Living Ambivalently with Chronic Illness

ABSTRACT

Mobile health smartphone applications (mHealth apps) enable patients to monitor how chronic illness interconnects with their everyday life. I explore, through focus group discussions, how such monitoring makes sense to pediatric and young patients and parents in Denmark. These groups explicate how they live both with and without chronic illness by distinguishing between when to focus on which aspects of it. I argue that this relationship with chronic illness produces parent’s, children’s, and young people’s ambivalent attitudes toward mHealth apps that promote illness monitoring “anywhere” and at “any time.”

ABSTRAKT

Smartphonebaserede sundhedsapplikationer (mHealth-apps) gør det muligt for patienter at monitorere, hvordan deres kroniske sygdom udspiller sig i hverdagen. Gennem fokusgruppediskussioner undersøger jeg, hvordan denne form for monitorering giver mening for pædiatriske og unge patienter i Danmark. Disse grupper udtrykker, at de lever både med og uden kronisk sygdom ved at skelne mellem, hvornår de fokuserer på hvilke sygdomsaspekter. Jeg argumenterer for, at et sådant forhold til kronisk sygdom gør, at forældre, børn og unge forholder sig ambivalent til mHealth apps, fordi disse sætter fokus på sygdomsmonitorering “hvor som helst” og “når som helst.”

KEYWORDS:

• Denmark
• ambivalence
• children
• chronic illness
• mHealth
• young people

Patient-centered health care has given rise to digital health technologies that promote predictive, preventive, and highly personalized Western health care systems (Meier et al. 2013).¹ One kind of such technology is mobile health smartphone applications (mHealth apps). mHealth apps are proclaimed an enabler to “better understand how illness, treatment and care impact the entirety of a patient’s life” through self-monitoring of “patient experience” measures (Forestier et al. 2019:1). Patient experiences measures refer to anything that the patient observes in relation to illness – including “subjective” measures, like pain, mood, and behavior (Cipresso et al. 2012), and “objective” measures, for example recording each time a physiotherapy exercise is carried out, or a medication is taken. For instance, patient-reported outcome measures (PROs) generate information about patients’ experiences of health status, impairment, and health-related quality of life through questionnaires that ask about, for example, daily activities, pain, and anxiety (Kingsley and Patel 2017). Patients monitor their experiences via mHealth apps so that healthcare providers or app algorithms can use the generated information to determine the patient’s actual needs and provide recommendations (Bruce et al. 2020) but especially so that patients themselves can assess and improve their illness management (Meier et al. 2013).

Within the field of science and technology studies (STS) of digital health, scholars generally emphasize the political, cultural, economic, and discursive dimensions of the paradigm shift toward datafication and quantification of qualitative aspects of life and health (Ruckenstein and Schüll 2017). Here voices have called for “a better and more skeptical understanding of the seemingly positive turn” (Wynne 2007:100), arguing that chronically ill patients’ embodied experiences and relationship with their illness are increasingly defined by neo-liberal emphasis on the individual’s responsibility and self-sufficiency (Charmaz 2020). Digital monitoring tools are used to detect and predict health-related issues, and to process and feedback the data that people generate so that they can modulate their actions (Ruckenstein and Schüll 2017).

Scholars in sociology, anthropology, STS, and media and communication are increasingly exploring how the datafication of health and care practices affect people’s experiences of themselves and their health (Ruckenstein and Schüll 2017). Oxlund (2012:53) has for instance argued that a “numerical ontology” pervades everyday practices and “ways in which people relate to their own bodies.” We understand “how we are” in numbers. This data-monitoring and modulation not only concerns biological life, but also tracks extracorporeal elements like daily choices, rhythms, preferences, and tendencies (Schüll 2016). Lehoux (2008) argues that there is a recursive relationship between chronic illness and technologies that monitor them, which does not necessarily reduce anxiety but makes prominent the unpredictable existence of the condition. Assessing the relationship between the individual and their data can trigger various experiences of doubt, guilt, fear, and disappointment, but also joy, enthusiasm, and pride (Salmela et al. 2019). Digital monitoring of different aspects of people’s illness simultaneously shapes these people’s experiences of their illness, themselves, and their lives (Hofmann and Svenaeus 2018; Kiran et al. 2015).

mHealth is also emerging for children and young people in different diagnostic fields (Armoiry et al. 2018) as a possible enabler of their sense of ownership of, and engagement in, their illness management anywhere and at any time (Carpenter et al. 2016; Fedele et al. 2017). By generating information about the illness in the context of their lived reality, children and young people are offered a chance to improve the ways in which illness is affecting and affected by daily life activities.

However, major challenges persist in proving how mHealth apps can increase health and personal outcomes and achieve adaptation with children and young people (Fedele et al. 2017). We know little about how illness monitoring makes sense to this group (Jiang and Cameron 2020) and what shapes their responses toward mHealth apps. There is a growing attention to psychosocial aspects of children and young people’s experiences of chronic illness (Brady et al. 2015). This area of research finds that this group is particularly struggling with feeling different, is preoccupied with normality, and often develops strategies to limiting attention to their illness, bodies, and treatments (Lambert and Keogh 2015). I am interested in understanding how experiences of differentness and normality shape this groups’ attitudes toward monitoring chronic illness with mHealth.

