Surviving Then Thriving: The Father's Lived Experience of Their Child's Diagnosis with Chronic Illness

Surviving Then Thriving: The Father's Lived Experience of Their Child's Diagnosis with Chronic Illness | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Surviving Then Thriving: The Father's Lived Experience of Their Child's Diagnosis with Chronic Illness Ashley Rivera This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8150635/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract The 2018 National Survey of Children’s Health revealed millions of children live with one or more chronic health conditions, yet research continues to focus on the mother’s experience in caring for their children. Father experiences are not as well documented, leaving fathers’ emotional responses, coping patterns, and caregiving roles underexplored. The purpose of this study was to explore the lived experience of fathers who had a child diagnosed with a chronic illness. This interpretive phenomenological study, guided by Parse’s Theory of Human Becoming, interviewed 7 fathers through 3rd party referral to uncover the essence of the phenomenon through heuristic interpretation. Fathers are surviving, then thriving, by taking ownership of their child’s future because of chronic illness. This study uncovers a transformative process not previously recognized in the literature to reveal how fathers adapt and engage in caregiving to foster resilience, growth, and empowerment that supports family stability and manage intergenerational health challenges. father grief lived experience chronic illness coping Introduction The 2018 National Survey of Children’s Health, conducted and uniquely reported by the United States Census Bureau, identified that a population estimate of 13,982,716 children have 1 current or lifelong health condition, and 13,161,678 children have 2 or more current or lifelong health conditions. However, the 2013 National Institute of Nursing Research Report, Building momentum: The science of end-of-life and palliative care , identified that existing publications on the paediatric population with lifelong health conditions, or chronic illness, have a research gap in knowledge of ethical, cultural and spiritual factors to better plan for long-term management. Long-term management is heavily influenced by patient-parent relationship patterns in response to chronic illness and the re-establishment of family equilibrium following chronic illness diagnosis (Williams-Reade et al., 2020). Understanding the perceptions of parental caregivers, both mothers and fathers, could enable professional care providers to plan and subsequently intervene, as appropriate, to promote optimal caregiving at home. However, most studies on parental reactions to a child's chronic illness diagnosis focus on the coping and management by the maternal figure. This article presents the findings of research to capture the father's lived experience of having a child diagnosed with chronic illness. Background In a grounded theory study on intra-family relationships, Williams-Reade et al. (2020) found that the emotional experience of fathers is often underestimated. For example, although many of the risk factors for post-partum depression in mothers and fathers are similar, at-risk fathers and the nurses caring for them are rarely educated on post-partum depression prevention, identification, and management (Altenau, 2020). Post-partum depression in fathers has significant and specific clinical research findings across the lifetime of the child, including emotional distress in infants and an increased long-term risk in children developing emotional and behavioral disorders, such as aggression and delays in social development (Scarff, 2019). In a systematic review of research on quality of life for parents of children with intellectual disability, Barratt et al. (2025) found that both parents often experience a disruption of emotional well-being that leads to loss of relationships, personally and professionally. However, the mothers are perceived as having a heavier caregiving burden, and the majority of community resources are heavily focused on relieving the strain on direct caregivers. By comparison, fathers found themselves responsible for financially supporting both the mother and the child while managing their own emotional challenges in isolation. In a study done by Russell & McCloskey (2016), both parents of children with Autism Spectrum Disorder expressed complex mixed emotions of anger, sadness, and guilt regarding the initial diagnosis period. Participants often experienced more intense emotions as a result of a negative diagnostic process and a lack of information during the diagnostic period. Mothers, who are historically more physically present during the diagnostic period, are often more readily available to clinicians and serve as the first source of information to fathers. Fathers typically receive their information from mothers, rather than clinicians, and often receive information that has been filtered by mothers. In a meta-analysis by Dunn et al. (2019), the difference between the mental health status of mothers and fathers is difficult to determine due to the small number of studies that capture the change from general mental health and anxiety in fathers. In fathers, having a child with delayed development correlates to elevated levels of stress, depression, anxiety, and clinical distress. The amount of the delay (mild, moderate, or severe) doesn’t seem to be a factor in moderating those levels. Instead, fathers appeared to be most anxious when they were not in paid employment, with socioeconomic hardship and income levels being predictive of depression and poor mental health (Dunn, 2019). Jeter & Turns (2022) described the adjustment to a child’s diagnosis to include grief as parents realized their loss of an imagined future for their child. In a study on parental grief, Barr (2012) found that mothers and fathers managed their emotions differently, with mothers externally grieving their loss as a couple, whereas fathers grieved internally and were more prone to self-blame for their loss. In a systematic review of men’s grief following pregnancy loss, Obst et al. (2020) found that men’s grief experiences are difficult to capture with current grief measures, as their challenges during the grieving period are complicated by a lack of social recognition for their care needs. These studies support that adjustment to chronic illness could be an emotional experience that may be experienced differently between mothers and fathers, indicating the need to understand the lived experience of a child’s diagnosis from a father’s perspective. Purpose The purpose of this study was to explore the lived experience of fathers who had a child diagnosed with a chronic illness. For this study, chronic illness was defined as a permanent condition interfering with normal physiological functioning that would require lifetime medical management. The study aims were to: 1) Explore the step-by-step thoughts and behaviors of fathers who had a child diagnosed with a chronic illness, 2) Describe similarities in the experiences of fathers who have had a child diagnosed with a chronic illness, and 3) Discover the essence of the father’s experience of having a child diagnosed with a chronic illness. Methodology This study utilized interpretive phenomenology guided by the Theory of Human Becoming. Theoretical Perspective The Theory of Human Becoming was used to provide a guiding strategy for interpreting the lived experience of fathers. According to Parse (2014), for any given phenomenon, the lived experience of individuals has common themes even though the description of the phenomenon varies. In each aim of the study, a principle of the human becoming theory (meaning, rhythmicity, and transcendence) provided guidance in coding and interpretation to discover the lived experience of fathers. Meaning , the first principle of the Theory of Human Becoming, is structured on the way individuals use their values to recognize the reality of the phenomenon (Parse, 2014). The first aim of this study is to explore the step-by-step reactions of fathers, which required defining the characteristics of the phenomenon. For this study, the phenomenon was initially characterized into three phases: 1) learning the child's diagnosis, 2) adjusting to care, and 3) planning for the future of a child with chronic illness. During the interview, fathers spoke circularly, recalling events from diagnosis in a mixed sequence. Following initial transcription, a time-oriented restructuring allows for the themes of the phenomenon to flow more freely during coding. During coding, the step-by-step organization of thoughts and behavior changes allowed for a clearer understanding of the father’s experience of time through linked emotion and action. Rhythmicity , the second principle of the Theory of Human Becoming, refers to the paradox of living moment-to-moment and the contradicting patterns experienced within a phenomenon (Parse, 2014). The second aim of this study was to describe similarities in the experiences of fathers who have had a child diagnosed with a chronic illness. This process honored that, although the details of each father's journey and their child's chronic illness are different, their experiences are interconnected through a shared phenomenon. Decisions to act or not act were constantly redefining, confirming, or altering the reality of fathers. According to Parse (2014), these decisions are part of learning, adjusting, and adapting within a phenomenon. By focusing on similarities between fathers’ lived experiences, the themes of the phenomenon were linked through common experience to conceptually move the research process from the participant's language into the language of the researcher. Transcendence , the third and final principle of the Theory of Human Becoming, acknowledges that change is constant due to experiential knowledge, or experiences that cause individuals to learn, thereby creating transformation within them (Parse, 2014). The decisions fathers made in response to their child’s diagnosis influenced how they acted as fathers and how they plan to act as fathers in the future. The participants in this study offered a reflective perspective by considering what has happened and what is yet to happen, allowing a more concrete overview of how their child’s diagnosis impacted them as a father to reveal the essence of the father’s lived experience of having a child diagnosed with chronic illness. Recruitment To be included in this study, participants were required to self-identify as meeting the following inclusion criteria: (1) father responsible for the care of a child (birth to age 17) with a chronic illness, (2) between 18 - 75 years of age, and (3) able to communicate in English. Participants were excluded if they had a major disability that affected clear communication. The researcher requested friends and family to fulfill a role as an intermediary by providing the contact email address for the study’s Principal Investigator to potential participants via a study recruitment flyer. This approach was chosen to prevent pressured participation and maintain recruitment at an arm's length, as the recruited participants did not have a direct relationship with the Principal Investigator. When potential participants made contact, they were screened for inclusion criteria and scheduled for personal interviews. Although face-to-face meetings were offered, all 7 participants chose to participate using synchronous web-assisted technology for interviews. Consents and demographic information were obtained in compliance with the approved IRB protocol. Data Collection To maximize participants’ freedom in guiding the research, the principal investigator asked a singular, broad, open-ended question to participants and limited prompts during the interview. The initial statement to all participants was: "Please tell me about how the diagnosis of your child's