A phenomenological exploration of the mental health experiences of young women with diminished ovarian reserve.

Infertility is a reproductive disease affecting one in six individuals that renders an individual unable to conceive. One cause of infertility is diminished ovarian reserve (DOR), which reduces the quantity and/or quality of a female's oocyte pool. Although typically indicating normal ovarian aging during the late 30s and early 40s, DOR can also impact younger women, increasing their risk for psychological distress from an unexpected diagnosis of infertility. A phenomenological approach examined the mental health experiences and perceptions of infertility-related mental health care of young women with DOR. Women diagnosed with DOR by age 35 in the United States who experienced emotional distress during infertility were recruited from infertility-specific social media and via snowball sampling. Participants completed a demographic survey and semi-structured individual interview that was audio-recorded, transcribed verbatim, and analyzed using a phenomenological approach. Ten women ages 27-41 completed the study. On average, participants were 30 years of age at the time of DOR diagnosis (age range 25-35), primarily Caucasian (90%), and married (90%). Two main themes were found: (1) Young women with DOR feel like a "forgotten community" coping with an invisible disease; and (2) Not all fertility clinics are created equal. Participants perceived their diagnosis as devastating and hopeless and urged others to find a provider with ample experience treating patients with DOR. This study helped to understand how young women with DOR perceive their mental health and identified a significant need for advancing towards more holistic infertility healthcare that encompasses both physical and mental health.

Parental entrustment of healthcare responsibilities to youth with chronic conditions: A concept analysis.

PURPOSE: Chronic health conditions impact nearly 40% of children in the United States, necessitating parents/caregivers to entrust healthcare responsibilities to youth aging into adulthood. Understanding the parental entrustment process may lead to tailored transition support; however, the concept lacks conceptual clarity, limiting its research and practical applications. DESIGN AND METHODS: Rodgers' evolutionary concept analysis method was used to clarify the parental entrustment of healthcare responsibilities to youth with chronic health conditions. PubMed, CINAHL, and PsycINFO databases were searched without date restrictions, including full-text, English-language, primary source articles related to parent-child healthcare transition preparation. Following title, abstract, and full-text screenings, data were analyzed using a hybrid thematic approach to identify antecedents, attributes, and consequences. RESULTS: Forty-three studies from August 1996 to September 2023 were identified. Antecedents encompass social cues and readiness factors, while attributes involve a) responsibility transfer, support, and facilitation, b) a dynamic process, c) balancing trust and fear, d) navigating conflict, and e) parental letting go. Consequences entail shifts in parental and adolescent roles. Parental entrustment is an iterative process wherein parents guide their maturing child through responsibility transfer via facilitation, support, conflict navigation, and trust building. CONCLUSION: The clarified concept underscores the role of parents/caregivers in empowering youth to manage their health. Introducing a working definition and conceptual model contributes to understanding the processes families navigate in the larger landscape of healthcare transition. PRACTICE IMPLICATIONS: This clarification holds implications for clinicians and policymakers, offering insights to enhance support and guidance for families navigating healthcare transition.

A review of the psychometric properties and implications for the use of the fertility quality of life tool.