Therefore, I, a trained ethnographer with a background in techno-anthropology, set out to explore together with a hospital youth panel, children and young people who live with a chronic illness, and the children’s parents, how mHealth makes sense to them. I found that children and young people’s preoccupations with differentness and normality and their ways of approaching illness management generate ambivalent attitudes toward mHealth enabled monitoring of illness.

Ambivalent attitudes toward illness and monitoring technologies

Medical anthropologists Svensson et al. (2020) suggest that to live with a chronic condition might always involve living between different categories of “sick” and “well,” “abnormal” and “normal.” Furthermore, Wahlberg has drawn attention to a tendency of health care initiatives to encourage patients to move beyond such categories of sick and normal into “living with” illness. These initiatives encourage “a focus on patient living as something that can be improved in terms of ‘quality of life,’ ‘well-being’ or ‘healthy life’ as therapeutic objects.” (2018:7). Other scholars have recently highlighted people’s ambivalence in using digital health (Marent et al. 2018). Ambivalence is reflected in the unpredictable ways in which people relate to monitoring aspects of their health. People have both positive and negative experiences with using health tracking technologies (Lupton 2013; Marent et al. 2018; Ruckenstein and Schüll 2017). They can in some situations feel a sense of control, pleasure, and hopefulness toward monitoring of their health while in other situations feel overwhelmed, frustrated, or disappointed (Ruckenstein and Schüll 2017). The voicing of (adult) peoples’ ambivalent relationship with health technologies offers a more nuanced perspective on how they move between engagement and dis-engagement and how positive and negative consequences of using these technologies can shift across environments (Ruckenstein and Schüll 2017).

I will show how the children, young people, and their parents in my study do not just “live with” chronic illness but live ambivalently with fluctuations between differentness and normality. They see themselves as ill and normal; they engage with management of treatment and they do not see illness in a merely bio-medical way or in a self-defining way. This ambivalence toward their chronic illness, I argue, rubs off on their sense-making of mHealth that places illness as connected to the entirety of life.

Focus groups’ discussions about monitoring chronic illness

At the beginning of this research, I conducted participant observation with children and young people living with hemophilia or juvenile idiopathic arthritis (JIA) (Bagge-Petersen et al. 2020). In parallel I followed two mHealth design projects that were developing apps for children and young people living with hemophilia and JIA (Bagge-Petersen et al. 2022). During these ethnographic encounters I was alerted to a discrepancy between the two sites. The families tried to only handle illness momentarily in the space of the home when it was necessary. In contrast the mHealth developers designed their apps for patients to monitor how the illness was integrated with everyday life. My sense of a discrepancy between the momentary and integrative approach to chronic illnesses encouraged me to explore how different kinds of illness monitoring make sense to children, young people, and parents. Because none of the two apps were finally launched for pediatric patients due to structural and methodological bias against minors as users in the design processes (Bagge-Petersen et al. 2022), I could not observe actual responses to these apps. Therefore I used the monitoring measures (symptoms, treatment, activities etc.) of the two app designs to inform the present study’s stimuli for focus group discussions with children, young people, and parents in order to tease out their forming of attitudes toward mHealth illness monitoring. All 29 focus group participants could be categorized as middle class Danish citizens. The five focus groups were each a one-time encounter lasting approximately an hour.

The focus group discussions engaged three groups of parents of children living with hemophilia at an event in The Danish Hemophilia Society in September 2019, and one group of these parents’ children (all boys) living with hemophilia, age 7–14, at the same event. Participants were recruited at the event and only one child and his parents had also participated in my previous ethnographic study. Hemophilia is a bleeding disorder (most prevalent in males) that causes spontaneous and post-traumatic bleeds in the patient which can lead to joint damage and lethal internal bleeds. The advancement of treatment means that patients in Western countries, can live a seemingly “normal life,” however frequent injections, hospital visits, and limited physical activities, combined with the inevitable instances of bleeds and pain, is challenging for pediatric patients (Limperg et al. 2015).

During the focus group discussions, I provided stimuli designed to inspire mutual reflections. With the parents, the stimuli consisted of statement cards (Kitzinger 1994) that would raise discussions about their everyday experiences with, and ideas about, managing and supporting their children’s health and well-being. I explained my aims to the parents and that I would leave them to discuss a stack of statement cards while I would facilitate the focus group discussion with their children in another room. Because the parents knew each other from the Hemophilia Society the atmosphere was relaxed and they took the opportunities to voice opposing opinions and asked each other to elaborate. Their discussions were recorded with a voice recorder.