chronic illness impacted you and your role as a father." The principal investigator’s prompts were limited to: "Can you tell me more about...?", "Can you explain...?", "How does that relate to your role as a father?”, "How did that make you feel?", or a restatement of the participant's own words. To accurately report the perspectives captured, demographic information, such as age, marital status, insurance status, employment status, ethnicity, and religious beliefs, was collected using an IRB-approved questionnaire. To address rigor and credibility, this study employed member checking by providing participants with a copy of their personal transcripts to review and verify for accuracy in capturing their shared lived experience. Although participants were offered a time period of 5 days to review and request changes, no participants requested changes to their transcripts. This study also utilized peer debriefing with a doctoral nursing student with a similar research area and transcription experience and a supervising research mentor to review coding and lower-level abstraction in randomly selected transcriptions. Data Analysis Transcripts were first condensed to exclude the researcher's questions and statements. The remaining dialogue was then restructured into a participant's story, following the order of past, current, and future to capture step-by-step reactions in accordance with the first aim of the study. To achieve the second and tertiary aims of the study, coding and heuristic interpretation were conducted using MAXQDA 12 Standard Version data analysis software. Initial coding prioritized preserving participants’ own words for comparison of experiences. As similarities in the lived experiences of participants were recognized, connections were developed into overarching themes. Through further abstraction and heuristic interpretation following the Theory of Human Becoming, this study uncovered the essence of the father’s experience in a single statement. Results A total of 8 participants were recruited for the study; however, one participant initially consented and then decided not to participate. For the 7 final participants, all were between 26 to 55 years of age, all were married (although one is separated), three were Caucasian, two were Hispanic, and one was African American. Most participants were between 12 months to 5 years post-diagnosis of chronic illness for the child, with one participant having greater than 12 years since diagnosis. A full disclosure of demographics is available in Table 1. Table 1. Demographics a Total Participants 7 Age 26-35 3 36-45 2 46-55 1 56-65 1 Marital Status Married 7 Ethnicity Caucasian 4 African American 1 Hispanic 2 Religion Christian 4 Jewish 1 Other 1 None 1 Education Level High School Diploma 1 Bachelor's Degree 2 Graduate School 4 Length of Time Since Child's Diagnosis + 1 to 3 years 3 + 3 to 5 years 3 + 12 years 1 Employment Full-time 7 Insurance Status Employer 5 Private 2 a Items on the demographic questionnaire for which no participants identified have been omitted. The essence of the father’s lived experience when a child is diagnosed with chronic illness is surviving then thriving by taking ownership for their child’s future because of chronic illness . The essence details four step-by-step themes that are similar across participants’ lived experiences and are expressed as: (1) surviving, (2) thriving, (3) taking ownership, and (4) because of chronic illness. Each of these themes will be presented in the order in which they occur for the phenomenon. A table aligning the theoretical perspective to themes with exemplars from the participant’s own language is available in Table 2. Table 2. Relationship of Study Findings to Theoretical Perspectives Theory of Human Becoming Meaning Rhythmicity Transcendence Study Themes Surviving Thriving Ownership Because of Chronic Illness Participant Language “This being my little boy, I just had such high expectations.” “We still had our daughter who is so much still alive.” “I began realizing, I could do this, this is good.” “You would do the same thing if you were in our shoes.” “I felt like a piece of me died.” “We had to educate ourselves.” “I can help her live a long, healthy life.” “Really has been rewarding.” “I didn’t know how to tell my daughter.” “There’s really no choice.” “I had to get more involved day-to-day.” “He’s been such a blessing, just such a joy.” “This is something I can’t protect her from.” “When life throws you a curveball, you just deal.” “Any type of way I can fit into his life is how I am going to fit.” “What he needed was just different than other kids.” “It could cause cancer, it could cause…it really is life or death.” “Every kid needs time and attention.” “He can’t do it for himself, so I have to do it for him.” “It made us closer in a way and now we have an extra special bond.” Surviving Surviving the diagnosis of chronic illness was the first response for participants when their children were identified as “not normal”. Four participants discussed their perceptions of what characterizes a child as normal. One participant explained that normal children are “born close to term, reaching regular developmental goals on time.” Another participant expanded on the idea by explaining that normal children “sleep through the night, eat what they want/when they want, and partake in treats at school and home without worry.” Survival was the initial concern for many participants when their child was diagnosed. As one participant recalled, “This being my little boy, I just had such high expectations…there are certain times, even still to this day, we get a little sad.” Another participant explained, “to see her have to eat something differently and her feel differently is very, very hurtful to me.” The idea of hurt was repeated by several participants; many felt that their child being different was a personal failure. For one participant, the diagnosis of chronic illness came with worries, “I worry about him knowing how to put himself out there, knowing how to build new relationships, and being inclined to do it, and being good at it, and sort of increasing his chances that other good things to happen for his life.” Thriving Participants each identified a moment in which they began making the conscious decision to thrive. Thriving for participants meant reconciling their viewpoint on chronic illness through education and adaptation to better prepare for their child’s future. As one participant explained, “I'm a caretaker now, I'm no longer just a parent... I had to educate myself on how to take care of my child.” Compared to others, some participants felt that, after pursuing education and understanding how to help their children, the changes that come with a child’s chronic illness diagnosis were less challenging than they had previously perceived. Participants discussed thriving through a ‘new normal’. Using social resources and physical support, participants felt that they played a critical role in helping their children thrive. In comparison to the rejection people with chronic illness have historically perceived in society, one participant explained that, “in a way I almost fortunate these days because there are so many resources available to help and that it is somewhat defined, you feel like there are things that you can do that will help and have an effect, so among all the things that there could be, there's so many things that could be worse or harder.” Many participants felt that being able to support their children made them more successful, which preserves their own mental and physical health. According to one participant, “We've accumulated a team, we have a village, and we've said that from the beginning, we are going to need a village to raise this kid... the au pairs and the nurses. I try to give them as much responsibility as possible.” Taking Ownership Activities like learning to cook within their children’s limitations, finding games that their child could participate in, and advocating for their child’s inclusion in mainstream programs of education were all areas fathers took ownership of to help their children to succeed on a day-to-day basis. As one participant explained, he does his part as a father by “supporting him, showing him that I care about his health first and foremost, more than anything else, including my own. As a father, I just have to be there to support him and make sure he has all the tools to get through this.” Curiously, participants frequently also referred to feelings and sentiments of struggle, utilizing the phrase 'we', even with the specification to their own experience as a father. As far as their own feelings, many participants explained that this was the least of their concerns. One participant discussed that adjusting to his daughter’s chronic illness “wasn't about like me or my thoughts, like I didn't really care about that. I was sad for her, that she wasn't going to be able to do things that normal kids do.” Fathers often reported not having the primary role in their child’s care. Instead, many fathers took ownership that they felt they weren’t the best person to make decisions regarding how to manage their child's chronic illness. One participant explained, “my wife, to support him in going through this, stopped eating gluten as well. And no one ever asked me to do that... So eventually, over time, we started to have a pantry in our kitchen that was only for gluten-free food, and then I stopped bringing gluten food into the house. Now, it's gotten to the point where the entire house is gluten-free. We don't bring anything in that has gluten, so my son can feel safe in this house.” Another participant revealed that rather than hear the information on his daughter’s condition from medical professionals, his initial knowledge came from his wife, who “weaseled her way to find out and then started searching all over the internet.” In the same spirit, another participant explained that his wife is also the primary expert on their child’s needs, “I just have to be the supporting role for my wife, who has taken this whole thing by the horns and run with it.” Because of Chronic Illness Because of chronic illness, each participant gained experiential knowledge leading to transcendence. As one participant explained, “I went from not understanding what it is, to being concerned about what he's going through to now being happy that he's taken on a challenge and the way that he's responded.” However, the most remarkable finding of this study was that each participant reflected on their lived experience as having a positive impact on them as a person. For example, one participant felt that his lived experience “taught me patience that I would have not known had I not been in this situation.” For each participant story, heuristic interpretation guided by the Theory of Human Becoming led to a single statement of transcendence for that participant. Two exemplar participant stories have selected from the study to demonstrate how the single statement of transcendence reflects each participant’s lived experience, a transcendence that occurred because of their child’s chronic illness. For the protection of identity, names of people and locations have been scrubbed from these stories and replaced by appropriate nouns or pronouns. A table of transcendence statements for all participants is available in Table 3. Table 3. Statements of Transcendence for All Participants a Participant The transcendence of my lived experience is Anthony enabling a child to flourish against the odds at the self-sacrifice of personal fears for the sake of the child. Bradley reimagining the role of the father and discovering joy by releasing negative feelings. Carlos struggling to protect a child by minimizing perpetual risks, while valuing the child's joy as fragile and irreplaceable Daniel continuous involvement and dedicated support in return for gratefulness for every moment of a child's joy Edgar supporting the framework of the child's caregiving needs, accepting a secondary