Creating Safe Places: Understanding the Lived Experiences of Families Managing Cystic Fibrosis in Young Children

While previous HCI research has examined chronic care management for children, less is known about supporting families with young children facing serious illnesses. We interviewed 12 families affected by cystic fibrosis (CF) to understand their experiences and explore opportunities to support CF management. We identified three stages of CF management in young children: diagnosis at birth, parental navigation of CF management in the early years, and gradual involvement of children in their CF care. We underscore child development milestones as a key macro-temporal structure in children’s health management, the multifaceted and evolving parental values in crafting a safe place for children, and the balancing acts parents conduct to recreate this safe place as their children grow. We provide design implications to inform the future of child-centered and family-oriented health technologies that can evolve with parents’ and children’s values to assist in creating a safe environment for managing children’s health.


INTRODUCTION
Families caring for children with serious chronic conditions persistently grapple with complex health management demands and profound emotional challenges.These conditions, including cancer, cystic fbrosis, and severe asthma, persist throughout childhood, carry elevated mortality risks, and disrupt families' routines and quality of life [49,144].These illnesses often require intensive, continuous health management, such as medication adherence and care coordination [31,67].As a result, parents face multifaceted responsibilities, from ensuring rich childhood experiences to supervising intricate health protocols [45,52].These compounded demands can increase stress, spark family conficts, and raise burnout risks [22,49,103].
Past HCI research has studied how families care for children with serious chronic illnesses.However, much of this work has focused on specifc age groups: primarily infants [50,71,140] or teenagers [1,56,57].Additionally, most studies have focused on parents' perspectives without considering the experiences of the children [61,65,116,130].Emerging HCI research examines families' navigating the children's transitions through developmental stages with chronic illness, focusing solely on the transition from adolescent to adult care [7,62,160].Consequently, there is a lack of understanding of the parent-child dynamics in managing chronic illness in young children, as well as the knowledge about the transitions throughout the developmental changes occurring in this age range.To address this gap, our study seeks to understand the unique experiences of families caring for young children with chronic illness, capturing both parents' and children's insights and perspectives.
We conducted a study on families caring for young children (ages 6-13) diagnosed with cystic fbrosis (CF).We chose CF for two key reasons.First, CF, a genetic disorder, is often diagnosed at birth [37].This early diagnosis ofers a lens into the evolving parent-child dynamics of illness management and enables an understanding of the shifting roles and responsibilities as the child matures from infant to early adolescence.Second, CF is a progressive chronic condition that demands not only a complex daily treatment regimen [39] but also preventive measures in daily living, such as maintaining cleanliness, avoiding germ exposure, and adhering to a nutritious diet.As such, CF often requires parents to create their own management strategies and readjust these strategies as children become involved in CF management.This presents a pivotal opportunity to study.
We conducted semi-structured interviews with 26 participants from 12 families afected by CF.In this paper, we describe the emotional journey and experiences of parents caring for CF.This begins with the initial shock, confusion, and grief upon receiving a CF diagnosis at their child's birth, followed by an extended phase of exploration.Spanning months to years, this phase involves parents dedicating themselves to their children's CF care and striving to provide the safest and best care possible.Parents then transition to a phase in which they begin cautiously and gradually to inform and involve children in their CF management.As families pass through these phases, the parents continuously strive to construct a "safe place" that attends to both their children's physical health and emotional well-being.This involves rigorously adhering to medical guidelines while also creating customized daily health management strategies tailored to their personal situations and values.Our study provides three considerations for the design of child-centered and family-oriented health management technologies.First, we discuss the importance of child development milestones as a macrotemporal structure in managing CF and designing technologies for children's chronic care management.We then delve into the multifaceted and ever-changing values parents hold in creating a safe place for their children, highlighting the importance of recognizing how parents' values shape their everyday decisions about children's health management.Third, we discuss how parents carefully and gradually involve their young children in discussing and managing a serious and distressing condition like CF.It is essential to design a safe place that addresses both parents' safety concerns and their aspiration to empower children with the skills and knowledge for CF management.
This paper makes four contributions to the HCI and health communities: 1) We provide an in-depth description of the lived experiences of families managing CF from infancy to early adolescence; 2) We highlight key child development milestones as pivotal macrotemporal factors for future research in studying and designing to support children's health management; 3) We emphasize the role of personal values, particularly parental values, in shaping these families' lived experiences of chronic care management and discuss how technology should acknowledge and adapt to a family's diverse and changing values; 4) We ofer insights into the initial involvement of young children as they transition from total dependence on parents to gradual engagement in discussing and managing a complex, life-limiting condition.We outline design considerations for supporting and balancing parents' needs in maintaining safety and preparing children for independence.

BACKGROUND: CYSTIC FIBROSIS -A LIFE-LIMITING CHRONIC LUNG DISEASE
This paper is situated in the context of pediatric CF, a progressive genetic disorder evident from birth that afects over 70,000 individuals globally [39].Since the 2007 newborn screening policies were instituted in the US, CF has been diagnosed at birth or soon after [37].CF is characterized by its progressive nature, meaning that it tends to worsen over time.It disrupts mucus production and clearance and can lead to severe irreversible damage to the lungs, pancreas, digestive system, and other vital organs in the body [39].The clinical manifestation of CF is multifaceted, with variability in symptoms and treatment necessities infuenced by factors such as gene variants.Not all children from the same parents will manifest CF; some may only be carriers of the CF gene without developing the condition [39].
Managing CF from birth demands a comprehensive daily routine that can last 2-3 hours for patients and their families [87,126].This regimen involves taking multiple medications in both pill form and through inhalation from nebulizers.Additionally, many children require an extra pill with each meal.A central component of homebased management is the vest treatment-a therapeutic machine used in the morning and evening.Beyond medication, lifestyle choices, diet, physical activity, and environmental factors, such as the cleanliness of the living space, play a crucial role in infuencing overall health outcomes.
Cystic fbrosis has historically been viewed as a childhood disease with a life expectancy of only into school-age years.However, recent genetic medicine breakthroughs have dramatically transformed CF patients' prognosis.Whereas the median life expectancy was around 35 years merely a decade ago, this expectation has recently improved remarkably, to nearly 50 years [39,87].Nevertheless, CF remains a severe, progressive condition requiring intensive daily management from families to extend longevity.