In the focus group with the children, I presented a series of short open-ended vignettes (Barter and Renold 2000) informed by the previous phase of participant observation but featuring fictional child characters living with hemophilia. The aim was to enable the boys to think about their everyday life, specific objects, norms, and schedules (Koch et al. 2011) and voice their own experiences without being compelled to refer to themselves. Some of the vignettes probed about how mHealth monitoring would make sense in regard to their life with hemophilia.

Additionally, I engaged a “hospital youth-panel” at Rigshospitalet in a focus group discussion in June 2019. This panel is installed to guide new initiatives and be a voice of young patients. It consists of young people (two males and three females from the Capital Region), age 18–25, living with one or multiple conditions including cancer, heart disease, asthma, hypermobility, spinal cord hernia, and diabetes. I presented various discussion topics regarding their illness experiences, management, and mHealth. The youth panel members were at a point where their childhood memories were fresh, but at which they also held young adult perspectives on mHealth-apps. Furthermore, their role as panel members enabled them to voice divergent perspectives of other young patients.

Approval from the research ethics committee of Copenhagen University was not required for this type of study. Yet, ethical considerations of methods and mediation of results have guided me to safeguard the children and young peoples’ perceptions about themselves, their capabilities, and their chronic conditions because I found these to be almost vital for their daily living. Written informed consent was obtained from all participants after I explained my aim, and they were informed that they could at any time raise questions or withdraw from the study, and that they would be anonymized and represented only by pseudonyms in any publications.

All group discussions were recorded with a voice-recorder, transcribed, and coded with attention to what aspects of illness monitoring made sense to them and what did not. Emerging themes were grouped through thematic network analysis (Attride-Stirling 2001) under headlines like “normality,” “learning,” “engagement,” “differentiating,” and “illness space” which all spoke to different aspects of an overall theme of “experiences of living with and managing a chronic illness.” In the following I will present how parents, children, and young people perceived their lives and illness monitoring accordingly with the themes.

Backgrounding and foregrounding illness experiences

On listening to the parents’ discussions I learned that in raising a child with hemophilia safeguarding normality was a high priority together with safeguarding their physical health. Though it is difficult to translate into English, an expression of “limiting the ‘space’ that illness takes up” (Danish: “få sygdom til at ‘fylde’ så lidt som muligt”) was frequently used by the parents. This describes their efforts to reduce attention to an illness that can easily intrude on what these families think about, talk about, practice, and identify with. As one father put it:

Frans: You shouldn’t in any way try to pretend [the illness] isn’t there, that is not where I’m going, but I still think it should take up as little space as possible.

One of the statement cards probed parents about the idea of monitoring their child’s treatment and symptoms as well as their energy level, activities, mood, and sleep with an mHealth app so as to gain insight into how the illness interrelated with their everyday life.² The monitoring of such a variety of illness-related measures was intended to reflect the fact that hemophilia negatively affects children’s daily activities, experiences of pain, physical activities (Limperg et al. 2015), family life, peer relationships, schooling, well-being and self-confidence (Crawford et al. 2010). Yet, the statement card provoked direct resistance and ridicule from the parents:

Gitte: Well, concerning [my son] it would take up way too much space [fylde for meget] if he had to register every day: “What is my mood, how did I sleep, was I awake?”

[…]

Helene: Won’t it lead to too much focus on [the illness]?

Lotte: It will kind of take over – or it will become the most important, and it’s not the essential [thing].

Helene: It becomes self-reinforcing

Irina: We wouldn’t need that; we wouldn’t download one [app] like that. I’d like one that could register medicine and [efficiency of the treatment in the body], but that about sleep and all that, we don’t need that. […] For us, who have well-functioning children, and children that are otherwise all normal, and get to be all normal, we don’t need it.

The parents mainly saw potentials for an app that could generate the, in their opinion, more obviously relevant information that could be used to adjust treatment. It would have consequences for their children to focus attention to these other aspects of life with chronic illness. As Hofmann and Svenaeus (2018) argue, Helene’s use of the term “self-reinforcing” implied that focusing on mood, sleep, energy, or activity as related to illness would amplify the causality ascribed by the child to the impact of illness on these matters. Monitoring could potentially amplify existing hardships, the parents reasoned in different ways:

Erika: No, that’s too much, because then you’re reminded of [the condition] all the time, right? And we know that children and young people would rather not be reminded about all that.

Frans: No, it’s also so … like if [son] … one of those injuries he’s had, where he can’t walk for 14 days … well, it would be to rub it in his face with an app like that.

Gitte: Then you have to register it! (laughs) […] or “how is your mood?” (laughs)

Erika: God, no!

Jonas: If I ask him […] how he’s feeling, and how it hurts, then he gets damn annoyed.

