The Hidden Burden: Encountering and Managing (Unintended) Stigma in Children with Serious Illnesses

Families managing serious health conditions in children are often burdened not only by the challenge of health management but also by the heavy weight of stigma. To assist these families, various physical and digital support systems have been established to address their emotional and informational needs. We interviewed 32 children and parents living with serious chronic pulmonary illnesses to gain insights into their experiences with both their conditions and support systems. We discovered that, although a wide range of support systems were available, most participants chose to engage selectively with or completely withdraw from them. Using the ecological systems theory, we elucidate the presence of health-related and unintended stigmas associated with support systems across different ecological layers. Our work provides a comprehensive and dynamic perspective on these stigmas, considering technological, interpersonal, institutional, and social factors. By examining how stigma arises in social interactions, we introduce and delve into the concept of "stigma work" and offer design considerations for more empathetic support systems that attend to individuals and groups with stigmatized health conditions, identities, or experiences.


INTRODUCTION
Families caring for children with serious health conditions, such as mental illnesses, cancers, cystic fibrosis, congenital heart disease, severe asthma, and type 1 diabetes, often bear the weight of stigma.These conditions, characterized by their persistent nature, high mortality risk, and significant interference with families' daily functioning or quality of life [61], demand continuous, often intensive medical care [34,70].The stigma associated with these diseases can amplify these challenges, inciting feelings of shame, isolation, and being misunderstood among those affected [126].Stigma is also a globally recognized barrier to health-seeking behavior, engagement in care, and treatment adherence across a broad spectrum of health conditions [111] and is a fundamental cause of health inequalities [62].
To mitigate this multifaceted problem, a wide array of support systems have been established, aiming to aid families in managing their health conditions [19,102,111,120,124].These support systems, which take both physical and digital forms, incorporate various elements, including peer support groups [79,119], educational programs [87,109], media information [4,33], online health communities [17,104], and specialized healthcare services [29,74].
Although these support systems offer numerous benefits, such as providing improved access to specialized healthcare information [18,20] and creating spaces for peer support [19,59,131], they can also have unintended negative consequences.For example, research has shown that these systems may inadvertently provoke emotional distress by persistently reminding users of their illnesses, thereby engendering feelings of isolation and hopelessness [5,36,66,73,80,131].Thus, the complexity of offering support to those with stigmatized conditions requires careful exploration to attend to their unique needs and lived experiences.
While prior research has examined the negative impacts of a specific technology and support systems for people with certain health conditions, a more comprehensive understanding of the full range of technological, interpersonal, institutional, and social factors that shape individuals' experiences managing serious and stigmatized health conditions is needed.In this study, we aim to expand this understanding, investigating the everyday experiences of children and parents living with serious chronic health conditions and exploring how they perceive and interact with the available support systems.Attending to children with serious health conditions, a notably stigmatized population, is crucial, as stigma may significantly affect their physical, cognitive, and social-emotional development more than adult populations.Specifically, we are interested in the following research questions: • Q1: What are the lived experiences of children with serious chronic health conditions and their parents regarding health management, and what types of support systems and resources are available to them? • Q2: What are the challenges children and parents face when utilizing existing support systems for health management?• Q3: How do children and parents adapt to and address the unintended negative consequences of using digital health technologies for health management?
To address these research questions, we situated our study within the context of severe pediatric lung diseases, specifically cystic fibrosis and severe asthma.We chose this context for two key reasons.First, the lack of a cure and the need for rigorous daily management profoundly impact the quality of life for those with these conditions.Examining people's lived experiences and family/social dynamics when managing children's health conditions provides a holistic understanding of the challenges faced, and it could inform the design of future support systems that better align with and attend to their lived experiences.Second, the growth of technological support systems-including online health communities [51,108]; wearables [48,118,121]; and AI-based medical devices, such as smart inhalers [46,56,78]-offers new opportunities for managing these diseases.However, research that systematically examines how families with seriously ill children perceive and utilize the wide range of support systems available to them is lacking.
We conducted semi-structured interviews with 32 participants who either live with cystic fibrosis or severe asthma or care for someone with these conditions.We identified various support systems and resources families turn to when caring for children with cystic fibrosis and severe asthma.However, despite having access to a vast range of crafted support systems, many of our participants began questioning and even resisted utilizing many of these resources.Before participating, some families even dismissed the support structures explicitly established for them, such as patient support groups organized by hospitals or foundations.Others consciously decided to limit their engagement with, or entirely withdraw from, certain support systems over time, including systems like online health communities and digital health information platforms.We leveraged the ecological systems theory (EST) to understand why and how our participants experienced stigma when receiving different forms of social support and resources and the strategies they employed to alleviate and avoid the support they associated with stigma.This multi-layered approach provided us with a comprehensive, holistic understanding of stigma in the context of serious chronic illnesses.Based upon our findings, we propose an interactionist perspective to study stigma within the scope of HCI and CSCW research.We explore how, paradoxically, support systems designed with good intentions can sometimes unintentionally amplify stigma for those seeking help.We shed light on the efforts required by families to manage stigma and propose design implications for more empathetic support systems to mitigate the unintended consequences of stigma and ease the burden of work required to manage it.
Therefore, this paper makes five contributions to the literature: • We provide an in-depth portrayal of the day-to-day experiences of families managing cystic fibrosis and severe asthma.This exploration elucidates the intricate challenges these families encounter when interacting with support systems, including individuals, social systems, and digital systems.Such empirical findings serve as a starting point for reflecting on ways to better enhance the design of health technologies and services to support these families.• Our research holistically approaches stigma through an interactionist view by investigating how stigma is produced in action, its impact on families, and their strategies to navigate stigma.Although stigma is a frequent topic of discussion, an in-depth exploration employing this dynamic approach remains scarce in current HCI and CSCW studies.Thus, this approach makes a meaningful contribution to the fields of HCI and CSCW.• We introduce "compounded stigmatization" as a novel form of unintended consequences of design.Despite their good intentions, support systems can inadvertently perpetuate stigma, creating a paradoxical and amplifying effect.This compounding effect implies cumulative harm from layered stigma, where the support system stigma exacerbates the inherent condition stigma, forcing individuals to navigate both.This finding underscores the need for careful design considerations to prevent potentially introducing another layer of stigmatization when developing support systems for stigmatized groups.• We introduce "stigma work" as a new form of patient work, focusing on how families manage, navigate, or resist the stigma associated with health conditions.Unlike traditional patient work, stigma work navigates societal perceptions and personal feelings and extends beyond the healthcare system to wider social networks and digital spaces.Recognizing and making visible this often-invisible work not only acknowledges the resilience of these families but can also inspire more empathetic designs in supportive systems.• We highlight three design recommendations for more empathetic support systems, including 1) empowering families to define and establish their sense of "normalcy," 2) facilitating families' agency in choosing the type and timing of support, and 3) cultivating a broader environment filled with hope and joy.
While our study centers around children with severe chronic lung conditions, we believe our findings have broader implications for other groups, including those confronting different stigmatized health conditions, identities, or experiences.We hope that our research will stimulate more empathetic design practices across the expansive fields of CSCW, HCI, and health informatics, ultimately extending benefits to all those dealing with stigmatized health conditions, identities, or experiences.
2 BACKGROUND: CYSTIC FIBROSIS AND SEVERE ASTHMA Pediatric cystic fibrosis and severe asthma are serious, chronic lung diseases often managed in the same specialized clinics due to similarities in their symptoms, monitoring requirements, medication regimens, and lifestyle management.Cystic fibrosis, which is a genetic disorder affecting more than 70,000 people worldwide, is characterized by disrupted mucus clearance leading to buildup in the lungs and other organs [52].This condition varies significantly among individuals in terms of symptom types, severity, and treatment plans due to factors such as gene types.Though cystic fibrosis was once primarily fatal in childhood, life expectancy has improved to around 50 years with medical and technological advancements [52].Severe asthma involves persistent inflammation and airway narrowing resulting in breathing difficulties.While not as prevalent as milder asthma, severe asthma afflicts about five percent of children [60], involves frequent attacks despite treatment, and often requires lifelong management [123].Despite different underlying causes, both conditions profoundly impact quality of life and can result in life-threatening complications.
Upon receiving a diagnosis of cystic fibrosis or severe asthma, children and their caregivers undertake a lifelong commitment to disease management due to the chronic nature of these conditions.This journey entails a complex routine of daily treatments, including physiotherapy, nebulizer use, and medication designed to control symptoms, prevent decreased lung function, and minimize infection risk.Furthermore, vigilance over environmental factors, such as air quality and lifestyle choices (e.g., physical activity), is crucial, as these elements can significantly influence symptom severity and overall health.
The visible and intricate disease management required can lead to stigmatization, as the substantial commitment sets these families apart.Cystic fibrosis patients, for instance, could confront stigma due to visible symptoms, such as chronic coughing, as well as the necessity for home-based daily therapy [94].Similarly, those with severe asthma may face stigma from frequent coughing, acute breathing challenges, and restrictions on activities, such as intense sports [12].Stigma profoundly shapes the experiences of these individuals by influencing care-seeking behaviors, treatment adherence, social interactions, and psychological well-being [111].As such, understanding and addressing stigma are crucial when managing serious chronic conditions like these.

