Personal narratives to support learning about lung transplant for people with cystic fibrosis

IF 2.9 2区医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH

Patient Education and Counseling Pub Date : 2025-05-05 DOI:10.1016/j.pec.2025.108822

Dave Young , Lauren E. Bartlett , Nick Reid , Andrea L. Hartzler , Miranda C. Bradford , Christopher H. Goss , Joseph M. Pilewski , Jordan M. Dunitz , Milene Saavedra , Donna L. Berry , Siddhartha G. Kapnadak , Mara R. Hobler , Kathleen J. Ramos

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引用次数: 0

Abstract

Objectives

Cystic fibrosis (CF) causes progressive respiratory disease and premature death. Lung transplantation (LTx) is an important treatment consideration for people with CF (PwCF). Among PwCF, does preparedness for LTx and knowledge about LTx improve by reading personal narratives from CF LTx recipients (“CF Stories”)?

Methods

Adults with CF were recruited and presented with online CF Stories. Pre- and post-intervention questionnaires assessed LTx preparedness, knowledge, and decisional conflict. Deductive thematic analysis of study visits was conducted.

Results

Twenty-five participants were included. Pre-intervention, 24 % (6/25) reported feeling “very prepared” to discuss LTx. Among the remaining 19, preparedness improved post-intervention for 74 % (n = 14, 95 % CI: 51–88 %), with 42 % (n = 8, 95 % CI: 23–64 %) transitioning to feeling “very prepared.” Baseline transplant knowledge was high (100 % questions correct) among 48 % (12/25) of participants; among the remaining 13, 92 % (n = 12, 95 % CI: 67–99 %) scored 100 % post-intervention. Decisional conflict improved for 67 % of participants (16/24), with a mean individual Decisional Conflict Scale change of −9.4 (95 % CI: −2.8, −15.9; p = 0.01). Thematic analysis revealed that participants valued practical LTx insights and relatable stories, identifying key medical information for LTx discussions.

Conclusions

CF Stories improved knowledge and preparedness for LTx discussions.

Practice Implications

Personal narratives could enhance preparedness for LTx discussions and decision-making for PwCF.

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支持囊性纤维化患者学习肺移植的个人叙述

目的囊性纤维化（CF）可导致进行性呼吸系统疾病和过早死亡。肺移植（LTx）是CF （PwCF）患者的重要治疗考虑。在PwCF中，通过阅读CF LTx接受者的个人叙述（“CF故事”），对LTx的准备和对LTx的了解是否有所提高？方法招募成年CF患者，并向其提供CF在线故事。干预前和干预后问卷评估LTx准备、知识和决策冲突。对访学进行演绎主题分析。结果共纳入25例受试者。干预前，24% %（6/25）表示感觉“非常准备”讨论LTx。在剩下的19个,准备改善干预74年 % (n = 95 % CI: 51 - 88 %),以42 % (95 n =  % CI: 23 - 64 %)过渡到感觉“非常准备。”在48 %（12/25）的参与者中，基线移植知识很高（100 %问题正确率）；其余13,92 % （n = 12,95 % CI: 67-99 %）干预后得分为100 %。67% %的参与者（16/24）的决策冲突得到改善，平均个人决策冲突量表变化为- 9.4(95% % CI: - 2.8, - 15.9； = 0.01页)。专题分析显示，与会者重视实用的长期治疗见解和相关的故事，确定了长期治疗讨论的关键医疗信息。结论scf故事提高了对LTx讨论的认识和准备。实践启示个人叙述可以增强对LTx讨论和PwCF决策的准备。

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

Patient Education and Counseling 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.60

自引率

11.40%

发文量

384

审稿时长

46 days

期刊介绍： Patient Education and Counseling is an interdisciplinary, international journal for patient education and health promotion researchers, managers and clinicians. The journal seeks to explore and elucidate the educational, counseling and communication models in health care. Its aim is to provide a forum for fundamental as well as applied research, and to promote the study of organizational issues involved with the delivery of patient education, counseling, health promotion services and training models in improving communication between providers and patients.