Parents do not want their children to be constantly reminded about their condition by focusing on injuries, pain, sensation, feelings, or mood. Jonas also acknowledged that the relationship between parent and child depends on alignment between what experiences to focus on and how. Though the child’s bodily and emotional experiences are acknowledged as interdependent and related to illness, parents choose carefully if these should be foregrounded, and how. Furthermore, parents reasoned that monitoring of “emotional experiences” could insinuate untrue causality with the condition:

Birgit: If [the app] then asks “Why are you sad?” and it was because he [the son] had a fight with a friend, [he would say] “it’s because I am sick.” That’s the answer I would get. […] well, I don’t think [the children] should get permission to decide what their mood depends on.

Birgit here argued that the monitoring would encourage the child to “decide” how the condition affects him emotionally. The condition would be a scapegoat for other causes of negative feelings, like having a fight with a friend. A father pointed out that such conversations about hardships should not be addressed by an app, but covered by duties in supporting the child to cope with experiences:

Kristian: We agree that an app would be able to help with practical things, but I think that these things in particular – mood, sleep, activity, and energy – shouldn’t take place on a screen. It should be something to talk about. If he [son] is in a bad mood or didn’t sleep well, then we talk about it.

Parents agreed that practical management of the condition can be delegated to a digital space, but experiences of everyday hardships should be their parental privilege to handle. However, they broadened this practical perspective on an app when another statement-card probed into facilitating children’s involvement in treatment practices:

Frans: You could use it for the younger children to involve them in a way.

Gitte: Yes, like “Where is it that it hurts?” “It’s right there!” “Then tap there.” Then you could say, “Well, you have a bleed in your elbow – you can see that because it’s swollen,” and so on – “And how many of those have you had?”

Somewhat similar to reasoning within mHealth innovation (Carpenter et al. 2016; Fedele et al. 2017), Gitte was here thinking of the app as a pedagogical tool to teach the child to use a particular terminology and logic of symptoms and be alerted to the bodily experience of bleeds, which is already a key task of the parents. Gitte later reflected on how monitoring could help correct her son’s inaccurate assessment of what triggers his bleeds and limit his anxiety:

Gitte: Then you could use [the app] for something practical … if he himself registered [his bleeds] and “What did I actually do to get these bleeds?” … then he would maybe find out that it’s not that bad to play football with the other boys in class – that isn’t when [the bleeds] happen.

Helene: – to offer some visibility …

Gitte: Yes, because he’s painfully anxious about participating in those school break activities because he [thinks] he’ll just get injured. If we could then say “We actually have [an app] here that shows that that’s not where you get injured, it’s rather as soon as you get home and jump around on the trampoline.”

According to Gitte, visual presentation of the connection between playing football and the son’s injuries could possibly prove to him that he could engage actively in physical games with his classmates. The monitoring was thereby anticipated to increase their son’s attention to his condition in activities that trigger bleeds, while reducing attention where it was not relevant. Other parents also felt that it would be legitimate to use apps to foreground specific experiences that they already recognized as having an impact on the children and family. In an elaboration of the purposing of mHealth, the parents thus anticipated that monitoring could in this sense help to distinguish between various illness experiences and focus on those that, in their opinion, assist learning about condition management.

From these discussions I see ambivalence in parents’ ways of relating to their children’s illness experiences. On the one hand, parents teach their children to be alert to particular bodily and physical experiences, and on the other hand, they do not wish to place too much attention on the condition, so as to prevent their children from feeling too affected, and from not engaging in “normal” activities like football. Their way of responding to this ambivalence is to determine when and how it is relevant to direct attention to illness. Parents recognized mHealth monitoring as potentially easing the registering of symptoms and treatment, improving treatment plans, and increasing their children’s knowledge about treatment, triggers, and bodily sensations. They however resisted monitoring things that did not seem relevant to symptoms and treatment. From their perspective, their children’s sense of normality is endangered by verbalizing and visualizing the condition as connected to what the children do, who they are, and what they experience in everyday living – except if there is a causal reason, like jumping on the trampoline.

One father, however, put forward an opposite perspective to that of the other parents:

Jonas: […] We keep telling [our children]; “Well you can live like everybody else if you just get your preventive medicine – then you can live a normal life like everybody else.” We’re doing them a disservice [by telling them that] because they can’t! […] I don’t think it’s about making it take up as little space as possible. It’s about making it become part of who we are, because it’s there all the time. So, it’s just them – it’s who they are. And a hemophilia app doesn’t change that you’re a hemophiliac. They are! […] but you can make it a more natural part of the person they are. [My son] is proud of it, he’s proud of being a hemophiliac. […] – I asked him: “What if it could just disappear?” “No, thanks!” It is how he is.

The father’s issue here is that the other parents are pursuing a normality that he argues cannot be achieved. He calls for acknowledgment that the illness is a “natural” aspect of their children – something close to an identity to be proud of. This father’s perspective of identifying with the condition, and accepting differentness, resonated with the perspectives of some of the children in some situations as we shall see in the following.