Stigma and Stigmatized Health Conditions
Stigma has been studied across disciplines such as social psychology, anthropology, and sociology.Although defined in various ways [84,110], the modern understanding of stigma is largely influenced by Goffman, who viewed it as a process impacting an individual's social identity [55].Goffman primarily focused on the psychological impact of stigma, emphasizing stigmatized people's feelings about themselves and their relationship to those who are "normal." Additionally, stigma can be a "persistent predicament" [77], and individuals who are stigmatized often transition from "normal" to "discredited" or "discreditable" social statuses [55].Building upon Goffman's foundational work, Kleinman and Hall-Clifford underscored the interconnectedness between stigmatized individuals and those who stigmatize, suggesting that these relationships exist within localized social networks [72].Link and Phelan further conceptualized the idea of structural discrimination, which refers to the institutionalized disadvantages faced by stigmatized groups, examining how power (social, economic, and political) shapes stigma in society.They defined stigma as the "co-occurrence of its components-labeling, stereotyping, separation, status loss, and discrimination-and further indicate that for stigmatization to occur, power must be exercised" [77].Thus, stigma can lead to status loss with various negative consequences, produce outcomes unrelated to initial stereotypes, and cause unintended negative effects from coping efforts.HCI researchers have increasingly been examining the concept of stigma in the context of individuals with a range of health conditions and goals, and a growing body of research has explored the intersection of stigma and cultural taboos and the challenges present in developing intimate care and health tracking technologies for women's health [1,2,28,38,95].For instance, studies have indicated that stigma profoundly impacts women's fertility care, influencing tracking and care practices and leading to negative emotions, such as stress and guilt [35,37,38].Stigma also shapes self-image and the way individuals with polycystic ovary syndrome seek online social support [32].Additionally, researchers have studied stigma concerning other health concerns, including HIV [64,81,83,109], senior health [27], and mental health [45,89,90].Within the HCI work addressing stigma, one line of research has tackled stigma by developing technological interventions that provide social support and healthcare access to individuals (e.g., digital educational programs [109]).Simultaneously, another research direction has focused on designing technologies that enable individuals to cope with "internalized" stigma through interaction with their bodies [28].
Beyond HCI, research fields have illuminated ways to combat stigma through research and design.Kleinman and Hall-Clifford emphasized the importance of understanding the unique social and cultural processes that give rise to stigma in the lived experiences of affected individuals.They further stressed that, by examining how local values shape stigma in people's lives, more effective and measurable anti-stigma interventions can be designed [72].Link and Phelan argued that efforts must be comprehensive and operate on multiple levels, addressing both individual and structural discrimination, to tackle stigma successfully.Additionally, these efforts should target the root cause of stigma by altering the attitudes and beliefs of influential groups or restricting their ability to impose these beliefs, thereby ensuring lasting change [77].Without such foundational transformations, interventions focusing on a single mechanism will likely fail due to unaddressed contextual factors.

Unintended Consequences of Design
The concept of unintended consequences is rooted in Merton's work, "The Unanticipated Consequences of Purposive Social Action" [88].Merton initially coined the term "unanticipated consequences" to denote unplanned, unforeseen, and surprising outcomes.He defined these as "those elements in the resulting situation, which are exclusively the outcome of the action, that is, those elements which would not have occurred had the action not taken place." Over time, the term "unintended consequences" emerged in the literature to describe unplanned but sometimes anticipated consequences [40].
"Unintended consequences" is frequently used in HCI and CSCW literature to characterize unplanned outcomes arising from deploying and using technology systems or related research [42,93,96].These well-intentioned designs can often lead to unexpected positive, neutral, or negative effects.For instance, Page et al. studied how social media's essential features, such as user-generated content, connectivity, and networked interaction, can inadvertently lead to physical harm, financial loss, social anxiety, feelings of exclusion, and unintentional damage to social relationships among young autistic adults.They identified implications for social media platforms designed to mitigate such negative consequences, such as the use of plain language in social media interfaces [93].In another case, Seetharaman et al. documented how gig work platforms unintentionally limit access to inter-relational and instrumental support for platform workers, leading workers to self-organize peer networks for companionship and emergency assistance [106].Recently, HCI and CSCW research has increasingly examined research ethics by studying the unintended consequences of academic research.For example, Parker et al. noted potential unintended consequences in HCI and social computing research, including individual, community, and institutional harm [96].Do et al. advocated actively considering unintended consequences, emphasizing the importance of incorporating diverse perspectives through community participation to incentivize investigations of potential impacts in computer science sub-disciplines [42].Collectively, these discussions highlight the HCI and CSCW communities' increasing interest in identifying and actively developing strategies to mitigate the unintended consequences of well-intentioned design, particularly those that are negative.

Digital Health-Induced Emotional Distress and Its Impact on Individuals
Digital health technologies, such as mobile health apps, online health communities, and wearable devices, are increasingly part of people's daily lives.These systems are often designed to provide easy access to health information [18,20,76,115,117,125], tools for health data and goal tracking [13,16,31,92,105,107,113,114,116], and platforms for patient engagement [59,131].These technological innovations support health management and wellness goals, and nurture communities in which users share experiences and advice.
However, though they bring vast potential and positive changes to people's everyday health and wellness, digital health systems can foster an environment that deepens and strengthens negative emotions in individuals, whether through access to information, communities, or the freedom to express oneself.For instance, researchers have documented the interplay between negative emotions and self-tracking technologies in personal informatics and health informatics literature.Though they have the potential to promote healthy behaviors, achieve health-related goals, and manage chronic health conditions, self-tracking technologies and their resulting data have also been shown to encourage people's feelings of guilt and shame [68], stress and anxiety [36,73], and hopelessness [16], while also serving as a reminder that the individual is a sick person [5].In addition to self-tracking technologies, research has documented how other internet technologies can cause negative emotions among users.For example, retrieving and viewing information from search engines about health symptoms and potentially related problems can trigger negative emotions, such as feeling overwhelmed and frightened [75].Similarly, individuals often seek social support through venting or expressive emotions such as fear or frustration in online health communities [66].
Though it has potential positive influences, such as providing emotional validation [7], it has also been shown to cause strong negative emotions or psychological states brought on by other members' passing [131] or unsupportive, aggressive commentaries [8].The initiation, amplification, or reinforcement of these negative emotions by internet technologies can potentially lead to digital self-harm, characterized as online behavior that intentionally harms an individual's physical well-being without suicidal intent [97].For instance, Gak et al. found that exposure to targeted weight-loss advertisements triggered digital self-harm in individuals with a history of disordered eating, as these advertisements reinforced low self-esteem and promoted unhealthy behaviors [53].
With a growing number of children embracing internet technologies at progressively younger ages, research and government institutions have been increasing efforts to investigate the impact of these technologies on children's development.Numerous studies have identified connections between extensive networked media usage and symptoms of depression or anxiety [85,128].The negative emotions and developmental harm experienced by children are often attributed to negative social comparisons, emotion-regulation difficulties, social avoidance, and cyberbullying enabled by traditional and social media platforms [63].Their stage of life, marked by identity formation and learning to navigate complex social situations, heightens the children's emotional sensitivity during these pivotal years [44].As digital platforms become increasingly central to their informationseeking behaviors and health and wellness needs, understanding how to design online technology that caters to their health needs without exposing them to harmful emotional experiences is critical.
Previous research in HCI and CSCW has documented the intricate cycle of stigma and emotional distress in adults' use of technology for health and wellness support [7,10,27,32,36,83,89,127]. However, limited systematic studies have investigated the production and impact of stigma, along with its emotional consequences, on children and their parents.We address this gap in the current study by thoroughly examining the production of stigma, its impact on families, and the strategies they employ to manage it in their everyday lives.

METHODS
We conducted a qualitative interview study with children with severe asthma and cystic fibrosis to answer our research questions.Specifically, we aimed to understand their unique healthcare practices, technology usage, and the associated challenges they experienced in their daily lives.This section outlines our study's research setting, participant recruitment, data collection and analysis methods, and potential limitations.

Research Setting
We collaborated with a major children's hospital in a suburban region of the United States for participant recruitment.This hospital is one of the region's most comprehensive pediatric health systems, serving over two million children aged 0-21 across four counties.The hospital's Pulmonary and Lung Division is distinguished in its field, offering holistic care to children living with lung conditions in the region.Its Severe Asthma Program provides specialized care for children suffering from life-threatening asthma or severe or difficult-to-treat cases.Additionally, the hospital is home to the region's sole cystic fibrosis care, research, and treatment center for children, which was established with support from the Cystic Fibrosis Foundation.The specialized clinical teams within these divisions consist of a diverse range of professionals, each contributing their unique expertise.This array includes pediatricians, nurse practitioners, dietitians, social workers, psychologists, and nurses.

