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. Author manuscript; available in PMC: 2020 Aug 1.
Published in final edited form as: Pediatr Pulmonol. 2019 May 7;54(8):1225–1233. doi: 10.1002/ppul.24344

Pursuing parenthood with cystic fibrosis: reproductive health and parenting concerns in individuals with cystic fibrosis

Claire E Hailey 1, J Winfield Tan 2, Elisabeth P Dellon 3, Eliza M Park 2,4
PMCID: PMC6642021  NIHMSID: NIHMS1023765  PMID: 31066212

Abstract

Background

As life expectancy for cystic fibrosis (CF) has increased in recent decades, more individuals with CF are becoming parents. The objectives of this study were to describe the parenting and reproductive health concerns of individuals with CF and to identify the psychosocial and educational needs related to parenthood with CF.

Methods

Twenty adults with CF, including parents and non-parents, participated in one-on-one, semi-structured interviews about reproductive health and parenting. Questions pertained to reproductive health knowledge, psychosocial adaptation to CF related to fertility and parenthood, parenting concerns in the context of CF, and psychosocial care needs. We performed thematic content analysis on interview transcripts and descriptive statistical analysis on participant demographics and health variables.

Results

A majority of participants (ten women and ten men, of whom half were parents) described their health as “stable” and “good/fair”; median FEV1 was 66% predicted (range: 30–105). Participants shared a range of experiences related to reproductive health discussions with CF care providers and expressed concerns about pregnancy, infertility, and adoption. Parents and non-parents expressed concerns about balancing roles as parent and patient, the impact of anticipated health decline and early mortality on children, and communication with children. Participants identified a need for earlier, improved education for potential parents and resources for parents with CF.

Conclusions

Individuals with CF may not receive sufficient CF-related reproductive health education, and they have wide-ranging concerns about the intersecting roles of patient and parent. Results from this study can provide guidance for CF care providers to improve their understanding and response to the needs of individuals and families affected by CF.

Keywords: cystic fibrosis, social dimensions of pulmonary medicine, education, reproductive health, parent

BACKGROUND

In the past five decades, median predicted survival in cystic fibrosis (CF) has increased from 10 years to over 40 years1,2, and since 2015, there are more adults than children living with CF in the United States. The increasing life expectancy of the CF population necessitates more attention to transition to adulthood and expected health care issues in young adults, including the concerns of individuals with CF who are considering parenthood or becoming parents38. Specific CF-related reproductive health issues include infertility and impact of pregnancy (including lung function, gestational diabetes, immune system impairment)310. The topic of parenting with CF raises questions about shortened life expectancy in CF, the daily burdens of simultaneously managing a chronic illness and raising children, and other concerns.

Despite important progress in research related to reproductive health in CF, significant gaps in knowledge remain. While research in CF has demonstrated an essentially neutral impact of pregnancy on health7,10,11, data indicate that individuals with CF lack important CF-specific reproductive health knowledge6,12,13. Women with CF have exhibited limited awareness and misconceptions of the physical and psychosocial implications of pregnancy and parenthood with this chronic illness; they have also described inadequacies of reproductive health communication from CF providers, including delayed introduction of reproductive health education, as well as disheartening disapproval of childbearing by CF providers6,12,14,15. The only known study on CF-related reproductive health education including men suggests that deficiencies also exist in education from CF care teams on these topics13.

The few published studies related to parenting with CF have demonstrated that individuals with CF face conflicting recommendations from CF providers1618, difficulty balancing responsibilities17,18, shifting priorities1719, coping with parental stress in the context of illness18,20, and guilt about the impact of illness on children18,19. Within the extant literature, few published studies address male reproductive health and parenting concerns, and even fewer address individuals’ decision-making with respect to parenthood. To address these gaps, the objectives of this study were to describe the parenting and reproductive health concerns of parents and non-parents with CF, including men and women, and to identify the psychosocial and educational needs of individuals with CF who are considering parenthood or are parents.

METHODS

This was a cross-sectional, qualitative study of 20 individuals with CF to examine reproductive health and parenting needs in this population. The University of North Carolina at Chapel Hill Institutional Review Board approved the study (Study Number 16–0016).

Participants and setting

Participants were recruited from the outpatient CF clinic of a large, public, academic hospital. We used purposive sampling to seek variation in gender, age, and parenting status. Eligible participants were at least 18 years old, English speaking, cognitively intact, and able to participate in a 30–60-minute interview.