Shifting between normality, coolness, and illness engagement

While the parents were discussing in one room, six of their children, all boys, aged between 7 and 14 years, joined me in another room to discuss what it implies to live with and manage hemophilia. I noticed that the boys were preoccupied with the bio-medical aspects and vocabulary of their condition. Yet, they were just as preoccupied with their own “normality” in interaction with their peers. The serious attitudes around their diagnosis and their normality were however, accompanied with pronounced fooling around and joking:

Me: So, this is a recorder, and I just turned it on, so that I can listen to what you guys say afterward. But it’s just for me to hear.

Victor: [leaning toward the recorder] Hi, my name is Victor and I’m 12 years old! […] Listen: I have Asperger’s!

Victor does not have Asperger’s syndrome. It is meant as a joke. Victor goes on to introduce Rasmus who sits next to him and who he knows from earlier social events organized by the Danish Hemophilia Society.

Victor: This is Rasmus. He’s good-looking and my best friend – so far! He has inhibitor.

Inhibitor is an immune system response to the clotting factor concentrate that renders standard replacement therapy for hemophilia patients ineffective. While Victor introduces his sidekick Rasmus by referring to inhibitor, he is ahead of me before I introduced the task of discussing characters and their challenges in living with hemophilia:

Me: […] and then I’d like you to find out what happens to this person in the story. So, Viggo! [I show a drawing of a boy]. He’s afraid of home treatment; to get injected at home and get treatment. Why is that?

Rasmus: I know! It’s because he’s ugly! No, sorry, sorry! No, it’s because he feels worried if …

Mads: … his mum …

Rasmus: … if his mum’ll do it right, and if … uhm, if it happens that – and that probably won’t happen but – she hits his artery, or something like that, and that they can’t immediately get to the hospital, where he’s sure that they can give him the right help.

Rasmus mentioned anxiety about parents hitting an artery, which evidenced his preoccupation with risks of clinical procedures. What struck me was his shift between joking and posing a serious scenario. Both Victor and Rasmus had made jokes about Asperger’s syndrome and being ugly. They continuously brought up human traits of others, to have a laugh, and possibly to position themselves as normal in comparison. When I introduced the next fictional character, we came closer to this issue of being subject to personal traits in normative social contexts.

Me: This is Lasse! He doesn’t want to talk to his classmates about his condition!

Steffen: I don’t bother to do that either!

Me: Why doesn’t he want to?

Victor: Then he might feel different [Danish “unormal”] … from the others …

Rasmus: I do know that I’m different [Danish “unormal”]!

Ulrik: Because he’s afraid that others will laugh at him …

Steffen: He’s afraid of being bullied …

Me: Okay, and then what happens? What could happen to Lasse?

William: If he had an accident for instance, then he could … then the other boys might just say, “Well, [get] up again, you’ll be fine!” instead of freaking out completely [because the friends would know the risks associated with injuries as he has hemophilia].

Me: Right, okay, so that they would react a little more coolly … ?

William: Yes!

Victor states that bringing attention to the condition in relation to classmates can invoke experiences of differentness, and William wants classmates not to react dramatically, but rather like they would with any other child. The boys agreed that they should be careful about disclosing that they are “hemophiliacs” (Danish “blødere”) which was an expression they themselves used. Only close friends could be trusted. I thought it curious that the boys posed this contradiction between not wanting others to see them as “different” while knowing that they were, so I probed on this:

Me: Some of you said that he [the fictional character] wanted to feel more normal …

William: Yes, so he can say that he’s all normal when he gets his medication, because then you’re, in principle, as good as normal.

Steffen: Until you’re injured!

Me: So, you could say that to your friends, maybe?

William: That you’re as good as normal, but only if you’ve had your medication. But if he uses [anesthetic cream] it takes an hour and a half – when he’s different [because of the time it takes for the cream to have an effect before he can get injected].

The boys here voice a contingent normality. As William expresses it, normality comes and goes according to coverage of treatment: this is about his blood being able to coagulate in the same way as the others’ can – a fact which could be communicated to his peers so as to make them perceive him as normal. Normality is linked to being sufficiently protected against bleeds by treatment but also their peers’ recognition of them as normal. They stated that they could be teased by peers because of their illness:

Me: And how can you be teased about that? About having a condition?

Steffen: You just can.

Victor: You’re different.

Me: Yes, it’s not normal to have a condition because most people don’t …

Victor: Yeah

Rasmus: I am just cool! (giggles)

Victor: Me too!

Me: But, when would [the fictional character’s] friends think he’s cool?

Ulrik: When he’s being injected!

Steffen: Yes!

Ulrik: My friends give me great backup when I get injected, they think that … they don’t get that I even dare … to go through that every other day!

Here they point out how drawing attention to their regular injections can awaken praise of how cool the boys are – how they enable to endure something extraordinary. I noticed that the boys use contrasting discourses according to the social situations they describe. They speak about striving for “normality” and “coolness” in relation to peer interaction. In contrast they speak about themselves as “being hemophiliacs” and different among each other in the focus groups. In between discussions of the vignettes the boys talked with each other about their experiences with hemophilia A and B, inhibitors, and exchanged knowledge about different treatments and methods. In Bourdieu’s (2020) terms they have formed an inside-group that shares unique traits in opposition to an outside-group of peers that they otherwise have to make an effort to become part of.

