Same Storm, Different Boats: A Qualitative Study of the Lived Experiences And Needs Of Parent Caregivers Of Children With Cystic Fibrosis

Background: Approximately 1,500 children in Canada are diagnosed with cystic fibrosis (CF) 1 . A childhood CF diagnosis has substantial implications for the mental health of parent caregivers (referred to as parents herein), who report elevated levels of emotional distress, stress, depression, and anxiety 2 . Tailored, psychosocial resources for this population are scarce and barriers exist to accessing community mental health services 3 . Internet-delivered programs present a promising mode of mental health resource delivery for this specialized population, but none are available in Canada. To inform the development of such a resource, the present study examined the lived experiences and information and resource needs of parents of children with CF. There were no established hypotheses due to the exploratory nature of the study. Methods: Twenty-three parents ( M age = 45.65, SD = 8.91) in Canada participated in the study. Each participant completed a consent form, demographic questionnaires, and a semi-structured interview. All interviews were audio-recorded, transcribed verbatim, and analyzed using reflexive thematic analysis. Results: Six major themes were generated: (1) challenges, (2) needs, (3) emotions and coping, (4) healthcare experiences, (5) unique parenting experiences, and (6) Internet-delivered resource considerations. Subthemes were also generated for each major theme. Conclusions: These findings highlight the unique lived experiences and needs of parents of children with CF. The results indicate that parents would value an Internet-delivered resource that provides tailored information about several topics. The information gained from this study will be utilized to develop an accessible, tailored, Internet-delivered resource for parents of children with CF. Same Storm, Different Boats: A Qualitative Study of the Lived Experiences And Needs Of Parent Caregivers Of Children With Cystic Fibrosis Jasleen Kaur, B.Sc., 1 Andrea Hedlund, B.Mus., B.A., 1 Anna Dollimount, M.Sc., 1 Katelyn Lockinger, B.A., 1 Shelby Shivak, M.A., 1 Hilary A. Power, M.A., 1 Heather Switzer, PhD., 2 Cori Carey, B.A., 1 Kimberley Evans, 1 Julian S. Tam, MD, FRCPC, 3 & Kristi D. Wright, PhD. 1 1 Department of Psychology, University of Regina, Regina, SK, Canada 2 Wascana Rehabilitation Centre, Saskatchewan Health Authority, Regina, SK, Canada 3 College of Medicine, University of Saskatchewan, Saskatoon, SK, Canada Study performed at the University of Regina, Regina, SK, Canada The authors have no conflicts of interest to disclose.

Cystic Fibrosis, Parent Caregivers, Lived Experiences, Qualitative Design, Resource Development Emails of Authors: Kaur: [email protected], Hedlund: [email protected], Dollimount: [email protected], Lockinger: [email protected], Shivak: [email protected], Power: [email protected], Switzer: [email protected], Carey: [email protected], Evans: [email protected], Tam: [email protected], Wright: [email protected] Authorship Contribution : JK and KDW contributed to the conceptualization of the study, methodology, data analysis and interpretation, manuscript preparation and revision, and funding acquisition. AH contributed to data analysis and manuscript revision. AD contributed to data analysis, manuscript preparation, and revision. KL contributed to manuscript preparation and revision. SS, HAP, HS, CC, KE, and JST contributed to conceptualization, manuscript revision, and funding acquisition. Funding: This work was supported by the Social Sciences and Humanities Research Council, the Saskatchewan Health Research Foundation [grant number: 6339], and the Saskatchewan Centre for Patient-Oriented Research. Presentations: The findings from this study will be presented as a poster at the North American Cystic Fibrosis Conference from October 22 – 25, 2025 [poster number: 528]. Corresponding Author: Dr. Kristi D. Wright, Department of Psychology, University of Regina, Regina, Saskatchewan, CANADA, S4S 0A2; 306-585-4180; [email protected]; ORCID 0000-0002-8858-3452

Background: Approximately 1,500 children in Canada are diagnosed with cystic fibrosis (CF) 1 . A childhood CF diagnosis has substantial implications for the mental health of parent caregivers (referred to as parents herein), who report elevated levels of emotional distress, stress, depression, and anxiety 2 . Tailored, psychosocial resources for this population are scarce and barriers exist to accessing community mental health services 3 . Internet-delivered programs present a promising mode of mental health resource delivery for this specialized population, but none are available in Canada. To inform the development of such a resource, the present study examined the lived experiences and information and resource needs of parents of children with CF. There were no established hypotheses due to the exploratory nature of the study. Methods: Twenty-three parents ( M age = 45.65, SD = 8.91) in Canada participated in the study. Each participant completed a consent form, demographic questionnaires, and a semi-structured interview. All