Adolescent and caregivers’ experiences of electronic adherence assessment in paediatric problematic severe asthma

Introduction

Asthma is the most common chronic health condition in children and is believed to be the leading preventable cause of morbidity, mortality and healthcare cost worldwide (Heaney and Horne, 2012). Inhaled corticosteroids (ICSs) are the mainstay of treatment for most patients with asthma (Hedlin et al., 2012). Taken regularly, ICSs decrease airway inflammation, reducing the number of asthma attacks, hospitalizations and asthma-related mortality (Fong and Levin, 2007). However, some children and adolescents experience ongoing and frequent symptoms and exacerbations of asthma despite being prescribed high doses of ICSs (Bracken et al., 2009). This population, often described as having ‘problematic severe asthma’ (PSA), is estimated to make up around 5% of the childhood asthma population (Lang et al., 2008). Poor adherence to ICSs is viewed as an important contributor to PSA, and a variety of methods to assess adherence have been developed and evaluated, such as prescription refill rate, canister weight and self-report (Bender et al., 2000). However, it is recognized that the accuracy of existing methods is limited, and there is a general consensus that better tools need to be developed to support adherence (Bracken et al., 2009).

Recent research has championed electronic monitoring devices (EMDs) for accurately measuring adherence (Burgess, Sly and Devadson, 2011). In the current study, the EMD was attached to the patient’s inhaler. Once attached, the sensors detect and record when the device is actuated. A healthcare professional subsequently accesses this information, which shows the patient’s frequency of inhaler use, the times and dates of inhaler use and the dose of ICSs taken. They can then discuss the information recorded on the inhaler with the patient (Burgess et al., 2006). Electronic measures of adherence and other variations of telemonitoring equipment have been extensively evaluated in asthma (Spaulding et al., 2012) and in many other chronic health conditions where adherence presents a challenge. A broad range of issues related to their use have been identified across the chronic health literature including diabetes (Cafazzo et al., 2012), chronic obstructive pulmonary disease (Fairbrother et al., 2013) and heart failure (Seto et al., 2012), to name a few. Similar to the wider chronic health field, researchers in the asthma literature specifically have called for research to consider whether telemonitoring in respiratory care ‘empowers the patient to self-manage their condition’ or leads to a ‘dependence upon advice received back in response to technology-based monitoring’ (Smith et al., 2009: 162). However, the literature exploring this is limited and mixed in its findings, with research suggesting that while telemonitoring tools can increase the sense of responsibility an individual has for monitoring their own health and self-caring, they may do so in a way that maintains a reliance on the healthcare system (Fairbrother et al., 2013; Seto et al., 2012).

These issues are of particular relevance when considering the use of telemonitoring equipment with adolescents who are at or approaching a stage in their lives where a desire for independence and a rejection of adult authority become important (Erikson, 1968). Moreover, adolescents are growing up in a world in which they will have significant experience of surveillance and sharing personal information via social media (Lenhart et al., 2010). These factors could result in them being either more wary of additional sources of surveillance or more accepting of them. Burgess et al. (2010) suggested that giving children and adolescents with asthma positive feedback on their adherence levels increased their use of preventive medication and benefitted their healthcare relationships. However, McNicholl and Heaney (2013) reported that for some patients overt monitoring, even when done sensitively, will feel too confronting and some may resort to trying to conceal their data (Simmons et al., 2000). Guidelines have focused on the need for adolescents to be supported in taking increasing responsibility for controlling their asthma as they approach adulthood (The British Thoracic Society, 2011). However, recent research in both adolescent diabetes and asthma suggests that despite this, most adolescents remain ‘underengaged’ (Carpenter et al., 2014) and often report having limited involvement during medical appointments (Newbould et al., 2008). Riekert and Rand (2002) suggest that the process of telemonitoring could assist families in appropriately transferring responsibility of asthma care from parents to adolescents. However, this issue remains underexplored at present and researchers have called for further exploration of the implementation of technology in the care of adolescents with asthma (Schneider et al., 2016). Adherence to treatment clearly presents a joint challenge for professionals meeting with children and adolescents and research about how to improve effective healthcare practice in adolescent care is of great interest.