Interviews

Two authors (CEH, JWT) conducted individual, semi-structured interviews with participants in person or via telephone. The investigator-developed interview guide included questions on CF-related reproductive health knowledge, psychosocial adaptation to CF regarding fertility and parenthood, parenting concerns related to CF and its treatments, and supportive care needs pertaining to reproductive health and parenting (Table 1). The median length of interviews was 44 minutes (range: 19–68). Interviews were digitally recorded and transcribed for analysis using qualitative analysis software (NVivo version 11, QSR International, Victoria, Australia). All participants provided written or verbal telephone consent prior to participating.

Table 1.

Interview Questions on Reproductive Health and Parenting

• Have you talked with your CF team about reproductive issues/concerns related to CF? Can you tell me about the conversations you had with your CF providers about reproductive health in CF prior to having children?
• What information about reproductive health [related to CF/your health] has been most helpful for you?
• What is it like to be a parent while living with CF?*
• How, if at all, does having CF play a role in your decision-making about having children? *
• What are your thoughts or concerns about being a parent and managing your CF?
• How does having CF affect you as a parent, if at all?*
• Since becoming a parent, how does having children impact your decisions about CF treatments, if at all?*
• How, if at all, would your decision-making be different if you had children?**
• What has been the most difficult part of managing your CF with respect to having children or about considering becoming a parent?
• Related to your health, what are your biggest worries or concerns as a parent or about becoming a parent?
• Do you children know you have CF?*
• Follow-up questions: What do they know? How did they find out?
• What guidance have you received about communication with children; if none, what guidance would you like to receive?*
• How important is it that your CF care team understands your role as a parent (Very important; Moderately important; Somewhat important; Not important at all)?*
• What has been helpful to you as a parent with CF/related to your health; what has not been helpful?*
• If you were giving advice to another person with CF, what would be helpful for them to talk about with their doctors or with others related to reproductive health and parenting?
• If you could create resources to meet the needs of other parents with CF who have children or who are considering having children, what would they be?
 ○ What specific information would have been helpful for you at the time when you were thinking about having children? Now that you have children?
 ○ How should this information be presented?
 ○ At what age do you think it would be most helpful for people with CF to receive this type of information?
 ○ Are there other resources that you have found helpful? What are they?
*

Questions asked only to participants who had children

**

Questions asked only to participants who did not have children

Data management and analysis

Qualitative analysis applied content and thematic techniques2123. Three authors (CEH, JWT, EMP) read interview transcripts and independently developed inductive descriptive codes using participants’ own language whenever possible. Together, coders created thematic categories from related codes, and the group agreed upon a final code structure. Coders then individually reapplied the final code structure to transcripts, and coding differences were discussed and resolved by consensus. Interview codes were condensed into categories, and categories were organized into key conceptual domains and themes. This process continued until coders agreed that thematic saturation was reached.

Study measure and medical record abstraction

Demographic and Cystic Fibrosis Questionnaire-Revised (CFQ-R): The CFQ-R is a disease-specific health-related quality of life (HRQOL) measure for children, adolescents, and adults with CF24. It is a profile measure of HRQOL with several domains, including Physical Functioning, Health Perceptions, Respiratory Symptoms, Treatment Burden, Emotional Functioning, and Social Functioning.

We used descriptive statistics to summarize participants’ demographic characteristics and relevant health variables collected from medical records and the CFQ-R.

RESULTS

Demographic and health variables

Median age of participants was 28.5 years (range: 22–46). A majority of participants described their health as “stable” and “good/fair.” Median FEV1 was 66% predicted (range: 30–105). Participant characteristics are summarized in Table 2.

Table 2.

Participant Demographic and Illness Characteristics

Variable Parents (N = 10) Non-parents (N = 10)
Number of children, median (range) 2 (1–2) N/A
Age of children (years), median (range) 5.5 (0.3–17) N/A
Most recent FEV1 % predicted, median (range) 71.5 (30–105) 62 (34–80)
Gender
  Male 4 6
  Female 6 4
Age (years)
  21–30 2 9
  31–40 5 0
  41–50 3 1
Race/ethnicity
  Caucasian 8 10
  African-American 2 0
Marital status
  Married/partnered 10 7
  Single 0 3
Highest grade completed
  High school diploma 0 1
  Some college 2 4
  College degree 3 5
  Graduate or professional degree 5 0
Current school/work status
  No school/work due to health 3 1
  Attending school outside home 0 2
  Full-time homemaker 1 0
  Working full/part-time (outside or at home) 6 7
Reported overall health status
  Excellent 3 2
  Good 1 4
  Fair 5 4
  Poor 1 0