interviews were audio-recorded, transcribed verbatim, and analyzed using reflexive thematic analysis. Results: Six major themes were generated: (1) challenges, (2) needs, (3) emotions and coping, (4) healthcare experiences, (5) unique parenting experiences, and (6) Internet-delivered resource considerations. Subthemes were also generated for each major theme. Conclusions: These findings highlight the unique lived experiences and needs of parents of children with CF. The results indicate that parents would value an Internet-delivered resource that provides tailored information about several topics. The information gained from this study will be utilized to develop an accessible, tailored, Internet-delivered resource for parents of children with CF. 1. Background Cystic fibrosis (CF) is a life-limiting disease impacting over 1,500 Canadian children 1 . CF affects the respiratory, digestive, and reproductive systems, resulting in symptoms such as persistent coughing, malnutrition, and infertility 2 . Management of these symptoms requires multifaceted and time-consuming treatment plans, which include airway clearance techniques, pancreatic enzymes and high-calorie diets, and medications (e.g., antibiotics, CFTR modulators) 2,3 . Although there is no cure for CF, Canadians with the disease live to an estimated age of 62 years old 1 . Parent caregivers (to be referred to as parents herein) of children with CF experience numerous psychosocial challenges. Heightened levels of caregiver burden are endorsed due to time-consuming disease management responsibilities, including administering or supervising at-home treatments 4 . Emotional distress is experienced during critical moments, such as the intitial diagnosis, initation of new treatments, and medical complications (e.g., hospitalizations) 5 . Increased levels of anxiety and depression are also experienced 4–6, with the largest epidemiological study reporting that 31-37% and 36-48% of parents have elevated depression and anxiety symptoms, respectively 7 . Guidelines recommend referrals for parents to community mental health resources as needed 8, but these resources are rarely utilized due to various barriers (i.e., lack of cost, time, transportation, appropriate resources) 6,9 . To address these barriers, tailored, Internet-delivered resources could be utilized, but none are accessible in Canada. One Internet-delivered program for parents of children with CF exists (i.e., web-based psychological support program for caregivers (WEP-CARE)) 10 ; however is not available in Canada and was not informed by user-centered design. User-centered design prioritizes engagement of the target group or end-user population throughout iterative stages of resource development, which is important for ensuring acceptability and usability of resources 11 . Internet-delivered resources for CF care have previously utilized user-centered design (i.e., Internet-delivered Cystic Fibrosis Mental Health Prevention, Wellness, and Resource [iCF-PWR] program for children with CF and their healthy siblings) 12, but a similar resource has not yet been developed for parents. The present study aimed to explore the lived experiences and information and resource needs of parents of children with CF in Canada. The research questions were: 1) What challenges do parents face?; 2) What types of information about CF do parents need?; 3) What types of resources do parents need?; 4) What are the perceived facilitators and barriers of using a tailored, Internet-delivered preventative mental health and wellness CF resource for parents?; and 5) What components should be included in a tailored, Internet-delivered preventative mental health and wellness CF resource for parents? There were no established hypotheses due to the exploratory nature of the study. 2. Methods 2.1 Study Design This study used a qualitative research design and was framed through a social-constructivist paradigm. This paradigm aligned with the objectives of this study by seeking to construct sophisticated and informed understandings of social phenomena from the reflections of individuals with lived experience 13 . The social-constructivist paradigm has been used successfully in previous research to examine the lived experiences and needs of others within the CF community (see Dollimount et al. 14 and Power et al. 12 ). 2.2. Participants Parents of children with CF in Canada were recruited and completed semi-structured interviews between May 2024 to August 2024. Recruitment occurred through Canadian CF advocacy chapters and CF Canada’s Elevate program. Eligibility criteria included: (1) parent to an individual with CF; (2) 18 years or older; and (3) able to read, write, and speak in English. There were no exclusion criteria. Purposive sampling was used to ensure that the experiences and needs of both mothers and fathers were represented. Planned enrollment was for 20 participants, with the expectation that additional participants would be recruited until thematic saturation was achieved. This sample size was informed by the typical range of responses required to ensure saturation in qualitative research (i.e., 9 - 17 interviews) 15 . Ethical approval for the study was obtained from the University of Regina Research Ethics Board (REB application number 488). Participants provided written consent prior to completing questionnaires and verbal consent prior to participating in interviews. Participants were provided $50.00 CAD as compensation. 