Aims

This study aimed to explore the experiences of adolescents with asthma and their caregivers regarding their adherence to the ICSs (administered through their preventer inhaler) assessed by an EMD. The research questions were as follows:

How do adolescents and caregivers experience being assessed through the EMD?

Method

The study was approved by a University Research Ethics Committee, an NHS Research Ethics Committee and the relevant NHS Trust Research and Development Office. Informed consent/age-appropriate assent was obtained for all participants. It was conducted in a London-based tertiary service that serves a large population of children with PSA for whom poor adherence is a leading cause of suboptimal control. The EMD is currently offered to all adolescents referred to the service as part of the assessment protocol. The EMD is attached to their preventer inhaler (which they are required to use regularly) rather than their reliever inhaler (which they use as needed when asthma symptoms exacerbate). These adolescents have long-term asthma and have been using ICSs for at least a year.

Results

The interviews yielded three superordinate themes which are summarized below.

Discussion

Most participants described asthma as a serious, lifelong condition that needs to be managed through engaging with a variety of healthcare behaviours and had a broadly positive view about using ICS. Participants recognised that the EMD had been introduced by professionals to promote their health, to support their self-care and to alleviate some of the negative consequences they experienced while living with PSA. However, its use gave rise to several concerns. For the adolescents, participating in activities and developing independence were priorities. This meant there were occasions when they had not used their inhaler and consequently their perceptions of the EMD were often coloured by feelings of fear, mistrust and blame, with the technology viewed as something that could get them into trouble. They anticipated that their explanations for not taking their ICS would not be listened to by healthcare professionals. For caregivers, a main priority was for family life to run smoothly, with asthma management incorporated into family routines. Here, the EMD could be perceived as a nuisance due to its fragility. In contrast, it was perceived by some as assisting their priorities, such as by helping family life to run smoothly by reducing the need for hospital stays. Previous research has demonstrated that caregivers often find managing the tasks associated with managing their child’s asthma demanding and a stressful part of daily life (Morawaska et al., 2012). So, similar to previous research findings (Schneider et al., 2016), introducing the EMD as offering a level of ‘convenience’ to its users may provide healthcare professional, caregiver and adolescent with a shared purpose for using the technology.

The experience of having inhaler usage monitored also had wider implications for adolescents and their carers. For some, particularly those who viewed asthma as a life-threatening illness, monitoring provided a sense of reassurance that healthcare professionals were looking after and ‘helping’ them. This is consistent with Fairbrother et al’s. (2013) finding that telemonitoring provided a sense of reassurance and support to patients. It also indicates that when participants viewed the EMD as part of a standard helping process, the practice of health surveillance was accepted within the healthcare relationship. However, for others, there were feelings of suspicion in relation to the introduction of the EMD. Several adolescents thought the EMD had been introduced because healthcare professionals did not believe they were using their inhaler, giving rise to feelings of mistrust and wariness. Caregivers also reported thinking that the EMD had been introduced because healthcare professionals did not believe them as parents. This could create tensions not only in the relationships between the professional and adolescent but also in their relationships with caregivers. Caregivers’ descriptions of hoping to use the EMD to check on their child’s adherence for themselves may also be related to this, with caregivers possibly wanting to re-establish their position as reliable sources. These descriptions suggest a chain of observation, where both adolescents and caregivers are monitored by their healthcare professional through health surveillance technology, while adolescents may also be monitored by caregivers using the same technology. The adolescent is thus potentially under surveillance from all sides. Dowell (2016) suggests that relationships within the family are the greatest influence on health outcomes of children with chronic illness, and Newbould et al. (2008) highlight the importance of healthcare professionals building relationships with adolescents, so consideration of how the EMD influences the adolescent–caregiver–healthcare relationships will be important for healthcare professionals to hold in mind when using the EMD with families.