RELATED WORK 3.1 Complexities in Managing Chronic Illnesses
Patients with chronic illnesses routinely face intricate challenges.They are immersed in the complexities of their disease, facing highstakes decisions in clinical environments [24,107,109], navigating the convoluted healthcare and insurance systems [66,92], and communicating with various healthcare providers [30,100,128].This complexity is further heightened in their day-to-day home management.They must monitor symptoms [9,21,108,129], adhere to medication schedules [23,98,120], and adapt their lifestyles accordingly [63,118,152].Even routine activities like grocery shopping, cooking, exercising, and socializing may need re-evaluation and alteration.Furthermore, patients are tasked with processing the psychological and emotional toll of their diagnosis [5,60] and adjusting their identity and future expectations [81,83].The learning curve is steep as patients work to become experts in their illnesses.From medical terminology to treatment options, disease progression to symptom management, patients must immerse themselves in an exhaustive education [61,114].
Navigating chronic illness's intricacies requires more than managing the logistical and emotional challenges.Central to this journey is the constant juggling of the disease's rigorous demands while aspiring to maintain some normalcy [81,117,161].Thus, patients must constantly negotiate between the strict regimens or limitations imposed by the illness and their desire to live a life that closely resembles the one they had before the diagnosis or that of their healthy peers.Often, personal or patient values, defned as "what is most important to well-being and health," [80] become the guiding star in navigating these complexities of chronic illness management.From a commitment to holistic well-being to a strict emphasis on medical adherence, these beliefs are crucial in shaping how patients and their families interact with the healthcare system and inform their decisions about treatment and everyday routines [13,15,68,77].
Exploring personal values and their infuence on chronic illness management has gained attention, yet a gap remains regarding pediatric patients and their families.Much of the existing literature has centered on adults and their personal experiences.However, children, with their unique developmental stages and needs, as well as the families that support them, represent a crucial overlooked demographic.This underscores the need for more research to understand families' values in managing their children's chronic illnesses.
However, designing (health) technology for children is not without its challenges: Factors such as varying skills and needs across age groups, developmental stages, and individual abilities necessitate tailored approaches [25,59,110,155].The diverse cultural contexts in which these technologies are deployed also demand careful consideration and adaptation to ensure their efectiveness and accessibility for all children [4,79,122,123,158].Moreover, ethical considerations play a crucial role in the design process and use practices, as safeguarding the safety [43,119,150], privacy [72,73,138], and autonomy [53,86,149] of children is critical.
Recently, a wave of HCI research has shifted its focus toward a family-centered approach to studying and designing for children's health.Termed "family informatics" [102], this emerging area elucidates how family members collaboratively engage in health management and wellness activities.Studies in this realm often aim to uncover opportunities for technology design and interventions to support family collaboration and the dynamics surrounding health and well-being.A notable focus of this research explores the nuances of parent-child engagements in wellness areas, including topics like promoting physical activities [97,[123][124][125], inculcating healthy eating behaviors [82,99,127], understanding sleep patterns [28,101,131], regulating mood [101,157], and setting holistic health or behavioral goals [70,91,115,132].While some research has addressed family collaboration in children's chronic illnesses, however, it has often been focused only on teenagers [55][56][57] or parents' perspectives [65,130].Limited research has examined family collaboration in managing the chronic illnesses of young children.

Parental Concerns on Keeping Children Safe
Parents consistently strive to foster a safe environment for their children, a pursuit that has been deeply explored in HCI research across both physical and digital domains.Regarding physical spaces, Herman et al. noted that, for parents-particularly those from low socioeconomic status (SES) backgrounds-safety is a top priority when introducing wearables to promote physical activity [122].These parents often counsel their children on risk-mitigation strategies, like preferring indoor workouts or choosing safer areas in the neighborhood for outdoor exercise.This research has underscored the potential beneft of integrating mapping features into children's wearables to indicate crime-prone zones and pinpoint trusted zones where extended families or friends reside.In another example, Sun et al. investigated parental safety concerns from adopting smart home technologies, such as robot vacuums and smart speakers [137,139].Their fndings showed that parents' safety perceptions signifcantly infuence their decisions about including children in smart home interactions.Mitigation strategies commonly involve restricting device access or employing parental controls.Factors such as parenting style, parents' technology literacy, trust in technology companies, child age, developmental stages, news media coverage, and device characteristics all play pivotal roles in shaping parents' perceptions of smart home safety.
Regarding the digital domain, extensive HCI research has been conducted to understand how to support parents and children with online safety [3,11,40,44,104,154].The rise in popularity of parental control applications emphasizes their perceived role as a solution to the online safety challenges parents face on behalf of their children.Studies by Wisniewski et al. and Ghost et al. suggested that commercial parental control applications might inadvertently harm youth by imposing excessive restrictions or invading their privacy.Therefore, some researchers are reimagining tools to support safer digital places for children [43,154].Badillo-Urquiola et al., for example, used a developmental perspective coupled with a value-sensitive design approach to conceive more youth-friendly online safety tools [10].Their work highlighted the need to foster parent-teen collaboration, preserve teen privacy, and nurture autonomy.Similarly, Wang et al. noted that parental control applications should begin with stringent monitoring and gradually transition toward autonomy as children learn to identify and counteract online risk [148].In the digital health space, a recent study by Lee and Su et al. highlighted parents' apprehensions concerning health data protection and the appropriateness of content, such as advertisements, in child-facing mobile health applications [75].They advocated for an increasing focus on ensuring the digital health and safety of children.
However, HCI studies centered on child safety have not explored the collaboration between parents and children in managing childhood diseases.This is particularly evident for challenging conditions like CF, which are characterized by demanding care routines and emotional complexities.Therefore, our research seeks to understand these parent-child interactions in the context of CF management.

METHODS
This exploratory study aims to understand the lived experiences of families caring for children with CF, a chronic, life-limiting pediatric condition that has received limited research attention in computing.We conducted in-depth interviews with afected families to understand the unique health management practices, technology usage, and challenges they experience daily.

Recruitment and Data Collection
We partnered with a leading children's hospital in a suburban area of the U.S. to recruit participants.This hospital provides care for over two million children and houses the region's only CF center accredited by the Cystic Fibrosis Foundation.Their renowned pulmonary and lung division ofers comprehensive care for pediatric respiratory conditions through a multidisciplinary team of experts, from pediatricians and pulmonologists to dietitians and psychologists.Our university's institutional review board approved the study.In consultation with the hospital's institutional review board, it was determined that no additional approval was necessary from the children's hospital.We recruited families with children aged 6-13 years in which both the parents and children were fuent in English.We intentionally focused on children in this age range for two key reasons.First, this age bracket represents a crucial developmental phase during which children transition from family-centric lives to broader social environments, such as school and extracurricular activities [36,94].This transition is also marked by increased technology use [89].Concurrently, it signifes a shift in health management responsibilities, with children beginning to assume more active roles in their health management [8,26].Although technological supports have been increasingly designed and developed to aid lung diseases [38,46,58,135,136,151,153], limited work has attempted to understand how to design them specifcally to support young children with these conditions and their parents.Second, during this age range, children begin to actively seek clarity about CF and take greater initiative in their own care-a distinction from younger children.Thus, this stage is pivotal in preparing them for future independent health management.
During the recruitment phase, the frst author attended CF clinics weekly.They were stationed in the provider room, while case manager engages with families to inquire about their interest.For interested families, the case manager introduced the frst author to explain the study and schedule interviews if they consented.From December 2022 to June 2023, the frst author conducted extensive recruitment over 16 clinic visits, comprising 13 in-person and three telehealth sessions, each lasting about 4 hours.They interviewed 26 participants from 12 families: 12 children aged 6-13 and 14 primary caregivers, including nine mothers, two sets of parents, and one grandmother in a parenting role (Table 1).Given the participants' young age and dependence on their parents, we conducted joint interviews with the parents and children to create a comfortable setting.Though in-clinic and in-home options were ofered, all families selected remote Zoom interviews due to extended clinic visits (2-3 hours) and the potential environmental risks that researchers can introduce in a home setting.
We adopted a semi-structured approach during family interviews to encourage candid responses and comprehensively cover key topics.The conversations explored daily routines, health management practices, technology use, challenges in daily life, and coping strategies.For instance, we asked children and parents questions such as "Can you describe a typical day?" and "How did you learn to manage CF?", as well as some questions specifcally for parents, such as "What strategies or avenues have you pursued to seek support?"We customized questions separately for the children and parents, carefully tailoring language for young participants.Interviews lasted 50-80 minutes and were audio recorded, and each family received 50 US Dollar compensation.