role, but remaining available with on-demand loving support. Frank prioritizing the child's needs over individual needs by supporting and role modeling the value of the child Gregory accepting the challenge, owning the work and finding a way to manage. a Names provided are pseudonyms Anthony's Story According to doctors, it's very good news, you take these pills, and wha-la, here is your solution. But, do we actually have a problem that we want to solve? Medication promises to enable her to perform better, but at the same time it would change her personality and the experiences she is having. Are there ways of not playing with a child's brain with chemicals? Do you want to change that thing that makes you different, which can be the thing that makes you successful eventually, or do you want to same everybody and make everybody have the same cognitive capacities in the same manner? My role as a father has always stayed pretty much the same- it is to guide her to become a happy person that has the tools to manage through life and become a contributing member of society. I give her as much love as possible- and that would be the same no matter what the diagnosis. So, our first solution is let's not go through any medication, let's try to figure out coping mechanisms that we can teach her and work with the teachers at the school to figure out coping mechanisms that work for her and work for them. But, where attention to detail is paramount, she started having a lot of trouble. She was falling behind. I want her to be happy and be a strong individual. And I want her to be able to have her own individuality and her own thought process and things. We decided we would medicate her and, in doing so, enable her to conform. I realized that she's going to be unique due to the collections of experiences she's going to have in her life and this is just one of the many experiences she going to have in life that are going to enable her to cope and create a personality, or way of being that make her the wonderful person that she is and will continue to be into the future. You are changing in order to meet a certain pattern and you don't know what the repercussions long-term are so, we'll see what happens with that. The transcendence of Anthony’s lived experience is enabling a child to flourish against the odds at the self-sacrifice of personal fears for the sake of the child. Bradley's Story After he was born, he was very premature and had to be in the hospital for almost 5 months. He was on monitors, oxygen, did the treatments, a number of medications, we had to spend a lot of time just having to make sure he got his medications on time and just monitoring. I think every parent wants for their child to be perfect, so a little disappointment, a little apprehension, but so everything is so unexpected. But as time goes on and though the development is slow, and it takes longer to get to the expected goals you get to see what a special blessing they are anyway. My little guy with all his defects is able to come along with all the intervention have such a great personality, he has really been a joy to work with even though we've had to put in more effort into school and everything. I really had to get much, much more involved in his day to day care, than I probably would have if there were no issues. with my first son who had no issues, and everything was on time and in target, she really ended up doing most of the parenting while I was at work. But with the youngest son, with all of his special needs, in spite of working, after getting home I really had to get a lot more involved in the parenting, especially with the academic endeavors, spend a lot on him with the homework and studying because he just took so much more effort to get him to where he should be. He's been such a blessing, such a joy with a great little personality, really has been rewarding. So, when the apprehension and, if you wanna say, disappointment goes, you really begin to enjoy them in a special way. So, in one sense, it was more an effort, but in another sense, it made us closer, we have an extra special bond. The transcendence of Bradley’s lived experience is redefining the role of the father and discovering joy by releasing negative feelings. Discussion The Theory of Human Becoming provided a guiding strategy for the interpretation of this study’s findings. While each principle of the Theory of Human Becoming was felt to be present in the lived experiences of the participants, fathers began with recognizing their child as not being ‘normal’, which is a phase that had not been previously considered to characterize the phenomenon. The Parse (2014) Theory of Human Becoming principle of meaning concentrates on utilizing values to structure the reality of a phenomenon. The ability to survive the diagnosis rather than be consumed by the loss is a critical piece in understanding how fathers experience their child’s chronic illness. Parents of children with chronic illness often endure profound and prolonged psychological, emotional, and physical strain that may foreshadow adverse outcomes across generations. Meta-analytic evidence reveals that these parents experience significantly elevated levels of anxiety and depression—35% of them meet clinical thresholds for depression compared to 19% of parents of healthy children (standardized mean differences: anxiety = .42; depression = .35) (Cohn et al., 2020). Parental strain undermines family resilience and alters parenting styles, frequently leading to over-involvement and reduced autonomy for the child as well as under-involvement and higher expectations for the child’s siblings, thereby disrupting family dynamics and adaptation over time (Qiu et al., 2021) In a study of parents with children with pain-related chronic illness, Ngo et al. (2022) found that parents coping with a child’s chronic pain report consuming exhaustion, uncertainty, and hopelessness, affecting their well-being and increased adoption of maladaptive caregiving patterns. The effects of a child’s chronic illness on parental functioning may perpetuate cycles of psychological distress, disrupted family resilience, and intergenerational health risks for both the chronically ill child and their siblings. Both themes of thriving and taking ownership relate to the second principle for the Theory of Human Becoming, rhythmicity . These themes encompass the living paradox within the participants’ lived experiences by both adapting and managing their children with chronic illness. As part of creating a ‘new normal’, fathers of children with chronic illness in these phases, thriving and taking ownership, reconcile their loss experienced in the first phase, surviving, with the very real child in front of them that is calling to them for help by recognizing and responding to the call. In a qualitative study of parents of children with chronic kidney disease, adaptation is facilitated by access to information, social support, family capability, and spiritual beliefs (Khorsandi et al, 2020). Dunn et al. (2019) discuss two types of coping strategies in fathers: (1) Emotion-focused coping and (2) Problem-focused coping. In the first type of coping, fathers manage their own emotions, but in the second type, fathers manage the illness by learning and seeking information. Neither kind of coping strategy made a difference in fathers’ mental health. However, fathers who psychologically accepted their child’s diagnosis had decreased levels of stress, anxiety, and depression (Dunn, 2019). Ownership of chronic illness is embodied through family empowerment, which has demonstrated significant benefits in enhancing parents' self-management skills, boosting their confidence, improving communication with healthcare providers, and strengthening overall family competence—factors that collectively foster a greater sense of control and contribute positively to children's clinical outcomes (Mulyana et al., 2023). Barratt et al. (2025) describe the importance of a ‘growth mind-set’ in working with parents, emphasizing the usefulness of attending to a parent’s personal growth and development as part of overcoming the challenges of parenting a child with extensive care needs. In practice, considering the value framework and lived experience of fathers can aid in the communication of diagnosis-specific education that recognizes what is truly important to fathers. Fathers prioritize information that helps them to understand or accept their child's diagnosis and teaches them how they can be involved in the management of their child's chronic illness. Thriving and taking ownership as fathers of children with chronic illness is demonstrated by active engagement in their child’s care needs. Even when fathers were unclear of exactly what their children needed to thrive, the fathers in this study demonstrated determination to get their child's needs met as part of their fatherly role. In this setting, parents find that caregiving becomes an opportunity to express their love for their child (Barratt et al., 2025). In the final theme of this phenomenon, ‘because of chronic illness’ directly relates the Parse (2014) Theory of Human Becoming principle of transcendence . Fathers retrospectively recognized that their lived experience was transformative to their perceived role as a father. Barratt et al. (2025) found that parents perceive that engagement in caregiving to a child with disability transformed them into better people than they might otherwise have been. Yet, pediatric chronic illness is a concerning factor in adverse childhood experience (ACEs) research. In a study of children with chronic pain, Christensen et al. (2021) found an intergenerational relationship between parental health experiences and their child’s chronic pain outcomes with epigenetic factors leading to significant changes in the expression of pain through objective biomarkers. Pediatric chronic illness can also increase the risk for abuse and neglect within the home. For example, in a retrospective chart review of 353 children diagnosed with failure to thrive, Tiwari et al. (2023) found high psychosocial risk levels for abuse and neglect, whether they were diagnosed with a chronic illness or not. The major challenge in pediatric chronic illness is the diagnosis phase, as it initiates an underappreciated grief cycle that can lead to medical trauma for every member of the family, particularly if the diagnosis is unexpected. Yet, the fathers in this study demonstrate a newfound determination through their child's diagnosis to grow as a father, adapt their own lives, and help their children thrive with chronic illness. The reactions of these fathers shape their children's responses to their chronic illness and their future medical challenges ahead. By the very definition, chronic illness is not a single battle, it is a war with victories and defeats that requires resiliency from both the individual and the family that supports that individual. Failing to consider the father’s perspective in practice could create a division in the family care team. When the father cannot truly support or engage in caregiving, an excess burden is placed upon the other parent. Understanding how to provide fathers with tools to fulfill their perceived familial role could help achieve better stability in the home environment and reduce the impact and onset of adverse childhood experiences (ACEs). Limitations The results of this study are not generalizable to the general public. The recruitment method utilized for this study further complicated the generalizability of these results, and findings may not represent the majority of fathers of children diagnosed with chronic illness. Implications This study demonstrated the effectiveness and breadth of 3rd party referral to access study participants. Fathers are a historically difficult population to access, and further research is critical to finding the best methodology for recruitment. Targeted recruitment, purposive sampling, and the usefulness of registries could also be