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.

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.

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.

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.

Infertility-related stress: A concept analysis.

AIM: To develop a clear definition of infertility-related stress using Rodgers' method of concept analysis. BACKGROUND: Infertility affects approximately 13% of women in the United States. Though poorly defined in the literature, previous studies suggest infertility-related stressors contribute to psychological distress. DESIGN: Rodgers' method of concept analysis guided the review, including sample and setting, literature search, and data analysis. DATA SOURCE: PubMed, CINAHL, and PsycINFO were searched for relevant literature. REVIEW METHODS: Following abstract, title, and text screenings, 21 articles were included and reported using the PRISMA-S checklist. Texts were analyzed and results informed the proposed definition of infertility-related stress. RESULTS: Antecedents included infertility, desire for children, and fear of the unknown. Attributes were identity crisis, social isolation and stigma, sexual stress, and financial strain. Consequences included treatment dropout and marital strain. Anxiety, depression, and decreased quality of life were identified as both attributes and consequences. CONCLUSIONS: Synthesized results informed a proposed definition of infertility-related stress. Improved understanding of infertility-related stress allows for measurement development and facilitates recognition of patients in need of additional support, while potentially reducing the impact on the health and well-being of infertile women.