Chronic illness experiences for young adults: a qualitative study.

Despite prevalence rates of approximately 10–20%, 1 5 there is limited literature and clinical guidelines on the best practices for chronic illness treatment and management in older adolescent and young adult populations. Although there are guidelines for the care of young children with complex chronic conditions, there is less knowledge about chronic conditions that emerge slowly over adolescence and young adulthood. 6 8 That is to say, once childhood has passed, both medical and social science research tend to focus on chronic health conditions in older populations. This reflects that increased political, social and clinical awareness of chronic illness has emerged largely in relation to ageing populations, the increasing rates of diseases involving lifestyle behaviours in their aetiology and long-term treatments for previously fatal conditions. 9 11 For those who are chronically ill when young, the context of youth is essential for understanding their experiences, and for fostering appropriate social and therapeutic support. Young people living with chronic illness experience specific diagnostic, social, emotional and educational challenges. 12 21 Most often, studies of this cohort focus on the meaning that chronic illness takes on for those who are still ‘developing’ their own biography. 1316 22 These studies demonstrate the variety of responses that young people can have to chronic illness: they might integrate illness into a positive narrative about their lives; 22 24 they might attempt to foster and project other forms of independence and ‘health’; 25 28 or otherwise project a sense of ‘normalcy’ about their lives. 29 30 Within this research tradition, there are limited studies that look at the experience of young people living with a significant diversity of chronic illnesses, where recruitment has been done based on the existence of chronic illness, rather than identification with a specific disease category. 24 2629 The various challenges of chronic illness care manifest for young people in particular ways. Healthcare systems across contexts have traditionally struggled organisationally to manage the array and proliferation of chronic illnesses. This is especially true for complex chronic illnesses and cases of multimorbidity—institutions are often ill-equipped to provide individually catered, long-term care, and it can be difficult to coordinate between medical specialties when diseases or symptoms impact multiple aspects of human biology. 31 36 At its worst, these difficulties can lead to what has been termed a ‘chronic crisis’ for patients, where there is consistent ‘fragmentation’ in their life that causes discomfort, inconvenience and risk. 37 38 There also are many unknowns for a large number of chronic illnesses—ranging from medically unexplained symptoms to autoimmune disease—and the consequent uncertainty can be difficult for healthcare practitioners to manage, as they must attempt to provide clarity for patients without denying the presence of unknowns. 39 42 Issues such as these may be particularly pronounced when combined with the organisational and relational difficulties for young adults when they transition away from paediatric care. 43 44 While there are some contexts, such as cancer survivorship, where the need for specific adolescent and young adult care is recognised, 45 46 this research and policy programme has not been established for other chronic conditions. There is also limited research on how the cultural idea of health as a moral issue impacts the experience of non-‘lifestyle’ chronic diseases, particularly for young people. 14 In contexts such as Australia and the UK, increasing emphasis on the ‘self-management’ of chronic illness can, at times, risk contributing to rhetoric around chronically ill people creating their own health issues and then being unable to manage them. 47 50 This is true in part because this literature is closely related to that which seeks to encourage lifestyle changes as a way to prevent or reverse non-communicable chronic conditions—literature which can inaccurately and counterproductively undervalue social determinants of health and (inadvertently) shame individuals for health conditions in a way that actually discourages behaviour changes and good condition management. 51 53 These dynamics speak to broader discussions about how the knowledge and understanding others have of particular diseases and illness experiences have a significant impact on the perceived legitimacy of sickness accommodations and quality of care. 54 59 Given that images of chronic illness rarely encompass youth—and vice versa—age is likely an important contextual factor in how these issues are experienced. 14 Chronic illness thus has serious and varied impacts on the everyday life of young people, and in line with social science traditions in qualitative research, we sought to understand individual experiences of chronic illness in conversation with one’s social position and broader societal structures. 60 The aim of this study was therefore to explore the experience and impact of chronic illness in the lives of young people. Specifically, we aimed to elicit young people’s reflections on how they navigated their life with chronic illness and what they saw to be the major influences on their experience of chronic illness.