A material consequence of the monitoring process was its effect on the adolescents’ ability to take responsibility for their asthma. Policy, guided by research, has emphasized the importance of transferring responsibility for managing asthma from the caregiver to the adolescent as the latter approaches adulthood (The British Thoracic Society, 2011). However, our findings indicate that use of the EMD may have a negative effect on this process. Research by Newbould et al. (2008) has already demonstrated that adolescents living with asthma or diabetes struggle with feeling involved in healthcare appointments and in the current study, the adolescents described having lost any recently acquired responsibility for their inhalers following the introduction of the EMD. This responsibility was transferred back to their caregivers, who became more involved, partly in response to their own feelings of having their supervision ability monitored through the EMD.

Closely linked with this was the way in which the monitoring process impacted on adolescents’ confidence in being responsible for taking their inhalers. Adolescents described feeling more worried about forgetting to take their ICS following the introduction of the EMD and they consequently sought reassurance from their caregivers concerning this. The increase in caregiver involvement noted above may have contributed to this process. This is not inconsistent with Spaulding et al.’s (2012) report that electronic monitoring motivated patients to use their inhalers correctly to avoid non-adherence being identified, but it suggests that there is a clear downside to adherence motivated by these considerations The fact the some participants in this study suggested that once the EMD was taken away and there was no longer anyone checking, their inhaler use would reduce again indicates the potential limitations of an externally based locus of control. This conflicts with the recent findings of Jochmann et al. (2015) which indicated that the introduction of an EMD led to sustained adherence behaviour change (although in their study participants did receive feedback on their adherence). However, it does suggest that a more phased withdrawal could be beneficial.

The EMD was experienced by some as a form of health surveillance that undermined both adolescents’ and caregivers’ confidence in taking responsibility for medication use with potentially problematic long-term consequences for disease management. Viewed in this light, the EMD forms part of wider advances in medical technology that enable clinicians to monitor the degree to which patients adhere to treatment regimes and protocols and indeed the increasing use of technology to monitor fitness and physiological parameters more generally, such as Fitbit and the Apple Watch. The use of such technology raised important issues linked with privacy and autonomy (e.g. Levy, 2014) and connects with more widespread concerns about the consequences of surveillance and the negative impact of living in a culture in which surveillance in many forms is increasingly common (Ellis et al., 2013).

Limitations

There are some limitations to the current study. One is the absence of male caregivers from the sample. Fathers are under-represented in clinical paediatric research and their perspectives may differ (Costigan and Cox, 2001). Recruiting from one site only also poses a limitation to the findings in that any variability in experiences which may have been found were participants recruited in different settings may not have been captured. However, this is also arguably a strength of the study in that it minimizes potential confounding variables that multi-site recruitment could have given rise to, thus holding the medical experience constant. Additionally, participants were interviewed at the appointment where they were due to return the EMD, so there was no opportunity to enquire into what happened thereafter. This is relevant, as it is possible that many of the fears about the EMD that the participant’s shared could have been alleviated at this later appointment. Future research should be prospective in nature and carry out interviews at different stages of EMD use.

Conclusion

Introducing EMDs into healthcare can be experienced as a useful support tool for patients when perceived as something that is there to improve their health and self-care ability and as reducing some of the negative consequences of living with a chronic health condition. However, the suspicions of both adolescents and caregivers need to be explicitly engaged with lest the healthcare relationship become imbued with mistrust. Identifying patients’ preferences and priorities in relation to treatment decisions is therefore an important step in the process of shared decision-making, and it is important for healthcare professionals to be aware that there may be different priorities for caregivers and adolescents in relation to management of severe asthma. Considering the use of electronic monitoring tools on a case-by-case basis, where they are used as part of a needs-driven care plan will likely support this process. It may also reduce the likelihood of caregivers feeling undermined by the introduction of EMDs and mean that they are introduced with the aim of supporting with the transition to independence rather than interfering with this.

To conclude, adherence to treatment remains a joint challenge for healthcare professionals meeting with children and adolescents and research about how to improve effective healthcare practice in adolescent care will continue to be of great interest. The current study highlighted some important considerations for healthcare professionals working in adolescent PSA care. Future research may wish to expand on these findings in different chronic health conditions.