Recruitment and Data Collection
To recruit study participants, the first author took on a role as a clinical associate at the pulmonary clinic at our research site, beginning in December 2022.Over the next 6 months, they attended severe asthma and cystic fibrosis clinics weekly.At the research site, the recruitment process was facilitated by the clinical team: the first author would remain in the provider rooms while a case manager engaged with families to determine their eligibility and interest in the study.If a family expressed interest, the case manager would then introduce the first author, who would explain the study to both the children and their parents and arrange a suitable time for an interview if they agreed to participate.This comprehensive recruitment process involved 16 visits (13 in-person and three via telehealth) conducted by the first author, each lasting around 4 hours.
We specifically chose to recruit children aged 6-13 for two reasons.First, this age range marks a crucial phase in children's physical health and cognitive and social development, in which they transition from a predominantly family-centric life to one that includes more varied social environments, such as school and extracurricular activities [44,91].This is also the age group in which children are increasingly exposed to and become primary users of digital technologies like smartphones [86]-a transition that often brings a shift in disease management responsibility as children take on a more active role in their care [15,30].Second, this age group is particularly relevant to severe asthma and cystic fibrosis, as the chronic nature of these conditions means they significantly impact children's daily routines, social interactions, and emotional well-being during these formative years.
Given the age range of our young participants, we conducted the interviews in a family setting to create a comfortable environment for the children, who often depend heavily on their parents for health and well-being at this stage of life.To ensure we had an adult perspective during the interview process, we required at least one parent to be present during each interview.However, in some instances, both parents chose to participate, providing additional insights from their shared caregiving experiences.
As a result of this intensive recruitment process, the first author recruited and interviewed 32 participants from January-June 2023.These included 15 children and 17 parents from 15 distinct families.The child participants ranged from 6-13 years old.The parent participants comprised 12 mothers, two couples (both parents), and a grandmother who had assumed the parenting role (Table 1).The participants were free to select their preferred location for the interviews, such as in-person at their homes or clinics or via Zoom.However, given the prolonged duration of each clinical visit (2-3 hours) and the constant demands of family life, none of the families opted to hold interviews at the clinic.The families also declined in-home studies due to potential environmental risks to their children's health.Therefore, all interviews were conducted remotely via Zoom.Before each interview session, the first author sent the study information sheet and consent and assent forms to the families.Verbal consent and assent were also gathered before each interview.We adopted a semi-structured approach during the interviews with families to encourage candid responses and ensure comprehensive coverage of our areas of interest.In these conversations, we explored a range of topics, including daily routines, care practices, the use of technology for health and well-being, and the challenges and strategies involved in managing the children's health conditions.For instance, we probed with inquiries such as "Could you describe a typical day for you?" or "What are your usual routines for managing your health condition?"We also inquired about their learning process with questions like "How did you learn to manage your health condition?"and "What strategies or avenues have you pursued to seek support?"These inquiries helped us gain a comprehensive understanding of their lived experiences.We customized some questions specifically for the children and others for the parents.When interacting with the children, we carefully tailored our language to suit their comprehension levels.These interviews generally lasted between 50 and 80 minutes and were audio-recorded.Each family was compensated for their participation in our study with 50 US dollar.Our study obtained approval from our university's institutional review board.In consultation with the hospital's institutional review board, it was determined that no additional approval was necessary from the children's hospital.

Data Analysis
After interviewing the initial three families, the first author began data analysis, which continued alongside the remaining interviews over a 6-month data collection period.To aid in this process, qualitative memos were utilized, wherein notes were taken to capture analytical ideas, insights, and reflections that emerged throughout the interviews [21].Once data saturation-the point at which no new or relevant insights were generated-was achieved, the first and last authors implemented a two-stage qualitative analysis of the collected interview data.In the first stage, we followed the six-phase approach of reflexive thematic analysis proposed by Braun and Clarke [23,24]: familiarization, coding, generating initial themes, reviewing themes, defining and naming themes, and producing the report.The first and last authors thoroughly reviewed a subset of data for inductive analysis.During this phase, we highlighted the ecological nature of care for children living with severe chronic health conditions, forms of existing support systems, and resources.We observed how these systems and resources both aided families and inadvertently reinforced stigma across various levels (self, interpersonal, societal) of the child's healthcare journey.In the second stage, we adopted the ecological systems theory (EST) [26] as a theoretical framework to reassess the data in a deductive manner.The EST underscored the importance of considering the interactive effects of various social systems and the role these systems play in child development.This strategy facilitated our understanding of the stigma experienced by participants at different levels, and it allowed us to explore the relationship between participants and influential groups that potentially perpetuated this stigma.Furthermore, the adoption of the EST enabled us to holistically examine the complex interplay of individual, interpersonal, societal, and health systems contributing to the participants' experiences.Throughout this extensive coding process, the first author engaged in regular discussions with the last author, providing an opportunity for critical reflection and consensus on the emerging findings.

Limitations
This study had certain limitations, largely due to our selected recruitment methods, study procedures, and the unique challenges posed by our study population.Our recruitment was primarily undertaken at a pulmonary clinic housed within a large children's hospital in the United States.Consequently, several shared insights, particularly those related to the healthcare systems, insurance processes, and school systems, are intrinsically linked to the United States context.Therefore, the potential constraints must be realized when generalizing these findings to other geographical and socio-cultural contexts.
We also encountered challenges when attempting to recruit a balanced representation of patients with severe asthma and cystic fibrosis.Our participant pool comprised 12 families dealing with cystic fibrosis and only three with severe asthma.Some potential participants opted not to discuss their illness outside of clinical settings due to stress or busy family life, or to shield their young children from unnecessary discussions regarding their illness.Despite this imbalance, the experiences of stigma reported by both groups were similar due to the shared nature of their lung diseases.However, future research could delve further into how the experiences of stigma might vary between the two conditions.Finally, we conducted all interviews remotely, with parents and children participating jointly.While this method ensured comfort and safety-vital considerations given the children's age, susceptibility to lung infections, and potential allergens a researcher could inadvertently introduce-it curtailed our ability to discern nuanced interactions that may have been more evident in in-person interviews.Given that the interviews involved entire family units, insights were predominantly from parents, even though we tried to facilitate equal contributions from both parties.Despite our efforts to diminish parental influence while asking children questions, their presence could have unintentionally affected the children's responses, and vice versa.The majority of quotes chosen for this paper are primarily from parent participants, as they frequently serve as the primary users of many support systems, including peer support groups, online communities, and digital content, in the context of our study.

Author Positionality
The first and last authors possess extensive research experience conducting human-computer interaction studies in health contexts and with children.The first author has researched pulmonary conditions since 2019 after identifying a lack of computing research attention and services for this community.Their methodology involves co-constructing meaning with participants by integrating lived experiences as vital sources of knowledge.As academics without personal experience with severe lung diseases, the first and last authors recognize the limitations of an outsider perspective.However, if conducted collaboratively with care, they believe their training can provide useful knowledge to complement patient narratives.The first and last authors understand that health connects to wider ecologies, such as the complex interplay between medical care, individual lifestyles, family and cultural influences, and broader social determinants of health.They aim to learn from lived experiences when designing technology to support healthcare consumers.Their goal is to center research on participants' needs and values, acknowledging that technology alone cannot resolve all challenges and that, without thoughtful approaches, poorly designed systems risk unintended harm.
The second and third authors offer invaluable medical perspectives as practicing clinicians who actively treat pediatric patients daily.Their support was crucial for recruitment and allowed the first author to be embedded within the clinical environment for 6 months.Their clinical experience and advocacy for patients provided our research with important insights.Additionally, their established clinical relationships helped build crucial trust between our research team and participants.
Throughout our research, the team strived for transparency regarding our position while continuously reflecting on how to conduct this work ethically and respectfully.We hope that the relationship built through openness and care is apparent in this work so that the study is received as a testament to our commitment to justice, deeper understanding, and improved lives of those with severe chronic conditions like severe asthma and cystic fibrosis.We aim to continue building on the trust established to date to partner responsibly with these communities to drive positive change.

THEORETICAL FRAMEWORK: THE ECOLOGICAL SYSTEMS THEORY
We used the ecological systems theory (EST) to understand the production, effects, and strategies our participants employed to manage stigma.EST, a theory of child development introduced by Bronfenbrenner [26], examines how the environments surrounding children and the complex interplay of various interrelated systems influence their growth and development.At the theory's core is the individual, who is surrounded by layered and interconnected systems, including the microsystem, mesosystem, exosystem, macrosystem, and chronosystem.The microsystem represents the immediate environment, such as family members, teachers, peers, and healthcare providers, while the mesosystem refers to the connections between these microsystems.The exosystem comprises the broader social structures that indirectly influence an individual's life, such as a parent's workplace, the school system, neighbors, community organizations, and mass media.The macrosystem includes overarching cultural and dominant stories or beliefs.Last, the chronosystem signifies the influence of time, encompassing historical events and individual life transitions.The ecological systems theory has been employed as a theoretical framework to understand the opportunities and challenges of computing systems in supporting various areas, including mental health [90,130], fertility [50], asthma [65], autism [14], and media choices [67].Further, it is frequently used in research fields to ideate multi-level interventions [57].
In this work, we adapted the EST to place the family at the center, emphasizing the interdependence and emotional connections between family members as highlighted by the family system theory [25].By placing the family at the core, we acknowledge the vital role that family units play in shaping individual family members' experiences, particularly the development of children and the care they receive.With the family at the center, the interconnected systems of the EST, including the microsystem, mesosystem, exosystem, and macrosystem, surround and influence the family unit.This adaptation enabled us to examine the diverse forms of stigma experienced by children and their parents at different levels and investigate how existing digital (health) technologies contribute to stigma within and across these levels.Additionally, the approach allowed us to gain a deeper understanding of the challenges children and parents face, interrogate the current support systems, and rethink the design of future support systems that could empower children and parents to address stigma at the family and interconnected levels.

RESULTS
In this section, we offer an overview of participants' experiences living with serious chronic lung conditions and the existing support systems established for these families.We subsequently describe how these support mechanisms inadvertently function as external catalysts, intensifying the sense of stigma experienced by these families at each layer of EST.Finally, we delineate the strategies families employ to confront these support systems at each level.