considered for future research. Based upon the demographic breadth of this study, the ability to access both majority and minority ethnic groups, multiple education levels, and different religious affiliations are strengths to this study's recruitment measures. However, it could be important to collect a more purposive sample for specific demographics to establish consistency across comparable value frameworks, in specific populations, or in the setting of a specific diagnosis. Declarations IRB approval for the study was received by Florida Atlantic University IRB Committee. The authors report there are no competing interests to declare This project was completed in part during the corresponding author’s doctoral program under a Jonas Philanthropies Jonas Nurse Scholars Program. No other funding was received for this project. Author Contribution A.R. is the only author and sole contributor to this manuscript. Acknowledgement The corresponding author would like to express appreciation to L. Weglicki, PhD for encouragement and support during the project timeframe. Data Availability Summary data on which this article is based can be requested from the corresponding author. References Altenau, N. (2020). Paternal postpartum depression: Prevent and screen for depression in new fathers. American Nurse Today, 15 (1), 6–9 Barr, P. (2012). Negative self-conscious emotion and grief: An actor–partner analysis in couples bereaved by stillbirth or neonatal death. Psychology and Psychotherapy: Theory, Research and Practice, 85 (3), 310–326. https://doi.org/10.1111/j.2044-8341.2011.02034.x Barratt, M., Lewis, P., Duckworth, N., Jojo, N., Malecka, V., Tomsone, S., Rituma, D., & Wilson, N. J. (2025). Parental Experiences of Quality of Life When Caring for Their Children With Intellectual Disability: A Meta-Aggregation Systematic Review. Journal of applied research in intellectual disabilities : JARID , 38(1), e70005. https://doi.org/10.1111/jar.70005 Centers for Disease Control and Prevention & United States Census Bureau. (2019). 2018 National Survey of Child Health data release [Database]. https://www.census.gov Christensen, J., Beveridge, J. K., Wang, M., Orr, S. L., Noel, M., & Mychasiuk, R. (2021). A Pilot Study Investigating the Role of Gender in the Intergenerational Relationships between Gene Expression, Chronic Pain, and Adverse Childhood Experiences in a Clinical Sample of Youth with Chronic Pain. Epigenomes, 5 (2), 9. https://doi.org/10.3390/epigenomes5020009 Cohn, L. N., Pechlivanoglou, P., Lee, Y., Mahant, S., Orkin, J., Marson, A., & Cohen, E. (2020). Health Outcomes of Parents of Children with Chronic Illness: A Systematic Review and Meta-Analysis. The Journal of pediatrics , 218 , 166–177.e2. https://doi.org/10.1016/j.jpeds.2019.10.068 Dunn, K., Kinnear, D., Jahoda, A., & McConnachie, A. (2019). Mental health and well-being of fathers of children with intellectual disabilities: systematic review and meta-analysis. BJPsych open, 5 (6), e96. https://doi.org/10.1192/bjo.2019.75 Frye, L. (2016). Fathers’ experience with autism spectrum disorder: Nursing implications. Journal of Pediatric Health Care, 30 (5), 453–463. https://doi.org/10.1016/j.pedhc.2015.10.012 Jeter, K., & Turns, B. (2022). Grieving the Child That Never Was: Treatment of Ambiguous Loss in Parents of Children with Down Syndrome. Australian and New Zealand Journal of Family Therapy, 43 (2), 243–256. https://doi.org/10.1002/anzf.1488 Mulyana, A. M., Rakhmawati, W., Wartakusumah, R., Fitri, S. Y. R., & Juniarti, N. (2023). The Efficacy of Internet-Based Interventions in Family-Centered Empowerment Among Children with Chronic Diseases: A Mixed-Methods Systematic Review. Journal of multidisciplinary healthcare , 16 , 3415–3433. https://doi.org/10.2147/JMDH.S440082 National Institute of Nursing Research. (2013). Building momentum: The science of end-of-life and palliative care . U.S. Government Printing Office. Ngo, D., Aouad, P., Goodison-Farnsworth, M., Gorrie, A., Kenmuir, T., and T. Jaaniste. (2022). Impacts of paediatric chronic pain on parents: A qualitative study. Child: Care, Health and Development, 49 (4), 645-656. https://doi.org/10.1111/cch.13079 Parse, R. R. (2014). The humanbecoming paradigm: A transformational worldview . Discovery International Publication. Qiu, Y., Xu, L., Pan, Y., He, C., Huang, Y., Xu, H., Lu, Z., and Dong, C. (2021). Family resilience, parenting styles and psychosocial adjustment of children with chronic illness: A cross-sectional study. Frontiers in Psychiatry , 12, https://doi.org/10.3389/fpsyt.2021.646421 Russell, S., & McCloskey, C. R. (2016). Parent perceptions of care received by children with an autism spectrum disorder. Journal of Pediatric Nursing, 31 (1), 21–31. https://doi.org/10.1016/j.pedn.2015.11.002 Tiwari, M., Khan, W. K., Poulton, A., Dikshit, N., Gandham, S., Liu, A., & Bhurawala, H. (2023). Biopsychosocial characteristics of children admitted with failure to thrive. Journal of Paediatrics and Child Health, 59 (10), 1115–1121. https://doi.org/10.1111/jpc.16462 Williams-Reade, J. M., Tapanes, D., Distelberg, B. J., & Montgomery, S. (2020). Pediatric Chronic Illness Management: A Qualitative Dyadic Analysis of Adolescent Patient and Parent Illness Narratives . Journal of Marital and Family Therapy, 46 (1), 135–148. https://doi.org/10.1111/jmft.12377 Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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03:49:54","extension":"html","order_by":7,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":101309,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-8150635/v1/1eec22b6cd3848539c24312f.html"},{"id":97140020,"identity":"f4f61849-a127-4c08-a1ca-9c2533235714","added_by":"auto","created_at":"2025-12-01 10:03:36","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":606948,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8150635/v1/f083d6bd-fb95-4708-912e-a8695a3c88b6.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Surviving Then Thriving: The Father's Lived Experience of Their Child's Diagnosis with Chronic Illness","fulltext":[{"header":"Introduction","content":"\u003cp\u003eThe 2018 National Survey of Children\u0026rsquo;s Health, conducted and uniquely reported by the United States Census Bureau, identified that a population estimate of 13,982,716 children have 1 current or lifelong health condition, and 13,161,678 children have 2 or more current or lifelong health conditions. However, the 2013 National Institute of Nursing Research Report, \u003cem\u003eBuilding momentum: The science of end-of-life and palliative care\u003c/em\u003e, identified that existing publications on the paediatric population with lifelong health conditions, or chronic illness, have a research gap in knowledge of ethical, cultural and spiritual factors to better plan for long-term management. Long-term management is heavily influenced by patient-parent relationship patterns in response to chronic illness and the re-establishment of family equilibrium following chronic illness diagnosis (Williams-Reade et al., 2020). Understanding the perceptions of parental caregivers, both mothers and fathers, could enable professional care providers to plan and subsequently intervene, as appropriate, to promote optimal caregiving at home. However, most studies on parental reactions to a child\u0026apos;s chronic illness diagnosis focus on the coping and management by the maternal figure. This article presents the findings of research to capture the father\u0026apos;s lived experience of having a child diagnosed with chronic illness.\u003c/p\u003e\n\u003ch2\u003eBackground\u003c/h2\u003e\n\u003cp\u003eIn a grounded theory study on intra-family relationships, Williams-Reade et al. (2020) found that the emotional experience of fathers is often underestimated. For example, although many of the risk factors for post-partum depression in mothers and fathers are similar, at-risk fathers and the nurses caring for them are rarely educated on post-partum depression prevention, identification, and management (Altenau, 2020). Post-partum depression in fathers has significant and specific clinical research findings across the lifetime of the child, including emotional distress in infants and an increased long-term risk in children developing emotional and behavioral disorders, such as aggression and delays in social development (Scarff, 2019). In a systematic review of research on quality of life for parents of children with intellectual disability, Barratt et al. (2025) found that both parents often experience a disruption of emotional well-being that leads to loss of relationships, personally and professionally. However, the mothers are perceived as having a heavier caregiving burden, and the majority of community resources are heavily focused on relieving the strain on direct caregivers. By comparison, fathers found themselves responsible for financially supporting both the mother and the child while managing their own emotional challenges in isolation. In a study done by Russell \u0026amp; McCloskey (2016), both parents of children with Autism Spectrum Disorder expressed complex mixed emotions of anger, sadness, and guilt regarding the initial diagnosis period. Participants often experienced more intense emotions as a result of a negative diagnostic process and a lack of information during the diagnostic period. Mothers, who are historically more physically present during the diagnostic period, are often more readily available to clinicians and serve as the first source of information to fathers. Fathers typically receive their information from mothers, rather than clinicians, and often receive information that has been filtered by mothers.\u003c/p\u003e\n\u003cp\u003eIn a meta-analysis by Dunn et al. (2019), the difference between the mental health status of mothers and fathers is difficult to determine due to the small number of studies that capture the change from general mental health and anxiety in fathers. In fathers, having a child with delayed development correlates to elevated levels of stress, depression, anxiety, and clinical distress. The amount of the delay (mild, moderate, or severe) doesn\u0026rsquo;t seem to be a factor in moderating those levels. Instead, fathers appeared to be most anxious when they were not in paid employment, with socioeconomic hardship and income levels being predictive of depression and poor mental health (Dunn, 2019). Jeter \u0026amp; Turns (2022) described the adjustment to a child\u0026rsquo;s diagnosis to include grief as parents realized their loss of an imagined future for their child. In a study on parental grief, Barr (2012) found that mothers and fathers managed their emotions differently, with mothers externally grieving their loss as a couple, whereas fathers grieved internally and were more prone to self-blame for their loss. In a systematic review of men\u0026rsquo;s grief following pregnancy loss, Obst et al. (2020) found that men\u0026rsquo;s grief experiences are difficult to capture with current grief measures, as their challenges during the grieving period are complicated by a lack of social recognition for their care needs. These studies support that adjustment to chronic illness could be an emotional experience that may be experienced differently between mothers and fathers, indicating the need to understand the lived experience of a child\u0026rsquo;s diagnosis from a father\u0026rsquo;s perspective.\u0026nbsp;\u003c/p\u003e\n\u003ch2\u003ePurpose\u0026nbsp;\u003c/h2\u003e\n\u003cp\u003eThe purpose of this study was to explore the lived experience of fathers who had a child diagnosed with a chronic illness. For this study, chronic illness was defined as a permanent condition interfering with normal physiological functioning that would require lifetime medical management. The study aims were to: 1) Explore the step-by-step thoughts and behaviors of fathers who had a child diagnosed with a chronic illness, 2) Describe similarities in the experiences of fathers who have had a child diagnosed with a chronic illness, and 3) Discover the essence of the father\u0026rsquo;s experience of having a child diagnosed with a chronic illness.