This paper comes from a qualitative social science research project undertaken to improve understanding of the experience of chronic illness—as a general experience, across disease categories and diagnosis timelines—for young people. This study focused on physical illness, and chronic physical illnesses were defined as diseases or conditions that have continuing or recurring physical impacts and do not have an ‘acute’ treatment programme (eg, most autoimmune conditions, chronic pain conditions, many neurological conditions). 61 We undertook 33 interviews with young adults aged between 19 and 29 years, with a range of chronic health conditions and symptoms. Since 21 of 33 participants had become ill in adolescence (when aged between 10 and 19), we could also analyse their reflections on the experience of chronic illness during adolescence. Our focus on young adulthood as well as adolescence reflects the often prolonged period of ‘youth’ in post-industrial economies where, for some, more time is spent in higher education, and, for all, it can take longer to become financially stable and independent. 62 64 When referring to adolescents and young adults together, we use the phrase ‘young people’. In an attempt to recruit people with a range of chronic illnesses, recruitment materials were distributed through flyers in public spaces and specialists’ waiting rooms, study information on research pages of chronic disease websites and snowballing. Potential participants were eligible if they were born between 1994 and 2004 (inclusive), lived in Australia, and “had [their] life impacted by a persistent health difficulty for more than 6 months”. In recruiting participants with a wide range of chronic conditions, we sought to examine what elements of chronic illness impacted people’s lives, across disease categories. 65 67 This also builds on previous research that has shown the value of analysing how the social construction of illness affects people with different conditions, particularly given that people with different conditions can understand themselves as part of a broader, chronically ill community. 68 69 Potential participants could either fill out an online form with their contact details, or email IH directly. Once a participant expressed interest, they were emailed a copy of the Participant Information Statement (PIS) and the Participant Consent Form (PCF) so they could look over it in their own time and ask any questions. If they still wished to participate, a time for the interview was organised to maximise convenience of the interviewee. When in person, the consent form was printed and signed before commencing the interview, while participants returned a soft copy before online interviews. Both the PIS and PCF were written in accessible language so that they were easy to understand. All participants were told that they could review their transcript if they wished, and one participant did so. This participant wished to ensure that the details of their illness and life experiences were sufficiently anonymised and went through their transcript to re-word sections (in addition to researcher redactions/anonymisation). These rewritten sections are not quoted from. Given the semi-structured nature of interviews, participants could guide the conversation towards the topics and experiences they felt comfortable talking about, and they were not pressed to answer any questions they did not wish to. Participants were also able to pause or stop the interview at any time. No interviews needed to be paused due to participant distress, however, all participants were given information about free and confidential counselling services on their copy of the PIS. Participants did not receive a monetary incentive to participate in the study, limiting the likelihood of imposter participants. Recruitment ended when the research team agreed that theoretical sufficiency had been reached, which was when new conceptual insights were not arising in interviews and there was sufficient repetition between interviews to be confident in our theoretical coding. 70 Semi-structured interviews (n=33) were conducted by IH between March 2023 and February 2024, either face-to-face (19) or via video call (14). Face-to-face interviews were conducted in bookable private rooms in public locations convenient for participants. Interviews ranged from 53 to 110 min (mean=70 min). Interviews began with the open-ended question of “how is your health at the moment?”, and the interview schedule was structured around three themes: experiences of health and illness, care and relationships (for the interview guide, see online supplemental material ). These themes were explored in interviews with a particular focus on how they intersected with participants’ young age. While all interviewees were young adults, most participants had become ill in adolescence and reflected on their experiences of illness during this period in their life. To maintain the confidentiality of participants, we report participant quotes with an age bracket, gender identity (male or female) and a brief description of their illness experience (either an indicative disease label or a description of their symptoms if they did not have a diagnosis at the time of the interview). Where this information is the same between participants, we distinguish between them with (a) and (b). Interviews were audio-recorded and transcribed verbatim by IH. Our approach to analysis was based in the traditions of constructivist grounded theory and happened concurrently with data collection. 71 74 We undertook three major steps in data analysis: first, transcripts were repeatedly read, and memos were made on the identified elements in each interview, with particular attention to how the social, relational and discursive elements of participant stories related within the interview and, later, between interviews. After this initial memo writing, the second step was to further organise data into sets of focused, descriptive categories. Third, these categories were discussed and the data was theoretically coded collaboratively while analysing its conceptual patterns with the goal of theorising about young people’s experiences of chronic illness. Tensions across interviews were also discussed to enhance trustworthiness and ensure rigorous interpretation of the data. The two researchers who led analysis (IH and AB) position themselves within interpretive sociological traditions, which, in the case of illness, view it as both an embodied and socially mediated experience—constructivist grounded theory was therefore chosen as a method to accommodate the analysis of complexity, instability and contradiction. 73 74 All research team members came to this project with their own positionality and reflected on how their own research, clinical and lived expertise influenced their understanding of the data. 75 76 The SRQR qualitative research reporting checklist was referenced to ensure study design, data collection and data analysis was rigorous and systematic. 77 Patients and the public were not involved in designing the study. This work highlights patients’ perspectives to inform future studies.