Overview: Living with Serious Chronic Lung Conditions
The children and their caregivers found themselves in a relentless cycle in which the illness "never takes a day off, " as stated by Amelia's mother, a stay-at-home mom of an 8-year-old daughter with cystic fibrosis.This condition, along with severe asthma, is often diagnosed in infancy or early childhood and demands a strict regimen of care.This regimen includes administering daily homebased treatments, adherence to medication routines, and lifestyle management, such as controlled dietary habits, regulated physical activity, and careful consideration of environmental factors.Other challenges include the complexities of navigating sophisticated healthcare systems and insurance networks and the rapidly evolving digital technology landscape for health management.In addition, managing the complicated interpersonal relationships that form an intricate care team encompassing healthcare providers, peers, friends, family members, and others, is often demanding.Nonetheless, managing these relationships is essential, as it can significantly influence the child's access to appropriate healthcare, social integration, and ability to maintain a positive mental state.Moreover, there are invisible components of living with and caring for a serious, chronic illness, such as the emotional burden, the stress from managing the day-to-day logistics of living with serious illnesses, and the constant vigilance required to anticipate and respond to potential health crises, such as unplanned emergency room visits or sudden declines in lung function.This chronic and multifaceted burden can significantly impact both the child's and their parents' well-being, often leading to physical exhaustion and mental stress over time.The experience of Liam's dad illustrates the complexity of their lives, which extends beyond rigid daily medication protocols and home-based treatment routines: We take significantly more precautions than the average person, particularly when it comes to being around crowds.Sanitizing and wearing masks were part of our routine long before COVID.My wife and I are consistently cautious about cleanliness.It's become such a subconscious part of our lives that we do it without thinking.We have to pay close attention to his diet, to what and when he's eating, to his pills, and even to his bowel movements.When people are sick, we're hyper-aware because children with cystic fibrosis are prone to bacterial infections, which can easily lead to hospitalization.Sending him to school for the first time was a huge step for us; it was very stressful.So, all in all, our focus is always on his wellbeing.
In recognition of these challenges, various physical and digital support systems have been instituted to provide holistic care for these families.Some of these were formally established by dedicated professional teams, whose roles span from providing medical care to assisting with bureaucratic processes for seeking healthcare services.Simultaneously, other support structures have been informally organized by the families themselves or by parent associations and community groups.Through our research, we identified several forms of support systems all participating families had, interacted with, and benefited from at one point or another.Physically, there are close friends and family members, clinical teams, school systems, insurance systems, and in-person patient support groups.Digitally, with the advancement of consumer health technologies, the families had all interacted with digital support systems or had used digital resources to help them manage their illness.These digital systems include online resources that are specifically designed to provide health information to patients and families, various online health communities and social media groups, and diverse digital content, such as articles and videos, offering support channels that many families did not have prior to the wide adoption of digital health solutions.
By design, these physical and digital support systems aim to offer informational and emotional support and shared experiences, and they play an invaluable role in the day-to-day lives of families dealing with serious, chronic illnesses.They provide an ecosystem of care that helps to alleviate the strains and stresses of their daily battles and ensure the families are not alone in navigating the complexities of such life-altering conditions.Through their presence, these systems seek to create a more nurturing and manageable environment, thereby improving the overall quality of life for these children and their families.
However, despite the availability of numerous support systems, many of our participants exhibited a noticeable resistance to engaging with these resources.Some families proactively opted out of support systems explicitly designed for their benefit, such as patient support groups facilitated by hospitals or foundations, even before engaging with these systems.Meanwhile, others deliberately chose to limit their involvement or completely disengage from certain support systems over time, including online health communities and digital health information platforms.
The widespread doubt and rejection of patient support systems, whether professional or informal, physical or digital, underscores the emotional implications ingrained in accepting such support and, more importantly, the prevailing stigma tied to severe chronic illnesses that can be intensified by these systems.Stigma is a process that impacts an individual's social identity [55].The various components of stigmatization-labeling, stereotyping, separation, status loss, and discrimination-do not occur in isolation [77].Individuals who face stigma and those responsible for perpetuating it are linked through their shared local social networks [72], through which power dynamics come into play.Like many participants in our study, they initially found value in established support systems.However, they soon realized that these structures, while well-intentioned, unintentionally exacerbated their feelings of stigma.This regular intensification of stigmatization led to increased feelings of isolation and a heightened sense of "otherness" [112] when compared to their peers who did not have severe medical conditions.
In the following section, we employ EST as a theoretical framework to investigate how families confront stigma by interacting with various support systems across each layer.Additionally, we examine their strategies to alleviate and avoid these stigmatizing experiences.

The core of EST: The Individual Family
We first examine stigma at the core of EST: the individual family unit (child and parents).As mentioned previously, we adapted the EST to place the family at the center, emphasizing the interdependence and emotional connections between family members as highlighted by the family system theory [25].
6.2.1 Encountering Stigma at the Family Level.We observed that nearly all the participants encountered stigma in their everyday family lives.This was revealed most clearly when participants frequently used the word "normal" to describe their daily routines and lifestyles.The reference to normal not only underscored the ordinary expectations parents have for their child's life but also highlighted the unique challenges that the children experienced that rendered their lives different from "normal."For example, these children are especially vulnerable to lung infections and may require emergency care if exposed to sick individuals, smoke, or excessive dust.
Despite these challenges, families like Noah's and Hubert's continued to aspire toward a "normal" life, paralleling their peers.However, this pursuit of normalcy can, paradoxically, enhance the feeling of being stigmatized.By striving to fit into what is perceived as "normal," participants may begin to see themselves as "abnormal."This perception can foster feelings of self-pity and negatively impact their self-esteem.An example of this is seen in Zed, a 10-year-old living with cystic fibrosis: It [cystic fibrosis] bothers me because I'm always out there playing with my friends . . .when it turns 4:30 pm, and I must come in to do my [home-based] treatments, and then, 30 minutes later, my friends can't play anymore.I just cannot play as long as I wish because of it . . .Also, I remember one time, we were planning to go on a trip for my birthday, and I had a little sore throat.Then we couldn't go.Zed's narrative, which reflected his awareness of being different, his negative self-view, and its impact on his childhood, resonates with the experiences of many participants.Their health conditions imposed constraints that set them apart from their peers, fostering a sense of "otherness" [112].The participants accepted and embraced societal norms and expectations of an ordinary childhood-such as uninterrupted playtime and spontaneous trips-and when their health conditions prevented them from fulfilling these norms, they perceived themselves negatively.As they navigated their unique routines and care practices, parents and children with serious chronic illnesses were continually reminded of their conditions and the resulting deviation from societal norms.This constant awareness contributed to stigma, often leading to feelings of exclusion, frustration, and potentially lower self-worth.
Similarly, Lucas, an 11-year-old with cystic fibrosis, sometimes felt "normal, " only to be reminded of his condition when treatment time arrived.He said, "I forget I have it [cystic fibrosis] sometimes.And then when mom says, 'Hey, Lucas, it's treatment time,' I get a little bit sad."Like many other participants, Lucas seemed to believe that needing treatment was not "normal" or "average." The act of remembering his condition and the associated treatments triggered feelings of sadness, suggesting that he viewed the disease and its implications as negative or unwanted aspects of his identity.This might have contributed to his feelings of being different from his peers, which is an example of stigma.