OBJECTIVES: To analyze and synthesize the reported psychometric properties of the Fertility Quality of Life (FertiQoL) instrument and describe its implications for use in practice and research in men and women with infertility. METHODS: A systematic literature search was performed to identify all articles using the FertiQoL tool. PubMed, CINAHL, and PsycINFO were searched from September 2006 through May 2022. Studies were eligible for inclusion if they reported psychometric data on the original FertiQoL tool using a sample population of individuals with infertility. Sample size, country of origin, and psychometric data were documented for each study. RESULTS: The initial search revealed 153 articles that had utilized the FertiQoL. Following abstract, title, and full-text screenings, 53 articles reported psychometric data and met criteria for inclusion. The FertiQoL is a sound measurement with satisfactory reliability and validity. Studies indicated adequate reliability in the overall scale ([Formula: see text]), as well as the core Emotional, Mind/Body, Social, and Relational scales ([Formula: see text]) and two optional Tolerability and Environment fertility treatment subscales ([Formula: see text]). Although the Relational subscale exhibited slightly lower reliability in several studies, the internal consistency for the measurement as a whole was satisfactory. Results also indicate adequate: 1) face and content validity with extensive professional and patient feedback during development; 2) convergent validity with general quality of life, depression, and anxiety measurements; and 3) structural validity using both confirmatory and exploratory factor analyses. CONCLUSION: The FertiQoL tool is the most commonly used instrument to measure the impact of fertility issues on quality of life in men and women with infertility. Understanding the impact of infertility on quality of life provides valuable insight into the areas of infertility-related care that need to be prioritized, such as mental health or relational stressors. While the instrument has been used in different patient populations with infertility and available in multiple translations, it is necessary to understand the updated psychometric properties and the implications for its use. This review shows that the FertiQoL is reliable and valid for cross-cultural use among individuals with various etiologies of infertility.

The impacts of adrenoleukodystrophy newborn screening on the evaluation of adrenal dysfunction in male children: An integrative literature review.

PROBLEM: Adrenoleukodystrophy (ALD) is an x-linked genetic condition with a high risk of adrenal dysfunction recommended for newborn screening. This review aims to critically appraise and synthesize existing literature identifying the impacts of ALD newborn screening in the United States on the evaluation and treatment of adrenal dysfunction in male children. ELIGIBILITYCRITERIA: An integrative literature review was conducted using the Embase, PubMed, and CINAHL databases. English-language primary source studies published in the past decade and seminal studies were included. SAMPLE: Twenty primary sources met the inclusion criteria, including five seminal studies. RESULTS: Three major themes emerged from the review: 1) prevention of adrenal crisis, 2) unexpected outcomes, and 3) ethical impacts. CONCLUSIONS: ALD screening increases disease identification. Serial adrenal evaluation prevents adrenal crisis and death; data is needed to establish predictive outcomes in ALD prognosis. Disease incidence and prognosis will become more apparent as states increasingly add ALD screening to their newborn panel. IMPLICATIONS FOR PRACTICE: Clinicians need awareness of ALD newborn screening and state screening protocols. Families first learning of ALD through newborn screening results will require education, support, and timely referrals for appropriate care.

Fertility preservation in women with cystic fibrosis pre-lung transplantation: A mixed methods study.

AIMS: Explore the knowledge, experiences, preferences, and concerns related to fertility preservation as an option for building a biological family among women with cystic fibrosis. DESIGN: Convergent mixed methods study design. METHODS: We recruited women with cystic fibrosis of childbearing age in the United States through cystic fibrosis centres, snowball sampling, and social media. Participants completed an anonymous survey about fertility and fertility preservation (n = 50). We also conducted audio-recorded, semi-structured interviews with a subset of women to gain a better understanding of their perspectives (n = 20). We transcribed the interviews verbatim and analysed them using thematic analysis. RESULTS: For the quantitative arm, 78% of women indicated that they would like to have a child in the future; however, 74% reported never having had conversations about fertility preservation with their providers. For the qualitative arm, four major themes emerged: (1) Women with cystic fibrosis have inadequate knowledge about fertility and fertility preservation; (2) fertility is a low priority area for the cystic fibrosis care team; (3) women with cystic fibrosis recommend that the cystic fibrosis care team provide specific fertility resources; and (4) providers and literature lack information on fertility and cystic fibrosis. Integrated findings identified that while the majority of women with cystic fibrosis want to become mothers in the future, including post-lung transplantation, they have not received education on fertility preservation, and there is a general lack of knowledge on the topic of fertility in cystic fibrosis. CONCLUSION: Women with cystic fibrosis desire to have children but have little knowledge about fertility preservation, and cystic fibrosis providers do not initiate family planning discussions. IMPACT: Findings from the study support that additional education is needed for women with cystic fibrosis who are considering parenthood. Clinical care models should include early, regular, and thoughtful discussions about reproductive health issues, including fertility preservation.