We conducted 33 interviews with young adults living with chronic illness. The average age of participants was 23 years, and there were 23 cis-women, 9 cis-men and 1 non-cis man. Nine participants were people of colour, seven had gone to either primary or high school outside of Australia, and eight had grown up and/or currently lived outside a metropolitan area. All participants currently lived in Australia. The conditions of participants are represented in table 1 : they are sorted into broad categories, and diseases are given with varying levels of specificity in order to protect the anonymity of participants. Some participants had multiple chronic conditions across categories, represented in the fact the total number is greater than 33. Two participants did not have a diagnosis at the time of their interview, and 13 participants had been diagnosed within the past month and/or were still undergoing significant diagnostic and treatment concerns/testing/trials. 21 participants had become ill between the ages of 10–19, although that had not always resulted in a diagnosis during adolescence. While this is a heterogeneous sample, this article reports on findings across disease and illness categories, gender and other identities or experiences. Factors such as gender, race, geographic location and socio-economic status did, however, impact participants’ experience of illness. Some participants explained that they felt their gender and race impacted how seriously their symptoms were taken by healthcare professionals, and the geographic and socio-economic position of particular participants shaped and limited their access to care. 78 81 We identified three key themes surrounding the management of chronic illness for young people: (i) the ways in which being of a young age, and surrounded by young peers, influenced the processes of seeking diagnosis for, and then managing, chronic illness; (ii) the difficulties young people have in understanding and describing the impact of their chronic illness on life and lifestyle, especially outside of the ‘expected’ symptoms of their disease; and (iii) feelings of guilt, self-blame and exhaustion for young people living with chronic illness. The significant and varied impacts of participants’ youth on the role of chronic illness in their lives is represented in the indicative quotes in table 2 . Participants reflected on the fact that when their illness emerged while young, they did not know how to decide if what they were experiencing was ‘normal’, given the significant physical changes that are expected when growing up. They also explained that they struggled to articulate their symptoms given that they did not have a working vocabulary of illness. Given these barriers, they often internalised their struggles as personal failings, the lasting repercussions of which were explained by a participant (26–29, male) living with a neuroimmune condition: I was like ‘well I guess that’s what I am, [lazy], and this feeling in my body’ – which I now know is fatigue – ‘is the feeling of just laziness.’ And I think that really contributed to this, to the negative sense of self that I have carried the whole time. CFS/ME, chronic fatigue syndrome/myalgic encephalomyelitis; IBD, inflammatory bowel disease. Additionally, once they had a diagnosis, participants still struggled to talk to their peers about illness. Participants were concerned about how their peers, and how those older than them, would interpret the existence of illness—they did not want to disrupt their peers’ fun, and they also did not want people to think less of them for being ill. Sometimes this resulted in participants hiding their illness, and in other cases, where participants had to withdraw in certain circumstances, they reported strong feelings of grief. The significance of these experiences in participants’ lives reflects, in part, that for young people different experiences of disconnection (eg, from peers, from school) combine in complex ways that worsen feelings of stigma and isolation at a formative period of development. 82 When the existing institutional and social settings of young people did not accommodate discussion of illness, participants often struggled to find age-appropriate spaces to express these feelings, cementing their sense of shame and being out of place. Overall, participants’ youth meant that both their environment (eg, school) and the pressures of their life stage (eg, developing bodies and the role of peers) caused specific and compounding difficulties in their experience of chronic illness. For our participants, this felt like an accumulation of barriers to living well with chronic illness as a young person: there were barriers to understanding their illness, expressing their needs and receiving support. The lasting impacts of this are described further in our third finding. As shown in table 3 , participants described the wide-ranging impacts of chronic health conditions in their life. The reverberations of illness were, however, difficult to come to terms with and receive support for. While participants could, to some extent, describe how specific and expected symptoms of chronic illness impacted their life (eg, pain in a diseased area was debilitating), explaining the more complex impacts of their chronic illness was challenging. These complexities included the ongoing fatigue, disorientation and fear that came after chronic pain, the side-effects of medication, the stress of disease management and the impact of lesser understood (both medically and socially) symptoms of disease. As one participant (22–25, female, endometriosis) explained, the after-effects of pain are IBD, inflammatory bowel disease; MCAS, mast cell activation syndrome. hard to explain to yourself […] It causes me worry, because I’m not sure what’s going on and I don’t know whether I should do something about it, so that will affect me in a bigger way than just ‘I can’t work when I’m in pain and it’s better when I’m not in pain.’ This reflects broader limitations in social understandings of chronic illness. 14 This individual uncertainty and fear was then compounded by the sense participants had that those around them did not realise or understand these chronic illness complexities. These uncertainties and tussles were central to the experience of chronic illness, and again, the perceived and actual lack of understanding for participants’ experiences exacerbated their emotional load. That is, these experiences felt heavier given the absence of both explanatory frameworks of the broad impacts of chronic illness and places to discuss these experiences. Following on from the previous finding, these absences appear to be particularly pronounced for young people. Participants frequently reported feelings of guilt, self-blame and exhaustion ( table 4 ). This was often related to the difficulties they had when learning about, and attempting to articulate to others, the experience of chronic illness (as described above). Together, this demonstrates that the consideration of youth as a factor in chronic illness care must go beyond the idea that young patients are ill-prepared to look after themselves. Instead, youth can further patients’ sense of isolation, exhaustion, guilt and self-blame, which may exacerbate the known difficulties of chronic illness management. IBD, inflammatory bowel disease. These feelings often began developing in childhood when participants were told that their symptoms were a result of personal failure, as described in the first finding. It also sometimes had its roots, in participants’ minds, in how they were taught about disease and illness—that people should look after their body, and that if something ‘went wrong’ it was likely their fault. As one participant (22–25, female, neuroimmune condition) explained: I think, particularly among young people, there’s this idea that we’re invincible in some way, an ‘if I do the right thing nothing bad will happen to me’ sort of thing. And then the flipside is that if something bad does happen to someone, people look for a reason for it. Maybe they deserved it in some way. […] I think that was fairly ingrained in what we were taught. These factors led to some participants not receiving a timely diagnosis for their condition, which in turn could make them struggle with regret and blame for not advocating for themselves better as a child—despite the fact that they were often receiving the (implied or explicit) message that nothing was wrong from adults such as teachers, parents and doctors. Now, as young adults, participants still struggled with navigating how to manage the financial, physical and emotional stress of chronic illness. Sometimes, the tensions were very practical: for example, a decision to not engage in full-time work to manage their illness might mean that the cost of medical care risked being prohibitively expensive, potentially worsening care but also increasing their stress levels. More broadly, the administrative challenge of organising many specialist appointments for second and third opinions—along with the emotional stress and disappointment of seeing new healthcare professionals who were ultimately not particularly helpful—was a significant but rarely seen barrier for seeking help. Some of these complexities of this are well captured by this participant (27–29, female, IBD (b)): And I mean it’s been a bit stressful because you worry about money more when you don’t have a stable full-time job. I try not to stress too much because I know that stress doesn’t help with illness at all, but it is something that anyone would worry about I think. […] I feel like I did have a little inward battle with myself, saying, ‘no, I’m going to force my way through this and just keep doing what I want to do.’ But that just makes things worse. […] Maybe [before] my body was shouting out that I needed some care and I just didn’t listen. The feeling that they should ‘push through’ their symptoms also put participants in a bind. If they did not push through, they feared the labels of weak or lazy. If they did push through, they risked being blamed for a potential flare of their chronic illness since they had not rested appropriately. This was not just blame from others—participants again struggled both to not feel guilty about resting, but also to not blame themselves when their illness was at its worst. This self-blame in some cases delayed participants seeking medical advice on new symptoms, since they assumed it was their poor management rather than a development in their condition or a new disease, as was the case for one participant (22–25, male) with type 1 diabetes who had recently been diagnosed with another autoimmune condition: I thought, maybe I wasn’t managing my diabetes right, maybe I’m eating something wrong. It’s yet another complexity of, sort of, all of the responsibilities on you. You feel like, whenever something goes wrong, it’s me, I must be doing something wrong.

