A total of 26 parents of children with asthma participated in this study. The average time for each interview was 25 min, ranging from 15 to 40 min.
Participant demographics and baseline data are summarized in Table 3. Mothers represented 100% of participants (n = 26). The mean age of participants was 42 ± 7 (mean ± SD) and 10 ± 4 (mean ± SD) for the participant’s children. In this study, 46% (12/26) participants had asthma themselves. When looking at participant’s children, 77% were aged between 4 and 12 years and 23% between the ages of 12 and 18. Of these children, 62% were female and 73% had mild asthma as evaluated by the Functional Severity Questionnaire (FSQ) . Reporting of past experience with health care utilization indicated that all children (26/26, 100%) had been hospitalized at least once for their asthma in the past; 69% (18/26) in the last 2 years and 38% (10/26) in the previous 12 months. Overall, 58% (15/26) of children had taken at least 1 day off from school due to asthma in the previous 12 months; 42% (11/26) had taken no days off due to asthma. Participants reported that over the previous 12 months, two children (2/26, 8%) did not experienced any symptoms, 65% (17/26) experienced symptoms less than monthly, whereas 27% (7/26) had experienced symptoms more than once per month.
The Perceived Role of Individuals/Resources Within Parent’s Asthma Networks and How They Influence the Way in Which Parents Manage Their Child’s Asthma Medications
Overall, participants reported wide differences in the nature and level of influence/importance of the different individual/resources identified. Exploration of these networks uncovered a series of complex and multidimensional relationships, and highlighted that some relationships/individuals truly influenced the decisions made by participants, others filled a gap in knowledge and understanding, others were convenient relationships, and some connections were unrelated to the child’s asthma but provided support to parent’s continual needs.
The specific roles and subsequent influences of individuals/resources are presented under the four categories: healthcare professional (HCP) connections, personal connections, lay individuals, and resources. These relationships and influences are discussed in detail below with examples from participant responses in Table 4.
HCP connections included general practitioners (GPs), specialists (respiratory and pediatric), pharmacists, and hospital staff.
Participants considered the GP to be “officially in charge” of their child’s asthma and GPs were reported to serve a wide range of roles (18/26, 72%). These included the diagnosis of asthma; including physical examinations (inspections of chest and upper airways); being the first point of call in recognizing and confirming any respiratory symptoms and re-confirming a hospital diagnosis of asthma post discharge if the hospital was the first point of call. There was complexity reported around the ‘diagnosis’ role, as participants reported that GPs were hesitant to confirm a diagnosis of asthma at a young age (under 5 years of age). A diagnosis was often only confirmed by the GP after a hospital visit when symptoms had exacerbated during an acute attack or a flare up of symptoms, resulting in parents often feeling “frustrated” (11/18, 61% of parents whose primary provider was their GP).
GP’s were also described as actively involved in the prescribing of asthma medications, commonly described as taking a “trial and error” approach, to determine the most suitable medication for their child. Some participants specifically noted that their GP tended not to provide information about all possible medication side effects or the reasons for prescribing a particular medication. Specifically, GPs were reported to not provide day-to-day management advice, which participants expected would be discussed.
A very small number (5/18, 19%) of parents reported that their GPs supplied a written asthma self-management plan and conducted inhaler technique assessments and training. The GP also left participants with many unanswered questions, and concern about treatment options and the medications their children had been prescribed. Participants reported that this impacted their willingness to give their children medication and made them more cautionary in taking on the management suggestions of the GP. Six participants expressed that they only see the GP now for prescription renewal.
Specialists who were seen by a proportion (12/26, 46%) of participants (were seen to deliver “specialized care” as “experts in the field”. They were “respected” by all participants who were in their care and described their advice as “valued”. This advice made participants feel “confident” that the medication prescribed and management recommended were the most appropriate for their child. They were involved in the diagnosis of asthma, especially when participants did not receive a definitive diagnosis from their GP. Specialist diagnosis of asthma involved monitoring of respiratory symptoms, lung function tests, and trialing of asthma medications for symptom relief. Specialists were reported to consider the role of allergy in asthma and initiated immunotherapy if required. They were also involved in medication management, which entailed medication dose adjustments, providing written asthma self-management plans, trialing different asthma medications, adjustment of medications according to different seasons, and weaning of regular medications if possible.
Hospital staff, such as medical practitioners and nurses, provided emergency asthma care during acute exacerbations which participants viewed as “lifesaving” (11/26, 46%). Their influence, however, went far beyond the acute management of the child’s asthma. In these circumstances, hospital staff were highly influential, and participants reported that they played a role in the way they administered asthma medication to their children post hospital admission, i.e., participants modeled their medication administration behaviors on what they saw in the hospital under emergency circumstances for all future medication administration.
