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. 2026 Feb 27;61(3):e71534. doi: 10.1002/ppul.71534

Parental Experiences and Coping Strategies of Families Caring for a Child With Cystic Fibrosis

Tuba Çelen Yoldaş 1,✉, Tuğba Şişmanlar Eyüboğlu 2, Asiye Uğraş Dikmen 3, Ayşe Tana Aslan 2
PMCID: PMC12947232  PMID: 41757553

ABSTRACT

Introduction

Receiving a diagnosis of cystic fibrosis (CF) is often a life‐shattering experience for families. Ongoing support from healthcare professionals who understand the realities of living with CF is essential. We aimed firstly to evaluate the disease‐related experiences and coping strategies of families with young children diagnosed with CF and secondly to identify the unmet needs of this vulnerable population considering the risk of developmental delays.

Methods

An in‐depth interview was conducted with each child's family individually, and the researcher recorded their responses using thematic analysis. Following the qualitative interview, the ASQ was administered for developmental screening of children. Sociodemographic and disease characteristics were also recorded on the case interview form.

Results

Twenty children aged 3–72 months with CF and their families were included in the study. The main themes of parental experiences were emotions, future concerns, stigmatization, and difficulty in caregiving. Their coping strategies as themes were religious beliefs, getting help, relaxation strategies, adherence to treatment, and organizing social life. Among the children, 20% had developmental delays in at least one domain, with no differences in sociodemographic or disease characteristics compared to those without developmental delays. One had a global developmental delay requiring educational, financial, and psychological support.

Conclusions

This study describes how families develop their unique way of managing illness in the early years of life. Healthcare professionals should identify challenges and be aware of the potential actionable unmet needs of families, providing the necessary support holistically by understanding the realities of living with CF in early childhood.

Keywords: coping strategies, cystic fibrosis, developmental delay, parental experiences

1. Introduction

Receiving a diagnosis of Cystic fibrosis (CF) is often a devastating experience for families given the lifelong, complex health management required for individuals and their families [1, 2]. Families must carefully monitor the health of children with CF to ensure stability in their daily lives and make lifestyle changes as needed; however, the permanent distress associated with caring for a child with CF can become overwhelming for everyone in the family [3]. The primary caregivers of children with chronic illness often experience conflict with other family members and professionals as they try to manage the child's disease and keep daily life as “normal” as possible. Additionally, “keeping up” or leading as normal a life as possible entails extra work for the caregiver, and thus ongoing support from healthcare professionals who understand the realities of living with CF is essential [2, 3].

Although the literature reports that families with children with chronic diseases endure many difficulties, a clear understanding of how the family adapts to the situation is lacking [4, 5]. Concerning the pathophysiology of coping, possible family responses have been proposed from a theoretical perspective. Reed described the potential for an “altered family process” as families learn to live with the need to recognize problems and assist the child promptly [3, 6]. To date, the coping strategies employed by family members caring for a young child with CF have not been described in their own words.

Although there is a large body of quantitative research on the medical aspects surrounding the care of individuals with CF, qualitative research is needed to understand the perspective of families caring for a young child with CF [3]. However, few studies have explored the experiences of families living with a child with CF, and those that have are from developed countries [3, 7]. We did not come across any qualitative study investigating coping strategies specifically for families caring for a child with CF [2]. Further, although early childhood is a sensitive time in terms of developmental trajectories, no study has considered the risk of developmental delays in this vulnerable population while exploring parental experiences [3, 7]. This has particular importance for low‐ and middle‐income developing countries to identify CF‐related unmet needs in at‐risk populations.

We aimed firstly to evaluate the disease‐related experiences and coping strategies of families with young children diagnosed with CF and secondly to identify the unmet needs of this vulnerable population considering the risk of developmental delays.

We hypothesized that although the lives of children with CF and their family members are challenging, they find their unique solutions, and holistic monitoring and support are needed during the early childhood period.

2. Materials and Methods

2.1. Procedure and Participants

This study was conducted by the Divisions of Developmental Pediatrics and Pediatric Chest Diseases, Department of Pediatrics at GU of Medicine School. After receiving institutional ethical approval, we included both parents and children aged 3–72 months who had been (a) diagnosed with CF, (b) followed up by the Department of Pediatric Chest Diseases, and (c) referred to the Developmental Pediatrics (DP) outpatient clinic between August 1 and December 30, 2022. The exclusion criteria of the study were (a) inability to speak and understand the national language, and (b) incomplete interviews.