2.3. Measures and Materials Open-ended, semi-structured interviews lasting 60 to 90 minutes were conducted via a video-conferencing software or telephone. The interviews were audiotaped using a handheld voice recorder and field notes were written after each interview. A clinical psychology graduate student (JK) was responsible for conducting, audiotaping, and writing field notes for the interviews under the supervision of a registered doctoral clinical psychologist (KDW). The semi-structured interview guide was created by members of the multidisciplinary research team, including two registered doctoral clinical psychologists with expertise in health psychology and resource development (KDW, HS), a respirologist and CF clinic director (JST), and parents of children with CF (CC, KE). Interview prompts queried about the challenges experienced by parents, their information and resource needs, the percieved facilitators and barriers for using an Internet-delivered resource, and the key components they would want included in such a resource. 2.4. Data Analysis Demographic data was analyzed using descriptive statistics through SPSS Statistics -Version 28. Continuous data was reported using means and standard deviations, while categorical data was reported using frequencies. The interviews were transcribed verbatim, anonymized, and verified against audio files by the first author (JK). Transcripts and field notes were then imported into NVivo 12 for analysis. Interview transcripts were analyzed using the six phases of reflexive thematic analysis 16 . Step 1 and Step 2 were completed by a clinical psychology graduate student (JK) and a research assistant (AH) and included familiarization with and coding of the data. In Step 3, intial themes and subthemes were generated by a clinical psychology graduate student (JK). These themes and subthemes were reviewed by a research assistant (AH), clinical psychology student (AD), and registered doctoral clinical psychologist (KDW) during Step 4. During Step 5, themes and subthemes were refined by the first and last author (JK, KDW). Finally, a report of the generated themes and subthemes was produced. The researchers acknowledged and reflected on their positioning in relation to the topic throughout data analysis. Each researchers’ understanding of CF and its impacts on parent wellbeing was informed by published research rather than lived experience. A focus on centring the voices and experiences of parents was maintained to limit researcher bias. Disgagreements about codes and themes were resolved using collaborative discussions and consensus. Several procedures were used to ensure the rigour and trustworthiness of the reflexive thematic analysis. Searching for disconfirming evidence was a strategy used by the first author (JK) following the establishment of themes and subthemes. Peer debriefing was used to provide the researchers responsible for coding data and generating themes (JK, AH) with support from more senior researchers (AD, KDW). Member checking was also utilized as participants were invited to provide feedback on study findings. 3. Results Twenty-three parents ( n = 15 mothers and 8 fathers, M age = 45.7 ± 8.9 years, range 31 – 71) in Canada participated in the study. Most participants were White ( n = 20), married ( n = 17), living in an urban area ( n = 18), employed full-time ( n = 16), and had a household income of $100,000.00 CAD or greater ( n = 19). Additionally, most parents had a child with CF between the age of 0-18 years ( n = 20) and most children were diagnosed within six months of birth ( n = 20). Additional demographic information is presented in Tables 1 and 2. Thematic saturation was achieved with twenty-three interviews. Over half of participants ( n = 15) reviewed the themes and agreed with their content, while the remaining participants ( n =8) chose not to review the findings. Six major themes from the participant responses were generated: (1) challenges; (2) needs; (3) emotions and coping; (4) healthcare experiences; (5) parenting experiences; (6) Internet-delivered resource considerations. Subthemes were additionally generated for each theme. See Table 3 for an overview of the themes, subthemes, and illustrative quotes. 