Data Analysis
The frst author initiated data analysis after the frst three interviews, continuing throughout the 6-month data collection period.During this time, they used qualitative memo to capture emerging analytical ideas and insights [18].They noted how factors such as the temporal pattern of the illness (e.g., experiences at diagnosis versus months/years after), child development (e.g., age and agerelated milestones), and family values drastically shaped the health management of CF.These notes informed the remainder of the data collection, as they intentionally added interview questions to probe how these factors infuenced families' health management journeys over time.Once data saturation was reached-the point at which the interviews yielded no new relevant insights-the frst and last authors inductively conducted an in-depth analysis of a subset of transcripts.We followed Braun and Clarke's six-phase refexive thematic analysis approach: familiarization, coding, generating initial themes, reviewing themes, defning and naming themes, and producing the report [19,20].Through this interpretation process, we generated codes including "shock at diagnosis, " "overwhelmed knowledge seeking," "parental dependence," and "parental guidance." Broader themes centered on stages in the parents' journeys, from initial diagnosis shock and urgent education-seeking to careful involvement of children in health conversations and management.The frst author then analyzed the remaining transcripts.The research team met regularly throughout the analysis process to discuss coding.

Limitations
Our study recruited participants from a U.S. children's hospital pulmonary clinic.These participants provided perspectives from those who have had access to a specialized CF care team in a major regional hospital.As a result, some experiences may only resonate with individuals with access to such expert care.Additionally, the insights related to healthcare and school systems were anchored in the U.S. context, which might limit their applicability in diferent sociocultural settings.The study participants all chose remote interviews for health safety, given the participants' vulnerability to infections.However, this may have restricted in-person observations of subtle interactions.Though we strived for equal input, many child participants in the study were very young and had limited insights to ofer; children from 10-13 years of age had signifcantly more to discuss than those who were 6-9 years.Nevertheless, joint interviews provided a comfortable setting for families managing a serious health condition.Moreover, while our analysis revealed the key roles of personal values and child development, factors like family structures, caregiver dynamics, social class, and other social determinants likely also impact disease management.Thus, an opportunity exists for health HCI research on pediatric illness to employ study designs and analyses that directly examine how these multidimensional factors shape family experiences.Though the fndings may not be fully generalizable across contexts, they provide invaluable perspectives on the needs of an understudied group confronting complex challenges.

Author Positionality
The frst and last authors have extensive HCI research experience in health contexts and with children, including the frst author's focus on pulmonary conditions since 2019 after noting a lack of computing research and services for this community.The frst and last authors recognizes participants' lived experiences as vital knowledge and understands how health connects to broader ecologies, such as lifestyles, cultures, and social determinants.By learning from lived experiences when designing supportive technologies and focusing research on participants' needs and values, we aim to avoid unintended harm from poorly designed systems.As academics without personal lung disease experiences, we recognize the limitations of an outsider perspective; however, if the study is conducted collaboratively and with care, our training may complement patient narratives.The second and third authors, as practicing clinicians actively treating pediatric patients, enabled recruitment pathways, and provided insights from their invaluable medical perspectives.Their established clinical relationships also facilitated trust between participants and this research team.Throughout our research, the team strived for transparency regarding our position while continuously refecting on how to conduct this work ethically and respectfully, in hopes that the care invested in these relationships is apparent.We aim to continue building the trust established to partner responsibly with these communities to drive positive change.

RESULTS
In this section, we explore the families' journeys with CF, detailing three phases: receiving diagnosis at birth, navigating CF management in the early years, and gradually involving children in their CF care.We underscore parents' emotional transitions, the resources they have utilized, and their evolving CF management strategies as the children mature.While we sought to balance the voices of both children and parents, most quotes in this paper come from the parents, as children may have limited insights to ofer at a young age and only become actively involved in health management in the fnal phase.These fndings ofer valuable insights for designing child-centered and family-oriented disease management technologies.

Emotional Onset: Parents Experience Shock, Heartbreak, and Grief at Disease Diagnosis
The journey for parents of children with CF typically begins when they receive a diagnosis at birth or within the child's frst month of life.For many parents, welcoming a new baby is typically flled with joy, anticipation, and hope.However, for parents greeted with a CF diagnosis, the emotions surrounding birth are drastically diferent.
Parents interviewed in our study consistently used descriptors like "shocking, " "intense, " "traumatic, " and "one of the life moments you will never forget" to express their initial feelings and experiences.This emotionally charged response largely stems from confronting the harsh reality of CF-an incurable, life-limiting chronic condition-early in their child's life.The initial shock and difculty grappling with the diagnosis were common threads among all parent participants in our study.As Mia's mother depicted, I remember every second of when we got Mia's diagnosis. . . .When Mia came out, her little stomach was swollen, her lungs struggled, and everything felt like a blur.After a few days, they said she needed surgery.And that's when they frst mentioned cystic fbrosis.I was lost; I had no idea what it was.My mom tried to calm me down, but when the tests came back . . . it was real.We started treatments immediately.I mean, can you believe it?Breathing treatment every 3 to 4 hours every single day for such a tiny baby.It was horrible!
Alongside the initial shock of diagnosis, our participants encountered yet another formidable challenge: a lack of familiarity with and understanding of CF.While not a rare condition, CF has a much lower prevalence compared to other pediatric illnesses.As evidenced by the confusion of Mia's mother, nearly all parent participants knew very little about the disease and its implications at the diagnosis stage.Parents found themselves thrust, often unprepared, into a demanding world of rigorous care and relentless treatments, typically beginning right after birth.This sudden immersion into unfamiliar territory was made more difcult by their lack of prior knowledge about the disease, resulting in major emotional and life adjustments for the parents.As echoed by many, the journey often felt like an unprepared and abrupt transition "from absolute ignorance to cystic fbrosis to becoming the core focus" of their family.
After the diagnosis, some parents relied on old information they remembered to make sense of CF.This outdated knowledge added to their distress, especially since CF treatments have improved remarkably.People with CF often live into mid-adulthood, but past beliefs suggested much shorter lifespans.Caleb's grandma exemplifed this: "I knew very little about CF before Caleb's birth, just scary stories.When he was diagnosed, I was horrifed.I remembered a family who lost multiple kids to CF at a very young age."Similarly, the diagnosis weighed heavily on Pier's mom, who felt as if "someone communicated a death."For these parents, an outdated understanding of CF added to their confusion and distress.
While dealing with shock and heartbreak, all parents instinctively turned to the healthcare providers who shared the diagnosis, seeking clarity.However, this pursuit did not always provide relief.A fortunate few, such as the families of Lucia and Chase, were able to engage with specialized CF teams immediately.These teams provided them with current and comprehensive insights.However, many parents delivered their child in smaller or regional hospitals that lacked CF specialists and only received diagnoses from general practitioners, such as pediatricians or obstetricians (OBs).Often, these providers lacked the specialized knowledge or current insights to properly advise parents about an uncommon condition like CF, which has seen signifcant advancements in recent years, and this knowledge gap often exacerbated the parents' distress.Jacob's father recalled their pediatrician's using severely outdated CF projections, labeling it the "worst day" of his life.They were advised to quit their jobs for intensive care and told to expect only 5 years with their child.Manny's mother underwent a similar experience with her OB.She recalled, "He [the OB] told me he was so sorry and started crying.I remember Manny was just a week old, and I was so confused.He [the OB] kept on crying and telling me that Manny would probably die before school." For many parents, a lack of disease-specifc expertise at diagnosis compounded confusion and grief when they were desperately seeking clarity.
While awaiting connection with specialized CF teams, many families, in their anxiety, turned to the internet to understand CF-a quest that often spanned days or even weeks following the diagnosis.With little to no guidance, distressed parents scoured the internet for information while caring for their newborns.As Manny's mother stated, After I learned about the diagnosis, I was overwhelmed, so naturally, I turned to the internet for answers.Google became my primary and really my only resource as I tried to understand what it [CF] was.I was acting like a maniac and trying to read as much as I could to understand this thing [CF]. . . .There are diferent variations and severities of CF, and of course they would publish things that highlight the worst-case scenarios that can ever happen. . . .Every evening was a struggle.My poor husband came home every night, fnding me in tears.This mother's intense memories of the days following her child's CF diagnosis were echoed by others, including Pier's and Lily's mothers.Each recounted their overwhelming experience with online searches, driven by an urgent need to understand the disease and its implications for their child's future.However, amidst the deluge of information, many found themselves more confused and distressed than informed.
In sum, many parents' initial CF caregiving journey was marked by shock, confusion, and distress due to unexpected diagnoses and unfamiliarity with the disease.While CF is not rare, its lower prevalence leads to a lack of current understanding and support systems, intensifying parent's distress, and challenges during this early, vulnerable stage.

