'The Hero's journey': Narratives on the transition to motherhood with cystic fibrosis

“英雄之旅”:囊性纤维化患者向母亲角色转变的叙事

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Abstract

OBJECTIVES: This study aimed to explore the impact of cystic fibrosis (CF) on the transition to motherhood using a strength-based narrative approach. It sought to elevate the voices of women with CF and examine how they navigate pregnancy and early motherhood in the context of chronic illness. DESIGN: A qualitative narrative study was conducted, led by a researcher with lived experience of CF and motherhood. The study adopted a co-constructed, interpretive epistemology to centre participant perspectives and challenge deficit-based clinical narratives. METHODS: Ten Australian women with CF who had given birth within the past 5 years participated in in-depth, semi-structured interviews. Narratives were analysed using holistic and categorical methods, including thematic coding and story mapping. Reflexive collaboration and participant validation were used to enhance trustworthiness. FINDINGS: Narratives consistently followed the 'Hero's Journey' archetype, with participants portraying themselves as resilient protagonists. Key strengths included hope, leadership, discernment, child-focus and optimism. While healthcare providers were often described as supportive allies, antagonistic interactions-particularly during pre-pregnancy counselling-undermined trust and joy. Postpartum, women struggled to balance CF treatment with mothering roles, often prioritising their child over medical compliance. Breastfeeding emerged as a specific area of conflict between maternal values and clinical expectations. CONCLUSIONS: Women with CF demonstrate significant strengths in navigating motherhood, yet face systemic challenges in receiving holistic, collaborative care. This study highlights the value of lived experience-led research and calls for healthcare teams to offer more tailored postpartum support and nuanced guidance around treatment, parenting and breastfeeding.

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