The pediatric chest diseases department where the study was conducted was a center where national CF newborn screening results were also handled. Regardless of developmental concerns/levels, all the CF families were referred to the developmental pediatrics outpatient clinic during the study period as a representative sample. In addition, since CF is a chronic health condition, each patient with CF is routinely referred to the DP in the early childhood period in the same institution with a multidisciplinary approach. All persons involved had provided their informed consent prior to inclusion in the study.

An in‐depth interview was conducted with each child's family individually to explore their parental experiences and coping strategies in the DP outpatient clinic. The interview questions were derived from a comprehensive literature review to gather an in‐depth understanding of the topic. A developmental pediatrician, a child chest disease specialist, and a public health specialist who had approximately 10–20 years of experience in their subspecialty fields analyzed the questions for their appropriateness, clarity, and meaning. A preliminary study was conducted with five patients to identify confusing or redundant questions, and 12 open‐ended questions were finalized to guide the interviews (Supporting Information). The researcher transcribed verbatim their responses using the in‐depth interview form anonymously. Each interview lasted approximately 30 min and was completed in one session in a silent examination room. The interviews ceased once the data were saturated. Data saturation was presumed to have occurred when the data became redundant, and no new data emerged. After the qualitative interview, developmental screening tests of the children were performed, which is a routine practice of the developmental pediatrics visit. Sociodemographic information and disease characteristics were obtained and recorded on the case interview form.

2.2. Evaluation Tools

Socioeconomic status was determined using the Hollingshead‐Redlich scale, which is based on the profession and training of both parents [8].

The Ages and Stages Questionnaire (ASQ) was used for developmental screening. The ASQ is a parent‐report developmental screening instrument for children between 3 and 72 months of age. Parents rate their child's current developmental skills with questions related to five developmental domains: communication, gross motor, fine motor, problem‐solving, and personal‐social skills. The child's total score in each developmental area was compared with the previously determined age‐appropriate cut‐off scores from the national standardization study conducted by Kapçı et al. [9]. The sensitivity, specificity, positive predictive value, and negative predictive value of the national version of the ASQ are 0.94, 0.85, 0.97, and 0.75, respectively.

Both qualitative and quantitative methods were used in this study. Participating in the study was voluntary.

2.3. Data Analysis

Based on a qualitative approach by grounded theory, one‐on‐one interviews were conducted. Inductive thematic analysis was used to process the data. Procedures were reported using the Standards for Reporting Qualitative Research 21‐item checklist [10]. After the researchers (TÇY and AUD) read each response of the participants several times independently to identify meaningful units in the interviews, they reviewed together and compared the similarities and differences until a consensus was determined for the codes. The codes were determined by identifying common topics from the concepts of the participants’ words. Through an inductive process, the codes were clustered into certain categories, and the themes were identified. NVivo was also used to visualize the data. A different researcher (TŞE) checked the accuracy and usability of the data, and the final version of the content analysis was obtained.

Regarding reflexivity, the primary researcher in the study has more than 10 years of experience as a developmental pediatrician working closely with families of young children with chronic health conditions. The second researcher is an experienced expert in pediatric chest diseases. The researchers openly discussed their personal biases and explored multiple and alternative explanations during the development of themes.

Quantitative data were analyzed using SPPS version 23.0. Data distribution was examined before descriptive statistics were calculated, after which means (±SD) were calculated for normally distributed data, and medians were calculated for non‐normal distributions. Categorical data was presented as numbers and percentages. A p‐value of < 05 was considered significant. Differences between children with and without developmental delay in sociodemographic and disease characteristics were analyzed using chi‐square and independent T‐test. We ensured the quality of our reporting using the STROBE checklist.

3. Results

Twenty children and their parents were included in the study, and 95% of respondents were mothers. All the CF families referred to the developmental pediatrics outpatient clinic in the study period agreed to participate. The mean age of children was 32.1 ± 18.5, and 60% of them were female. The sociodemographic and disease‐related characteristics of the participants are shown in Table 1. None of the children were prescribed modulators during the study period.

Table 1.

Sociodemographic and disease characteristics of children with cystic fibrosis.