Navigating Paths Forward in Early Years:
Parents' Coping and Managing for Children's Health Following the distressing diagnosis, parents enter an intense period of actively managing their child's health while simultaneously striving to cope with and comprehend the disease.This demanding phase primarily spans infancy and the preschool years, a time when children are wholly dependent on their parents.It encompasses two key sub-phases: (1) seeking specialized CF teams for disease management guidance and (2) self-driven exploration of practical insights on how to best manage CF in daily life.
5.2.1 Specialized CF Team.After the initial diagnosis, all families were directed to the specialized CF team at our research site, a shift that brought signifcant relief to parents previously overwhelmed by information and outdated perspectives.The CF team adopts a holistic approach to care, encompassing the medical and emotional complexities of managing this multi-faceted disease.Doctors and nurses work closely with families to tailor rigorous medication regimens based on the child's specifc mutations.Respiratory therapists teach essential airway clearance techniques to panicked parents caring for infants struggling to breathe.Dietitians provide nutritional guidance to optimize growth and health in CF patients prone to poor weight gain.Social workers link parents with fnancial assistance programs to obtain expensive but lifesaving new genetic medicines.Mental health providers ofer counseling as families process grief over their children's prognosis.Additionally, the CF Foundation website acts as a reliable online resource for further knowledge.
Beginning with the frst consultation, the team provided ongoing clinical care and education that the parents described as invaluable, even "lifesaving" in some cases.Through introductory workshops and regular consultations, the parents began to gain up-to-date knowledge about innovations in CF care and build confdence in managing this unfamiliar, complex disease.As Pier's mother recounted, "We were too scared to drum his back because he was a little baby, so a lady in the hospital taught us how to do it so that the mucus would loosen up.The nurse would tell us something we didn't know. . . .Everybody gives you little pieces.That was absolutely helpful." This continual support was vital, especially during the early, daunting days post-diagnosis.
However, while the CF clinical team provided invaluable insights, their focus was mainly on the clinical and educational aspects of CF and its treatments.Many families felt the need for more personalized strategies to handle the day-to-day challenges of managing CF at home.The medical advice, although essential, did not always bridge the gap between clinical knowledge and practical day-to-day management at home.