I ended our session with two scenarios of a group of fictional children who were designing hemophilia apps, leaving it up to them what such apps could entail. I did not present actual mHealth features and monitoring measures as I did not wish to limit the boys’ ideas for how apps could be attuned to the everyday life contexts that they had just made explicit through discussions of the vignettes. The first scenario concerned designing the worst ever hemophilia app. The boys were very creative in suggesting how the “worst” app would, for instance, make a knife come out of a phone to cut you, or make you jump out of a building, give an electrical shock, or show a head being cracked open. When I introduced the scenario of a group of children who created the “best” hemophilia app they were serious about the task:

Tor: You could learn how to get injected in the arm.

Rasmus: Yes! So that you could learn.

Ulrik: An app that could say how much medicine is in your blood.

Victor: Wow, that would be smart!

Ulrik: Because then you’d know when to take your medication.

The boys were almost finishing each other’s lines of thought that a good mHealth app would support their bio-medical and practical knowledge about how to administer treatment. To my surprise it did not occur to them that an app could address the illness’ connection with psychosocial aspects of everyday living, even though this had been a central topic in our conversation. Instead they were keen to let an app help them learn injection skills, how treatment works, and timing of treatment.

The boys’ experiences with their illness were characterized by ambivalence in terms of how illness can shift between getting in the way of their purposes, evoke appraisal, and serve as an engaging subject to investigate. As a complementary point to Lambert and Keogh (2015) who show that children and young people generally find illness management complex, time-consuming, inconvenient, boring, and interrupting their everyday lives, I found this group to be highly enthusiastic about their diagnosis and treatment in a bio-medical perspective in some situations, such as this group discussion.

Balancing illness engagement against increased illness awareness

The young people in the hospital youth panel were preoccupied both with becoming more involved in decision making around their treatment. Yet they were also concerned with how a fulfilling of these wishes would increase their attention to the illness’ impact on their daily lives.

The youth panel initially shared their experiences regarding the visibility of their conditions, which varied between them. Like Lambert and Keogh (2015) show, the young people explained that other people’s awkwardness around them made them uncomfortably aware of their own conditions. These were experiences of other people staring, asking inappropriate questions, or being artificially silent around them. Like with the boys in the previous section, some of the young people made use of a bio-medical discourse when answering other people’s questions about their condition to reduce attention to it as much as possible:

Nadia: I don’t tell [people] everything, and I think that you at some point start distancing from it [the illness], and tell things in a more “doctor” kind of way, where you just tell some facts and then that’s it. And then you don’t touch upon how you’re feeling about your condition, but more like what it is. Like that, it gets easier because then you avoid the “Are you going to die?” or “Can you even survive?” or like such excessive pity. […] But on the other hand, then you might suddenly feel very alone with it, because the others don’t know how it is – they just know what it is.

The curious thing here is that a fact-based discourse around the condition can help background personal experiences of living with the condition. However, Nadia recognizes that her feelings need addressing too, and she feels alone with it when people around her do not know what she is going through.

The youth panel also described the struggle to become involved in their own illness management especially when transferring to adult health care services:

Oliver: It can be very hard for the young person to move to the adult health care services without having been told what his condition is and how he should do his treatment, like just being thrown into it without knowing anything. So, I will just suggest that the child or young person should be involved throughout the whole [disease course], because then the transition is easier.

Nadia: […] it also makes it easier that the children themselves can explain how it is, because they are the ones who have [the condition].

Oliver: And also, the treatment you get, right, like what good does it do? It’s important for the young person and teenager to know what he is taking, like what good it does. If they can’t feel anything, or if [the treatment] has a long-term effect, then the young person … that goes for me at least, then I didn’t bother to take the pills because I couldn’t feel it immediately.

Obtaining the adequate competencies and knowledge about the illness is challenging. In line with the aim of mHealth (Carpenter et al. 2016; Fedele et al. 2017) the young people wished to learn about the correlations between symptoms, treatment, and the effects of the treatment plan. The youth panel criticize not being drawn into the conversations that concern them which makes them feel that control is placed outside their own reach. I probed about how they imagined that mHealth apps that aim to monitor their experiences with the illness could assist their involvement and learning about their own illness. In response Nadia reflected on a point in her life where she was to take on more responsibility for managing the condition:

Nadia: I’ve always had asthma and I said to my mum; “Now it’s my turn [to take responsibility],” but the doctor didn’t really want to let me. So, there I was, not really supported, and then it was a struggle to take it on myself. […] I think an app would be a good way of doing it [get involved], because you might have a bit of control.