Characteristics N = 20
Sociodemographics
Age (mean ± SD) (month) 32.1 ± 18.5
Female gender, n (%) 12 (60.0)
Gestational week 38.2 ± 2.1
Birth weight (mean ± SD) (grams) 2957.4 ± 583.1
Type of birth (cesarean section), n (%) 11 (55)
Maternal age (mean ± SD) 30.6 ± 6.2
Maternal education (> 8 years), n (%) 9 (45)
Maternal employment (housewife), n (%) 17 (85)
Paternal age (mean ± SD) 33.8 ± 6.4
Paternal education (> 8 years), n (%) 9 (45)
Paternal employment (regular), n (%) 15 (75)
Nuclear family, n (%) 16 (80)
Sibling with CF, n (%) 2 (10)
Primary caregiver (mother), n (%) 20 (100)
Reading to child daily, n (%) 4 (20)
Screen viewing, hours (median) (range)a 1 (0–6.5)
Socioeconomic status, n (%) (range: 2–5)b
Class 2 6 (30)
Class 3 5 (25)
Class 4 7 (35)
Class 5 2 (10)
Consanguinity, n (%)c 10 (50)
Disease Characteristics
Age at diagnosis, month (median) (range) 2 (1–27)
Follow‐up period (mean ± SD) (month) 39.5 ± 15.9
Newborn screening, positive, n (%) 18 (90)
Pancreatic insufficiency presence, n (%) 16 (80)
Genotype, n (%)
Mild 5 (25)
Severe 12 (60)
Unknown 3 (15)
Hospitalization in the last 6 months, (median) (range) 0 (0–1)
Exacerbations in the last 6 months, (median) (range) 0 (0–2)
Colonization, positive, n (%)d 5 (25)

Abbreviations: CF, Cystic Fibrosis; NICU, Neonatal Intensive Care Unit; SD, Standard deviation.

a

Screen viewing means total hours of watching any kind of media (tablet, television, phone, etc.) in a day.

b

Hollingshead Redlich scale provides categorical results according to the profession and training of both parents. Lower levels of the classes demonstrate higher socioeconomic status.

c

Consanguinity was defined as parents being related by blood, sharing a common ancestor, such as being first or second cousins.

d

Two patients had Pseudomonas aeruginosa, two patients had Staphylococcus aureus, and one patient had Haemophilus influenzae.

The qualitative data on parental experiences and coping strategies were analyzed holistically.

The main themes and the subthemes that characterize these headings were identified. Representative quotations are provided in Table 2 to illustrate the parental experiences and coping strategies.

Table 2.

Themes and representative quotations of the participants.

Theme Representative quotations
Parental Experiences
Emotions

P13: A genetic diagnosis was made at 8 months of age. I was scared, I cried. The things I read online were terrible.

P17: We learned from the heel blood in the newborn period. It was such a bad feeling, I don't even want to remember it. I heard about this disease before I even knew what motherhood was. We said why us?

P9: A lot of time has passed (4.5 years), but although my sadness at the first diagnosis has passed, my anxiety and depression continue. For this reason, I receive psychiatric treatment.

P18: Four and a half years have passed, but my feelings are the same. The sadness I felt when I first heard it hasn't gone away. I think she isn't well; she isn't growing, and she has frequent hospitalizations; I feel sad.

Concerns about the future

P6: We did not tell distant relatives in case there might be marital problems in the future.

P7: I am most worried about the future, I am afraid that he will be on a ventilator.

P9: The future and school life worry me the most. There is a medicine that she needs to take before every meal. When she starts primary school, I don't know how her teacher will arrange to give the medicine or how she will manage it herself. I am very anxious about this.

Stigmatization

P4: We shared the diagnosis with close family members. Distant relatives aren't reasonable, they say we are too protective. They don't know the disease, and it's hard to explain, they don't understand.

P6: Distant relatives tend to label my child as sick, and there may be marital problems in the future.

P15: We never shared it with the father's relatives. When our first child had CF, they said that it was caused by the mother.

Difficulty in caregiving

P14: Her sister was very impressed; she asked why we always take care of her little sister. We are in contact with her teacher and know that she is happy at school. She's giving me trouble at home. She loves her sister, although she is very jealous.

P3: His brother stays with his uncle during holidays; we pay special attention to the things he likes. Still, he cries behind us on the way to the hospital.

P3: I'm afraid that a simple cold in the family will turn into a lung infection.

P5: I get worried and excited every time I come to the hospital and wait for the results.

P8: There is a big problem with the father's work because of his absenteeism.

P10: We are affected in terms of marriage because of the treatment. Our family was divided, and we started living in different cities.

Coping Strategies
Religious beliefs

P4: We are grateful when we see other children at the hospital.

P5: I have no choice except to pray at every hospital check‐up visit.