3.1 Theme 1: Challenges The first theme consolidated the specific challenges that parents experienced when caring for a child with CF. Subthemes included: A) treatment challenges, b) financial challenges, c) social challenges, and d) lifestyle challenges. Subtheme A: Treatment Challenges Treatment challenges were particularly salient and described by most parents. Participants remarked that treatments were time-consuming and required established routines. CF care included oral and nebulized medications, physiotherapy, and optimization of nutritional intake, with additional treatments (e.g., antibiotics) administered when children experienced poor health. Multiple participants remarked that treatments were time consuming and frequent. Additional treatment challenges included difficulties developing or adapting CF care routines, ensuring treatment adherence, administering specific treatments (e.g., pancreatic enzymes), and managing potential health risks (e.g., interacting with sick peers at school). Some participants experienced difficulties accessing CF medications (e.g., CFTR modulators) or treatment equipment (e.g., percussion vest). Parents living in rural areas also experienced challenges with needing to travel for regular CF care. Subtheme B: Social Challenges Social challenges that arose due to caring for a child with CF were reported by multiple participants. These challenges included increased strain on parent’s romantic relationships and difficulties communicating with other people about their child’s CF. However, a few participants indicated that the CF diagnosis strengthened their relationship with their partner. Barriers to engaging in social or leisure activities generally were also described. Subtheme C: Financial Challenges Financial challenges were reported by multiple participants. While participants indicated that most medical expenses were covered through employment or provincial health insurance programs, out-of-pocket expenses for multivitamins, nutritional supplements, or treatment equipment were still incurred. Additional financial challenges included travel costs for accessing CF care and costs associated with frequent hospitalization (e.g., hospital parking fees). Some parents also had to wait for their child’s treatments to be covered by provincial health insurance plans. Subtheme D: Lifestyle Challenges Responses from some participants highlighted the challenges that CF introduced to their lifestyle. Participants indicated that it was difficult to care for a child for CF in addition to managing other life responsibilities. Other lifestyle challenges included needing to resign or take personal leaves from work and difficulties accessing childcare providers who could administer CF treatments. 3.2. Theme 2: Needs The second major theme generated focused on the needs of participants. The following subthemes were generated: a) information needs, and b) resource needs. Subtheme A: Information Needs Information needs were detailed by multiple participants. Participants often had limited, dated, or innaccurate information about CF prior to their child’s diagnosis . Following their child’s diagnosis, participants learned about CF from a variety of sources (e.g., CF clinic, online CF foundation websites, online CF parent groups) and typically needed broad information about the pathophysiology of CF and administering treatments. Recent and current information needs were more specific and included a desire for information about family planning, medication side-effects, and caring for a child with comorbid conditions or a rare CF mutation. Within this subtheme, participants also described the lack of CF knowledge among others (e.g., friends, family members, teachers). Participants indicated that others either had a limited or no understanding of CF. For these reasons, parents often needed to educate others about CF and CF care. Subtheme B: Resource Needs Resource needs were also described by participants. Participants expressed a desire for increased mental health supports and formalized peer support programs. CF care resource needs included additional clinic support, respite care, local options for treatment and/or testing, and updated materials for physiotherapy and making informed treatment decisions. 3.3. Theme 3: Emotions and Coping Emotions experienced and coping strategies used when caring for a child with CF were consolidated in the third major theme. The subthemes generated were: a) emotions, and b) coping strategies. Subtheme A: Emotions Participants acknowledged that they experienced the full range of emotions when caring for their child, including both difficult emotions (e.g., worry, frustration, guilt, grief) and positive emotions (e.g., joy, pride, hope). A few participants commented that the emotions experienced parenting a child with CF were identical to those experienced parenting a child without CF, but were either more intense or occurred in different contexts (e.g., hospitalizations). Subtheme B: Coping Strategies Participants used several adaptive coping strategies (e.g., mediatating, exercising, deep breathing, thought challenging) and relied on self-awareness and self-compassion to manage their emotions. A few participants identified that they compartmentalized their emotions to refrain from feeling them or utilized maladaptive coping strategies. To cope with the demands of caring for a child with CF, situation-based coping strategies (e.g., gathering additional information about CF, advocating for medication acces) and cognitive strategies to maintain treatment flexibility were also used. Social support was also an important coping strategy for participants. Their family members and friends provided both emotional support (e.g., compassionate listening, space to process emotions) and practical support (e.g., childcare, administering of treatments). Additionally, participants leaned on other parents of children with CF for informational support (e.g., practical advice about treatments) and emotional social support (e.g., providing reassurance, sharing lived experiences). 