Abbreviations: FEV1 = Forced Expiratory Volume in One Second

Reproductive Health Concerns in CF

Reproductive health discussions with CF care providers

Seven participants, including two who were diagnosed with CF after having children, reported having minimal or no discussions about reproductive health with a CF provider. Among participants, a recurring theme about the lack of reproductive health discussions was the expectation that they would not live long enough to have children. In one participant’s words, “They didn’t think I would make it beyond my teenage years. So nobody ever talked about [reproductive health] … 25 years ago a lot of people didn’t even make it into their reproductive years, so why discuss it?”

If participants had discussed reproductive health with CF providers, most of these discussions occurred during late adolescence or early adulthood. While the specific content of their discussions with CF providers varied, the two consistent topics were: CF-related infertility (among men), and the potential negative impact of pregnancy on health status (among women). All ten men reported having some conversations with CF providers, they recalled minimal medical information being shared. When women discussed birth control options with CF providers, most discussions lacked information, such as the potential effects of unplanned pregnancy in CF. Most of the reproductive health conversations between participants and CF providers focused primarily on recommendations to optimize their health prior to becoming pregnant and counseling about necessary treatment modifications during pregnancy.

Despite participants’ access to sub-specialty care – pulmonologists with expertise in CF, urologists specializing in infertility, and maternal-fetal medicine obstetricians – most participants desired more individualized information in their reproductive health discussions. To address their perceived knowledge deficiencies, they sought much of their CF pregnancy and fertility guidance from other sources, such as online forums, rather than discussions with their sub-specialty providers or pediatricians.

Experiences related to infertility, fertility treatment, and adoption

Although CF providers had communicated basic infertility facts to all male participants, two fathers had not discussed infertility with providers until after they had attempted to conceive. Seven men had been referred to a fertility specialist. Several men worried that the cost of infertility treatment would prevent them from becoming parents. A majority of participants had considered adoption. Three participants had difficulty with adoption due to having CF; one father described, “… the adoption was so difficult that [in vitro fertilization] was like our only option to have that other child” (Table 3).

Table 3.