Nadia is concerned with health care professionals who do not include the child or young person, and propose that an mHealth app could help authorize the child’s involvement. The others agreed, but found it difficult to say exactly how it might be done. I offered examples of apps that are used to monitor treatment, symptoms, triggers, and well-being to give insight into various illnesses’ correlations with daily life. This caused a shift in attitudes with the young participants. While they had shared their longing for more involvement, learning, and control of their illness management and treatment they now became attentive to the implications that monitoring would have for them. Nadia now questioned the incentive of monitoring anything at all given the chronicity of her illness:

Nadia: I think maybe there’s this thing about chronic patients: you will never be cured! So, it could be that after you have [used the app for a while] you’d need an incentive or else it might feel a little pointless. Despite [the app] being good and working well, you can end up like, “Well, either way, I’ll never be cured, so what’s the point?” […] I could imagine that if it [the app], for instance, states that every day I have to say how much pain I have, I might think; “Why?” I’ll also experience pain in a month and in three, so …

The constant of “chronic” is an issue for Nadia, and she questions the likelihood that monitoring will result in any changes to her own situation. In confirmation of the anticipation in the parents’ focus groups and Hofmann and Svenaeus (2018) point about shaping illness experiences by monitoring them, Nadia and Petra anticipate that monitoring can amplify feelings of being ill:

Petra: If I had to sit down every day and pay attention to, like really feel, how am I really today, then I think I would feel more ill than when I just carry on with it.

Nadia: Then you’d have to think hard about it and then I just think that in the end you’d just become a little bitter.

Nadia: I think that … the thing about professionals wanting to know “how you are” and “when” and “bla bla bla … ” Where what we want, is more like “how can I deal with it, and how can I live an ordinary life with it?” I certainly don’t need to voice my limitations every day. I think that my need for an app would be more to, help find out “well, what do you do with that?” – Not that it should be a cure, but more like … because, there has to be an end goal, that it’s not just to report “this is how it is,” but more so that there’s something in it for the ill young person, so that it’s not just like, “well, today I felt bad just as usual.”

Petra: Definitely! It becomes a very negative view on life that you, take up if every day you sit down and say, “Well, I couldn’t ride my bike there and I had to stop and, oh … ” like it’d be a bit depressing, right?

The young people here considered that monitoring symptoms, triggers, daily functionality, and mood could be counterproductive for their general view on life. At the same time Nadia voiced that her priority would be to learn to “deal with” the impact of the illness on her daily life. Though what “dealing with” implied was not all clear, Nadia voiced her need for support as something beyond what “the professionals want to know” and thus, as a matter that did not concern health care services. To “deal” seem to imply learning to accept, cope with, care less about, or delimit the impact of the inevitable negative effects that their illness have on their lives.

The discussion with the youth panel was characterized by a non-specificity in terms of how mHealth monitoring in each diagnostic case would result in improved involvement, exploration of correlations between illness and daily struggles, and learning to manage illness better, as well as adapting their daily life better. This non-specificity is a general challenge across mHealth apps that do not account for how illness monitoring leads to patients’ “empowerment” or “self-management” and what exactly this implies (Freeman and Neff 2021). Yet, the discussion with the youth panel highlighted the ambivalence of monitoring as a means of engaging with the illness and monitoring as an amplifier of illness awareness – an ambivalence that related to their general struggle with wanting to get involved with illness but also wanting to just carry on with life. They had to weigh chances of improving their health state and an increased attention to how ill and limited they are.

Ambivalent anticipations of monitoring illness experiences with mHealth

With my findings I am offering new considerations of how monitoring illness experiences makes sense to children and young people. Similar to Salmela et al. (2019) study on monitoring technologies with adults, I found that parents, children, and young people associated monitoring of illness with enthusiasm, engagement, pride, but also with increased awareness of illness, limitation, and differentness. Thus we can see that their sense making of mHealth monitoring is characterized by ambivalence. On the negative side Vinther (2020:188) showed in her study how an mHealth app increased children’s experience of JIA, sense of being a patient, and details of their illness because the self-management of symptoms changed from an “automatic” to a “reflective” activity with the app. In my study the anticipations of the parents and the young people was similarly that the feeling of being ill would increase with an app that draws attention to the interconnectivity of illness and different aspects of life. Much in accordance with the arguments of Hofmann and Svenaeus (2018) my participants suggest that illness experiences can appear in situations where they otherwise strive to delimit them because these are being made objects of monitoring. Yet, on the positive side Vinther’s study showed that children living with JIA and their parents anticipated that an app could be useful in situations where they experience unknown and worrying symptoms or treatment side-effects and need insight into correlations between the illness and sensed experiences. Similarly, in my study parents and young people suggest that monitoring of some specific illness experiences that they find have a causal effect with their health state can be relevant for determining how to administer treatment.

