Online peer support and shared care experiences: A netnographic study of parents of children with cystic fibrosis.

AIM: To explore how parents of children with cystic fibrosis express their experiences, perceptions, and support needs through online platforms.

METHOD: The research was conducted between June 1st, 2024, and May 20th, 2025, using netnography, a qualitative methods, with parents who shared their experiences on online platforms. In classifying the data obtained from online platforms, different expressions on the same subject were divided into subthemes and attempted to be presented at a common point. The qualitative data analysis program MAXQDA Analytic Pro 12 (release 12.3.1) was used to create these subclassification systems.

RESULTS

The analysis conducted in the study revealed four distinct themes: Parents' thoughts on cystic fibrosis, parents' thoughts on treatment, parents' thoughts on the care process, and parents' thoughts on the support process.

CONCLUSION

The findings highlight that parents actively use online platforms for information sharing, emotional support, and experience exchange. These insights may guide pediatric nurses in developing family-centered interventions, addressing misinformation, and supporting parents' coping and care management processes.

RELEVANCE TO CLINICAL PRACTICE: This study demonstrates that understanding parents' online peer support experiences can help pediatric nurses provide more targeted, family-centered education, address misinformation, and support coping processes in the long-term care of children with cystic fibrosis.