The vast majority of research and scholarship on chronic illness, and more recently ‘chronic living’, 9 has focused, understandably, on older adult populations. 10 83 84 This has left a significant gap in our understanding of chronic illness and disease across the life course. Despite some emerging literature seeking to fill this gap, 13 15 16 20 21 considerable work is still needed to explore the experiences of young people living with chronic illness. This study indicates that youth is an important contextual factor to consider when analysing people’s experiences of chronic illness. In particular, we suggest that a focus on how youth influences the experiences of chronic illness is important to bolster social support throughout young people’s lives and will specifically help equip clinicians to engage effectively with the rising number of young people requiring healthcare for chronic illness diagnosis, treatment and management. To be most effective, this research needs to feed into both best practice guidelines and health and education policy. The three key findings of this study indicate where current understandings of young people’s experience of chronic illness may be compromising care and management plans. First, participants reported age-specific feelings of chronic living, including the pervasive uncertainty and guilt associated with chronic illness when young, and indicated that current support and education did not adequately ease these tensions . Second, this lack of guidance also meant that participants struggled to manage the repercussions of chronic illness, such as anxiety and fatigue, that extended beyond specific disease symptoms. Third, the above challenges were worsened by ideas about self-control and self-responsibility, and this compounding sense of inadequacy and insecurity made it harder for participants to engage with healthcare going forward. Together, these findings indicate that discussions of difficulties in healthcare for chronically ill young people need to recognise that behaviours which are often characterised with individualising rhetoric (eg, self-management, non-compliance, passivity) come in the context of structural factors that limit young people’s ability to understand their illness and seek care. Consequently, healthcare practice and policy can be made more effective by recognising and combating these serious sources of anxiety and subsequent withdrawal. Our study has filled a gap in the existing literature on young people’s experiences of chronic illness. Currently, the trends in the literature are to either outline discrete impacts of illness on young people’s lives, 85 86 recount practical management strategies for addressing the concerns facing young people with chronic illness and those who care for them 87 or analyse the emotional and identity-driven difficulties of experiencing chronic illness as a young person. 88 Our findings help fill the spaces left by these previous studies: our in-depth qualitative analysis allows for an understanding of the feelings and concerns behind young people’s management of chronic illness, which provides important context for practical changes for chronic illness care and education. The need for this kind of research to guide practitioners has recently been realised in the context of follow-up care for adolescents and young adults who are cancer survivors, 45 46 but similar work is yet to be done for other chronic illness experiences. By speaking to a diverse range of people with different diseases and illness histories, we can identify common elements that are useful for establishing the broad, conceptual shifts that are needed to better appreciate the challenges faced by young people living with chronic illness. This can, in turn, help inform responses to the known difficulties that arise when young adults transition away from paediatric care and attempt to integrate into adult healthcare. 43 44 Future research could look more specifically at how safety and support can be created in healthcare, and at how education curriculums could change to, first, better enable young people living with chronic illness to support themselves, and second, better equip young people to support friends living with chronic illness. This would likely involve seeking the perspectives of clinicians, teachers and parents and guardians. While the similarities in this study’s heterogenous sample are informative for understanding the influence of youth on young people’s experiences of chronic illness, this study was limited by the fact it could not examine the ways that other important aspects of identity and circumstance shape experiences of illness, often in forms of intersecting bias and disadvantage. 78 81 It also could not consider disease-specific barriers, concerns or supports that might be needed for people living with, for example, rare or highly stigmatised diseases. The use of flyers to recruit for this study means that we also cannot be confident that our sample is representative of these various circumstances.