Retropharyngeal abscess in a post-lung transplant cystic fibrosis patient with prior cervical fusion: a case study.

BACKGROUND: Cystic fibrosis (CF) is a chronic, genetic, incurable disease that affects primarily the respiratory and gastrointestinal systems. End-stage lung disease is the leading cause of death in people with CF, and lung transplant is required to preserve life. Anti-rejection medications are necessary post-transplant; however, these medications lower immune response and increase susceptibility to bacterial infections. Complications from infections post lung-transplant account for approximately 30% of CF-related deaths. Retropharyngeal abscess (RPA) is a rare deep neck infection that occurs most commonly in children. This is the case of a 45-year-old Caucasian male with CF who developed a retropharyngeal abscess post wisdom teeth extraction that seeded into hardware from a previous cervical disc fusion. CASE PRESENTATION: The patient presented to the emergency department with severe neck and shoulder pain, limited range of motion in his arm and neck, and dysphonia. He reported feeling pain for 10 days and suspected the pain was caused by a weightlifting injury. The patient reported low-grade fever 5 days prior, which responded to acetaminophen. He was afebrile upon admission and in no respiratory distress. Diagnostic labs revealed WBC 22,000/uL and CRP 211 mg/L. The CT scan showed a large abscess in the retropharyngeal space between C2-C7. The immediate concern was airway obstruction and need for possible intubation or tracheostomy. The patient was transferred to ENT service with neurosurgery and transplant consults. The RPA was drained and lavaged. The cervical hardware was discovered to be infected and was removed. The source of the RPA infection was determined to be from the patient's wisdom teeth extraction 6 months prior to RPA. The patient received 8 weeks of intravenous ceftriaxone for Streptococcus pneumoniae bacteremia and underwent revision of his cervical fusion 3 months after hardware removal. CONCLUSIONS: Clinicians should consider prophylactic antimicrobial therapy for immunocompromised patients when they are at increased risk for transient bacteremia such as following invasive procedures (e.g., tooth extraction). Prophylactic antimicrobial therapy could prevent potentially life-threatening infections such as RPA in immunocompromised patients.

Adolescents' perceptions of sexual health education programs: An integrative review.

INTRODUCTION: Adolescents are key stakeholders in sexual health education, yet they are rarely consulted when developing sexual health programs. Their voices are integral to improving the delivery of relevant and appropriate school-based sexual health education to promote safer adolescent sexual behaviors. METHODS: An integrative review was conducted utilizing three databases: Cumulative Index of Nursing and Allied Health Literature (CINAHL) Complete, PubMed, and Education Resources Information Center (ERIC). The PRISMA and matrix method were used to search the literature and synthesize the findings from 16 articles regarding adolescent perceptions of school-based sexual health education. RESULTS: The main themes that emerged from this review included: (a) factors influencing adolescent perceptions of sexual health education programs, (b) characteristics of good sexual health education programs, and (c) areas of improvement in sexual health education programs. CONCLUSION: Adolescents overwhelmingly requested honest, comprehensive content delivered by nonjudgmental, well-educated health professionals in a comfortable environment.

Concept Analysis of Health Care Transition in Adolescents with Chronic Conditions.

Children with chronic conditions are living into adulthood and present with unique needs. One such need is their transition from pediatric to adult health care. This paper examined the literature to analyze and synthesize the concept of transition within two contexts, health care and adolescents with chronic conditions. Fifty multidisciplinary sources were included for analysis. A refined, working definition of the concept of health care transition in adolescents with chronic conditions is presented. Results will enable the scientific community to discuss salient issues using well-defined, uniform terminology. Nursing implications are delineated to ensure that these youths thrive into adulthood.