\u0026nbsp;\u003c/p\u003e"},{"header":"Methodology","content":"\u003cp\u003eThis study utilized interpretive phenomenology guided by the Theory of Human Becoming.\u0026nbsp;\u003c/p\u003e\n\u003ch2\u003eTheoretical Perspective\u003c/h2\u003e\n\u003cp\u003eThe Theory of Human Becoming was used to provide a guiding strategy for interpreting the lived experience of fathers. According to Parse\u003csup\u003e\u0026nbsp;\u003c/sup\u003e(2014), for any given phenomenon, the lived experience of individuals has common themes even though the description of the phenomenon varies. In each aim of the study, a principle of the human becoming theory (meaning, rhythmicity, and transcendence) provided guidance in coding and interpretation to discover the lived experience of fathers.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eMeaning\u003c/em\u003e, the first principle of the Theory of Human Becoming, is structured on the way individuals use their values to recognize the reality of the phenomenon (Parse, 2014). The first aim of this study is to explore the step-by-step reactions of fathers, which required defining the characteristics of the phenomenon. For this study, the phenomenon was initially characterized into three phases: 1) learning the child\u0026apos;s diagnosis, 2) adjusting to care, and 3) planning for the future of a child with chronic illness. During the interview, fathers spoke circularly, recalling events from diagnosis in a mixed sequence. Following initial transcription, a time-oriented restructuring allows for the themes of the phenomenon to flow more freely during coding. During coding, the step-by-step organization of thoughts and behavior changes allowed for a clearer understanding of the father\u0026rsquo;s experience of time through linked emotion and action.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eRhythmicity\u003c/em\u003e, the second principle of the Theory of Human Becoming, refers to the paradox of living moment-to-moment and the contradicting patterns experienced within a phenomenon (Parse, 2014). The second aim of this study was to describe similarities in the experiences of fathers who have had a child diagnosed with a chronic illness. This process honored that, although the details of each father\u0026apos;s journey and their child\u0026apos;s chronic illness are different, their experiences are interconnected through a shared phenomenon. Decisions to act or not act were constantly redefining, confirming, or altering the reality of fathers. According to Parse (2014), these decisions are part of learning, adjusting, and adapting within a phenomenon. By focusing on similarities between fathers\u0026rsquo; lived experiences, the themes of the phenomenon were linked through common experience to conceptually move the research process from the participant\u0026apos;s language into the language of the researcher.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eTranscendence\u003c/em\u003e, the third and final principle of the Theory of Human Becoming, acknowledges that change is constant due to experiential knowledge, or experiences that cause individuals to learn, thereby creating transformation within them (Parse, 2014). The decisions fathers made in response to their child\u0026rsquo;s diagnosis influenced how they acted as fathers and how they plan to act as fathers in the future. The participants in this study offered a reflective perspective by considering what has happened and what is yet to happen, allowing a more concrete overview of how their child\u0026rsquo;s diagnosis impacted them as a father to reveal the essence of the father\u0026rsquo;s lived experience of having a child diagnosed with chronic illness.\u003c/p\u003e\n\u003ch2\u003eRecruitment\u003c/h2\u003e\n\u003cp\u003eTo be included in this study, participants were required to self-identify as meeting the following inclusion criteria: (1) father responsible for the care of a child (birth to age 17) with a chronic illness, (2) between 18 - 75 years of age, and (3) able to communicate in English. Participants were excluded if they had a major disability that affected clear communication. The researcher requested friends and family to fulfill a role as an intermediary by providing the contact email address for the study\u0026rsquo;s Principal Investigator to potential participants via a study recruitment flyer. This approach was chosen to prevent pressured participation and maintain recruitment at an arm\u0026apos;s length, as the recruited participants did not have a direct relationship with the Principal Investigator. When potential participants made contact, they were screened for inclusion criteria and scheduled for personal interviews. Although face-to-face meetings were offered, all 7 participants chose to participate using synchronous web-assisted technology for interviews. Consents and demographic information were obtained in compliance with the approved IRB protocol.\u003c/p\u003e\n\u003ch2\u003eData Collection\u003c/h2\u003e\n\u003cp\u003eTo maximize participants\u0026rsquo; freedom in guiding the research, the principal investigator asked a singular, broad, open-ended question to participants and limited prompts during the interview. The initial statement to all participants was: \u0026quot;Please tell me about how the diagnosis of your child\u0026apos;s chronic illness impacted you and your role as a father.\u0026quot; The principal investigator\u0026rsquo;s prompts were limited to: \u0026quot;Can you tell me more about...?\u0026quot;, \u0026quot;Can you explain...?\u0026quot;, \u0026quot;How does that relate to your role as a father?\u0026rdquo;, \u0026quot;How did that make you feel?\u0026quot;, or a restatement of the participant\u0026apos;s own words. To accurately report the perspectives captured, demographic information, such as age, marital status, insurance status, employment status, ethnicity, and religious beliefs, was collected using an IRB-approved questionnaire.\u003c/p\u003e\n\u003cp\u003eTo address rigor and credibility, this study employed member checking by providing participants with a copy of their personal transcripts to review and verify for accuracy in capturing their shared lived experience. Although participants were offered a time period of 5 days to review and request changes, no participants requested changes to their transcripts. This study also utilized peer debriefing with a doctoral nursing student with a similar research area and transcription experience and a supervising research mentor to review coding and lower-level abstraction in randomly selected transcriptions.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData Analysis\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eTranscripts were first condensed to exclude the researcher\u0026apos;s questions and statements. The remaining dialogue was then restructured into a participant\u0026apos;s story, following the order of past, current, and future to capture step-by-step reactions in accordance with the first aim of the study. To achieve the second and tertiary aims of the study, coding and heuristic interpretation were conducted using MAXQDA 12 Standard Version data analysis software. Initial coding prioritized preserving participants\u0026rsquo; own words for comparison of experiences. As similarities in the lived experiences of participants were recognized, connections were developed into overarching themes. Through further abstraction and heuristic interpretation following the Theory of Human Becoming, this study uncovered the essence of the father\u0026rsquo;s experience in a single statement.\u0026nbsp;\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eA total of 8 participants were recruited for the study; however, one participant initially consented and then decided not to participate. For the 7 final participants, all were between 26 to 55 years of age, all were married (although one is separated), three were Caucasian, two were Hispanic, and one was African American. Most participants were between 12 months to 5 years post-diagnosis of chronic illness for the child, with one participant having greater than 12 years since diagnosis. A full disclosure of demographics is available in Table 1.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;Table 1. Demographics\u003csup\u003ea\u003c/sup\u003e\u003c/p\u003e\n\u003cdiv align=\"\"\u003e\n \u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"333\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTotal Participants\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e7\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003e26-35\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003e36-45\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003e46-55\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003e56-65\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMarital Status\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eEthnicity\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003eCaucasian\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003eAfrican American\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003eHispanic\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eReligion\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003eChristian\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003eJewish\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003eNone\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eEducation Level\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003eHigh School Diploma\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003eBachelor\u0026apos;s Degree\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003eGraduate School\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eLength of Time Since Child\u0026apos;s Diagnosis\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003e+ 1 to 3 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003e+ 3 to 5 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003e+ 12 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eEmployment\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003eFull-time\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eInsurance Status\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003eEmployer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 139px;\"\u003e\n \u003cp\u003ePrivate\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 64px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n\u003c/div\u003e\n\u003cp\u003e\u003cem\u003e\u003csup\u003ea\u003c/sup\u003e\u003c/em\u003e\u003cem\u003eItems on the demographic questionnaire for which no\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eparticipants identified have been omitted.\u003c/em\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe essence of the father\u0026rsquo;s lived experience when a child is diagnosed with chronic illness is \u003cem\u003esurviving then thriving by taking ownership for their child\u0026rsquo;s future because of chronic illness\u003c/em\u003e. The essence details four step-by-step themes that are similar across participants\u0026rsquo; lived experiences and are expressed as: (1) surviving, (2) thriving, (3) taking ownership, and (4) because of chronic illness. Each of these themes will be presented in the order in which they occur for the phenomenon. A table aligning the theoretical perspective to themes with exemplars from the participant\u0026rsquo;s own language is available in Table 2. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTable 2. Relationship of Study Findings to Theoretical Perspectives\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 96px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTheory of Human Becoming\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 120px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMeaning\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 245px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eRhythmicity\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 125px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTranscendence\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 96px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eStudy Themes\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 120px;\"\u003e\n \u003cp\u003eSurviving\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 120px;\"\u003e\n \u003cp\u003eThriving\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 125px;\"\u003e\n \u003cp\u003eOwnership\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 125px;\"\u003e\n \u003cp\u003eBecause of Chronic Illness\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"5\" style=\"width: 96px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eParticipant Language\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 120px;\"\u003e\n \u003cp\u003e\u0026ldquo;This being my little boy, I just had such high expectations.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 120px;\"\u003e\n \u003cp\u003e\u0026ldquo;We still had our daughter who is so much still alive.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 125px;\"\u003e\n \u003cp\u003e\u0026ldquo;I began realizing, I could do this, this is good.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 125px;\"\u003e\n \u003cp\u003e\u0026ldquo;You would do the same thing if you were in our shoes.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 120px;\"\u003e\n \u003cp\u003e\u0026ldquo;I felt like a piece of me died.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 120px;\"\u003e\n \u003cp\u003e\u0026ldquo;We had to educate ourselves.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 125px;\"\u003e\n \u003cp\u003e\u0026ldquo;I can help her live a long, healthy life.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 125px;\"\u003e\n \u003cp\u003e\u0026ldquo;Really has been rewarding.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 120px;\"\u003e\n \u003cp\u003e\u0026ldquo;I didn\u0026rsquo;t know how to tell my daughter.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 120px;\"\u003e\n \u003cp\u003e\u0026ldquo;There\u0026rsquo;s really no choice.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 125px;\"\u003e\n \u003cp\u003e\u0026ldquo;I had to get more involved day-to-day.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 125px;\"\u003e\n \u003cp\u003e\u0026ldquo;He\u0026rsquo;s been such a blessing, just such a joy.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 120px;\"\u003e\n \u003cp\u003e\u0026ldquo;This is something I can\u0026rsquo;t protect her from.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 120px;\"\u003e\n \u003cp\u003e\u0026ldquo;When life throws you a curveball, you just deal.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 125px;\"\u003e\n \u003cp\u003e\u0026ldquo;Any type of way I can fit into his life is how I am going to fit.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 125px;\"\u003e\n \u003cp\u003e\u0026ldquo;What he needed was just different than other kids.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 120px;\"\u003e\n \u003cp\u003e\u0026ldquo;It could cause cancer, it could cause\u0026hellip;it really is life or death.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 120px;\"\u003e\n \u003cp\u003e\u0026ldquo;Every kid needs time and attention.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 125px;\"\u003e\n \u003cp\u003e\u0026ldquo;He can\u0026rsquo;t do it for himself, so I have to do it for him.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 125px;\"\u003e\n \u003cp\u003e\u0026ldquo;It made us closer in a way and now we have an extra special bond.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003ch2\u003eSurviving\u003c/h2\u003e\n\u003cp\u003eSurviving the diagnosis of chronic illness was the first response for participants when their children were identified as \u0026ldquo;not normal\u0026rdquo;. \u0026nbsp;Four participants discussed their perceptions of what characterizes a child as normal. One participant explained that normal children are \u0026ldquo;born close to term, reaching regular developmental goals on time.\u0026rdquo; Another participant expanded on the idea by explaining that normal children \u0026ldquo;sleep through the night, eat what they want/when they want, and partake in treats at school and home without worry.\u0026rdquo;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSurvival was the initial concern for many participants when their child was diagnosed. As one participant recalled, \u0026ldquo;This being my little boy, I just had such high expectations\u0026hellip;there are certain times, even still to this day, we get a little sad.\u0026rdquo; Another participant explained, \u0026ldquo;to see her have to eat something differently and her feel differently is very, very hurtful to me.\u0026rdquo; The idea of hurt was repeated by several participants; many felt that their child being different was a personal failure. For one participant, the diagnosis of chronic illness came with worries, \u0026ldquo;I worry about him knowing how to put himself out there, knowing how to build new relationships, and being inclined to do it, and being good at it, and sort of increasing his chances that other good things to happen for his life.\u0026rdquo;\u003c/p\u003e\n\u003ch2\u003eThriving\u003c/h2\u003e\n\u003cp\u003eParticipants each identified a moment in which they began making the conscious decision to thrive. Thriving for participants meant reconciling their viewpoint on chronic illness through education and adaptation to better prepare for their child\u0026rsquo;s future. As one participant explained, \u0026ldquo;I\u0026apos;m a caretaker now, I\u0026apos;m no longer just a parent... I had to educate myself on how to take care of my child.\u0026rdquo; Compared to others, some participants felt that, after pursuing education and understanding how to help their children, the changes that come with a child\u0026rsquo;s chronic illness diagnosis were less challenging than they had previously perceived.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eParticipants discussed thriving through a \u0026lsquo;new normal\u0026rsquo;. Using social resources and physical support, participants felt that they played a critical role in helping their children thrive. In comparison to the rejection people with chronic illness have historically perceived in society, one participant explained that, \u0026ldquo;in a way I almost fortunate these days because there are so many resources available to help and that it is somewhat defined, you feel like there are things that you can do that will help and have an effect, so among all the things that there could be, there\u0026apos;s so many things that could be worse or harder.\u0026rdquo; Many participants felt that being able to support their children made them more successful, which preserves their own mental and physical health. According to one participant, \u0026ldquo;We\u0026apos;ve accumulated a team, we have a village, and we\u0026apos;ve said that from the beginning, we are going to need a village to raise this kid... the au pairs and the nurses. I try to give them as much responsibility as possible.\u0026rdquo;\u0026nbsp;\u003c/p\u003e\n\u003ch2\u003eTaking Ownership\u003c/h2\u003e\n\u003cp\u003eActivities like learning to cook within their children\u0026rsquo;s limitations, finding games that their child could participate in, and advocating for their child\u0026rsquo;s inclusion in mainstream programs of education were all areas fathers took ownership of to help their children to succeed on a day-to-day basis. As one participant explained, he does his part as a father by \u0026ldquo;supporting him, showing him that I care about his health first and foremost, more than anything else, including my own. As a father, I just have to be there to support him and make sure he has all the tools to get through this.\u0026rdquo;\u0026nbsp; Curiously, participants frequently also referred to feelings and sentiments of struggle, utilizing the phrase \u0026apos;we\u0026apos;, even with the specification to their own experience as a father. As far as their own feelings, many participants explained that this was the least of their concerns. One participant discussed that adjusting to his daughter\u0026rsquo;s chronic illness \u0026ldquo;wasn\u0026apos;t about like me or my thoughts, like I didn\u0026apos;t really care about that. I was sad for her, that she wasn\u0026apos;t going to be able to do things that normal kids do.\u0026rdquo;\u003c/p\u003e\n\u003cp\u003eFathers often reported not having the primary role in their child\u0026rsquo;s care. Instead, many fathers took ownership that they felt they weren\u0026rsquo;t the best person to make decisions regarding how to manage their child\u0026apos;s chronic illness. One participant explained, \u0026ldquo;my wife, to support him in going through this, stopped eating gluten as well. And no one ever asked me to do that... So eventually, over time, we started to have a pantry in our kitchen that was only for gluten-free food, and then I stopped bringing gluten food into the house. Now, it\u0026apos;s gotten to the point where the entire house is gluten-free. We don\u0026apos;t bring anything in that has gluten, so my son can feel safe in this house.\u0026rdquo; Another\u0026nbsp;participant revealed that rather than hear the information on his daughter\u0026rsquo;s condition from medical professionals, his initial knowledge came from his wife, who \u0026ldquo;weaseled her way to find out and then started searching all over the internet.\u0026rdquo; In the same spirit, another participant explained that his wife is also the primary expert on their child\u0026rsquo;s needs, \u0026ldquo;I just have to be the supporting role for my wife, who has taken this whole thing by the horns and run with it.\u0026rdquo;\u003c/p\u003e\n\u003ch2\u003eBecause of Chronic Illness\u003c/h2\u003e\n\u003cp\u003eBecause of chronic illness, each participant gained experiential knowledge leading to transcendence. As one participant explained, \u0026ldquo;I went from not understanding what it is, to being concerned about what he\u0026apos;s going through to now being happy that he\u0026apos;s taken on a challenge and the way that he\u0026apos;s responded.\u0026rdquo; However, the most remarkable finding of this study was that each participant reflected on their lived experience as having a positive impact on them as a person. For example, one participant felt that his lived experience \u0026ldquo;taught me patience that I would have not known had I not been in this situation.\u0026rdquo; For each participant story, heuristic interpretation guided by the Theory of Human Becoming led to a single statement of transcendence for that participant. Two exemplar participant stories have selected from the study to demonstrate how the single statement of transcendence reflects each participant\u0026rsquo;s lived experience, a transcendence that occurred because of their child\u0026rsquo;s chronic illness. For the protection of identity, names of people and locations have been scrubbed from these stories and replaced by appropriate nouns or pronouns. A table of transcendence statements for all participants is available in Table 3.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTable 3. Statements of Transcendence for All Participants\u003csup\u003ea\u003c/sup\u003e\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"527\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 527px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"527\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eParticipant\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 396px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eThe transcendence of my lived experience is\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAnthony\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 396px;\"\u003e\n \u003cp\u003e\u0026nbsp;enabling a child to flourish against the odds at the self-sacrifice of personal fears for the sake of the child.