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

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.