Proactive Exploration and Personalized Approaches to Managing Children's CF.
To integrate CF management into daily life, parents sought practical insights beyond clinical knowledge, often turning to the internet due to a lack of personal CF connections.This self-education was deemed crucial by many parents, given CF's variability in presentation and treatment.As Chase's mother described, "With CF, every patient's experience is unique.You need to read a lot to see what might be relevant." Online health communities and social media groups quickly became vital lifelines, connecting parents to experienced CF peers for the frst time.From meal planning to cleaning tips, these groups provided invaluable real-world advice.For example, parents like Eddie's father uncovered creative techniques to encourage medication compliance, such as crushing pills and blending them with Nutella or peanut butter until undetectable.He recalled, "When he was young, he couldn't take one of the pills because it was too big for him to swallow, and we saw parents sharing in the group saying if you crush the pill and spread it in their food, they will take it.That worked, so we did that for a long time."The ability to learn from other patients' experiences motivated many parents to persist in self-educating beyond clinical guidance.
Through the insights they gained, the parents were unanimous in emphasizing their commitment to strictly following the daily medical and therapeutic regimens for CF.This strict compliance stemmed from their understanding of CF progression; the parents were acutely aware that even a slight lapse in adherence could have serious repercussions, causing irreversible harm, such as declining lung function.More broadly, lapses can also damage vital organs, such as the pancreas.
In addition to adhering to medicine and therapy, all families emphasized the signifcance of maintaining a hygienic, germ-free environment, since CF patients are particularly susceptible to lung infections.Their strategies ranged from using air purifers and conducting regular deep cleaning at home to avoiding materials like carpets known for retaining germs.For instance, both Luna's and Pier's families emphasized meticulous cleanliness at home and wearing masks in public settings, even before mask-wearing was widely adopted during the COVID pandemic in the US.Similarly, for Eddie's parents, ensuring an impeccable living environment is a top priority in CF management.They said, We take a lot more precautions than the average person . . .like sanitizing, and he was wearing masks before wearing a mask was cool.All these habits have been pretty much since he was born. . . .For us, it's a subconscious thing now.We do it all the time, no matter what.Also, people will see that I have a lot of issues with sickness because when kids with CF get sick, they typically get bacterial infections, and any bacterial infection can pretty much lead to a hospital. . . .So, attention is there all the time.While every family diligently followed medication and therapy protocols and maintained hygiene in their living environments, each parent had crafted unique health management approaches tailored to their preferences, beliefs, or specifc family situations.These approaches encompassed various facets, including social activities, school choices, and parental employment and its impact on availability.
Distinct atitudes toward social activities.We noticed that parents held varying opinions on the types of social activities in which their children with CF should participate.Some parents prioritized maintaining hygiene and limited their children from engaging in activities they perceived as risky for CF.These children were often not allowed to join sports teams or attend birthday parties due to concerns about potential exposure to germs from unfamiliar individuals.For instance, Lily's mother emphasized, "Standing water is a defnitive no for her because that's where the bacteria are. . . .Swimming in ponds or creeks is a big no." Lily was also discouraged from swimming in public pools, as her mother worried about the potential health risk of stagnant water.These parents prioritized safety and minimizing risks above all else.
In contrast, some parents in our study sought a balance between rigorous safety measures and ofering their children fulflling life experiences.These parents deemed it essential for their children to partake in regular social activities, including sports and playdates, emphasizing their signifcance for children's overall social and emotional development.For example, Jacob's parents supported his participation in a youth sports league from a young age, taking added precautions like post-game showers and extra treatments.As his mom shared, "I don't see how CF has impacted him physically by being active.He swims, plays soccer, and surfs.He likes it, and we encourage it."Manny's mother exhibited a similar philosophy, allowing him the joy of swimming in pools.While recognizing the potential infection risks, she believed in letting him experience the simple joys of childhood and playing with friends.As she said, Some people won't let their kids go into a public pool. . . .I am not like that. . . .I want them to live a life and not miss out on everything.If he's going to go to a pool party, we're always careful.He makes sure to take a shower, and he does his treatments.You know whatever to do just to make sure that he's extra clean.
Allowing these enriching activities requires diligence in monitoring symptoms and aggressively treating any infections that do occur.But these parents view some risks as reasonable costs for giving their children fuller social activities and life experiences.
Diferent school choices.In addition to social activities, parents' perspectives also diverged regarding their children's school options.Some families in our study gravitated toward homeschooling or private institutions ofering smaller class sizes.Such decisions were often less about academic preferences and more about creating controlled environments that minimized the health risks associated with more frequent in-person interactions.For Mia's mother, homeschooling was a deliberate choice to reduce the odds of infections often seen in larger public school settings.Such decisions exemplify a more protective approach, in which immediate health benefts are valued over broader social exposure.In contrast, families like Sofa's demonstrated a blend of precaution and compromise.They actively searched for schools with fewer students, not only to reduce infection risks but also to foster closer communication and collaboration with educators.Sofa's mom articulated this balance: "Her dad and I decided on a private school.We're concerned about fu seasons and the risk posed when she's around sick children.With a smaller class size at the private school, coordinating with the teachers becomes easier.We even set up an air purifer in her classroom." Ari's case also refected a proactive stance, highlighting some parents' dedication to carefully shaping the school environments with which their children engage.It indicates that, for these parents, any potential trade-ofs are worth the peace of mind that a more controlled environment can ofer in safeguarding their child's health.
Conversely, some families, like those of Eddie, Jacob, and Mateo, preferred public schools.This preference stemmed not only from cost considerations but also the parents' prioritization of cultivating a sense of normalcy and wanting their children to be in an educational environment alongside peers without health concerns.Pier's mom, for instance, emphasized the importance of interaction with classmates and teachers at school, stating, "We send him to a regular school with all other kids." She emphasized that her intention was not merely academic but that she hoped to provide an environment where Pier could grow up learning and forming lifelong friendships alongside other children his age without feeling excluded.Her insights reveal a deeper parental instinct: while health remained a top concern, some parents believed that it is equally important for their children to have social interactions at school to support their emotional development and mental well-being.
Diferent employment choices for parents.We also found notable diferences in parents' employment choices to accommodate their child's CF management.Some parents felt compelled to adjust their careers, prioritizing fawless care for their child above all else.For instance, Mateo's mother mentioned, "I work part-time from home. . . .When he is sick and misses school for extended periods, a fulltime job doesn't allow me to care for him adequately." This sentiment underlines the unpredictability of CF and how health downturns can require immediate parental attention.For this mother, being physically present and available, especially during these challenging times, took precedence over a full-time career.Similarly, Lucia's mother chose to quit her prior job to provide full-time care for her daughter, stating, "Taking care of the kids at home is my fulltime job now.With her condition, managing all the treatments and medicines she needs becomes challenging."Behind this statement lies the mother's belief that the complexity and intensity of CF care require vigilant attention that only a dedicated caregiver-like a full-time parent-can consistently provide.Her choice highlights the deep-seated priority that minimizing the chances of treatment oversight is essential for her child's well-being.
While many parents adjusted their employment, not all felt this was needed, highlighting difering priorities compared to parents like Mateo's or Lucia's.Jacob's parents revealed that their previous pediatrician had advised one of them to forgo their career to provide full-time care.However, they opted against this, driven by a desire to instill a sense of normalcy in their son's life.Refecting on their decision, they stated, "As the disease goes, it's really not that bad.We think it's very hopeful, and both of us continued to work full-time because we don't feel the need to quit." Their decision underscores not only an optimistic outlook on disease management but also their dedication to upholding a sense of normalcy and minimizing the impacts of CF on their regular activities and life choices.
In summary, parents employed diverse strategies to manage their children's CF that were infuenced by their beliefs, preferences, and unique family circumstances.Some adopted stringent measures, such as restricting children from risk-prone activities, choosing to homeschool, or even deciding to stay home to provide full-time care, prioritizing health risk mitigation.In contrast, others pursued approaches that encouraged social activities, enrollment in public schools, and maintaining dual-career households.This latter approach often underscored the signifcance of children's social and emotional development, fostering a sense of normalcy, and aspiring for a fulflling life.
Strict or evolving priorities.We found that parents' approaches to managing CF are not static but evolve over time.A few parents in our study transitioned from a strict safety-frst approach to a more fexible one, refecting their ongoing assessments of their children's needs and changing priorities.Pier's mother described this process: "I was incredibly disciplined, almost militant initially.We had strict rules: no visitors were allowed in the house; mandatory hand washing; shoes were left outside; no fowers; and we maintained a rigorous daily regimen of pills and breathing therapy.It's almost like we did COVID protocols before COVID even happened." As Pier grew, however, her stance evolved to a nuanced understanding of balancing environmental safety and overall well-being: "I once read something online a long time ago and always had in mind that working out is a way of treatment.He does sports twice a day, every day.He has played soccer since he was very little, and his HIIT workout games.In the winter, it's been a lot of skiing since he was 4. " This marked a drastic shift in the parent's attitude toward health management.Pier also transferred to a public school from a smaller private one, further emphasizing this shift in his mother's evolving beliefs and approach.Echoing this sentiment of adaptation, Chase's mother noted, "At some point, you must prioritize and let certain things go . . .you can't live your entire life in a bubble." She further explained that as Chase matures, he must develop social skills and experience a fulflling life rather than remain in a risk-free yet isolating environment.

Introducing Children to the World of CF Management: A Gradual and Cautious Approach
Upon receiving a diagnosis at their child's birth, parents experience an exploration stage in which they learn about CF and determine their methods of managing it based on family situations.However, when children grow older and become curious, parents have to involve them in health discussions and management.They do so cautiously, introducing CF to their children gradually to avoid the trauma or confusion they experienced.In our study, this stage began around ages 6-8 years, as at this age, children's maturing cognitive and linguistic capabilities enable them to comprehend their surroundings better, verbalize emotions, and articulate needs.We identifed two key activities characterizing this gradual involvement of children: (1) including children in CF conversations with caution and (2) incorporating children in CF routines with oversight.

Involving
Children in CF Conversation with Caution.For many families, introducing their child to the intricacies of managing CF begins with a conversation.As children mature, they become more inquisitive.Many parents mentioned their children's asking questions like "Why do I need therapy every day?" or "Why must I take medicine all the time?"While parents might initially respond with simple and straightforward answers, such as "You have a condition in your lungs," children's deepening awareness of their health as they grow renders these explanations less satisfactory.Parents often struggle to give simple answers when faced with questions like "Why can't we skip therapy for more playtime?"or "Can I skip the blue pill since it tastes bad?"These increasing inquiries often signal parents to initiate more detailed discussions about CF.We found that parents gradually introduce their children to the realities of CF, aiming for constructive dialogues that progressively deepen the child's understanding of the disease.All parents believed that their children needed to understand CF management, including understanding basics like avoiding sick people, adhering to medicine and therapies, and taking precautions, such as handwashing.
The parents highlighted two ways of facilitating constructive conversations around CF: one approach uses a storybook as a medium, while the other involves proactive, spontaneous discussions before specifc events or in response to children's inquiries.The storybook method relies on a short book titled "Who Am I?" provided to many families by the CF Foundation.Numerous parents, including Caleb's grandmother and Lucia's mother, attested to the book's value in facilitating initial conversations about CF, especially when they were uncertain about the best approach.This storybook became an essential tool for them, as their families would gather to read the narrative together.As Caleb refected, "It provides the basics about CF.The story follows a kid with CF, and it talks about what happens to her lung and what she needs to do every day to make her lung happy, like breathing treatment and pills, and it also shows her experience at school or during sports."These shared reading sessions became cherished memories for both the parents and children, who praised the book's positive and constructive portrayal of CF.Besides reading the book, the parents often found themselves engaging in spontaneous conversation whenever their child expressed curiosity about CF or when they were encountering a new situation or challenge (e.g., transition to grade school, signing up for a new activity) for which they needed knowledge to protect themselves.These discussions often became important moments in which the parents imparted insights to their children about CF management.For example, Sofa's mother shared, We've always been clear with Sofa about the specifcs she needs to avoid, like standing water and rotting onions, because of the bacteria they might contain.Recently, she started to take a gardening class at school, so before that, we made sure to have a conversation so she knows that she must wear gloves, wash her hands afterward, and ensure she doesn't touch her face.
The storybook-facilitated family sessions and proactive conversations underscored the parents' intention to convey CF-related knowledge, from understanding the condition to daily health management tips.The parents presented the information encouragingly and constructively, ensuring that their children were equipped with preventative knowledge and an understanding of self-care, hoping the knowledge would form a cornerstone for the child's future self-care journey.
While attempting to involve children in discussions about their CF, however, the parents often communicated cautiously, avoiding the disease's distressing aspects.Many parents in our study, especially those with younger children, intentionally withheld information on more challenging CF-related topics, such as life expectancy.Many parents preferred not to burden their children with negative details at a young age.For instance, refecting on her emotional journey, Pier's mother said, "We grieved a lot when he was younger. . . .At the time, the average life expectancy for a CF patient was 38, which was the number hanging on top of us."She shared that Pier, now 13, is aware of some of these aspects, but he was shielded from them when he was younger.Moreover, many parents showed reluctance to discuss the day-to-day challenges associated with CF.For instance, parents typically ended the conversation when children voiced their wishes to bypass treatment for social events like sleepovers.A common refrain was "We've discussed this before; we won't go over it again."At the heart of such reactions lies a parental worry that persistent discussions about CF's limitations could unintentionally direct the conversation to more distressing facets of the disease, such as the adverse efects of medical noncompliance on life expectancy or the irreversible deterioration of lung function.These apprehensions often stem from the parents' difculties grappling with CF's vast and sometimes disheartening realities.By not constantly addressing worrying facets, parents aim to live "normally" and not let CF dominate family life.