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eBradley\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 396px;\"\u003e\n \u003cp\u003ereimagining the role of the father and discovering joy by releasing negative feelings.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCarlos\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 396px;\"\u003e\n \u003cp\u003estruggling to protect a child by minimizing perpetual risks, while valuing the child\u0026apos;s joy as fragile and irreplaceable\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eDaniel\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 396px;\"\u003e\n \u003cp\u003econtinuous involvement and dedicated support in return for gratefulness for every moment of a child\u0026apos;s joy\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eEdgar\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 396px;\"\u003e\n \u003cp\u003esupporting the framework of the child\u0026apos;s caregiving needs, accepting a secondary role, but remaining available with on-demand loving support.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eFrank\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 396px;\"\u003e\n \u003cp\u003eprioritizing the child\u0026apos;s needs over individual needs by supporting and role modeling the value of the child\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eGregory\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 396px;\"\u003e\n \u003cp\u003eaccepting the challenge, owning the work and finding a way to manage.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003cp\u003e\u003csup style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; white-space: normal; background-color: rgb(255, 255, 255); text-decoration-thickness: initial; text-decoration-style: initial; text-decoration-color: initial;'\u003ea\u003c/sup\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; white-space: normal; background-color: rgb(255, 255, 255); text-decoration-thickness: initial; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003eNames provided are pseudonyms\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003ch3\u003eAnthony\u0026apos;s Story\u003c/h3\u003e\n\u003cp\u003eAccording to doctors, it\u0026apos;s very good news, you take these pills, and wha-la, here is your solution. But, do we actually have a problem that we want to solve? Medication promises to enable her to perform better, but at the same time it would change her personality and the experiences she is having. Are there ways of not playing with a child\u0026apos;s brain with chemicals? Do you want to change that thing that makes you different, which can be the thing that makes you successful eventually, or do you want to same everybody and make everybody have the same cognitive capacities in the same manner? My role as a father has always stayed pretty much the same- it is to guide her to become a happy person that has the tools to manage through life and become a contributing member of society. I give her as much love as possible- and that would be the same no matter what the diagnosis. So, our first solution is let\u0026apos;s not go through any medication, let\u0026apos;s try to figure out coping mechanisms that we can teach her and work with the teachers at the school to figure out coping mechanisms that work for her and work for them. But, where attention to detail is paramount, she started having a lot of trouble. She was falling behind. I want her to be happy and be a strong individual. And I want her to be able to have her own individuality and her own thought process and things. We decided we would medicate her and, in doing so, enable her to conform. I realized that she\u0026apos;s going to be unique due to the collections of experiences she\u0026apos;s going to have in her life and this is just one of the many experiences she going to have in life that are going to enable her to cope and create a personality, or way of being that make her the wonderful person that she is and will continue to be into the future. You are changing in order to meet a certain pattern and you don\u0026apos;t know what the repercussions long-term are so, we\u0026apos;ll see what happens with that.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eThe transcendence of Anthony\u0026rsquo;s lived experience\u003c/em\u003e\u003cem\u003e\u0026nbsp;is enabling a child to flourish against the odds at the self-sacrifice of personal fears for the sake of the child.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eBradley\u0026apos;s Story\u003c/p\u003e\n\u003cp\u003eAfter he was born, he was very premature and had to be in the hospital for almost 5 months. He was on monitors, oxygen, did the treatments, a number of medications, we had to spend a lot of time just having to make sure he got his medications on time and just monitoring. I think every parent wants for their child to be perfect, so a little disappointment, a little apprehension, but so everything is so unexpected. But as time goes on and though the development is slow, and it takes longer to get to the expected goals you get to see what a special blessing they are anyway. My little guy with all his defects is able to come along with all the intervention have such a great personality, he has really been a joy to work with even though we\u0026apos;ve had to put in more effort into school and everything. I really had to get much, much more involved in his day to day care, than I probably would have if there were no issues. with my first son who had no issues, and everything was on time and in target, she really ended up doing most of the parenting while I was at work. But with the youngest son, with all of his special needs, in spite of working, after getting home I really had to get a lot more involved in the parenting, especially with the academic endeavors, spend a lot on him with the homework and studying because he just took so much more effort to get him to where he should be. He\u0026apos;s been such a blessing, such a joy with a great little personality, really has been rewarding. So, when the apprehension and, if you wanna say, disappointment goes, you really begin to enjoy them in a special way. So, in one sense, it was more an effort, but in another sense, it made us closer, we have an extra special bond.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eThe transcendence of Bradley\u0026rsquo;s lived experience is redefining the role of the father and discovering joy by releasing negative feelings.\u003c/em\u003e\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe Theory of Human Becoming provided a guiding strategy for the interpretation of this study\u0026rsquo;s findings. While each principle of the Theory of Human Becoming was felt to be present in the lived experiences of the participants, fathers began with recognizing their child as not being \u0026lsquo;normal\u0026rsquo;, which is a phase that had not been previously considered to characterize the phenomenon. The Parse\u003csup\u003e\u0026nbsp;\u003c/sup\u003e(2014) Theory of Human Becoming principle of \u003cem\u003emeaning\u003c/em\u003e concentrates on utilizing values to structure the reality of a phenomenon. The ability to survive the diagnosis rather than be consumed by the loss is a critical piece in understanding how fathers experience their child\u0026rsquo;s chronic illness. Parents of children with chronic illness often endure profound and prolonged psychological, emotional, and physical strain that may foreshadow adverse outcomes across generations. Meta-analytic evidence reveals that these parents experience significantly elevated levels of anxiety and depression\u0026mdash;35% of them meet clinical thresholds for depression compared to 19% of parents of healthy children (standardized mean differences: anxiety = .42; depression = .35) (Cohn et al., 2020). Parental strain undermines family resilience and alters parenting styles, frequently leading to over-involvement and reduced autonomy for the child as well as under-involvement and higher expectations for the child\u0026rsquo;s siblings, thereby disrupting family dynamics and adaptation over time (Qiu et al., 2021) In a study of parents with children with pain-related chronic illness, Ngo et al. (2022) found that parents coping with a child\u0026rsquo;s chronic pain report consuming exhaustion, uncertainty, and hopelessness, affecting their well-being and increased adoption of maladaptive caregiving patterns. The effects of a child\u0026rsquo;s chronic illness on parental functioning may perpetuate cycles of psychological distress, disrupted family resilience, and intergenerational health risks for both the chronically ill child and their siblings.\u003c/p\u003e\n\u003cp\u003eBoth themes of thriving and taking ownership relate to the second principle for the Theory of Human Becoming, \u003cem\u003erhythmicity\u003c/em\u003e. These themes encompass the living paradox within the participants\u0026rsquo; lived experiences by both adapting and managing their children with chronic illness. As part of creating a \u0026lsquo;new normal\u0026rsquo;, fathers of children with chronic illness in these phases, thriving and taking ownership, reconcile their loss experienced in the first phase, surviving, with the very real child in front of them that is calling to them for help by recognizing and responding to the call. In a qualitative study of parents of children with chronic kidney disease, adaptation is facilitated by access to information, social support, family capability, and spiritual beliefs (Khorsandi et al, 2020). Dunn et al. (2019) discuss two types of coping strategies in fathers: (1) Emotion-focused coping and (2) Problem-focused coping. In the first type of coping, fathers manage their own emotions, but in the second type, fathers manage the illness by learning and seeking information. Neither kind of coping strategy made a difference in fathers\u0026rsquo; mental health. However, fathers who psychologically accepted their child\u0026rsquo;s diagnosis had decreased levels of stress, anxiety, and depression (Dunn, 2019).\u003c/p\u003e\n\u003cp\u003eOwnership of chronic illness is embodied through family empowerment, which has demonstrated significant benefits in enhancing parents\u0026apos; self-management skills, boosting their confidence, improving communication with healthcare providers, and strengthening overall family competence\u0026mdash;factors that collectively foster a greater sense of control and contribute positively to children\u0026apos;s clinical outcomes (Mulyana et al., 2023). Barratt et al. (2025) describe the importance of a \u0026lsquo;growth mind-set\u0026rsquo; in working with parents, emphasizing the usefulness of attending to a parent\u0026rsquo;s personal growth and development as part of overcoming the challenges of parenting a child with extensive care needs. \u0026nbsp;In practice, considering the value framework and lived experience of fathers can aid in the communication of diagnosis-specific education that recognizes what is truly important to fathers. Fathers prioritize information that helps them to understand or accept their child\u0026apos;s diagnosis and teaches them how they can be involved in the management of their child\u0026apos;s chronic illness. Thriving and taking ownership as fathers of children with chronic illness is demonstrated by active engagement in their child\u0026rsquo;s care needs. Even when fathers were unclear of exactly what their children needed to thrive, the fathers in this study demonstrated determination to get their child\u0026apos;s needs met as part of their fatherly role. In this setting, parents find that caregiving becomes an opportunity to express their love for their child (Barratt et al., 2025).