Representative Quotes of Parental Experiences and Parenting-Related Concerns

Themes Representative Quotes
Balancing Roles
 Time/Energy limitations “My energy level is so low right now … if I know he has stuff to do in the evening, like I promised him I would take him to the park or outside to play, I will go home and sleep all day long just so that I have the energy to do whatever it is that I promised him.” – Mother, age 39
“…finding the balance between keeping myself as healthy as possible while keeping our family a happy working family unit … that’s always going to be a bit of a struggle.”– Mother, age 44
“I have not found that ideal balance yet where I can do the gym, I can do the breathing treatments, I can handle the kids all in the same, all at the same time during the same day.” – Father, age 38
 Emotional impact “[Having CF] does affect being a parent obviously because there are the times when you are sicker than most moms … that is my biggest concern as far as that goes as being a parent with CF is the disappointment that he sometimes has to feel” – Mother, age 39
“I don’t want them to be hurting for me or for themselves and so it hurts my heart when I see them look at me like, ooh Mom is in a bad coughing fit.” – Mother, age 44
“I wish I weren’t sitting there doing treatment while my daughter’s in the other room playing … I wish I was there playing with her, and I don’t want her to feel like I’m absent in that way.” – Father, age 38
Health Decline
 Emotional concerns “I worry that the kids are worried.” – Father, age 38
“Longer term I think about how is this going to affect my children to watch me, my condition, decline over the course of their childhood and what’s it going to be like for them … it would make me sad to think that I can’t really be there for all of that.” – Father, age 38
 Practical concerns “I would hate for the point that they [his children] would have to take care of me, and my wife would have to take care of me or I wouldn’t be around and so that’s the constant battle that I’ve always had to face.” – Non-parent man, age 27
“…Sleepless nights, kids with flu that you are staying up, having them puke all over you, that takes its toll too. … I always put my kids first even when I probably should have put myself first and that takes its toll as well. … I am learning to say yes, I told you I would take you to the park, … I have just got to rest now.  I have learned to do that in the last few years, but that’s out of necessity.” – Mother, age 44
“I think there’s a part of me that, that worries about like well what if I do get really sick and end up in the hospital or get to the point where I can’t help out around the house or help out with everything.” – Mother, age 28
Early Mortality
 Emotional concerns “…especially if having to deal with mommy dying, that would traumatize a kid and I just, I wouldn’t want to do that to a child. I would feel guilty.  I would feel like I brought this into this, this child that didn’t deserve, didn’t deserve to go through that trauma” – Non-parent woman, age 26
“...if I died early then how would he deal with it because he would deal with the death of his wife plus dealing with the kids see mommy die of a disease.” – Non-parent woman, age 26
 Practical concerns “I just won’t be there for them” – Non-parent man, age 27
“So the proposition of leaving your wife penniless is a very real possibility… Leaving her with a child to take care of on top of that is a pretty big factor to consider.” – Non-parent man, age 46
“No one else would raise them the way that I would.” – Mother, age 39
Adoption Experiences and Concerns “…We were trying to adopt before and we had a lot of problems with adoption, so we decided to do another round of IVF. … There was a lot of struggle after the first but we felt like we weren’t done with our family. We now knowing that my wife had a CF mutation we really didn’t want to go through IVF again, but the adoption was so difficult that it was like our only option to have that other child.” – Father, age 43
“I don’t know if through my parents or through a pulmonologist that adoption actually wouldn’t be an option … because of my status, with chronic illness, probably we wouldn’t be accepted as possible adoptive parents. So that was the information I had.” – Father, age 38
Genetic Concerns “I’ve actually just found that out that you could possibly have a kid with CF and you have CF, you’re not exempt … it’s not like having chicken pox, you can have a kid that has CF, but what do you do in that situation? … Do you pass it off … what can you do?” – Non-parent man, age 26
“…you go through all this work to have a child and then your child has CF, that’s disheartening.” – Non-parent man, age 26
“We are doing in vitro … See my wife is a CF carrier too … we are going to have the embryos tested before we even put them in and that way … they can almost guarantee that it will not have cystic fibrosis.” – Non-parent man, age 29
Parent-Child Communication “I want them to be completely aware of everything and the risks and the potentials … because I believe that open information decreases your stress and anxiety about certain issues, and so I don’t want them to be worried or curious or questioning like why I do treatments or take medicine or why I am getting sick.” – Mother, age 28
“Discussing the fact that I might die with them. That has definitely been the hardest part.” – Mother, age 44
“...having that conversation I have yet to have with my children because they are just too young explaining to them what CF is, how it affects me, and trying to educate them on what’s going on with me and not to scare them, I don’t want them thinking I am going to die tomorrow.” – Father, age 38

Health concerns regarding pregnancy with CF

Female participants expressed pregnancy health concerns, including whether having CF would prevent them from being able to have a healthy pregnancy, whether their CF medications could negatively impact pregnancy, or whether pregnancy could cause temporary or permanent health decline. One parent’s experience highlights a problem regarding access to appropriate prenatal care for women with CF: “trying to find a [Ob-Gyn] doctor that would take me as a CF patient, it was practically impossible. Everybody was like, ‘you’re high-risk, I’m not touching you.’” Despite some negative experiences, most participants who were already mothers felt that their CF providers were supportive during their pregnancies.

Pursuing parenthood despite reproductive health and genetic concerns

A majority of participants described concerns about their children inheriting CF (Table 3). Some participants decided not to have biological children, several partners of participants were tested for CF carrier status, and others pursued genetic testing of embryos during IVF. Despite numerous reproductive and genetic concerns, nearly all participants decided that their desire for children outweighed the perceived CF-related risks of having children. Among the few participants who intentionally eschewed parenthood, concerns about early mortality or perceptions that pregnancy could lead to irreversible worsening of their disease were cited as major factors in their decision-making.

Parenting Concerns in CF

Both parents and non-parents described multiple concerns related to parenting while living with CF (Table 3). Concerns ranged from practical difficulties of everyday life to challenging questions related to their expected premature mortality.

Balancing roles as parent and CF patient

Parents were frequently challenged by competing responsibilities of childcare and managing their physical health. Most parents and non-parents were concerned about having less time for CF treatments due to parental responsibilities and the emotional impact of their limited ability to care for children due to time-intensive treatments. Parents described the practical implications and emotional impact on their children when parents had to be hospitalized or spend more time on treatments due to acute illness. While non-parents’ expectations of parenthood revealed similar concerns about the challenges of daily CF management and acute illnesses, there were obvious discrepancies between expectations of non-parents and realities faced by parents. For example, non-parents were optimistic that their parenting abilities would be minimally compromised by lack of energy, whereas nearly all parents with CF expressed concerns about how fatigue would impact or already had impacted their ability to raise their children. A mother with two school-age daughters described, “finding the balance between keeping myself as healthy as possible while keeping our family a happy working family unit … that’s always going to be a bit of a struggle.”