P19: We are satisfied with what comes from God.

Getting help

P15: I attend seminars. In these seminars, I saw adult CF patients with grandchildren or newly diagnosed adult CF patients. I definitely attend the annual seminars held in the same institute to feel good.

P17: When the disease occurs from birth, it grows with her. We attend seminars to learn more.

P19: There is close family and spouse support. His grandfather brings us to the hospital visits.

Self‐relaxation

P1: We look at it with hope as if she has never had a disease.

P12: I believe he will recover with medication.

P13: I don't read or research about the disease to avoid being influenced.

P14: I do not force the child to eat; I follow her closely.

P16: The child's nature and temperament, her perseverance, and the low frequency of illnesses gave us strength.

P20: I am careful to continue my life, somehow studying for an exam for my job.

Adherence to treatment

P13: We are trying to persuade her for inhaler treatment. We taught her to take her own medicine at school regularly. The teacher checks verbally whether she drinks the medicine.

P16: We have a big medicine bag and take our medications with us when we go somewhere.

P17: We give her the opportunity to take her medications. At the age of 2, she puts on her mask (inhaler treatment).

Organizing social life

P5: We adjust the treatment schedule to appropriate times.

P14: We particularly prefer non‐crowded social activities.

P15: There is a large garden in front of the house. I let them play outdoors in all seasons. We didn't leave behind social activities either; we went to the Turkish bath and preferred the open pool.

Abbreviations: CF, Cystic Fibrosis; P, Participant.

3.1. Parental Experiences

Regarding the parental experiences, the main themes were emotions, future concerns, stigmatization, and difficulty in caregiving.

Sadness, fear, anxiety, and inadequacy were the subthemes of the emotional state. Most families (90%) learned the diagnosis in the neonatal period after the heel prick screening test. The mothers felt emotions of surprise, shock, and anxiety brought about by the unknown, collapse, rebellion, and especially sadness and fear. Although most fathers (80%) experienced sadness, fear, and shock, more than half (60%) of them remained calm as one mother said, “His father was upset but tried to stay strong and consoled me.” While most mothers expressed positive or neutral emotions over the years, two mothers (10%) reported that their depressive mood, sadness, and anxiety continued for years.

Concerns about the future were another main theme in the study, with subthemes of the child's inability to marry, school failure/inability to continue education, progression of lung disease, and the child and family's inability to become independent. Parents also described experiencing stigmatization with subthemes of discrimination/exclusion, being exposed to many questions about the disease, and blaming the mother. Although most of the families (95%) shared the diagnosis with their relatives, eight families shared it only with close family members.

Difficulty in caregiving was another main theme with subthemes of sibling neglect, protection from infections, disruption of the father's work, hospitalization/attending frequent clinic visits, and treatment compliance stress. Of the 20 children, 12 had siblings, of which 50% reportedly experienced sadness or jealousy. The other siblings reportedly were supportive, or the mothers described being attentive to the siblings' needs to limit the effect. Thirty‐five percent of parents stated they had difficulties with treatment adherence. Half of the parents (50%) reported that they experienced problems related to decreased social life (especially during the COVID‐19 pandemic), absence from work or not being able to return to work, and disruption of home functioning during hospitalization.

A diagram created outlining four main themes and related subthemes concerning the families’ experiences is illustrated in Figure 1.

Figure 1.

Figure 1

Parental experiences of families with four main themes and the related subthemes. [Color figure can be viewed at wileyonlinelibrary.com]

3.2. Coping Strategies

Their general attitudes and beliefs centered on acceptance. The first coping strategy was religious beliefs, with three subthemes: trusting God, praying, and being grateful. Three mothers reported that “It came from God.” Getting help was another main theme, with subthemes of medical support, family support, and participation in informational meetings. All patients had medical support. Some stated that informational meetings were helpful because the participation of adult CF patients in these meetings was meaningful in gaining information about how to proceed in the future. All mothers reported having a spouse or close family support. However, most mothers (90%) reported receiving no psychosocial or mental health support/services. Two mothers stated their needs, saying, “I needed psychological support. I wanted to go to psychiatry in the first 5 years, but I couldn't leave her because I was dependent on the child.”, “I still need psychosocial support. His father is the same, but we weren't asked and didn't receive any support for mental health.”