Managing
Stigma at the Family Level.One common approach the participants adopted to manage stigma at the family level was to strive for normalcy in their daily lives.Many families emphasized their desire not to feel different from others, so they engaged in activities typical of other families.These activities included sending their children to a public K-12 school (which sometimes could pose more environmental risk due to the class size), participating in sports, or attending camps.Though initiating these activities could sometimes pose challenges to health management, they helped the families to feel less separated from their peers or discriminated against by societal norms.In essence, these practices enabled them to normalize their life experiences to some degree.For example, Lucas's mom showcased this sentiment: I was never overly strict about too many things.Some people won't let their kids go to a public pool or participate in certain activities, but I didn't want to limit him that way. . .I wanted him to live his life fully and not miss out on everything.Of course, we're always careful.For example, if he goes to a pool party, we ensure that he does his treatments when he comes home, takes a shower, and maintains extra cleanliness.It's about balancing normal activities with careful management of his condition.The strategy employed by Lucas's mom to manage stigma was adopted by numerous other families, such as those of Eva, Noah, Amelia, Oliver, and more.These families actively participated in activities typical of those not caring for children with similar conditions.They believed that such a way of life and mindset enabled both themselves and their children to experience a sense of normalcy.This active pursuit of normalcy serves as a powerful counterweight to stigma at the family level.
6.3 Microsystem: Interacting with Immediate Social Circles 6.3.1 Encountering Stigma at the Microsystem.In the microsystem of EST, our participants often encountered stigma through interactions within their immediate social circles.These circles often served as their immediate support systems and included close relatives, friends, and healthcare providers.
Many of the families credited relatives and close friends, such as grandparents or a child's aunt and uncle, as crucial elements of their children's support systems.These individuals are often intimately involved in the child's growth and learn about care routines step by step.Additionally, they sometimes went above and beyond their roles, carrying emergency medication, reminding children to take regular breaks during sports, or administering the children's medications when their parents were not present.
However, some parents reported that their children's health conditions strained their relationships with these relatives and close friends.Many times, serious lung diseases like cystic fibrosis and severe asthma are not easily seen.This can make people doubt or downplay the child's sickness, which means the child might not obtain the emotional and practical help they need.For instance, Lucas's mom shared how interactions with her extended family exacerbated the stigmatization associated with managing her son's condition: The strange thing with friends, and especially [extended] family, is that they often don't want to hear about it [severe lung conditions]. . . .For example, I occasionally post cystic fibrosis awareness material on social media, just to raise awareness.But what's interesting is that those closest to me often ignore the posts.It's like they don't acknowledge the issue.Talking to our family about it became so stressful for me and my husband that we decided not to let our son spend the night anywhere else to avoid the need for medication elsewhere.
I think our family and friends are scared, thinking he might pass away any day.It hurts them to think about it, so they avoid it.They pretend it doesn't exist because they do not live it daily. . . .The most hurtful thing came from my uncle.He claimed that we're only seeking attention, which is absurd.He came to this conclusion simply because my kid doesn't match the typical images of cystic fibrosis patients he found online that look really sick.The experience shared by Lucas's mom illuminates the subtle yet profound ways stigma can manifest within close social circles.In particular, the avoidance of dialogue around severe lung conditions and the lack of visible emotional support and proper recognition are passive yet powerful forms of stigma, as they symbolize subtle social distancing and separation.More damaging, however, are the active forms of stigma, as demonstrated by her uncle's accusations of attention-seeking.These allegations, based on superficial assessments of her child's physical appearance, constitute labeling and discrimination, a form of stigma by definition.The uncle, who possesses the advantage of not living with a severe chronic lung condition, exercises his power and privilege in a damaging way.This type of stigmatizing experience was not unique to Lucas's family but was shared by several other families in our study.These encounters, whether subtle or overt, contributed to the participants' feelings of labeling, separation, and discrimination, highlighting the pervasive power of stigma in shaping the experiences of families dealing with severe chronic lung conditions.
Many of our participants confronted stigma in their interactions with healthcare professionals in addition to their extended family and friends.The manifestation of this stigma is often subtle yet pervasive, making it difficult to escape.While healthcare providers may not have any malintent, their communication can unintentionally cause feelings of stigmatization among patients.For example, Oliver's dad shared his experience interacting with healthcare providers: Our previous pediatrician, who was trained in the '70s, called us and informed us that our baby has cystic fibrosis.He advised that one of us should quit our job to provide round-the-clock care.He also shared that the survival rate is up to the age of 5, which we later found out wasn't true at all.Receiving such heavy news while at work was a lot to digest.We didn't know then, but as far as I think now, diseases go, it's very positive and hopeful.We don't see how physically it's impacted his being active in any way.He's very active.He swims and plays soccer.My wife and I both continue to work full-time.But I'll never forget that conversation with our doctor; it was on a Friday, and it felt like the worst day of my life.Many families like Oliver's experience this form of stigma when interacting with healthcare providers at various stages of their illness journey.Healthcare providers, due to their professional role and medical knowledge, often possess inherent power and authority when interacting with patients.However, this power dynamic can inadvertently lead to stigma.In the case of Oliver's family, the pediatrician's inaccurate portrayal of cystic fibrosis not only labeled Oliver as a "dying" child but also stereotyped him as incapable of leading an active life.He separated Oliver from his peers by emphasizing the need for round-the-clock care.This suggestion also implicitly invoked the potential for a loss of status for the parents-who might have to give up their careers, a significant part of personal identity and social status for many.
In another instance of engaging with healthcare providers, before she discovered the specialized severe asthma clinic at our study site, Ethan's mom encountered a different type of stigma: Pediatric care around our area is kind of a headache.It's mostly for newborns, so before we found the [clinical] team at [research site], we were left with primary care for my son's asthma.Many times, his dad and I felt something more serious was happening.But they just wouldn't listen, you know?They'd send us home without running extra tests.I remember this one time; it took more than three weeks just to get his asthma under control after we got sent back home.They kept saying, 'Oh, it's just asthma, ' like they brushed us off.We didn't know what to do.Then we turned to [research site], and they confirmed his asthma was really severe.Ethan's mom tirelessly sought the right care for her son, only to face continuous dismissals from healthcare professionals.They frequently labeled Ethan's symptoms as "just asthma, " even when severe asthma can be a life-threatening condition that requires a different course of treatment and management.Her concerns were repeatedly overlooked and minimized.This worry about being perceived or labeled as "overreactive" ultimately led her to find a hospital specializing in asthma care.Once she did, her concerns were validated, and she finally felt heard.The recurrent invalidation and dismissiveness she encountered while seeking proper care for her son is an example of the stigma she faced.
6.3.2Managing stigma at the microsystem.We found that the families actively attempted to manage and avoid stigma at the microsystem level.A common strategy these families employed was to limit discussions about their illnesses, avoiding routinely referencing their conditions with their friends and relatives.For example, an exchange between Hubert and his mom exemplifies this approach: We did talk about cystic fibrosis, but we always kept it low-dramatic.We never focused on you having a potentially shorter life or being very different.Whenever grandma would sometimes ask if you had to take medication for the rest of your life, I would tell her to stop.There was never room for unnecessary drama at our table.Yes, cystic fibrosis is a condition, but you just live with it.It's like how some people are prone to anger, others to anxiety, and some to depression.It's just a thing, and we deal with it.I was strict about this, but I think it helped you feel free.Avoidance was a commonly used strategy to manage stigma.In fact, one family made a deliberate choice during the interview not to discuss the challenges they faced due to cystic fibrosis, potentially sidestepping feelings of stigma.This reluctance was also evident during recruitment, with some participants unwilling to discuss their conditions following clinical visits.Some of our participants chose to selectively disclose their severe chronic conditions only to close family members and friends.This decision often stemmed from a desire to avoid repeatedly explaining what it means to live with or care for severe lung conditions, particularly to individuals they did not consider close or essential.For instance, Lucas only disclosed he has cystic fibrosis to his closest friends: "The best of my friends know that I have it.With some of my other friends. . . .No. If they see me struggling to keep up with them or something, then I'll just say, 'Oh, it's because I have asthma, and I have a disease in my lungs.'" Lucas later explained that he chose this approach to avoid the need to explain to all his friends, an act that could intensify his feelings of stigma, separation, and fear of discrimination.This selective disclosure mirrors the experiences of many other participants, both children and parents alike.They often took on the educator role once they disclosed their condition.Benji's mom said, "I think I was definitely the educator in that sense.So our friends and family members know what to expect." This constant necessity to explain their unique needs and potential limitations led some families to adopt selective disclosure as a key strategy in managing stigma within their microsystems.
6.4 Exosystem: Interacting with Social Systems 6.4.1 Encountering Stigma at the Exosystem.In the exosystem of the EST, we found that the participants experienced stigma while interacting with various social structures, such as healthcare organizations, insurance companies, schools, and community organizations.This level of stigma also extended to their engagement with digital technologies and media platforms.
The daily life of children with severe chronic lung conditions like cystic fibrosis or severe asthma involves a heavy medication regimen.For our participants, this led to frequent interactions with insurance companies and the need to navigate complex policies to ensure their children's healthcare needs were covered.For instance, in the interview, Harper's family explained how they were forced into intricate dances with the systems-choosing to remain on Medicaid1 due to its streamlined medication coverage process while simultaneously having to monitor and limit their income to meet the program's requirements.The fear of dealing with "another 50 forms" deterred them from switching insurances when jobs changed.This experience resonated with many other families in similar circumstances.For example, Liam's mom stated: Dealing with insurance is by far the most challenging aspect.Every job change involves starting over with a new insurance company.Even as someone experienced in insurance matters, it's frustrating to explain our unique situation continually.The insurance system is ill-equipped for special conditions, with various medications covered differently, obtained from different places, and requiring authorization.Right now, for us, it's seven different medications coming from three different places.We can easily make 20 or 30 calls in a week, and we have to explain the situation over and over again because it's complicated, and there is no mechanism in place to keep somebody on our case.It's frustrating and time-consuming, and there have been instances where we've run out of medication because the process took so long.Moreover, the financial burden is significant, with high copays2 for each medication.Despite copay assistance, we still shoulder much of the cost and routinely hit our insurance cap.
The experiences of Harper's and Liam's families highlight a pervasive issue: many healthcare and health insurance systems in the United States fall short of adequately catering to patients with serious chronic health conditions.This systemic inadequacy unwittingly inflicts stigma on these families; they are labeled as "high demand" and "complex" due to their unique medical needs, creating the undesirable stereotype that they are burdensome.This stigma further alienates them from families with standard healthcare needs, enhancing feelings of separation.Moreover, the constant struggle for coverage and authorization translates into a loss of status, making them feel marginalized and powerless within the system.Even with copay assistance, the considerable financial demands often lead to indirect discrimination, as families are forced to make difficult financial choices that consequently affect their other life decisions.In summary, the healthcare and health insurance systems in the United States, despite their breadth, can sometimes fail to serve patients with serious chronic health conditions adequately, leading to a cycle of stigma, financial hardship, and emotional distress for these families.
In addition to the healthcare and insurance sectors, participants also encountered subtle yet persistent stigma in their interactions with schools, summer camps, and community organizations.For instance, Hubert's mom found herself immersed in a maze of administrative procedures every time her son required antibiotics or wished to participate in school or camp activities.These recurring tasks inadvertently amplified her identity as a "CF (cystic fibrosis) mom," resulting in feelings of separation and diminished status.
Schools can also serve as a challenging social context in which numerous child participants encountered stigma.For instance, the everyday struggle of Eva, a 13-year-old girl living with severe asthma, was not only limited to the physical symptoms and restrictions of her condition but also extended to handling bullying: Since I hit middle school, people started giving me a hard time about my [severe] asthma.They act like it's not real, like I'm just making it up to skip out on things like gym class or any sort of physical stuff, really.It got so bad last year that I couldn't handle going to school because I felt so down.These people have no idea what it's like to live with this, you know?It's been my battle my whole life.
In navigating middle school, Eva encountered stigmatization due to her severe asthma that took the form of bullying, whereby her peers dismissed her condition as an excuse to skip physical activities, such as gym class.This labeling, a critical component of stigma, was instrumental in creating a stereotype around her health condition.These stereotypes fostered a sense of separation between Eva and her peers at school, further reinforcing the stigmatization process, and the lack of understanding and empathy toward her condition only elevated this sense of isolation, resulting in a noticeable loss of status within her peer group.Further, the discrimination had detrimental effects on Eva's emotional well-being; the year before the interview, it became so overwhelming that she withdrew from school due to depression.The power dynamic inherent in stigmatization is clear here; the majority group, unaffected by severe asthma, used its collective influence to marginalize and devalue Eva based on her health condition.
The participants also experienced stigma in social systems specifically designed for them.Mason's experience provides a clear illustration of this dilemma: When a trip to the children's museum, organized and funded by the hospital for children with chronic illnesses, was offered, Mason was reluctant to participate.Fearful of potential contact with other children who also have cystic fibrosis and the associated risk of cross-infection, he chose to isolate himself as a protective measure.While the fear of cross-infection is a serious health concern for cystic fibrosis patients, Mason's decision highlights a deeper issue.These programs, although well-intentioned, professionally organized, and designed for children with chronic illnesses, inadvertently overlook the specific needs of cystic fibrosis patients (i.e., cystic fibrosis patients cannot physically be around other cystic fibrosis patients).By failing to account for the unique concerns of children with cystic fibrosis, such as the risk of cross-infection, the program unintentionally marginalized these children, further exacerbating the feelings of stigma.The intention to support and include the children only reminded them of their differences and reinforced their exclusion.
Another example is the in-person patient support groups organized by a major disease foundation specific to our study participants.Although these groups provide valuable resources and play a crucial role in fundraising activities and patient education, some families (like Hubert's, Zed's, Casey's, and Isabella's) perceive their association with patient support groups as a reminder of their "otherness," intensifying feelings of stigma.They feel alienated from their healthy peers and burdened by a constant reminder of their medical conditions.This experience could create a distressed environment, a shared sense of powerlessness, and a constant fear of the uncertain future, leading to a profound sense of loss of status.
In the realm of digital technology, our participants reported encountering persistent stigma.Most families had fully adopted digital platforms and technologies, such as online resources or health communities, to receive informational and emotional support.Despite acknowledging the clear benefits of these digital systems, however, the families reported facing both overt and subtle stigma while utilizing these digital systems to manage their health and well-being.For example, Hubert's mom recounted her experience using the internet for informational support: When you go online and watch videos, it can honestly be counterproductive.It left me feeling deeply depressed because the stories were often filled with panic, reporting the worst cases and being horrible for those living them. . . .I'm still scared-the fear of a lung transplant, diabetes, and many potential side effects.There was fear of spending half of our lives in a hospital or being torn apart as a family.That's the type of information you frequently encounter when seeking help on the internet.
Alexis's mom joined an online patient support group to seek informational and emotional support.While she recognized the considerable benefits the group offered, she concurrently experienced the subtle stigma that pervaded these interactions: I'm part of a [social media support] group; believe me, I've learned a lot from it.However, I reached a point where all the notifications from that page started feeling overwhelming.There's just so much to read, and we are desperate for a cure or helpful tips, so I always tried to consume more information.There were moments when I felt like it was taking control of my life.
In this case, the stigma arose from the constant reminder of the family's "difference" and the necessity to manage this chronic condition.Thus, the constant engagement with the online support group, in the pursuit of the latest research on cures or helpful tips, inadvertently enhanced the perception of their child as "sick," reinforcing their status as different from their "normal" or "healthy" peers.This enhanced perception can lead to a kind of status loss-a key element of stigma-in which the family might feel marginalized or less powerful within broader society because of the chronic condition.Moreover, the pressure to continually monitor with the group's updates can also be seen as a form of indirect discrimination, another component of stigma, as it nudged Alexis's mom to allocate significant time and emotional resources that might not be required for families without such serious chronic conditions.
The experiences shared by both Hubert's and Alexis's moms highlight that while digital support systems, such as online resources and online health communities, offer easy information access and peer support to manage children's serious illnesses, these resources are often designed for the general public or newly diagnosed patients to learn about the diseases.Thus, they do not acknowledge the long-lasting physical and emotional impacts that information may exert on those who live with these serious health conditions daily.As such, these resources, though designed to be useful, might inadvertently impose an unintentional stigma on these families.They subtly separate the families from their healthier peers, trigger a sense of lost status through the portrayal of worst-case scenarios, foster feelings of powerlessness, and label the children as "unwell" through constant nudges that repeatedly remind the families of the illness and known issues over which they have no control.6.4.2Managing stigma at the exosystem.When managing stigma in the exosystem, our participants actively worked to establish meaningful connections with the institutions with which they interacted, such as schools and churches.By fostering an environment of understanding and awareness about the specific needs and potential limitations of their children, they could significantly reduce feelings of stigmatization.Liam's family, for example, cultivated a strong connection with the school system, which was instrumental in minimizing potential stigma: [We] already have a good relationship with the school because his older brother made the transition easier for Liam.The vice principal was his kindergarten teacher, so they know his condition well.We make sure to have good communication with the teachers over the years, and the district nurse is very educated and informed about his needs.We consider ourselves lucky in this regard.This proactive approach taken by Liam's parents ensured the school staff's understanding of Liam's condition, mitigating any potential discrimination and separation that may have arisen from his limitations during sports or other school activities.However, not every family can establish such connections and subsequently explores alternative strategies.For example, to maintain greater control and better shield their children from potential health risks and stigma, Isabella's mother chose to homeschool, and Amelia's mother enrolled her child in a smaller private school.
Beyond the school setting, children frequently engage in other social structures, such as churches or summer camps.Families often undertake additional preventive measures in these environments to ensure their children's safety and inclusion.For example, Mason's grandmother took the initiative to keep open and detailed communication with every program Mason joined-whether calling and meeting the camp coordinators to ensure they were prepared for any potential health emergencies or maintaining a dialogue with and leaving a note for his after-school program to ensure he has the necessary accommodations.This diligent communication had twofold benefits: it not only educated the program staff about Mason's specific needs related to cystic fibrosis but also made them aware of his potential limitations.This transparency can help mitigate any potential discrimination arising from ignorance or misunderstanding.By fostering understanding and awareness in these social systems, families can help their children navigate these spaces with fewer encounters of stigma, enabling them to participate more freely in the activities that are an integral part of their growth and social development.
Some of the families actively resisted engagement with support systems specifically designed for them as a strategy to manage stigma within the exosystem.Hubert's mom exemplifies this strategy of resistance; rather than accepting the hospital's offer to join an in-person support group for parents with cystic fibrosis children, she chose to protect her family from the potentially stigmatizing environment: The hospital offered us the chance to join communities of parents with cystic fibrosis children, organized by [a disease-specific foundation].But I didn't want that.I had no desire to commiserate or to dwell on our misery.I wanted us to follow our own journey. . . .Mentally, we each create our own realities, and I think we grieved a lot then over our powerlessness and our inability to change reality.I didn't want to dwell on it with other moms; I didn't want to add to the panic energy among parents already in distress.We were deep in the mud, uncertain about the future, even fearing that one of us might have to stop working or that we'd have to sell our house because it was too expensive.All these existential concerns were overwhelming.We were neither ready to help others nor to receive help.We simply didn't feel the need to be there.This sentiment underlines an emotional capacity that was already stretched thin, leaving little room to carry the weight of others' anxieties or to process additional sources of distress.These support groups, designed with good intentions and helpful to some, could become a continuous reinforcement of the severity and harsh realities of the families' situation, from which Hubert's mom desperately wanted to shield her family.
The resistance to designated support systems was not only limited to in-person encounters but also extended to the digital realm.All the families we interviewed utilized digital technologies at some point for information-seeking or emotional support, and while these platforms offer numerous benefits, they can also inadvertently contribute to an intensified stigma.They amplify feelings of separation from healthy peers by serving as constant reminders of the medical condition families face, which is emotionally distressing for those involved.For example, Zed's mom narrated her engagement with these digitalized support systems: I am still in these groups, but I'm not active [in participating].There were a lot of heavy conversations, and it can be very overwhelming and scary at times.To be perfectly honest, I think I need to be involved, aware, and educated, but I also can't be entirely consumed by it.These tools can take you to another place.Not a good place.But honestly, if something comes up, it's one of the first places I'll go.You can get a whole lot of different answers and opinions that can be very relevant.
These experiences echo the sentiments of nearly all the families in our study.Their decisions to resist and selectively engage with these designated support systems emerged as a crucial strategy for managing stigma within the exosystem.This resistive or selective engagement is a strategic process of choosing when, where, and how much to engage in these digital spaces based on emotional needs and the perceived value of the information or support available.By limiting their involvement in these spaces, the families could mitigate the emotional distress, the feeling of separation, and the potential discrimination they might otherwise face, thereby maintaining a sense of normalcy and status.
6.5 Macrosystem: Dealing with Dominant Stories and Belief 6.5.1 Encountering Stigma at the Macrosystem.We also identified instances of stigma experienced by some participants at the macrosystem level of the EST.This stigma often originates from prevailing societal narratives or beliefs and becomes deeply ingrained in people's memories.These instances of stigma are typically passive, persistently affecting individuals, often without their conscious realization.An example comes from Mason's grandmother, who depicted how a deeply rooted societal narrative about cystic fibrosis continued to impact her: Even before Mason was born, I knew a little about cystic fibrosis, mainly because I heard of people having it through a story.I was really scared.I remembered this family with four kids, all of whom had it.I'm pretty sure either the oldest one or the two oldest ones had already passed away, and they were very young.
Stigma manifests through societal narratives and perceptions about severe lung diseases, many of which are rooted in outdated information and fueled by fear, sadness, and the notion of inevitable fatal outcomes.The heart-wrenching story of a family losing young children to the illness, as remembered by Mason's grandmother, underscores the "separation" created between those with and without severe lung conditions that fosters fear and misunderstanding.This perspective, though anchored in the harsh realities of the past, fails to recognize the significant advancements in medication and care that have considerably improved life expectancy and quality of life for those with severe lung disease today.
Moreover, the pervasive nature of digital technology means that these negative societal beliefs are not confined to an individual's immediate environment but are broadcast globally, amplifying their impact.For instance, many participants found that their attempts to seek support online often led to more distress than relief.When they searched for health-related information or engaged in online group discussions, they frequently stumbled upon worst-case scenarios and tragic stories, while positive, hopeful, or joyful narratives were few.These digital contents and discussions mirror societal beliefs and tend to focus on and amplify negative news.This skewed representation can add to the sense of doom, causing further emotional distress and feelings of isolation.6.5.2Managing stigma at the Macrosystem.Finally, the participants shared how they attempted to manage stigma at the macrosystem level.This involves addressing societal narratives and dominant beliefs, which often represent the most challenging aspects of stigma management, as discussions revolving around health conditions, specific needs, and limitations can intensify feelings of stigma.In response, some participants adopted a strategy of discretion when discussing their conditions with the wider public, effectively lessening potential stigmatization.This was evident in how Hubert's mom handles her son's health condition; she chose to be selective about sharing information regarding her son's health, minimizing the potential for misconceptions or negative judgments and thereby lessening the chances of experiencing stigma: When people learn about his cystic fibrosis, they can become uncomfortable.Everyone who knows someone with cystic fibrosis usually knows some distressing stories, like the early mortality rate, and they start looking at him with pity.To me, normalcy means being respected.We want a normal, beautiful, happy, good, and amazing life with ups and downs.If people continuously look at you with pity and a "poor you" attitude, thinking you're going to die before you're 20, your mind begins to adapt to that narrative.You start thinking of yourself as a victim deserving of pity.We don't want that for him or us.
Her strategy aimed to prevent the triggering of preconceived and often negative assumptions about the disease within broader societal contexts.Participants like Hubert's mom can exert some control over the societal narratives surrounding their condition by withholding the information they share with certain people, thereby challenging the stigmatization that such narratives can often perpetuate.
Digitally, to manage stigma perpetrated by societal narratives and dominant beliefs, some participants adopted strategies of discretion and selective engagement.Similar to their real-world tactics, this involved deliberate choices about the online platforms with which they engaged and the information they consumed.For example, after joining an online support group and becoming overwhelmed by the overflowing distressing narratives and lack of hopeful stories, Alexis's mom decided to reduce her involvement.This reaction was not unique; many parents, including Amelia's, Eva's, Ethan's, Casey's, and Benji's, turned away from seeking health-related information or exploring new digital platforms for the same reasons.The overwhelmingly negative narratives often encountered online discouraged them from engaging more deeply or at all.By limiting their exposure to these negative societal narratives permeating the digital environment, the families found a way to reduce their emotional distress and lessen the risk of digital stigmatization.