Health decline and mortality concerns

Several participants specifically cited concerns that the “stress of parenting” would negatively impact or already had compromised their health. A mother presumed, “almost every CF patient’s health does decline after having children because of the strain of taking care of another person and being responsible for that human life​.” Nearly half of participants expressed concerns about the impact of their health decline on their children, both practical issues related to parenting responsibilities and the emotional impact on children. Some participants expressed concerns about their future dependence on others; others felt they already were a burden on family members or even on their children. Nearly all parents expressed concerns related to their expected early mortality, especially the emotional impact on children and co-parents.

Parent-child communication concerns

All but one parent expressed concerns about communication with their children. Participants expressed uncertainty about how to discuss CF with their children, such as how to communicate at a developmentally-appropriate level. Only one parent recalled receiving guidance about communicating with children from a member of their CF team.

Nearly all parents endorsed a desire and intention to be open and honest with their children about CF; parents also emphasized the importance of framing discussions to protect children from the burden of fear or worry. A mother of two school-age children described, “I’m never going to lie to them about it but I’m also not going to bring forth worry.” Half of parents said that their children knew they had CF; some had specifically discussed their shortened life expectancy. Other parents reported that their children were too young to understand anything about CF.

The Benefits of CF and Parenting

Positive impact of having CF on parenting

While participants described many challenges of parenting with CF, they also emphasized parenting strengths that they attribute to having CF. Participants highlighted strengths such as using their illness to teach empathy to their children, helping children take their own medications, and teaching their children about life more openly. Some parents felt that they were more intentional about how they spend time with their children. A father of two young children explained, “I hear the tick of the clock a little bit more [compared to parents without life-limiting illness],” and a mother of two school-age children described, “just celebrating every moment that we’re given.”

Positive impact of having children on CF management

Participants described the potential or actual positive impact that having children had on their disease self-management and their identity. Most participants felt they were, or would be, more adherent to daily treatment regimens because of greater motivation to stay healthy and live longer for their children. A mother stated, “…of course I always wanted to have tomorrow but now it is way more important.” Others described achieving a newfound sense of normalcy through parenthood. A father of two young children described, “One thing I love about being a parent and having CF is that it actually makes me feel, I don’t like to use this word, but it makes me feel normal … now I’m a parent who has all of these other things that I have to think about that aren’t related to my chronic illness, and I kind of love that.”

Participant Recommendations for Discussions between CF Providers and Patients

Table 4 outlines participants’ recommendations for reproductive health discussions that CF providers can have with patients, including at what age to start such conversations, what to discuss, and how to present the information.

Table 4.

Participants’ Recommendations for Discussions between CF Care Teams and Patients

Category Recommendation (Number of participants)
When to initiate discussion • Prior to puberty (4)
• Mid- to late- teenage years (14)
• When patients are in a serious relationship (1)
Who should initiate discussions • Pulmonologist or a member of CF care team (15)
• Patients should be responsible for initiating such discussions or that they would be more comfortable bringing it up themselves (5)
How information should be shared • Conversations between patients and CF provider (13)
 ○ Providers should discuss with patients’ parents first (2)
 ○ Supplement conversation with written or online materials (9)
 ○ Supplement conversation with videos (2)
 ○ Supplement with conversations between CF patients (3)
• Written or online materials as primary source of information (4)
• Conversations between CF patients as primary source of information (1)
• Conversations between patient and social worker as primary source of information (1)
What to discuss
  Education topics • CF-specific reproductive anatomy and physiology (5)
• Infertility and fertility treatment options (12)
• Birth control [for both men and women] (8)
• Pregnancy: i.e. changes in lung function related to pregnancy, medication safety during pregnancy and breastfeeding (8)
• Genetics/heritability of CF (5)
• Parent-child communication (7)
  Acceptance from providers • Providers can validate patients’ reproductive health decisions and desire for children (9)
• Providers can enhance their understanding of how patients’ illness influences their life priorities (6)
  Social Support • Providers can strongly recommend for potential parents to establish robust support systems prior to having children (8)
• Providers can offer patients online support forums for individuals with CF who are parents or considering parenthood (10)

Men emphasized that providers could provide more information about infertility and fertility treatment options; women focused on the importance of CF-specific education on birth control and pregnancy. Nearly all male participants felt that CF providers should be forthcoming with teenagers about male infertility but cautioned that providers needed to simultaneously emphasize the importance of sexually transmitted infection protection during this conversation. Nearly all parents emphasized that CF providers could help patients by strongly recommending patients establish robust support systems prior to having children, in anticipation of acute illnesses and expected decline in health. Participants generally desired reproductive health and parenting information via individual conversations with CF providers with supplemental written or online materials. Peer support, in the form of an online forum for individuals with CF to discuss their parenting concerns and to seek advice from individuals who have experienced similar dilemmas and challenges, was suggested by ten participants.