When mentioned by participants (14/26, 54%), for all, the pharmacist played a fundamental role in the supply of medications. Beyond this, there was a dichotomy of roles described. A majority of participants (10/14, 71%) reported limited potential of the pharmacist to contribute towards their child’s medicine management and only turned to the pharmacists for medication supply having infrequent interactions with them. They reported that information about medications, inhaler technique training, and management suggestions were covered by their GP or specialist and did not require any further support. Further participants reported being uninterested in the standard questions and common advice that was provided. For a smaller minority (4/14, 29%), roles reported included medication information and advice, inhaler technique education, and assisting with prescription issues (dealing with incorrect dosages, confirming directions, providing emergency medications when doctors could not be seen). Emotional support and referral to other HCPs were also reported. Some participants described a pharmacist as “dependable”, making them feel “confident” in the way they administered medications to their children and helping to understand the importance of medications and “taking the orange inhaler [reliever] everyday”.
Personal connections included family (16/26, 62%) and friends (10/26, 38%), featured throughout participant asthma networks. Participants frequently encountered on-going challenges in the management of their children’s asthma medications and while they would interact with HCPs occasionally to rectify these issues when in need of a professional opinion, they would interact with family and friends on a more regular basis, as they lived and socialized with most of these individuals on a daily basis.
For family (9/26, 35%) and friends (5/26, 19%) who did not have asthma themselves, they were not reported to be influential in the participants decision-making around their child’s asthma medications, however, they were still reported to play an important role in their network. They were involved in physically assisting the participant with the practical aspects of their child’s asthma care. During events such an asthma attack or symptom exacerbation, participants turned to these individuals who could assist them in an emergency, watch over their children, and provide continuing assistance with daily life tasks. This included monitoring their child’s asthma for acute symptoms when in their care, identifying any increase in asthma symptoms that they may have overlooked themselves, and aiding with the administration of medications.
Having family and friends who were always available in all situations was invaluable to participants ongoing management of their children’s asthma. They also provided participants with emotional support for feelings of anxiety and fear, which were a result of caring for a child with asthma. The “support” of family and friends was described with regard to their influence in triggering the participant to seek professional assistance, especially when their child’s asthma symptoms worsened. More importantly, family and friends were found to influence participants’ choices of HCPs. Often participants’ selection of HCPs was influenced by family and friends’ recommendations.
When it came to family (7/26, 27%) and friends (5/26, 19%) who either had asthma themselves or a child with asthma, their role was similar to that of other friends (described above), however also related to the sharing of personal lived experiences, stories, and insights. Spouses who had asthma themselves were identified by participants to be role models for their children when it came to administering medications on their own without assistance from parents. Participants reported that it was helpful to turn to these individuals who had similar experiences as they provided realistic advice and valued this sharing as they did not believe they received this from HCPs. They also provided practical advice regarding medication use, such as advice on inhaler device use and technique, as well as medication dosages. Their high level of influence on participant’s medication management was conveyed in the way they often relayed management-related information that they had heard from family and friends back to HCPs. They also compared the management advice they had received from their HCPs between each other and took on each other’s management advice, even if it contradicted what they were told by their own HCPs.
Individuals such as school staff and work colleagues were labeled as lay connections (14/26, 54%) in participants asthma networks. The role of school staff was to administer asthma medication following an individualized written asthma self-management plan, especially when a child was experiencing acute asthma symptoms. They were also to inform participants of any symptoms their child has experienced while at school. Outside of that, participants did not perceive them to be influential in any way when it came to managing any aspect of their children’s asthma.
When it came participant’s work colleagues, they played a supportive role for participants. That is, they provided participants with a place to share their experiences, feelings, and emotions. If they had asthma themselves, they shared their stories and insights, however, they reported that this had no impact on their management strategies or decisions when it came to their child’s asthma management.
In addition to professional and personal connections, participants also reported to turn to other resources for additional asthma medication-related information such as the Internet and pamphlets.
Participants (15/26, 58%) in this study frequently reported turning to the Internet for health information both prior to and after their interactions with HCPs. Participants used this resource to find practical information regarding their children’s medications, their administration, side effects, and to find new and upcoming treatment strategies, particularly when their children experienced increased asthma symptoms. Participants reported feeling empowered as a result of access to quick health information. They reported that this influenced their decision-making independently from HCPs in regard to which medications their child should be on, adherence to medications, and when to initiate or cease medications.
Factors Driving the Development of Asthma Networks
Inductive analysis of the data identified that the development of these asthma networks occurred over time and was driven by six factors: the level of satisfaction with their primary HCP provider; the need for different information; convenience; trust and support; self-confidence in management; and participant perception of their child’s asthma severity. These factors are discussed below and supported by quotes from participants in Table 5.
Level of Satisfaction with Their Primary HCP Providers
All participants utilized general practitioners (GPs), often being accessed when their child first started experiencing symptoms of asthma. While GPs were considered highly influential, participants had their own individual expectations of their GP. A large proportion of participants (12/18, 67%) expressed dissatisfaction with their GP, articulating that their needs were not being met.