Transcending Limitations: A Phenomenological Exploration of How Hygge Practices Enrich the Lived Experiences of Adults with Cystic Fibrosis.

Hygge practices embody joy, peace, mindfulness, coziness, and conviviality. Cystic fibrosis (CF) is a progressive condition with complex therapies and physical limitations. Little is known about how hygge practice may impact individuals living with CF. A qualitative study explored how adults with CF use hygge practices to promote wellness and cope with their disease. A purposive network sample of 15 adults with CF who utilized hygge practices completed semistructured audio-recorded telephone interviews. Recordings were transcribed and analyzed using Colaizzi's thematic analysis approach. Results reveal that hygge practices influenced individuals' aesthetics, attitudes, and activities, deeply impacting the physical and emotional experience of living with CF. Incorporating hygge into CF care may improve psychological well-being and quality of life for members of this community.

Traveling the road toward academic promotion for faculty with a DNP degree.

There is a widely recognized need for nursing faculty in the United States. To prepare a practice-ready workforce, schools of nursing are hiring faculty with Doctor of Nursing Practice (DNP) preparation to ensure clinical expertise is embedded into curriculum by practice experts. However, nurses transitioning from clinical nursing to faculty positions require tailored support and guidance in navigating the academic environment. Preparation for academic promotion is essential to integration into an academic setting. Support in navigating the new environment is essential for building confidence, to lay a foundation for a successful transition, and ultimately retaining these qualified educators. This article provides strategies to support nursing faculty planning to embark on an academic career track and provides guidance on how to prepare these DNP-prepared faculty for career progression and future promotion along academic ranks. These strategies include school and institutional orientation, faculty development plans, mentorship, leadership development, and performance review processes.

Implementation and evaluation of a fertility preservation telehealth counseling intervention for males with cystic fibrosis.

BACKGROUND: Most males with cystic fibrosis (MwCF) have congenital bilateral absence of the vas deferens and require assisted reproductive technology to conceive, yet many have limited knowledge about how CF affects sexual and reproductive health (SRH). This study evaluates the feasibility, acceptability, and potential effectiveness of telehealth fertility preservation (FP) counseling for MwCF. METHODS: Pre-lung transplant MwCF ≥18 years, recruited from U.S. CF centers, social media, and via snowball sampling, received individualized telehealth counseling. Participants completed intervention feasibility/acceptability one week post-counseling and FP knowledge, care satisfaction, and self-efficacy assessments at baseline and two months post-counseling. We completed acceptability interviews one-week post-counseling and audio-recorded, transcribed, and thematically analyzed results. We descriptively analyzed survey results and conducted pre/post comparisons using paired t-tests. RESULTS: Thirty MwCF (ages 22-49 years) completed counseling. Most were in a relationship (70 %) and White (86.7 %). Telehealth FP counseling was acceptable (M = 4.38/5 ± 0.60), appropriate (M = 4.37/5 ± 0.60), and feasible (M = 4.60/5 ± 0.45) to MwCF. FP knowledge (9.53 vs. 10.40/12; p = .010), care satisfaction (20.23 vs 26.67/32; p<.001), and self-efficacy (22.87 vs 25.20/30; p = .016) improved at two months post-counseling. Despite desiring provider-initiated SRH, wanting children (81 %), and perceiving the CF team as their primary care provider (97 %), 44 % report not receiving information about infertility by the CF team. CONCLUSIONS: Integrating FP counseling into CF care is feasible and acceptable to MwCF and can improve FP knowledge, self-efficacy, and care satisfaction. MwCF desire early and regular provider-initiated SRH education.

Prioritizing sexual and reproductive health research and care for people with cystic fibrosis: A 2023 workshop report from the Cystic Fibrosis Foundation Sexual Health, Reproduction, and Gender (SHARING) Research Working Group.