DISCUSSION
Based upon our findings, we first discuss using an interactionist approach to understand stigma production and management in this section.Subsequently, we elucidate the unintended consequences of health technology and service design and discuss patient work to manage stigma.Finally, we provide implications for a more empathic design of support systems.
Despite these notable efforts, the perspective from which stigma is viewed and discussed within HCI and CSCW studies tends to be static.It is often considered an attribute tied to a specific health area (e.g., women's health, LGBTQIA+ health, mental health), identity (e.g., LGBTQIA+, social class), sensitive or traumatic experience (e.g., pregnancy loss, gender-based violence), or certain sociotechnical systems (e.g., social media, self-tracking applications, aging-in-place technology).While these perspectives are valuable, they typically depict stigma as a static attribute, failing to acknowledge its dynamic and interactive nature, a fundamental element of stigma that our work aims to emphasize.
Our research contributes to the HCI and CSCW fields by holistically examining stigma as a dynamic social process, utilizing an interactionist approach.The interactionist sociology perspective emphasizes that social reality is constructed through human interaction and social processes [22].As mentioned previously, we largely based our understanding of stigma on Erving Goffman, a renowned interactionist.He proposed that stigmas are not inherent traits of a person or a condition but rather products of social interactions and the meanings these interactions generate [55].Thus, stigma is frequently embedded within social interactions, influencing and being influenced by numerous components, such as labeling, stereotyping, separation, status loss, and discrimination [72,77].
Goffman underscored the dynamic nature of stigma, which has often been overlooked in previous HCI and CSCW work.
Shifting from the view of stigma as an intrinsic attribute, we examine "stigma in action," in which stigma was produced in various social interactions in the participants' everyday experiences.Through the lens of EST, we identified how stigma was produced at different layers of these interactions.Specifically, at the interpersonal level, close relationships with relatives, close friends, and healthcare professionals offered critical support to the family living with serious health conditions.However, their support could also act as a source of stigma, depending on their level of understanding and empathy.For example, failing to acknowledge these health conditions could lead to families' feeling isolated, whereas overly emphasizing the conditions could serve as a reminder of their illness, thereby exacerbating the associated stigma and feelings of separation.This situation can further be worsened by misinformation and disbelief.Similarly, interactions with social systems, such as insurance providers, healthcare systems, schools, and digital platforms within the broader social ecosystem, led to various stigmatized experiences.For instance, bureaucratic hurdles with insurance providers or a lack of understanding among educators and peers resulted in feelings of marginalization or exclusion.Despite offering potential sources of support, community organizations and digital social spaces could inadvertently intensify stigma due to prevalent misinformation, stereotypes, or the impersonal nature of interactions.Similarly, patient support groups could unintentionally reinforce stigma due to a lack of nuanced understanding of these families' unique needs and experiences or could overly expose them to repeated messages of other patient information reminding them of their sickness.At the societal level, dominant, extreme narratives or misconceptions about chronic illnesses like cystic fibrosis and severe asthma circulated and often became embedded in the participant's memories, further perpetuating stigma.Such narratives could misrepresent the reality of living with these conditions, leading to harmful stereotypes and amplifying feelings of stigmatization.These narratives can also inadvertently inform the development of support systems and technologies and result in designs that perpetuate these stereotypes rather than addressing the authentic needs and experiences of the families living with these conditions.This interactionist approach to stigma helped us uncover its roots.In our case, we found that stigma is not merely a static attribute inherently tied to specific health conditions but rather was a dynamic product of interactions between our participants and individuals, social systems, and societal norms.It considers the ways these conditions are perceived, discussed, and dealt with by others.Stigma, therefore, is not an intrinsic marker but is constructed through these moments of interaction, which form the tangled roots of stigma.They are the whispered conversations at gym class, the lingering gazes from other parents at birthday celebrations, and the caring yet misguided reminders from loving grandmothers.They are the nudges of well-intentioned health applications or discussions on social platforms and the never-ending bureaucratic barriers to proper care.Recognizing these interactions as the roots of stigma provides valuable insights into how they might be mitigated, thereby reducing the stigmatizing impact.This dynamic approach to understanding stigma not only applies to severe asthma and cystic fibrosis but also has broader implications for other health conditions, identities, or experiences where stigma might emerge.Embracing such a dynamic analysis of stigma and stigmatized groups can provide a richer understanding of their experiences, potentially leading to more effective interventions.We advocate this interactionist approach as a critical first step toward effectively addressing stigma in HCI and CSCW research.