Self‐relaxation strategies were another coping method with four subthemes: hoping/thinking positively, not researching/reading/thinking, not forcing the child or yourself, and continuing your life/work. None of our parents engaged in any structured intervention programs for relaxation. Their hope for the future was prominent. Some expressed their belief that even if a definitive treatment wasn't available for their own children, it would be available for others. They avoided detailed research to avoid distress. They said that not pressuring their children at mealtimes brought relief to both them and their children. Their efforts to normalize the situation by continuing with daily routines were also obvious.

Adherence to treatment was another main theme among coping strategies, with three subthemes: giving treatment regularly, carrying medicines everywhere, and encouraging the child's participation in treatment. Some mothers said they coped well with the illness because they ensured their children's treatments were regular. They expressed satisfaction when the treatment was arranged in a way that didn't restrict their independence. They also stated that children's involvement in the treatment procedure was important to fostering their coping skills.

Organizing social life was a considerable main theme as a coping strategy, with three subthemes: preferring uncrowded activities, participation in outdoor activities, and adjusting social time according to treatment hours. In this area, mothers stated that making appropriate arrangements related to the disease, so as not to fall behind in social life, was beneficial for both themselves and their children and was an effective coping method.

Five main themes with subthemes that emerged from the data regarding the coping strategies are illustrated in Figure 2.

Figure 2.

Figure 2

Coping strategies of families with five main themes and the related subthemes. [Color figure can be viewed at wileyonlinelibrary.com]

3.3. Developmental Test Results

Four (20%; P5, P10, P17, P18) children had developmental delays in at least one domain according to the ASQ. The delayed domains were communication (n = 3), gross motor (n = 2), fine motor (n = 1), and personal‐social (n = 1). We found no differences between children with (n = 4) and without developmental delay (n = 16) in terms of sociodemographic and disease characteristics (p > 0.05). Participant 18, a 54‐month‐old girl, had a global developmental delay. She was referred to the special education report for individual support. Her mother stated that multiple hospitalizations affected both her child's development and their family life, and they need urgent financial and psychological support.

4. Discussion

Based on the considerable effects of complicated chronic diseases on the functioning of the child and family [11], we have identified disease‐related experiences and coping strategies of families caring for a child with CF in the early years of life. Further, we employed a mixed‐methods research design to evaluate the developmental status of the children and contribute to the dearth of literature on early childhood. The main themes about parental experiences were emotions, future concerns, stigmatization, and difficulty in caregiving. Their coping strategies as themes were religious beliefs, getting help, self‐relaxing, adherence to treatment, and organizing social life. One in five children had developmental delays in at least one domain. This is the first report evaluating the experiences and coping strategies of families caring for young children considering the risk of developmental delays.

Emotions were at the forefront as one of the main themes of parental experiences both at the time of diagnosis and afterward. Sadness, fear, anxiety, and inadequacy were the subthemes of the emotional state. However, the fathers often appeared calm. When we examined the changes in emotions of the mothers over time, most mothers expressed positive or neutral emotions the longer they were involved with caregiving. According to the scarce literature on emotions at the initial diagnosis, helping parents develop a sense of control is a key component of care at the time of diagnosis [3, 7]. Thus, understanding emotional changes during the process may provide insight into how to develop appropriate individual interventions [3]. Concerns about the future were another main theme in the study. These concerns arise since CF requires lifelong clinical management that becomes increasingly complex as physical health deteriorates [1, 2].

Parents also described experiencing stigmatization. Although CF is often an invisible disease, previous research suggests that chronic illnesses can elicit stigma [12], even when those are concealable [13]. People with chronic conditions expect to be treated differently by society, and their social identity may be threatened deeply [12, 13]. Mothers in our study described facing a barrage of questions about the disease as well as being blamed, which increased their burden.

Difficulty in caregiving was another main theme. Consistent with our results, previous literature identified the burden of caregivers of children with CF, including protection from infections, financial strain due to direct and indirect costs, frequent clinic visits, disruption to family life due to hospitalization, and adherence to complicated treatment schedules [14]. Dealing with complex therapy regimens can be very stressful for all family members [3]. In our study, some siblings were affected by sadness or jealousy. Previous studies about siblings of children with CF reported siblings experienced worry, jealousness, and frustration as activities were restricted in the family, however, researchers also reported positive outcomes, such as strengthened relationships and feelings of satisfaction as the health of the child with CF improves [3, 15].

Families in the current study found their unique ways to cope with difficulties. The first coping strategy was religious beliefs. Engaging in religious practices or a strong spiritual connection can provide a source of comfort for some people suffering from chronic health conditions [16]. Getting help was another main theme. In adult studies, the need for and the importance of various forms of support was identified [2]. Differently, in our early childhood study, some families reported benefits related to participating in informational meetings as a kind of support and coping strategy because they were able to meet adults with CF and learn how they continuously manage their condition.