BACKGROUND: To address sexual and reproductive health (SRH) concerns among people with cystic fibrosis(PwCF), the CF Foundation created the Sexual Health, Reproduction, and Gender Research (SHARING) Working Group. This report summarizes CF community SRH research priorities and workshop discussions/future study planning. METHODS: Pre-workshop, we distributed a community prioritization survey on CF SRH research/care. During the workshop, we used results and reviewed existing research to establish research priorities and design studies to address identified knowledge gaps. RESULTS: A total of 303 respondents (85 % PwCF, 15 % caregivers) completed the survey. Highly-rated SRH topics were: 1) effects of CF modulator therapy on sex hormones; 2) effects of sex hormones on CF; 3) fertility; 4) pregnancy; and 5) SRH/mental health. Twenty-four workshop participants established the need for further research on sex hormones and CF, optimizing SRH care provision, and fertility/ART. CONCLUSION: SRH is an important and emerging area in CF and thoughtful consideration of community perspectives can ensure that future research is relevant and responsive.

Provider Perspectives on Fertility and Fertility Preservation Discussions Among Women With Cystic Fibrosis.

Cystic Fibrosis (CF) is a genetic disorder that primarily impacts the respiratory and gastrointestinal systems. With advances in treatment and medications, the life expectancy of people with CF is continuing to increase with current life expectancy at 47 years of age. Given the increased life expectancy, people with CF are interested in childbearing but may have CF specific fertility issues that should be addressed by their CF healthcare provider. Currently, these conversations are not occurring or are suboptimal. This study aimed to investigate the practices of cystic fibrosis (CF) healthcare providers regarding fertility and fertility preservation (FP) discussions among women with CF. This was a qualitative, descriptive study. Twenty CF healthcare providers were interviewed including nurses, nurse practitioners, social workers, and dieticians among other disciplines. The semi-structured interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis. Four themes emerged from the provider interviews about their fertility and FP discussion practices: (1) Change over Time; (2) CF Team Provides Primary Care including Reproductive Health Care; (3) Patient Support and Advocacy; and (4) Barriers and Facilitators to FP Discussions. The results of this study demonstrate an opportunity for CF healthcare providers to deliver patient-centered care. However, CF providers need to be educated on fertility and FP options. Additionally, there is a need for a more standardized structure of care to address the reproductive health of women with CF. The findings from this study may also be useful to non-CF providers who deliver care to women whose chronic illnesses impact their reproductive health.

Transitioning to telehealth during the coronavirus disease 2019 pandemic: Perspectives from partners of women with cystic fibrosis and healthcare providers.

OBJECTIVES: Cystic fibrosis is a chronic, genetic disease that primarily affects the respiratory system. The coronavirus disease 2019 pandemic has altered how people with cystic fibrosis receive healthcare. This paper explores the perceptions of cystic fibrosis healthcare providers and partners of women with cystic fibrosis regarding the use of telehealth in routine cystic fibrosis healthcare in the US. METHODS: As part of a larger study examining fertility counseling for women with cystic fibrosis, we conducted qualitative, semi-structured interviews. Participants included partners of women with cystic fibrosis (n = 20) and cystic fibrosis healthcare providers (n = 20). We completed the interviews before and during the global coronavirus disease 2019 pandemic. We analyzed the data using thematic analysis. RESULTS: When in-person healthcare could not be achieved safely, partners and healthcare providers found new value in telehealth. Three themes emerged: (1) increased connection between healthcare team and family, (2) increased efficiency of healthcare appointments, and (3) improved interdisciplinary collaboration. Partners found that telehealth allowed for more engagement in their significant others' healthcare. Providers reported enhanced efficiency and opportunities for collaboration across specialties that improved healthcare delivery and care coordination. DISCUSSION: Results from this study highlighted the positive value of telehealth. Telehealth presents as a potential alternative to delivering outpatient care for people with chronic illnesses beyond the pandemic.

The Lived Experience of African American Persons with Cystic Fibrosis.