This study does not describe how participants would make use of an actual mHealth app and does not emphasize difference across diagnoses. Its aim was to unfold a potential discrepancy between mHealth apps that include a “living with” approach to chronic illness and the ways in which children, young people, and parents deal with the illness in everyday life. The discussions generated important insights into how, and in what situations, the participants prioritize and form their perceptions of illness, their lives, and themselves. Thereby the focus group discussions in this article contribute to social science of digital health innovation and health care paradigms with patients (e.g. Marent et al. 2018; Ruckenstein and Schüll 2017; Wahlberg 2018) by drawing attention to a group that is often overlooked in such studies, namely children and young people. Children and young people’s strivings for normality (Lambert and Keogh 2015), in combination with situation-specific enthusiastic engagements with their illness, shapes their attitudes toward mHealth. The key message is that seeing “life with chronic illness” as a framework for illness monitoring is inattentive to the differentiation of situations where illness can be felt, unnoticed, undesired, normal, curious, cool, limiting, engaging, interesting, or depressing. The concept of ambivalence alerts us to the many modes of illness attention that children, young people, and parents navigate. This group values being able to shift between normality and situations where it is reasonable to focus on learning about illness and treatment. This is interesting in itself but can serve as inspiration for future studies that are more situation-sensitive. We need more ethnographic studies of how chronic illness is practiced and perceived with children and young people. The ambivalences and situation-specificity that lies in how this group attend and do not attend to illness management might hints at the future usefulness of ethnographic design approaches. This would include exploration of how specific functionalities like notifications, monitoring of symptoms, injection practice videos, and visualizations of how treatment works in the body, can be integrated into specific situations by the children themselves.

I suggest that mHealth’s ambition to “better understand how illness, treatment and care impact the entirety of a patient’s life” (Forestier et al. 2019:1) seems mistuned to children and young people’s complex processes of determining when to direct attention to various implications of the illness. My claim is that mHealth innovation should consider how children and young people differentiate between illness and other aspects of their daily lives to free up capacity for experiences other than those related to illness. In accordance with other scholars (Hofmann and Svenaeus 2018; Kiran et al. 2015) I argue that mHealth apps that encourage to think of illness in relation to what one otherwise might think of as normal can create new illness experiences. An app will always cause “subtle nudging” of attention of the user toward the condition that it targets. We should be wary how formalized manual and automatic digital tracking can cause people to perform continual mental tracking of how illness affects them throughout everyday life. Yet, I also argue that the children, young people and parents’ comments justify an app that nudges their existing interests in the nature of the diagnosis and treatment in some designated everyday life situations. Parents, children, and young people strive to differentiate between when and to attend to what aspects of illness. Related to this, Lambert and Keogh (2015) showed that as a response to the experience of “differentness” children and young people can obtain strategies (like rejecting treatment) to achieve a sense of normality. I show that the children of my study have strategies that enables them to care both for their normality and for their illness. This suggests that children and young people might want to engage with their illness in a more informed way but this cannot always play a significant role. Pols (2013) argued that people most likely strive to find ways to live with the illness. Similarly, the young girl Laura so nicely put it: “what we want, is more like ‘how can I deal with it, and how can I live an ordinary life with it?’” The ambivalence in this statement is however strong. The word “deal” can both imply “managing the condition” to obtain an ordinary life or “managing to live with it” to obtain an ordinary life. To figure out how to “live with chronic illness” implies ambivalence and prioritization of when to focus on illness and when not to for these young people.

Acknowledgments

I am grateful for the lively discussions with the children, parents, and the hospital youth panel that spend their time to share their perspectives and put their trust into this study. Furthermore, I would like to thank the Danish Haemophilia Society for your support and engagement in my research. Thank you Associate Professor Henriette Langstrup, Professor Morten Skovdal, Professor Anne Frølich at Institute for Public Health, University of Copenhagen, and Associate Professor Jakob Eg Larsen at Department of Applied Mathematics and Computer Science, Technical University of Denmark for your indispensable guidance. Thank you to the Center of Telemedicine, Capital Region of Denmark and Copenhagen Center for Health Technology (CACHET) for funding the project.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work is part of a PhD study funded by Cachet and Telemedicinsk Videncenter, Capital Region of Denmark.

Notes on contributors

Claudia M. Bagge-Petersen

Claudia Bagge-Petersen researches the life worlds of children and young people. She is moving within the field of Science and Technology Studies and is especially preoccupied with this group’s relationship with chronic illness and health technologies. Among other things, her research has made explicit the structures and practices in digital health innovation that prevents the attuning of digital designs to the ways in which chronically ill children and young people live with and manage their illness. Claudia’s latest research is concerned with possibilities for supporting the knowledge production, agency, and visions of children and young people regarding climate change.

Notes

1. An earlier version of this article and discussion of its results appears in my PhD thesis (Bagge-Petersen 2021).

2. The monitoring measures included in the probing statement card did not reflect an actual hemophilia-app. Currently an mHealth app is being developed for hemophilia-patients in Denmark, which enables them to monitor treatment, bleeds, and triggers. More information can be found here: https://www.rm.dk/sundhed/faginfo/center-for-telemedicin/projekter-og-indsatser/Beslutningsstotte-i-bloderbehandling/.