Involving
Children in CF Routines with Oversight.In addition to facilitating constructive discussions about the implications of the disease, many parents gradually introduced their children to health routines.According to the parent participants, this often began around the time their children turned 8-10 years, when they increasingly showed interest in their health management.For example, Chase's mother noted, We started using terms like "albuterol" and "hypertonic saline" when he was around 5, as he began to talk more.But it's only in the past few years, maybe since he turned 8 or 9, that he started to show interest in or try to understand their signifcance for his health...At the end of the day, it's his disease.He will have to carry on with his routine for the rest of his life.And so, we just want to ensure we are starting early.We make it a normal part of our routine and a normal part of our vocabulary.Echoing Chase's mothers, Mia's and Luna's mothers also observed the 8-10 year age bracket as the time that their children began to show a more pronounced awareness and interest in their health routines.Recognizing these shifts, the parents perceived this phase as an ideal window to support their child's sense of responsibility and self-sufciency regarding their condition.This observation aligned with feedback from parents who mentioned that CF clinics often begin integrating learning objectives, such as memorizing the names of medications, for children around the age of 9 years.The goal is for the children to understand the signifcance of their routines, foster a sense of accountability, and be better prepared for the future.
To this end, families introduced various CF management tasks.Most parents taught their children how to use home-based therapy machines, such as how to put the vest on and which buttons to press.For consistency, some parents, such as Chase's and Luna's, employed phone alarms as daily reminders for therapies and medication timing.For younger children, such as those around age 8, the parents opted for more playful, kid-friendly methods.For instance, Lucia's parents employed a system of color-coded labels with simple dosage instructions, hoping Lucia could learn her medication routine more easily.Some introduced practices like weekend pill-sorting activities, wherein children participated in arranging their medication for the forthcoming week using pill boxes.Lily recounted an innovative approach her dad utilized: "He'd sketch little shapes in diferent colors on a napkin, representing diferent pills and the order in which I should take my pills.Each color and shape matched a specifc pill, guiding me through the process.Eventually, I no longer needed the napkin to guide me." Lily's mom added that, recently, Lily has been able to identify all eight of her medications and has shown increasing autonomy in her daily regimen.
Also, around ages 8-10, parents observed children assuming increased self-care responsibilities.Besides Lily's learning her medications, Caleb's grandmother and Chase's mother shared stories highlighting growing health management awareness and proactivity.For example, Caleb's grandmother described how Caleb checks their adherence: Recently, he has become responsible enough to take it [all his pills].He's even checked on us many times.When we put it [meds] out and we forgot something or, you know, the number of pills wasn't right, he will tell us.He will say, "No, this isn't right.I need one more, or you put one too many." He's becoming very knowledgeable about his condition and what needs to be done.
A subtle shift emerges in this age bracket (8-10 years), as children like Caleb, Lily, and Chase progressively shared responsibilities in their CF routines.Caleb exemplifed children who have adopted a more active role-even occasionally reminding or correcting parents about medications or reflls.As mentioned above, this collaborative dynamic became common around ages 8-10 in our study.Mateo's mother recounted a similar progression: "We're proud of him for being willing to know and do more.He takes on small tasks like cleaning medication cups, and we're introducing him to pill boxes.It's a team efort; sometimes he reminds us of, and at other times, we guide him." She emphasized the emergence of a partnership wherein both she and Mateo played important roles: children manage simpler tasks under the watchful eyes of their parents, while the adults ofer consistent guidance.This shared endeavor not only aids children in building their skills but also does so in a supportive setting.However, while the parents acknowledged their children's growing capabilities in basic tasks, most still consistently oversaw everything to avoid errors.For example, although 8-year-old Lily could competently operate her therapy machine and knew her medications, her parents still vigilantly supervised these activities since they would not take on any risk for a serious disease like CF.
In our study, older children around the age of 10-13 years, such as Luna, Mia, and Pier, expressed a desire for more autonomy during interviews.For instance, Pier mentioned, "I don't think I need my mom's help with my CF stuf anymore."However, the parents remained deeply involved in these children's health management as a precautionary measure.For example, like Pier, 10-year-old Chase stated, "I don't think they have to help me with my meds and vest [therapy]."His mom laughed and clarifed, "He knows his routine and gets started, but we still handle the medicine and equipment.He's incredibly responsible but, of course, needs reminders and help [such as disinfecting nebulizer cups] at his age."Her insistence on overseeing Chase's routines stemmed from an understanding of CF's serious and progressive nature.Non-adherence to therapies and medication can infict irreversible damage to the lungs, pancreas, liver, and kidneys.Given these signifcant implications, the parents still preferred to check and monitor these activities for safety concerns, even when the children believed they were ready to manage CF routines by themselves.While the drive for independence is inherent as children grow, the progressing nature of CF necessitates that most parents maintain vigilant supervision.For example, Mia's mom encouraged Mia to operate her therapy machine yet ensured she remained involved, especially during medication routines: When it comes to her treatment, I'm trying to involve Mia more.Sure, I still prepare the medicine and hand her the [nebulizer] cups, but she's taking on tasks like putting on her vest and operating the machine.I trust her to take her medications, but I keep an eye out to ensure everything's correct.She's 11, so while she's gaining more independence, we're still very much in charge.Recently, she's shown more interest in understanding her condition, but for the most part, she still looks to us for guidance.
In summary, the parents gradually involved their children in discussions and the management of CF in a measured and constructive manner.While aiming to foster constructive dialogues about CF, they carefully shielded the children from its more distressing facets.They began introducing more tasks to children while partnering with them to manage CF collaboratively, aiming to equip children with skills and knowledge to become more self-sufcient as they grow.However, given the intricate and high-stakes nature of CF management, the parents continued to meticulously oversee details to ensure error-free care at this age.