Background: Cystic fibrosis (CF) is a rare genetic disease affecting approximately 30,000 people in the United States (US). African American persons with CF are even rarer, comprising approximately 5% of this population. Purpose: The purpose of this study was to explore the lived experiences of African American persons with CF to identify potential disparities in health care. Methods: Descriptive phenomenology was used to explore lived experiences of African American persons with CF over age 18 recruited from CF Foundation-accredited Centers in the US, CF-specific social media, and via snowball sampling. Study data was obtained through telephone interviews that were audio-recorded, transcribed verbatim, and analyzed using Colaizzi's method of thematic analysis. Results: Six men and six women (ages 23-45) completed the study. Interviews revealed three themes: (1) Accepting a Diagnosis of CF; (2) Desiring a Normal Life while Living with an Invisible Disease; and 3) A Slippery Slope of Subtle Racism. Each theme had 2-3 subthemes. Conclusions: It is critical to explore the unique challenges faced by African American persons with CF in order to develop interventions that improve their daily lives and create better futures. Implications for Practice: Findings highlight the unique challenges faced by underrepresented groups with CF and the need to address health inequities to improve care delivery.

Clinician perspectives and practices related to sexual and reproductive care provision for males with cystic fibrosis.

BACKGROUND: Males with cystic fibrosis (MwCF) have unique sexual and reproductive health (SRH) concerns. This study investigates multidisciplinary CF clinician perspectives related to SRH for MwCF in the current era of CF care. METHODS: We surveyed multidisciplinary clinicians exploring attitudes, practices, and preferences toward male CF SRH care. We compared responses across groups by population served (pediatric vs. adult vs. both pediatric and adult MwCF) using chi square/Fisher's exact tests. RESULTS: A total of 297 clinicians completed the survey (41 % pediatric, 36 % adult, 23 % both; 27 % physicians, 24 % social workers, 11 % nurses, 41 % other). Nearly all (98 %) believed the CF team had a role in SRH care with 75 % believing they should be primarily responsible. Pediatric clinicians were less likely to deem SRH topics important and less likely to report annual discussions compared to adult colleagues (all p<0.05). Pediatric clinicians reported less comfort in their SRH knowledge than adult colleagues (p<0.001) and in their ability to provide SRH care (p<0.05). Common barriers endorsed by respondents included lack of SRH knowledge (75 %) and presence of family/partners in exam room (64 %). A majority rated SRH screening tools (91 %), partnerships with SRH specialists (90 %), clinician training (83 %), and management algorithms (83 %) as potential facilitators. CONCLUSION: Multidisciplinary CF clinicians perceive SRH for MwCF as important but report suboptimal SRH discussions. Pediatric clinicians report significantly less comfort and skill in discussing and managing male SRH. Identified barriers and facilitators should be used to improve SRH care for MwCF.

What Is Most Important to Family Caregivers When Helping Patients Make Treatment-Related Decisions: Findings from a National Survey.

Prioritizing patient values-who/what matters most-is central to palliative care and critical to treatment decision making. Yet which factors are most important to family caregivers in these decisions remains understudied. Using data from a U.S. national survey of cancer caregivers (N = 1661), we examined differences in factors considered very important by caregivers when partnering with patients in cancer treatment decision making by cancer stage and caregiver sociodemographics. Fifteen factors were rated on a 4-point Likert-scale from 'very unimportant' to 'very important.' Descriptive statistics were used to characterize caregiver factors and tabulate proportions of importance for each. Generalized linear mixed effect modeling was used to examine the importance of factors by cancer stage, and chi-square analyses were performed to determine associations between caregiver sociodemographics and the five most commonly endorsed factors: quality of life (69%), physical well-being (68%), length of life (66%), emotional well-being (63%), and opinions/feelings of oncology team (59%). Significant associations (all p's < 0.05) of small magnitude were found between the most endorsed factors and caregiver age, race, gender, and ethnicity, most especially 'opinions/feelings of the oncology team'. Future work is needed to determine the best timing and approach for eliciting and effectively incorporating caregiver values and preferences into shared treatment decision making.