3.4. Theme 4: Healthcare Experiences The healthcare experiences of parents were discussed in the fourth theme. Two subthemes were generated: a) strengths and b) weaknesses Subtheme A: Strengths Participants often discussed the strengths of the healthcare system and the experiences they had when accessing healthcare services for their child. CF clinics and clinicans were often described as helpful, accessible, and trustworthy. Most participants were satisfied with the support they received through CF clinics. Subtheme B: Weaknesses Participants also described the weaknesses of the healthcare system. A few participants detailed the disagreements that they had with CF clinicians about their child’s care. Although these disagreements were often resolved, one participant recalled that a disagreement resulted in the CF clinician refusing to treat their child. Participants also noted that there was a lack of CF knowledge among medical professionals who were not part of the CF clinic (e.g., family physicians, nurses, mental health professionals). Parents often bore the burden of explaining CF to these medical professionals. 3.5. Theme 5: Parenting Experiences The fifth major theme focused on the unique parenting experiences of parents of children with CF. Three subthemes were generated: a) perspective change, b) behaviour changes, and c) advocacy. Subtheme A: Perspective Change Most participants indicated that their experiences parenting a child with CF had led to a change in their perspective on life or health. A greater desire to celebrate important milestones (e.g., birthdays) was reported. Some participants began to view time spent engaging in treatment tasks (e.g., physiotherapy) as opportunities to meaningfully connect with their child. Participants’ perspectives also highlighted their pride in their child and the focus on their child’s positive qualities, such as their resiliency. Subtheme B: Behvaiour Change Participants’ behaviours changed as a result of caring for a child with CF. Participants described hypervigilance around treatment adherence, monitoring health outcomes, and seeking excessive amounts of information about their child’s disease. These behaviours decreased as their child grew older and remained relatively healthy. The introduction of elexacaftor-tezacaftor-ivacaftor into treatment regimens also decreased hypervigilance as participants noticed significant improvements in their child’s health. Subtheme C: Advocacy Most participants were involved with some form of advocacy for CF. These advocacy efforts included involvement with local CF chapters, raising awareness, fundraising, volunteering, and advocating for medication access and coverage. A few participants reflected that they felt it was their responsibility to engage in such advocacy efforts. 3.6. Theme 6: Internet-delivered Resource Considerations Considerations for the development of an Internet-delivered resource were consolidated into the final theme. Two subthemes were generated: 1) facilitators and barriers of Internet-delivered resource use and 2) desired resource components. Subtheme A: Barriers and Facilitators of Resource Use Participants identified several factors that would either facilitate or prevent use of an Internet-delivered resource. With respect to facilitators, participants indicated that they desired a user-friendly, evidence-based, up-to-date resource. Participants noted that they would feel motivated to use the resource if it included content relevant to their child’s needs, did not take much time to utilize, and was mobile-friendly. Identified barriers included: lack of time to engage with the resource, resource platform (i.e., only accessible on a desktop), potential costs, lack of up-to-date information, and Internet disruptions. Subtheme B: Desired Resource Components Participants provided insight regarding desired components for an Internet-delivered resource. Multiple participants suggested the resource should include a social component (e.g., discussion board, chat room). Inclusion of lived experiences (i.e., written stories, videos) was also desired. Identified specific resource components included: recipes, a program completion certificate, checklists for travelling, links to additional resources, an enzyme calculator, and an information library. Various methods of information delivery (i.e., written text, videos, audio clips) were preferred. Participants wanted content to be divided into short, manageable sections and tailored to the age of the child and/or the stage of their disease. Information about CF, administering treatments, implementing routines, navigating child treatment resistance or fear of medical procedures, and managing parents’ mental health was desired. A few participants noted that additional topics (e.g., accessing financial support, communicating with their child about CF) would also be useful. 