Some participants (10/18, 55%) reported that their GP had poor professional communication. They were not given a chance to ask questions, and if they managed to do so, they were interrupted. Others reported their GP failed to answer their questions, and instead of addressing their concerns, their GP proceeded to ask other questions important to them.
Other participants reported that their GP provided inadequate information in relation to at least some aspects of their child’s asthma management and treatment or highlighted the poor quality of information provided. While participants did not recognize all the gaps and found it difficult to pinpoint and express their exact needs, they expected to be provided with more detailed explanations on medication side effects (long-term side effects), prognosis of their child’s asthma (if the child will “grow out of it”), potential complications of living with asthma, health management strategies in case of worsening asthma, and any new upcoming treatments (research in the area). Especially in cases where they found themselves in an unfamiliar or critical situation that they did not how to deal with, e.g., being unprepared to recognize or respond to an exacerbation of asthma.
Further, participants highlighted that they wanted advice about how to manage their child’s asthma on a day-to-day basis. In terms of medicine administration, several participants reported that they were given a demonstration on proper inhaler technique on one occasion, without reinforcement or assessment over time. The majority of participants reported that their child’s inhaler technique was never assessed. Few participants reported their GP providing a Written asthma self-management plan, however rarely did participants voice that it was explained clearly or updated regularly. In terms of emotional support, most participants explained that doctors failed to be empathetic and demonstrate an understanding of their “sense of guilt”, “anxiety”, and the “constant worry” that their child’s condition may be causing them. One of the key connections that participants then sourced were other health care professional connections (such as specialists), family, friends, and the Internet.
Trust and Support
Trustworthy and supportive connections were important in shaping participants’ asthma networks. Participants reported pursuing management-related advice from those who have previously contributed to their child’s asthma or had personal experiences of asthma themselves. Through positive interactions with both professional and social relationships, such as the provision of effective treatment options, quality information and successful recommendations founded a sense of “trust” and “support” in that connection. Connections that displayed effective communication (through active listening and displaying empathy), honesty, showed respect, and cared for participants and their children helped build trusting relationships. Trusted connections were described to have an important role in expanding participants’ networks, which potentially improved their child’s asthma medication management.
The Need for More Information
While participants continuously reported wanting more information relating to equipping them to be able to deliver “the best possible care for their child”, their need for more information was driven by a complex multitude of factors and underlying issues.
Some participants wished for more information regarding management strategies, which would enable them to feel involved in the management of their child’s illness, more confident, and be able to understand the decisions being made. They reported that feeling that they understood what was happening helped some participants to cope with their child’s illness and re-establish a sense of control.
Others felt that information provided by their primary HCP was lacking. This was due to physical barriers, such as a lack of time, or that insufficient information had been provided. Immediately after a child’s diagnosis of asthma, many participants reported that they experienced difficulties taking in the information that was presented to them and were left with “many questions” after consultations with HCPs. This was due to the large amount of information imparted, causing “information overload”; feeling “overwhelmed” as to the realization that their child has a chronic condition; and/or the use of medical jargon. In all of these instances, participants would turn to as many different individuals and resources as they could to answer their questions.
Confidence in Management
Participants who expressed that they did not have an active need to acquire further information from sources other than their HCPs were confident in dealing successfully with the ongoing management of their child’s asthma medication. They were “satisfied” and “happy” with the resources and information they were receiving from their HCPs and felt that they could “manage all their medications and symptoms” on their own. These participants reported discussing their child’s asthma with fewer people in comparison to others who did not display this same level of confidence.
Perception of their Child’s Asthma Severity
The level of interaction and selection of individuals/resources within participant’s asthma networks were also influenced by the participant’s perceptions of their child’s asthma severity. Participants who viewed their child’s asthma to be mild in comparison to other children kept their asthma networks small, and rarely interacted with family and friends in regard to medication management of their child’s asthma. In fact, they reported a desire to keep all interactions about their child’s asthma to a minimum. They reported that they were “confident” to manage their child’s condition on their own.
In contrast, participants who perceived their child’s asthma to be “poorly controlled” actively sought both physical and emotional ‘support’ from people that were already known to them or formed new connections. In looking for support, they were actually looking for ways to increase their “confidence” across all aspects of asthma medication management. These parents sought out additional information from different sources, especially when their child was experiencing an asthma flareup. Consequently, these participants had larger asthma networks.
When it came to seeking medication advice, participants made decisions about which individual or resource to utilize based on the level of convenience. The more convenient the source was, the more frequently participants reported to utilize and interact with it. The Internet was an easy and convenient source of medication information both prior to and after their interaction with HCPs, especially when HCPs lacked time during consultations, or participants wanted to re-affirm something that they had heard. By accessing asthma-related websites, participants were able to diagnose and treat symptoms promptly and timely if they were unsure what to do. When it came to HCPs, those who were easily accessible and could provide quick information and advice, such as the pharmacist, were utilized often when in need of reliable information or emergency medication. These HCPs were also held in high esteem in these situations, particularly hospital staff, as they were easily accessible to provide treatment in life-threatening situations.