Sexual and reproductive health experiences and care of adult women with cystic fibrosis.

BACKGROUND: As survival and health improve in people with cystic fibrosis (CF), more women with CF (wwCF) are considering their sexual and reproductive health (SRH). This study compared SRH experiences, behaviors, and care utilization of wwCF to the general population and defined CF-impacted considerations and care preferences. METHODS: We surveyed wwCF aged ≥25 years regarding SRH and compared results to the US National Survey of Family Growth (NSFG;n = 4357) and friend controls(n = 123). We used descriptive statistics and chi-squared/Fisher's exact testing and linear regression for comparisons. RESULTS: A total of 460 wwCF (mean age 36.1 years) completed the survey. WwCF were less likely to report current contraceptive use (43%vs76% NSFG, p<0.001;60% friends, p = 0.005). Nearly 25% of wwCF reported worsened CF symptoms during their menstrual cycles, 50% experienced urinary incontinence, and 80% vulvovaginal candidiasis. WwCF were significantly less likely to be parents (46%vs62% friends, p = 0.015) and to have experienced pregnancy (37%vs78% NSFG, p<0.001;58% friends, p = 0.002). More wwCF required medical assistance to conceive (29%vs12% NSFG, p<0.001 and 5% friends, p<0.001). Eighty-four percent of wwCF view their CF doctor as their main physician and 41% report no primary care provider (vs19% friends; p<0.001). WwCF report suboptimal rates of contraceptive and preconception counseling/care and are less likely to have received HPV vaccination (42%vs55%friends, p = 0.02). Despite desiring SRH conversations with their CF team, <50% report discussing SRH topics. CONCLUSION: WwCF have significantly different SRH experiences than non-CF peers. They report suboptimal SRH care compared to their preferences highlighting an urgent need to encourage SRH counseling/care in the CF model.

Using Hygge to Promote Wellness and Coping With a Chronic Illness.

Hygge is a Nordic practice and mindset of creating warmth and comfort from within to improve one's wellness. Hygge has not been explored well in the scientific literature, especially in the context of a chronic illness. This article describes the experiences of an adult woman with cystic fibrosis, a progressive, incurable genetic disease primarily affecting the respiratory and gastrointestinal tracts, as she uses hygge to cope with the daily challenges of her illness. She also uses hygge as a framework for an online support group she founded to encourage other women with CF in their quest for optimal physical and emotional health. Hygge offers practical self-care behaviors that have the potential to make positive impacts on quality of life across healthy communities and those with chronic conditions, especially in the current setting of a global pandemic.

Paths to Motherhood for Women with Cystic Fibrosis.

PURPOSE: Cystic fibrosis (CF) is no longer a disease limited to childhood. With medical advancements, many of those with CF live into adulthood and have similar life goals as their non-CF peers. Most women with CF want to become mothers. However, available options and the related decision-making process is not well understood. The purpose of this study was to explore the decision-making framework of women with CF to better understand the factors they consider when deciding on a path to motherhood. STUDY DESIGN AND METHODS: Qualitative interviews were performed using a grounded theory approach. Inclusion criteria were women with CF who became mothers through biological pregnancy, adoption, or gestational surrogacy. Results: Twenty-five mothers with CF were interviewed. A distinct decision-making process was identified through which women started with a desire for motherhood, assessed several factors, then eventually took the path they felt was right for them and their family. CLINICAL IMPLICATIONS: Our findings provide women with CF a framework that other women with CF have used to assist in making decisions about their reproductive options. Conversations about family planning should occur early and regularly between women with CF and their health care providers. The decision-making process to achieve motherhood for women with a chronic illness, such as CF, includes consideration of unique factors that should be included in clinical conversations.