Self‐relaxation was another coping strategy. Although none of our parents engaged in systematic relaxation practices or intervention programs, structured programs are sometimes available for people suffering from chronic conditions [17]. Our patients described that they prefer to think positively, not investigate the disease deeply, and try to continue their routines to feel as normal as possible.

Adherence to treatment was also an important main theme among coping strategies. Families caring for a child with CF incorporate a variety of rigorous and time‐consuming treatments into their daily lives [2, 3]. To manage these difficulties, families in the current study described adhering to treatment schedules and encouraging their children to learn to take care of some of the tasks as coping strategies.

In parallel, organizing social life was a considerable main theme as a coping strategy. Lifestyle readjustments are usually made in an attempt to return to some sense of family normalcy [3]. In an adult CF study, participants expressed a desire to be seen as “normal, healthy, and productive” members of society [2]. Consistently, families in this study caring for a child with CF aimed to integrate themselves into the community through social life readjustments, participating in uncrowded and outdoor activities with an adjusted treatment schedule.

In our study sample, 20% of children with CF had developmental delays in at least one domain. This rate was similar to our previous community study, reporting approximately 25% of developmental risks at general pediatric outpatient clinics [18]. Parents with children with chronic diseases may need additional educational, financial, and psychological support for their children's optimal development [19] which was highlighted by one of our participants of a child with global development delay in this study. Parents of children with chronic diseases may exhibit differentiated and overprotective attitudes to the illness, affecting the overall management of the illness and the child's general development [20]. Therefore, developmental surveillance for this vulnerable population is of particular importance to promote optimal child development and well‐being [21]. In the current study, we found no association between sociodemographic/disease characteristics and the ASQ results, which may be related to the small sample size. Since it is likely that sociodemographic disadvantages or disease burden in chronic conditions increase the risk of developmental delays [11, 19], studies with a larger sample size are also required in this regard.

Helping families understand the diagnosis, how to manage the disease, and what to expect when living with a family member who has a chronic disease, as well as providing services to meet their psychosocial needs, can be effective in helping families cope with the situation [2].

Although two previous studies have investigated parental experiences of caring for a child with CF they presented limitations; one of the studies was conducted with nine participants without providing the ages of the children [3], and the other collected data via an online survey data with limited attention given to demographic information [7]. Further, there is no qualitative study investigating parental coping strategies in early childhood while working to manage CF in a developing country [2].

Because of the dynamic nature of CF, from the early years of life, engaging healthcare providers and families in a dialogue in which experiences are shared may lead to working treatments because families caring for a child with CF can then adapt the support to meet their unique needs. As a study limitation, the results cannot be universally generalized. Additional research is needed to examine how patients and families cope with CF during the transition to adulthood [7]. Also, how the use of modulator drugs will affect parental experiences may be a good research question.

Regarding the study's strengths, we employed a mixed‐method study and a culturally valid form of a well‐known developmental screening test [9]. The study sample was representative of this population since the place where the study was conducted is an institution that follows CF patients within the scope of the national screening program and all CF patients in early childhood were referred to DP during the study period. To the best of our knowledge, this is the first study to provide insight into the realities of living with a young child with CF considering developmental risks. We examined the early years based on the reciprocal effects of development on disease and the environment.

5. Conclusion

This study describes how families develop their unique way of managing illness in the early years of life. Healthcare professionals should identify the challenges faced by families, be aware of the potential actionable unmet needs of families, and provide the necessary support holistically within the healthcare system by understanding the realities of living with CF in early childhood.

Author Contributions

Tuba Çelen Yoldaş: concept and design, acquisition of data, analysis, and interpretation of data, drafting the article or revising it critically for important intellectual content, and final approval of the version to be published. Tuğba Şişmanlar Eyüboğlu: concept and design, acquisition of data, revising it critically for important intellectual content. Asiye Uğraş Dikmen: analysis and interpretation of data. Ayşe Tana Aslan: concept and design, acquisition of data.

Funding

The authors received no specific funding for this work.

Ethics Statement

The ethical approval from Gazi University Ethics Committee/No: 651.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

E‐table.

PPUL-61-0-s001.docx (12.5KB, docx)

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

E‐table.

PPUL-61-0-s001.docx (12.5KB, docx)

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.


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