DISCUSSION 6.1 Managing Children's Chronic Illness in the Macro-temporal Structure of Developmental Milestones
This paper emphasizes the importance of child development milestones as pivotal macro-temporal factors in studying and designing for chronic illness management, such as management of CF.Our fndings trace the journey of families managing CF from the point of a child's birth through their early adolescence.The initiation of this journey often coincides with a distressing diagnosis shortly after birth, which plunges parents into intensive care routines, from clearing mucus to administering therapies.Parents wholly manage CF care from infancy to preschool (ages 4-6), given the children's limited cognitive and motor skills.However, a noticeable shift occurs in children as they transition into the tween years between the age of 7-10 years, when an increasing awareness of CF and a budding interest in self-care emerges.By the early adolescence years (ages 10-13), the desire for autonomy in care grows stronger in children, although the parents often continue rigorous monitoring for safety.This evolution, deeply rooted in the stages of child development, underscores the complex interplay between the child's growth and the changing roles of parents and children in their journey with CF.HCI research has extensively examined temporality in healthcare settings, wherein temporality pertains to time experiences and the temporal structuring of activities [85,96,112].It infuences personal growth, interpersonal dynamics, and perceptions of continuity versus change.However, our study's perspective on temporality distinguishes itself from previous work in several ways.
First, existing HCI research has typically linked temporality in healthcare to shorter time frames: clock time [29,74,111], spans of a few months [27], or up to a year [93].These studies have often focused on how temporality relates to the cyclic rhythms of clinical work activities [74,84,112], or how users' acceptance of health technology shifts over time [93].In contrast, our approach views temporality from a more expansive macro perspective, centered on the broader illness experience and health management practices that evolve as children grow.We underscore the temporal transition that begins in infancy and stretches to the end of pediatric care.This expansive, developmentally informed temporal structure remains largely uncharted in HCI research.We argue that macro-temporality ofers a unique perspective when viewed through the lens of children's developmental stages-from infancy through preschool, from childhood to early adolescence.This extended, developmentally informed macro-temporal structure is not cyclical like clinical work practice.Rather, it depicts temporality as a linear progression, each phase presenting distinct experiences and challenges and building upon the preceding one.This new perspective on how macro-temporality can shape the illness experience and healthcare management is crucial.By adopting this viewpoint, future research can understand long-term disease progression and changes in health management practices, which could further inform the study and design of solutions for other health conditions, such as cancer or diabetes.Ultimately, recognizing how this macro-temporality shapes management strategies is essential for the design of technologies and services.
Additionally, we underscore the temporal transition marked by the evolving roles of parents and children in managing health.This perspective stands out from past research on chronic illness and temporality, where the focus was primarily placed on patients individually managing their conditions [27].For instance, our research observed that children's involvement in managing chronic illness progresses through developmental stages.They transition from an absolute reliance on parents during infancy and the preschool years to a phase of inquisitiveness and hands-on involvement during childhood, and eventually to a stage of increased autonomy in the early adolescence years.This shift encompasses more than children's skill acquisition; it also mirrors the evolving emotional and psychological needs of both children and parents.Recognizing and accommodating these multifaceted and co-evolving changes of both parties are crucial.However, this evolving dynamic between a child's growing autonomy and the changing roles of children and parents is an area that HCI research has not commonly explored.
Building on previous systematic reviews of technology for children's health [134], we advocate that health technology and service design for children with chronic illness must consider diferent developmental stages, the transitions between them, and the infuence on children's and parents' roles in health management.Much prior work has examined temporal transition from a singular perspective (e.g., only parents or children) [51,145], focused on families with young adults [126], and shifted from pediatric to adult care [32,47,145,146].Less research has adopted a family lens across pivotal early childhood macro-temporal transitions.Studying how young children and parents progress through infancy, preschool, school age, and early adolescence provides insight into all members' evolving behaviors and views during transition periods.This provides an understanding of unique needs, such as how parents support children across stages, when children may desire less monitoring from parents in some cases.These understandings present opportunities to assist families navigating chronic illness through developmental shifts.Moreover, these early transitions should be recognized as design opportunities to support children's evolving interests and self-management capabilities.Designing technologies attuned to emerging skills and interests at each stage, while easing transitions, can promote children's autonomy and facilitate the journey toward independent self-care.

Creating a Safe Place: Parents Managing CF with Diverse and Evolving Values
Parents consistently strive to establish a safe environment for their children, and HCI work has revealed various strategies parents use to create safe spaces for children regarding technologies, including smart home devices [137,139] and online activities [43,44,75,148].This line of research has shown how factors like parenting style, child development, and parent attitudes shape the methods used to guide children toward recognized safe areas [122] and to limit or monitor interactions [43,148].In health contexts, HCI research has documented parents' concerns about the safety of health data and the content of child-focused mobile health applications [75], as well as the physical safety of children using wearables for physical activity [122].Nevertheless, a notable gap exists in understanding parents' concerns and ways of keeping young children with chronic illnesses safe, especially those with a progressive condition like CF that has distressing implications.In our study, every parent prioritized creating a "safe place" when managing their child's CF.This typically involved adhering strictly to medication and therapy regimens, minimizing health risks in daily life, and fostering an environment that supports their children's comprehensive development-academically, socially, and emotionally.However, the interpretation of "safe place" varied among families.In our study, "safe place" often meant making decisions that aligned with a holistic perspective on providing care, as shaped by parents' individual values and belief in what was right for their children.For some, a "safe place" meant upholding rigorous cleanliness standards, with practices spanning from maintaining immaculate homes to sidestepping potential infection risks, such as attending social gatherings or swimming in public pools.Some parents shielded their kids from infections by opting for homeschooling or smaller private schools.For others, a "safe place" extended beyond health precautions.These families frequently made thoughtful decisions about schools and social activities, balancing the benefts of social interaction with potential health risks.Their choices highlighted their priority in nurturing their children's social and emotional development, promoting a sense of normalcy, and striving for a well-rounded life.Ultimately, for these families, a "safe place" was not merely a physical environment free from harm but also space where their children could fourish, grow, and experience the world with a blend of caution and a sense of normalcy.These diverse strategies show that the conception of a "safe space" for children with CF is deeply rooted in parental values and beliefs.Each decision is a testament to what parents perceive as the optimal environment for their child, as shaped by individual values and the nuances of their family circumstances.
We build on this line of research to emphasize how parental values play a pivotal role in a child's health and well-being.While previous studies on personal values in health management have primarily focused on adult populations, we explored the unique dynamics between parents and children.For instance, studies such as those by Berry et al. have focused on spousal relationships, which operate under diferent power dynamics than the parent-child relationship investigated in our research.In the early years, the management of a child's health, especially in the context of CF, is largely orchestrated by parents, with children having minimal, if any, involvement.This central role of parents in decision-making is strongly shaped by their beliefs about what is "right" or important for their child's condition and the broader well-being of the family.Such beliefs pave the way for the parents to craft a safe place for their child to grow up.While standardized treatments for CF may exist, encompassing strict adherence to medication and therapy protocols and maintaining a hygienic living environment, the intricacies of daily home management reveal signifcant variations, refecting each family's unique circumstances and parental values.Thus, decisions are primarily rooted in the individual values and beliefs held by parents.Parents actively seek various resources and information, which they then assimilate and combine with their intrinsic values and specifc circumstances to curate a safe, tailored environment for their young child.This heterogeneity in parental approaches underscores the importance of understanding and addressing these distinct values, as they profoundly infuence a child's health and well-being.Without recognizing and addressing these values and unique family situations, technology designed for home management is likely to be unsuccessful.
In addition, while much of the existing research on patient values tends to focus on specifc, unchanging moments, our fndings reveal that these values are dynamic, adapting in response to various factors, from exposure to new information to the growing needs of the children.For instance, after reading an online article about the benefts of sports for CF, some parents shifted from a cautious approach, emphasizing cleanliness and avoiding potential risk-prone activities, to actively encouraging their children to engage in sports.Other parents, recognizing their children's developmental needs, evolved from discouraging certain activities, such as attending a pool party, to allowing them.As children begin to participate actively in their CF management, their input can further infuence and negotiate these values.These transitions underscore the importance of understanding how parents' values can change and how these evolving values can impact CF management.
Our study emphasizes the importance of recognizing and accommodating families' values when designing digital health technologies for children's health management.While upholding and integrating medical guidelines is crucial, it is equally vital to help parents create a management plan that resonates with their personal values, ofering them reliable information.To achieve this, supportive technologies like a website or mobile application could feature customizable interfaces tailored to a family's illness journey and values.For instance, at diagnosis, the system could provide parents with digestible, up-to-date information about the disease and also ofer necessary emotional support, such as easy access to professional therapists or parent volunteers who have undergone similar experiences and are willing to provide support.As the family's needs evolve, the system could adapt and provide relevant information and resources to match their changing circumstances.It could also prompt parents to defne their values or priorities.Accordingly, a parent who values cleanliness could be provided with sanitation guidelines and best practices, while one who values social activities might receive recommendations on how to participate in social events safely.Further, connecting these parents with communities with similar values could be an added support.To maintain relevancy over time, these systems should either prompt feedback or detect shifts in user behavior, allowing parents to adjust priorities as their values evolve.Additionally, as values change, the system should provide alternative approaches or strategies, especially when parents are open to change.