CONCLUSIONS

The growing cohort of individuals with CF who are contemplating parenthood and becoming parents presents important clinical opportunities and challenges. In novel areas of inquiry with limited empirical evidence, qualitative studies can guide future research and, ultimately, clinical care23. This study suggests multiple challenges for individuals with CF. Individuals with CF may not be receiving timely, accurate, and comprehensive education about reproductive health related to CF, and they have wide-ranging concerns about how their illness and parenting intersect. Nonetheless, while parenthood often complicates patients’ efforts to maintain their health, having children serves as a powerful motivator for treatment, and more importantly, being a parent enriches their lives. As Kazmerski et al. highlighted, the “sense of normalcy” that individuals with CF experience by becoming parents is an important motivator for parenthood12. Taken together, understanding the role of parenting is critical to understanding the experience of parents with CF.

Participants in our study corroborated several concerns that were addressed in the few prior studies on parenting with CF and also raised concerns that have not been previously described. Confirming findings from Barker, Jessup, and Cammidge, participants recognized that parenting required a shift in priorities and increased preparation for the future1719. Parents struggled with the responsibilities of fulfilling current and anticipated needs of their children while engaging in time-intensive efforts to maintain their health. As described by Barker et al, parents with CF experience their role as “being a parent on compressed time”17. Parents in our study echoed this phenomenon, trying to “make the most” of their time with their children. Importantly, this concern extended to individuals prior to parenthood; non-parents questioned whether to have children if they were unlikely to survive to raise children to adulthood.

Communication with children about CF, a topic not emphasized in prior studies, was a substantial concern among participants in our sample. Despite parents’ desires to be open with children about their illness, uncertainty about how to talk about CF with their children caused parents to avoid or postpone these desired conversations. Participants’ CF providers regrettably did not prepare them for such conversations, though many participants desired such guidance.

Our study must be contextualized by its limitations. Given the lack of knowledge on these topics, our study was exploratory and hypothesis-generating by design rather than a definitive inquiry of reproductive and parenting needs of individuals with CF. Participants in this study reflect the opinions of individuals receiving care at a tertiary care, academic hospital; their experiences may differ from individuals who receive care from smaller CF care teams where providers may have less experience with counseling about reproductive health, and access to specialized obstetrical and fertility services may be limited. We purposively sampled both men and women with and without children, but additional characteristics meriting further exploration include the influence of family structure, social support, stage of illness, and health literacy. Larger studies could provide data more representative of the CF population and thus drive future interventions to address the concerns of parents and potential parents with CF.

Despite the above limitations, this study provides relevant, practical information to improve the care of individuals with CF. Providers can offer patients more than a discussion about infertility and potential impacts on their health by engaging multidisciplinary team members to effectively address psychosocial concerns. To accomplish this goal, CF care teams can explore whether adolescent and young adult patients have considered becoming parents and can provide standardized education about reproductive health and parenting, ensuring that information is accurate and that patients have the opportunity to ask questions and to correct misinformation. CF providers can also address parenting concerns and engage in candid conversations about the need for social support during times of acute illness and as a parent’s health declines.

There are several promising areas of future research, including larger confirmatory studies, studies that include spouses/partners and children of individuals with CF to directly assess their needs, and assessment of CF providers’ approach to their patients’ parenting concerns and questions. Results of these studies can ultimately improve our understanding and response to the needs of families affected by CF and ultimately, improve their health outcomes.

Research Support Acknowledgements

This work was supported by the National Center for Advancing Translational Sciences (NCATS) of the National Institutes of Health (NIH) through Grant Award Numbers 1KL2TR001109 (Park) and 2KR781603 (Hailey), the NIH through Grant Award Number 5K07CA218167–01 (Park) and the Doris Duke Charitable Foundation through Grant Award Number 2015213 (Park). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

Footnotes

The authors declare that there is no conflict of interest. No competing financial interests exist.

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