4. Discussion This study provides crucial insight about the lived experiences and needs of parents of children with CF in Canada. With respect to challenges, participants endorsed treatment, social, financial, and lifestyle challenges. Previous research has identified treatment and financial challenges as being particularly salient 17–20 . The impact of CF on parents’ lifestyle has also been noted, as one parent often needs to cease employment to care for their child 6,20 . The literature on social challenges is limited, dated, and mixed 21–23 . Overall, it is evident that this population experiences key challenges. In terms of information needs, participants noted that they had limited, dated, or inaccurate knowledge of CF prior to their child’s diagnosis, aligning with previous findings 24,25 . Participants described needing to learn about CF symptoms, pathophysiology, and treatments (i.e., medications, physiotherapy) in the early stages of their child’s diagnosis. Similar educational topics have been noted as important in previous studies 26,27 . Parents highlighted a number of resource needs. Specifically, most participants wanted increased mental health supports, as well as access to mental health clinicians who were knowledgeable about CF. This may be due to shortages of qualified clinicians and insufficient time among existing clinicians in CF clinics 28 . Participants also wanted formalized peer support programs. Such programs have been perceived to be beneficial for both mentors and mentees 29 . With respect to resource development and utilization, parents identified several factors that would act as facilitators or barriers for using an Internet-delivered resource. Participants emphasized the importance of resources being user-friendly, evidence-based, mobile-friendly, and up-to-date. These elements have been used to guide the development of multiple Internet-delivered resources for parents of children with medical conditions previously 30,31 . Potential barriers to resource use included: content not relevant to one’s child, time-intensive, and costs. Parents shared the key components that they desired in an Internet-delivered resource. Participants wanted a multimedia resource with text, audio, and videos, as well as an interactive, social component (e.g., chat rooms, discussion boards) to share lived experiences with individuals within the CF community. With respect to content, participants wanted the resource to include information about CF (i.e., treatments, routines), navigating child treatment resistance, and managing parental mental health. Participants reflected that the content would ideally be tailored to their child’s age and/or CF stage. The current study possessed multiple stregnths and limitations. Previous research has explored the lived experiences of this population has excluded Canada 19,20,32 and parents of children with CF who are above 18 years old 19,20,32 . The use of a sample who reside in Canada provided vital information about parents’ experiences and needs in the Canadian healthcare system. Further, the inclusion of parents of adult children with CF was a strength as parents are encouraged to maintain involvement following their child’s transition from pediatric to adult care 33 . The final strength related to the use of user-centered design. Questions that queried facilitators and barriers for using an Internet-delivered resource, as well as key components to be included in such a resource, will provide valuable insights for resource development. This study had one primary limitation. The sample was not demographically representative of children with CF in the broader Canadian population. Most participants were White, married or cohabitating, resided in urban areas, reported household incomes above $100,000, and were primarily from two Canadian provinces. Also, children in the current study were generally healthy and not experiencing significant complications. The lived experiences and needs of parents from other sociodemographic backgrounds or those who have children experiencing medical complications may differ. 5. Conclusion The current findings provide novel contributions by centering the unique perspectives of parents of children with CF and those with adult children in Canada, largely aligning with previous research. The results from this study highlight facilitators and barriers for resource use and desired resource components, which will directly inform the development and evaluation of a user-centered, Internet-delivered resource tailored to meet the needs of parents of children with CF.

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Authors Metrics & Citations Metrics Article Usage 218views 123downloads Citations Download citation Jasleen Kaur, Andrea Hedlund, Anna Dollimount, et al. Same Storm, Different Boats: A Qualitative Study of the Lived Experiences And Needs Of Parent Caregivers Of Children With Cystic Fibrosis. Authorea. 16 October 2025. DOI: https://doi.org/10.22541/au.176063614.40035625/v1 DOI: https://doi.org/10.22541/au.176063614.40035625/v1 If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. Simply select your manager software from the list below and click Download. For more information or tips please see 'Downloading to a citation manager' in the Help menu.