Patient education and counseling · 2025
Personal narratives to support learning about lung transplant for people with cystic fibrosis.
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Young Dave, Bartlett Lauren E, Reid Nick, Hartzler Andrea L, Bradford Miranda C, Goss Christopher H, Pilewski Joseph M, Dunitz Jordan M, Saavedra Milene, Berry Donna L, Kapnadak Siddhartha G, Hobler Mara R, Ramos Kathleen J
Аннотация
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.
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.