\u003c/p\u003e\n\u003cp\u003eIn the final theme of this phenomenon, \u0026lsquo;because of chronic illness\u0026rsquo; directly relates the Parse\u003csup\u003e\u0026nbsp;\u003c/sup\u003e(2014) Theory of Human Becoming principle of \u003cem\u003etranscendence\u003c/em\u003e. Fathers retrospectively recognized that their lived experience was transformative to their perceived role as a father. \u0026nbsp; Barratt et al. (2025) found that parents perceive that engagement in caregiving to a child with disability transformed them into better people than they might otherwise have been. Yet, pediatric chronic illness is a concerning factor in adverse childhood experience (ACEs) research. In a study of children with chronic pain, Christensen et al. (2021) found an intergenerational relationship between parental health experiences and their child\u0026rsquo;s chronic pain outcomes with epigenetic factors leading to significant changes in the expression of pain through objective biomarkers. Pediatric chronic illness can also increase the risk for abuse and neglect within the home. For example, in a retrospective chart review of 353 children diagnosed with failure to thrive, Tiwari et al. (2023) found high psychosocial risk levels for abuse and neglect, whether they were diagnosed with a chronic illness or not. The major challenge in pediatric chronic illness is the diagnosis phase, as it initiates an underappreciated grief cycle that can lead to medical trauma for every member of the family, particularly if the diagnosis is unexpected. Yet, the fathers in this study demonstrate a newfound determination through their child\u0026apos;s diagnosis to grow as a father, adapt their own lives, and help their children thrive with chronic illness. The reactions of these fathers shape their children\u0026apos;s responses to their chronic illness and their future medical challenges ahead. By the very definition, chronic illness is not a single battle, it is a war with victories and defeats that requires resiliency from both the individual and the family that supports that individual. Failing to consider the father\u0026rsquo;s perspective in practice could create a division in the family care team. When the father cannot truly support or engage in caregiving, an excess burden is placed upon the other parent. Understanding how to provide fathers with tools to fulfill their perceived familial role could help achieve better stability in the home environment and reduce the impact and onset of adverse childhood experiences (ACEs).\u003c/p\u003e\n\u003ch2\u003eLimitations\u003c/h2\u003e\n\u003cp\u003eThe results of this study are not generalizable to the general public. The recruitment method utilized for this study further complicated the generalizability of these results, and findings may not represent the majority of fathers of children diagnosed with chronic illness.\u0026nbsp;\u003c/p\u003e\n\u003ch2\u003eImplications\u003c/h2\u003e\n\u003cp\u003eThis study demonstrated the effectiveness and breadth of 3rd party referral to access study participants. Fathers are a historically difficult population to access, and further research is critical to finding the best methodology for recruitment. Targeted recruitment, purposive sampling, and the usefulness of registries could also be considered for future research. Based upon the demographic breadth of this study, the ability to access both majority and minority ethnic groups, multiple education levels, and different religious affiliations are strengths to this study\u0026apos;s recruitment measures. However, it could be important to collect a more purposive sample for specific demographics to establish consistency across comparable value frameworks, in specific populations, or in the setting of a specific diagnosis.\u0026nbsp;\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cspan\u003eIRB approval for the study was received by Florida Atlantic University IRB Committee.\u003c/span\u003e\u003c/p\u003e\u003cp\u003eThe authors report there are no competing interests to declare\u003c/p\u003e\n\u003cp\u003eThis project was completed in part during the corresponding author\u0026rsquo;s doctoral program under a Jonas Philanthropies Jonas Nurse Scholars Program. No other funding was received for this project.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eA.R. is the only author and sole contributor to this manuscript.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eThe corresponding author would like to express appreciation to L. Weglicki, PhD for encouragement and support during the project timeframe.\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eSummary data on which this article is based can be requested from the corresponding author.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eAltenau, N. (2020). Paternal postpartum depression: Prevent and screen for depression in new fathers. \u003cem\u003eAmerican Nurse Today, 15\u003c/em\u003e(1), 6\u0026ndash;9\u003c/li\u003e\n \u003cli\u003eBarr, P. (2012). Negative self-conscious emotion and grief: An actor\u0026ndash;partner analysis in couples bereaved by stillbirth or neonatal death. \u003cem\u003ePsychology and Psychotherapy: Theory, Research and Practice, 85\u003c/em\u003e(3), 310\u0026ndash;326. https://doi.org/10.1111/j.2044-8341.2011.02034.x\u003c/li\u003e\n \u003cli\u003eBarratt, M., Lewis, P., Duckworth, N., Jojo, N., Malecka, V., Tomsone, S., Rituma, D., \u0026amp; Wilson, N. J. (2025). Parental Experiences of Quality of Life When Caring for Their Children With Intellectual Disability: A Meta-Aggregation Systematic Review. \u003cem\u003eJournal of applied research in intellectual disabilities : JARID\u003c/em\u003e, 38(1), e70005. https://doi.org/10.1111/jar.70005\u003c/li\u003e\n \u003cli\u003eCenters for Disease Control and Prevention \u0026amp; United States Census Bureau. (2019). \u003cem\u003e2018 National Survey of Child Health data release\u003c/em\u003e [Database]. https://www.census.gov\u003c/li\u003e\n \u003cli\u003eChristensen, J., Beveridge, J. K., Wang, M., Orr, S. L., Noel, M., \u0026amp; Mychasiuk, R. (2021). A Pilot Study Investigating the Role of Gender in the Intergenerational Relationships between Gene Expression, Chronic Pain, and Adverse Childhood Experiences in a Clinical Sample of Youth with Chronic Pain. \u003cem\u003eEpigenomes, 5\u003c/em\u003e(2), 9. https://doi.org/10.3390/epigenomes5020009\u003c/li\u003e\n \u003cli\u003eCohn, L. N., Pechlivanoglou, P., Lee, Y., Mahant, S., Orkin, J., Marson, A., \u0026amp; Cohen, E. (2020). Health Outcomes of Parents of Children with Chronic Illness: A Systematic Review and Meta-Analysis. \u003cem\u003eThe Journal of pediatrics\u003c/em\u003e, \u003cem\u003e218\u003c/em\u003e, 166\u0026ndash;177.e2. https://doi.org/10.1016/j.jpeds.2019.10.068\u003c/li\u003e\n \u003cli\u003eDunn, K., Kinnear, D., Jahoda, A., \u0026amp; McConnachie, A. (2019). Mental health and well-being of fathers of children with intellectual disabilities: systematic review and meta-analysis. \u003cem\u003eBJPsych open, 5\u003c/em\u003e(6), e96. https://doi.org/10.1192/bjo.2019.75\u003c/li\u003e\n \u003cli\u003eFrye, L. (2016). Fathers\u0026rsquo; experience with autism spectrum disorder: Nursing implications. \u003cem\u003eJournal of Pediatric Health Care, 30\u003c/em\u003e(5), 453\u0026ndash;463. https://doi.org/10.1016/j.pedhc.2015.10.012\u003c/li\u003e\n \u003cli\u003eJeter, K., \u0026amp; Turns, B. (2022). Grieving the Child That Never Was: Treatment of Ambiguous Loss in Parents of Children with Down Syndrome. \u003cem\u003eAustralian and New Zealand Journal of Family Therapy, 43\u003c/em\u003e(2), 243\u0026ndash;256. https://doi.org/10.1002/anzf.1488\u003c/li\u003e\n \u003cli\u003eMulyana, A. M., Rakhmawati, W., Wartakusumah, R., Fitri, S. Y. R., \u0026amp; Juniarti, N. (2023). The Efficacy of Internet-Based Interventions in Family-Centered Empowerment Among Children with Chronic Diseases: A Mixed-Methods Systematic Review. \u003cem\u003eJournal of multidisciplinary healthcare\u003c/em\u003e, \u003cem\u003e16\u003c/em\u003e, 3415\u0026ndash;3433. https://doi.org/10.2147/JMDH.S440082\u003c/li\u003e\n \u003cli\u003eNational Institute of Nursing Research. (2013). \u003cem\u003eBuilding momentum: The science of end-of-life and palliative care\u003c/em\u003e. U.S. Government Printing Office.\u003c/li\u003e\n \u003cli\u003eNgo, D., Aouad, P., Goodison-Farnsworth, M., Gorrie, A., Kenmuir, T., and T. Jaaniste. (2022). Impacts of paediatric chronic pain on parents: A qualitative study. \u003cem\u003eChild: Care, Health and Development, 49\u003c/em\u003e(4), 645-656. https://doi.org/10.1111/cch.13079\u003c/li\u003e\n \u003cli\u003eParse, R. R. (2014). \u003cem\u003eThe humanbecoming paradigm: A transformational worldview\u003c/em\u003e. Discovery International Publication.\u003c/li\u003e\n \u003cli\u003eQiu, Y., Xu, L., Pan, Y., He, C., Huang, Y., Xu, H., Lu, Z., and Dong, C. (2021). Family resilience, parenting styles and psychosocial adjustment of children with chronic illness: A cross-sectional study. \u003cem\u003eFrontiers in Psychiatry\u003c/em\u003e, 12, https://doi.org/10.3389/fpsyt.2021.646421\u003c/li\u003e\n \u003cli\u003eRussell, S., \u0026amp; McCloskey, C. R. (2016). Parent perceptions of care received by children with an autism spectrum disorder. \u003cem\u003eJournal of Pediatric Nursing, 31\u003c/em\u003e(1), 21\u0026ndash;31. https://doi.org/10.1016/j.pedn.2015.11.002\u003c/li\u003e\n \u003cli\u003eTiwari, M., Khan, W. K., Poulton, A., Dikshit, N., Gandham, S., Liu, A., \u0026amp; Bhurawala, H. (2023). Biopsychosocial characteristics of children admitted with failure to thrive. \u003cem\u003eJournal of Paediatrics and Child Health, 59\u003c/em\u003e(10), 1115\u0026ndash;1121. https://doi.org/10.1111/jpc.16462\u003c/li\u003e\n \u003cli\u003eWilliams-Reade, J. M., Tapanes, D., Distelberg, B. J., \u0026amp; Montgomery, S. (2020). Pediatric Chronic Illness Management: A Qualitative Dyadic Analysis of Adolescent Patient and Parent Illness Narratives\u003cem\u003e. Journal of Marital and Family Therapy, 46\u003c/em\u003e(1), 135\u0026ndash;148. https://doi.org/10.1111/jmft.12377\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":false,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"father, grief, lived experience, chronic illness, coping","lastPublishedDoi":"10.21203/rs.3.rs-8150635/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8150635/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"The 2018 National Survey of Children’s Health revealed millions of children live with one or more chronic health conditions, yet research continues to focus on the mother’s experience in caring for their children. Father experiences are not as well documented, leaving fathers’ emotional responses, coping patterns, and caregiving roles underexplored. The purpose of this study was to explore the lived experience of fathers who had a child diagnosed with a chronic illness. This interpretive phenomenological study, guided by Parse’s Theory of Human Becoming, interviewed 7 fathers through 3rd party referral to uncover the essence of the phenomenon through heuristic interpretation. Fathers are surviving, then thriving, by taking ownership of their child’s future because of chronic illness. This study uncovers a transformative process not previously recognized in the literature to reveal how fathers adapt and engage in caregiving to foster resilience, growth, and empowerment that supports family stability and manage intergenerational health challenges.","manuscriptTitle":"Surviving Then Thriving: The Father's Lived Experience of Their Child's Diagnosis with Chronic Illness","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-11-24 03:49:49","doi":"10.21203/rs.3.rs-8150635/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"7aaf3921-a84a-4f4f-874e-7add8b827062","owner":[],"postedDate":"November 24th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-11-29T13:38:47+00:00","versionOfRecord":[],"versionCreatedAt":"2025-11-24 03:49:49","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8150635","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8150635","identity":"rs-8150635","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}