Stigma as an Unintended Consequence of Well-intentioned Design
Stigma is a "persistent predicament" [77], inseparably attached to the lives of families living with serious chronic illnesses.We observed an unexpected paradox: some well-intentioned designs meant to provide support and alleviate health-related stigma can instead inadvertently amplify it.Our study discovered that stigma could surface as an unintended byproduct of well-meaning physical and digital support systems.The support systems we refer to here encompass physical support, such as in-person parental support organized by disease foundations and social events organized by hospitals for children with chronic illnesses, as well as digital support, including online health communities, social media groups, and targeted digital content for our study participants.
These well-intentioned support systems, which were specifically designed for our participants, can foster a secondary layer of stigma in numerous ways due to the complexity and sensitivity of handling stigmatized conditions.For instance, the families perceived their association with patient support groups as a persistent reminder of their illnesses and "otherness."This only served to intensify the feelings of separation and powerlessness they experienced as part of their stigmatized conditions.Thus, these well-intentioned designs created a secondary layer of stigma.This dilemma is further compounded in the realm of digital technology: While online resources and health communities are designed to provide informational and emotional support, they can also serve as constant reminders of the patients' conditions, contributing to an undercurrent of subtle stigma.Families navigating these digital platforms often encounter hopeless narratives and worst-case scenarios that can trigger or amplify their existing fears and anxieties.This creates an environment of distress, which intensifies their feelings of marginalization and can lead to a profound sense of status loss.In the pursuit of information and support, they find themselves constantly reminded of their "sickness, " which reinforces their status as different from their "normal" or "healthy" peers.The pressure to continually monitor updates and the repeated exposure to alarming information can be seen as a form of indirect discrimination, another component of stigma.Thus, these well-intentioned digital support systems, in addition to the primary stigma of their conditions, inadvertently impose an unintentional, but no less damaging, secondary layer of stigma on these families.
"Unintended consequences" in HCI and CSCW literature refer to unexpected outcomes emerging from the deployment and use of technology systems [43,93,96].These consequences can be positive, neutral, or negative and may range from physical harm and social anxiety [93] to limiting access to support for platform users [106].With increasing attention given to research ethics [96], the HCI and CSCW communities are actively exploring strategies to mitigate the unintended, often negative, impacts of well-intentioned design [43].We propose "compounded stigmatization" as a new form of unintended consequences, distinguishing itself from other types in several ways.First, it manifests from well-intentioned systems specifically designed to offer support and yet perpetuates stigma, thus exhibiting a paradoxical outcome.Second, the compounding effect implies cumulative harm, where the second layer of stigma adds to the initial layer already associated with the stigmatized condition, thereby exacerbating the overall negative impact.This layered harm creates a unique situation in which the individuals not only have to navigate the inherent stigma associated with their condition but also must deal with the added stigma inadvertently imposed by the systems designed to support them.

