstrated strong knowledge about their condition, many continued to face significant barriers to achieving effective symptom control. These challenges included difficulties with medication adherence, exposure to environmental triggers, limited availability of medications, long waiting times at clinics, and insufficient support within schools and communities. These issues persisted despite access to what is considered optimal clinical care. This highlights the fact that increasing the diagnosis of asthma in children and expanding access to expert clinical care alone will not be sufficient to resolve the asthma care crisis in Africa. Addressing these persistent barriers will require a comprehensive approach that involves strengthening healthcare systems, reducing the financial burden of care, addressing stigma, and improving education and support at the household, school, and community levels.

On the basis of our study, we recommend that key stakeholders—including healthcare facilities, schools, the Respiratory Society of Kenya, and policymakers—collaborate to create a supportive framework that strengthens asthma care in schools, enhances emergency care in healthcare settings, ensures the availability of essential asthma medications, provides public asthma education, and establishes well-structured, accessible clinic schedules. Additionally, further research is needed to evaluate the impact of existing and emerging interventions, such as asthma tracking applications, in overcoming barriers to asthma management.

Abbreviations

ACACIA

Asthma symptoms, severity, and control with or without a clinical diagnosis of asthma in adolescence in sub-Saharan Africa

AKUH

Aga Khan University Hospital

GINA

Global Initiative for Asthma

HBM

Health belief model

ICS

Inhaled corticosteroid

ISAAC

International Study of Asthma and Allergies in Childhood

ISERC

Institutional Scientific and Ethical Review Committee

LABA

Long-acting beta agonist

LMICs

Low Middle Income Countries

NACOSTI

National Commission for Science, Technology and Innovation

WHO

World Health Organization

Authors’ contributions

JA Conceptualization, methodology, data collection and analysis, manuscript writing-original draft, review and editing. AM conceptualization, manuscript writing, review, editing, and supervision. RR Methodology, data analysis, manuscript writing-review and editing, supervision. SO Conceptualization, content expert, data analysis, manuscript writing-review and editing, supervision.All the authors read and approved the final submission.

Funding

This study was funded by the Department of Pediatrics, Aga Khan University.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

Ethical clearance was obtained from the Institutional Scientific and Ethical Review Committee (ISERC) reference number 2023/ISERC-60 (v3). Research permits and licences were obtained from the National Commission for Science, Technology and Innovation (NACOSTI) (licence number NACOSTI/P/23/31658). The primary investigator obtained the caregiver’s written agreement for the dyad via a consent form that included a thorough explanation of the research process. Assent was also requested from all the children who participated in the study.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.