WS06.06Exploring experiences of people with cystic fibrosis who have become mothers in the CFTR modulator era

IF 5.4 2区医学 Q1 RESPIRATORY SYSTEM

Journal of Cystic Fibrosis Pub Date : 2025-06-01 DOI:10.1016/j.jcf.2025.03.527

R. Dobra , A. Downes , S. Madge , R. Robinson , R. Scott , J.C. Davies , I. Felton

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引用次数: 0

Abstract

Objectives

The increasing number of pregnancies in pwCF reflects the changing landscape. We aimed to explore the motherhood journey experienced by pwCF in the CFTR modulator era.

Method

Semi-structured interviews were conducted with pwCF who had received care under the new CF Reproductive & Maternal Health Service at The Royal Brompton. Interviews were recorded, transcribed, coded & analysed using thematic analysis in NVivo.

Findings

Thematic saturation was reached at 8 interviews, Nov22-Nov 23. Example concepts which illustrate the experiences of pwCF planning pregnancy & motherhood are outlined here:

ETI & family planning

1) ETI as main facilitator to pursue family planning. Subthemes a)Perception that ETI supports safer pregnancy, b)More energy to devote to motherhood, c)anticipated increase in life expectancy allowing mothers to see a child mature.

2) Complex decisions about continuation vs discontinuation of ETI during pregnancy/breastfeeding (BF) a)balancing risks of continuation/discontinuation on maternal/fetal health, b)wish for dedicated research in this area.

3) Gratitude for ETI & life opportunities/milestones previously thought unlikely.

4) Motherhood intensifying emotions regarding ETI including fear funding may be withdrawn & survivor guilt.

CF-identity & motherhood

1) Multiple identity shifts with dynamic changes in level of CF-significance & internal tension as to CF's significance.

2) CF influence on maternal-identity particularly pride at overcoming CF-related challenges & growing-up not having considered motherhood possible leading to increased levels of joy & anxiety.

3) Importance of peer support from other CF mothers.

Conclusions

Dedicated CF-maternal research is needed to optimise reproductive health & wellbeing for pwCF. Stakeholders affirm desire for more evidence to support decisions about ETI/pregnancy/BF; work has begun to understand biological outcomes & qualitative experiences with prospective studies MATRIARCH-CF(UK) & MAYFLOWERS(US).

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ws06.06在CFTR调节剂时代，探索囊性纤维化患者成为母亲的经历

目的pwCF患者妊娠数的增加反映了这一趋势的变化。我们旨在探讨pwCF在CFTR调制器时代所经历的母性历程。方法采用半结构化访谈方法，对在新CF生殖& &；皇家布朗普顿的产妇保健服务。采访被记录、转录、编码。在NVivo中使用主题分析进行分析。在11月22日至11月23日的8次采访中，主题达到饱和。举例说明pwCF计划怀孕经验的概念母亲在这里概述：ETI &；1) ETI作为推行计划生育的主要促进者。分主题a) ETI支持更安全怀孕的认知，b)将更多的精力投入到母亲身上，c)预期寿命的增加使母亲能够看到孩子成熟。2)关于在怀孕/哺乳期间继续或停止ETI的复杂决定（BF） a)平衡继续/停止ETI对孕产妇/胎儿健康的风险，b)希望在这一领域进行专门的研究。4)母性加剧了对ETI的情绪，包括担心资金可能被撤回& &；幸存者负罪感。CF-identity,1)多重身份转移与cf显著性水平的动态变化；2) CF对母亲认同的影响，特别是对克服CF相关挑战的自豪感的影响；在成长过程中，没有考虑过做母亲的可能性，这会增加快乐的程度。来自其他CF母亲的同伴支持的重要性。结论需要专门的cf -孕产妇研究来优化生殖健康；福祉为pwCF。利益相关者肯定希望有更多的证据来支持关于ETI/怀孕/BF的决定；了解生物学结果的工作已经开始。前瞻性研究的定性经验五月花号(美国)。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Cystic Fibrosis 医学-呼吸系统

CiteScore

10.10

自引率

13.50%

发文量

1361

审稿时长

50 days

期刊介绍： The Journal of Cystic Fibrosis is the official journal of the European Cystic Fibrosis Society. The journal is devoted to promoting the research and treatment of cystic fibrosis. To this end the journal publishes original scientific articles, editorials, case reports, short communications and other information relevant to cystic fibrosis. The journal also publishes news and articles concerning the activities and policies of the ECFS as well as those of other societies related the ECFS.