The Work of Managing Stigma
Stigma consistently overshadows individuals and families dealing with serious chronic illnesses, creating a burden that extends beyond managing the conditions.Well-meaning support systems, paradoxically, often exacerbate the stigma, thereby inadvertently introducing an additional layer of stigmatization.This puts extra "work" on the affected individuals and families, as they must manage not only the stigma tied to their illness but also this secondary layer of stigma originating from the systems intended to support them.
In our study, we observed that families conducted multiple forms of work to manage both layers of stigma.A common type of work was the active pursuit of normalcy, wherein the families made conscious, and sometimes militant, efforts to participate in ordinary family activities, such as sports or social events.Despite often presenting additional challenges to managing their health, these activities foster a sense of normalcy that helps counteract feelings of stigmatization and otherness.Another type of work is careful management of conversations about their conditions.Many families selectively share information, even refusing to share certain aspects with some friends and relatives, to avoid constant reminders of their health challenges or limitations and maintain control over their narratives.Additionally, stigma management can involve proactive relationship-building with institutions with which the family frequently interacts, such as schools and churches.Participants often extend their efforts beyond the norm, engaging substantially to ensure these institutions understand their unique needs and limitations.The work to manage stigma also extends to resisting and managing engagement with specific support systems, such as online health communities or peer support groups, which they sometimes view as stigmatizing reminders of their differences.Finally, on a broader societal level, managing stigma involves the complex work of navigating and subtly influencing societal narratives and beliefs associated with their conditions.By withholding their illness condition in some public discussions or mindfully managing engagement with digital systems and contents, they can shape or shield, to a certain degree, societal perceptions surrounding their condition.This control over their public identity helps mitigate the potential for stigmatization fueled by dominant societal narratives and beliefs in both the physical and digital realms.
The concept of patient work has been widely studied within the fields of HCI and CSCW and typically includes self-care tasks, navigating health information and clinical treatment procedures, and aligning and repairing fragmented healthcare infrastructure, which often encompasses the interactions between patients, caregivers, and the healthcare system [58,69,71,99,122].Our study expands this concept of patient work by introducing the notion of "stigma work, " which we define as the continuous and active strategies and processes individuals or families employ to manage, navigate, or resist the stigma attached to their health conditions.In the context of our study, stigma work is primarily undertaken by families living with serious chronic lung conditions.The goal of stigma work is to foster a sense of normalcy, enhance understanding, limit interactions that induce stigma, and challenge broader societal narratives that contribute to stigmatization.Stigma work is different from other forms of patient work.First, it specifically aims to mitigate the social, emotional, and psychological effects of stigma.Unlike typical patient work, which often focuses on managing the physical or logistical challenges of illness, stigma work is centered around navigating societal perceptions and personal feelings associated with chronic conditions.It seeks to combat the isolation, fear, and misconceptions that are often tethered to chronic illnesses.Second, stigma work extends beyond the individual and the healthcare system to involve interactions with broader social systems and digital spaces.While traditional patient work often revolves around managing medical regimens and interacting with healthcare providers, stigma work requires engagement with diverse social networks and communities, both offline and online.This entails dealing with varied societal narratives and challenging the stereotypes perpetuated in personal interactions and wider digital forums.Third, stigma work requires a proactive, strategic approach in which families continually adapt their actions and behaviors to respond to changing environments and societal attitudes.Rather than being a static set of tasks, stigma work is dynamic, adjusting to changes in the individual's health condition, shifts in public understanding of the illness, and evolving social dynamics within personal networks.Last, stigma work is often invisible and unacknowledged, which adds a layer of complexity to its execution.As it involves managing perceptions and challenging intangible social biases, its outcomes may not be immediately visible or measurable.This often leads to a lack of recognition and understanding of the efforts made by those carrying out stigma work.
We advocate for viewing stigma work not merely as a neutral or negative aspect but also as a positive one.Interpreting it neutrally may undermine its significance, suggesting that patient efforts to manage stigma are not vital to address to improve quality of life.Conversely, a negative perspective can overly highlight the hopeless picture and overlook the resilience and strategic workarounds of families employed in living with stigma.Though the unintended negative consequences must be acknowledged, overly emphasizing them could be too passive for meaningful reflection and design improvement.By viewing stigma work in a positive light, the agency of individuals and their active engagement in managing their situations are acknowledged.This shift in perspective also empowers these individuals, recognizing their proactive actions and resourcefulness.Once made visible, their existing strategies can serve as rich sources of insight for reflection and inspire new, empathic designs in supportive systems.These could better align with the needs and experiences of those stigmatized families, ultimately facilitating rather than hindering their stigma work.

DESIGN IMPLICATIONS FOR MORE EMPATHETIC SUPPORT SYSTEMS
Drawing upon our research findings, we present three design implications in this section.These are intended not only to potentially mitigate the unintended stigma that arises from well-intentioned support systems but also to acknowledge families' existing strategies for managing stigma.
Empowering families to define and establish their sense of "normalcy."Living with serious chronic lung conditions, such as cystic fibrosis or severe asthma, presents a relentless reality for children and their caregivers, one in which the illness "never takes a day off." This constant engagement with illness can blur the lines between the family's "normal" and the common perception of normalcy.Unintended intensification of stigma from certain well-intentioned support systems further reminds the families of the societal norm to which they often struggle to conform.Therefore, designing support systems that recognize and validate their unique realities is vital for helping them cultivate a sense of normalcy amid their health challenges.
First, support systems should incorporate elements that allow families to disconnect momentarily from their health-related concerns.Digital platforms, for instance, could introduce features that temporarily mute health reminders while also highlighting non-health-related activities.Similarly, physical support groups could include non-health-centric activities in their programs, providing an enjoyable respite without undermining care routines.Second, focusing on the positive aspects of these families' lives is crucial.System designs should celebrate small victories, thereby fostering a sense of positivity amid daily struggles.This could be achieved digitally through uplifting content and affirmations and physically by encouraging positive discussions beyond the health condition's constraints.Last, offering platforms for families to share their experiences and perspectives is essential.Digital interfaces could encourage user-generated content showcasing daily routines, accomplishments, and ways of living with the condition, thereby normalizing these individual's experiences within the wider community.
Facilitating families' agency in choosing the type and timing of support.Living with severe chronic conditions often demands multifaceted support.However, the needs of families and patients are fluid, varying across times and situations.Providing support should not be everything, everywhere, all at once.Instead, support systems should be designed to allow users to determine the type, intensity, and timing of support they receive.
First, digital platforms could employ an opt-in system for sharing and viewing detailed health information, ensuring that recipients are ready and willing to receive such sensitive information.This helps protect individuals from unwanted or unexpected exposure to distressing content and simultaneously gives families control over who knows what and when.Second, the range of provided support should be diversified to accommodate both informational and emotional needs in physical and digital support systems.For instance, some spaces should be dedicated solely for exchanging practical knowledge or tips about managing the condition, while others can be safe places for sharing emotionally charged experiences.This caters to different needs at different times.Third, users should be allowed to choose the source of their support, whether from close friends and family or a broader community, including other individuals living with the same condition.Some users may feel more comfortable sharing and receiving support within a tight-knit circle of trusted individuals, while others may find comfort in the shared experiences of a larger community.
Cultivating a broader environment filled with hope and joy.When coping with serious chronic illnesses, individuals and families are often overwhelmed by worst-case scenarios, tragic narratives, or distressing statistical data encountered in physical and digital environments.These narratives, while important, can create an overwhelmingly negative space for families dealing with these conditions, specifically in the exosystem and macrosystem.Therefore, counterbalancing these with narratives that inspire hope and share joy is crucial.
First, digital platforms can actively promote sharing positive experiences and successful management strategies.For instance, system design can prioritize and highlight stories of hope and joy, ensuring these narratives are easily accessible and visible to users.This also applies to physical spaces, such as hospitals or support group meetings, where success stories are showcased and promoted.Second, features or activities that encourage sharing personal victories and resilience strategies should be designed to foster a sense of community-level joy.For example, in physical support group settings, sessions could be organized around themes of overcoming adversity and showcasing strength rather than focusing solely on challenges and hardships.Last, digital content, such as various forms of media, as a key influencer of societal narratives, can play a substantial role.Encouraging the media to highlight stories of hope and joy can help shift the broader societal narrative.This, however, requires a concerted effort from advocacy groups, healthcare providers, and individuals to provide the media with such stories and encourage their widespread dissemination.

CONCLUSION
In this paper, we present a comprehensive exploration of the experiences of families who are currently living with and caring for children with serious chronic health conditions.Our analysis focuses on understanding how stigma arises in interactions and uncovering various strategies employed by these families to manage stigma in their everyday lives.Our findings elucidate how interactions can generate different forms of stigma, and they show that even well-intentioned support systems can inadvertently create an additional layer of stigma for stigmatized groups.These findings inspired us to advocate for an interactionist perspective when addressing stigma in the fields of CSCW and HCI.Moreover, we underscore families' remarkable but often invisible work in managing stigma.Building upon these insights, we propose design principles to guide the development of more empathetic support systems that attend to stigmatized health conditions, identities, and experiences.

Table 1 .
Summary of study participants