Design Opportunities at the Intersection of Sexual and Reproductive Health, Cystic Fibrosis, and Technology

Paper Title

Design Opportunities at the Intersection of Sexual and Reproductive Health, Cystic Fibrosis, and Technology

Publication Info

• Topic area: Intersection of chronic disease management and sexual and reproductive health (SRH) through technology.
• Keywords: Cystic Fibrosis, sexual and reproductive health, FemTech, chronic conditions, menstruation, pregnancy, menopause, digital health, patient-centered care, multidisciplinary care.

Background and Problem

• Problem / challenge: Current technologies and clinical practices inadequately address the intersection of cystic fibrosis (CF) and female sexual and reproductive health (SRH). These gaps include fragmented care, lack of tailored technological solutions, and insufficient clinical knowledge about SRH stages in CF.
• Significance: Advances in CF modulator therapies have extended life expectancy, making SRH stages like pregnancy and menopause more common for people with CF. Addressing these challenges is critical to improving health outcomes and quality of life.
• Motivation and related work: Prior research has explored CF management and SRH technologies separately, but little has been done to integrate these domains. Existing tools focus on respiratory health or general SRH without considering the unique complexities of CF. This paper builds on Human-Computer Interaction (HCI) research to address these gaps.

Solution

• Proposed approach: A qualitative study to explore the lived experiences of people with CF across SRH stages, identifying design opportunities for technological interventions.
• Novelty:
  1. Empirical insights into the intersection of CF and SRH across menstruation, pregnancy, and menopause.
  2. Design implications for technologies that integrate CF and SRH care, including apps, online platforms, and clinical tools.
  3. Recommendations for AI-enabled decision-support systems tailored to CF and SRH.
• Procedure and key techniques:
  • Conducted semi-structured interviews with 16 participants (ages 27–53) with CF, covering different SRH stages.
  • Data analyzed using reflexive thematic analysis to identify key themes and design opportunities.
  • Focused on lived experiences, care challenges, and potential technological interventions.

Results

• Concrete findings:
  • Menstrual health: Hormonal fluctuations exacerbate CF symptoms, yet SRH is often overlooked in CF care.
  • Pregnancy: High-risk decisions involve balancing personal health and fetal safety, with fragmented care across CF and obstetrics teams.
  • Menopause: Symptom overlap with CF creates diagnostic challenges, and clinicians are often unprepared to address this stage.
• Advantage over baselines:
  • Identifies gaps in existing technologies and care systems, proposing integrated solutions that address both CF and SRH.
  • Highlights opportunities for AI, digital health tools, and online peer support to reduce care fragmentation and improve patient outcomes.
• Experiments / evaluation:
  • Semi-structured interviews with participants recruited via social media and the Cystic Fibrosis Trust.
  • Data collected on experiences with CF and SRH, use of technology, and care system interactions.
  • Reflexive thematic analysis identified nine themes across three SRH stages.
• Limitations and future work:
  • Limited generalizability due to UK-centric participant pool and online recruitment bias.
  • Future work should explore international contexts, larger sample sizes, and longitudinal studies.
  • Development and testing of proposed technologies, including AI-enabled tools and integrated care platforms, are needed.

Summary

This study explores the intersection of cystic fibrosis (CF) and female sexual and reproductive health (SRH), identifying significant gaps in care and technology. Through interviews with 16 participants, the research highlights challenges across menstruation, pregnancy, and menopause, including fragmented care, diagnostic ambiguities, and emotional burdens. The findings suggest opportunities for digital health tools, such as integrated tracking apps, online peer support platforms, and AI-enabled decision-support systems, to address these gaps. These insights have broader implications for designing technologies that support complex, intersecting health concerns in chronic care.