Recreating the Safe Place: Parents Introducing and Involving Children in CF Management
As the children matured, we found that the parents often had to readjust and recreate the safe place as they began to involve their children in CF management.Adhering to the principle of ensuring safety and preventing harm, parents involved their young children in CF management gradually and with caution.Our fndings contribute to the growing area of family informatics research examining collaborative family health eforts [102].Specifc areas have included parent-child interactions around physical activity [97,[123][124][125], healthy eating habits [82,99,127], sleep [101,131], mood [101,157], and goals [70,91,115,132].However, research on managing pediatric chronic illness has largely focused on teenagers [55][56][57] or only parent's perspectives [65,130].Limited studies have delved into how families manage the chronic illnesses of young children.
Our research elucidates how parents guide their young children's transition from dependence to understanding and actively managing their health in everyday life.Two critical balancing acts emerge.First, as children around age 6 grow curious, parents carefully introduce CF topics using storybooks and daily conversation, ensuring knowledge is imparted without distressing details, such as life expectancy.Second, by ages 8-10, with children's increased interest in self-care, parents foster collaboration, permitting supervised tasks to instill responsibility and self-efcacy while ensuring precise, error-free care due to CF's severity.This progression emphasizes the parents' role in introducing CF management and maintaining both physical and emotional safety as children gain independence.
Prior studies have indicated that school age is the optimal developmental window for children to begin taking shared responsibility for their health management, engaging in collective decisionmaking, and forming enduring health habits [12,69,90].It is crucial to understand that this stage is a foundation for these children's future well-being and self-management capacities; these early experiences in shared health management are pivotal, as they shape lifelong attitudes and habits concerning CF management, fostering CF management skills and building capacity for future selfmanagement.
We underscore the potential of this developmental window (age 6-13) as a prime opportunity to craft child-centered and familyoriented technologies that support parent-child interactions in discussions and management of a serious chronic condition like CF.The goal of these technologies is to provide children with the space to learn, experiment, and gradually assume responsibility while ensuring a safety net is in place and allowing parents to monitor and intervene when necessary.This balanced approach not only prepares children for future self-management but also safeguards their psychological well-being in the present.
Parents often grapple with striking a balance between having constructive conversations around disease implications while shielding their children from the emotional distress associated with the condition.Here, a system, such as a mobile or web application, could create a "safe place" for children to explore, learn, and build self-efcacy without being prematurely exposed to the distressing aspects of the condition.For instance, this system might ofer interactive storybooks [113,156,159] or games [54,92,125] for younger children, leveraging the proven efectiveness of storytelling and play in building health literacy.As children grow older, transitioning to video-based contents [88] can maintain engagement, addressing more complex aspects of the condition in an age-appropriate manner.This child-centered, digital-mediated experience could engage children and facilitate learning essential disease management knowledge and skills in an incremental, age-appropriate manner.Starting from recognizing the names and purposes of medications, it progresses to identifying risky behaviors (e.g., exposure to germs) versus benefcial self-care actions (e.g., nutritious diet, balanced physical activity, and mindfulness activities), thereby empowering children to build health literacy and competencies over time.Similarly, this "safe place" also serves parents, guiding them on when and how to introduce various disease-related content as their child matures and as their relationship with the child evolves.The system could assist parents in learning the best ways to have these "serious conversations" and could provide access to additional support resources as needed, such as consultations with the hospital CF care team, online health communities, or mental health professionals, to promote the family's psychosocial wellbeing.The goal is to cultivate a sense of agency in children about their health while ensuring parents feel equipped and confdent in guiding them through the evolving stages of managing a condition like CF.
In addition, as children mature, parents struggle with deciding how much autonomy to grant for CF health tasks.While they wish to foster autonomy in their children, they also need the assurance that their children are safe and managing CF properly.Here lies the potential for a system to create a safe place for a dual purpose-to foster children's agency while assuaging parental concerns.Technological tools, such as a mobile or web application, could be designed to suggest incremental age-appropriate health tasks, allowing children the freedom to try, experiment, and develop self-management skills over time.These systems could track children's learning progress, create family-oriented activities for parents and children to hold constructive conversations on evolving health management expectations, set collaborative goals, and inform parents when guidance is needed, or, conversely, send reassuring updates to show that all is going well.Such tools could also provide parents with guidance on gradually extending autonomy in parallel with the child's increasing desire for independence as they grow.Furthermore, the dynamic between parent and child evolves as children transition into their teenage years and then young adulthood.The challenge for parents is continually adjusting their approach, fnding balance between guidance and autonomy.As children grow older, there may be an increasing potential for conficts between safety assurances and developing agency.Further research should examine this tradeof and how to optimize solutions that account for both parental and child interests.The ideal technological solutions should be adaptable, such as introducing more complex tasks like managing medical appointments or insurance by letting children experiment with these tasks in a sandbox environment for learning.By ensuring a "safe place" for both child and parents, these systems can facilitate a symbiotic relationship, fostering trust, mutual understanding, and the child's well-being at its core.

CONCLUSION
This paper explores the experiences of families with young children diagnosed with CF.We charted their evolving journey from infancy to early adolescence, highlighting the shifting dynamics between parent and child.Our study emphasizes three key areas: child development milestones infuencing CF management, evolving parental values shaping healthcare experiences, and the delicate task of introducing young children to serious health discussions about CF.This research aims to lay the groundwork for health and computing studies tailored for families dealing with CF and to stimulate discussions about transitioning care in families, emphasizing parental support, child autonomy, and fostering health habits.While centered on CF, many of our fndings resonate with experiences managing other pediatric conditions, including autism and cancer-for example, the challenges families face in accessing knowledge and the reliance on parent communities.As such, opportunities exist for more extensive future examination of the parallels between family experiences across pediatric conditions, which could further inform supportive technologies.Though outside this paper's initial scope, noting these connections would lay the groundwork for shaping empathetic designs based on the common challenges of parents and children confronting complex care.

Table 1 :
Summary of study participants . In fact, patient values have long been a central focus in health technology design within HCI research.For instance, Berry et al. and Lim et al. introduced the concept of personal value as "what is most important to wellbeing and health"