Patients' experiences of a newly developed internet-based support and education program while awaiting kidney transplantation: A qualitative study.

OBJECTIVE

Patients awaiting kidney transplantation experience substantial physical and psychosocial burden, while access to structured psychosocial support and education during the waiting period is limited. This study explored participants' experiences of a newly developed nine-week internet-based support and education program to inform further refinement.

METHODS

A qualitative descriptive study using inductive reflexive thematic analysis was conducted, embedded in a feasibility trial conducted in Sweden. Participants awaiting deceased-donor kidney transplantation were invited to semi-structured telephone interviews post-intervention; some were re-interviewed after transplantation. In total, 17 participants contributed 22 interviews. Data were analyzed iteratively following Braun and Clarke.

RESULTS

Three themes with nine subthemes were identified. First, knowledge and guidance as support in a time of uncertainty: participants described the program as providing structured, accessible information that enhanced understanding, preparedness, and a sense of control. Second, emotional and behavioural support during a major life transition: reflective and acceptance-based components supported emotional orientation, while behavioural strategies facilitated small, manageable changes, although engagement varied with physical and cognitive capacity and life circumstances. Third, relationship and timing influencing usability: personalized feedback functioned as a relational anchor supporting engagement, while fluctuating health status and transplantation events influenced engagement and timing. Participants reported a tension between meaningful but demanding content and limited capacity during vulnerable periods.

CONCLUSION

The program was experienced as relevant and supportive, addressing both educational and psychosocial needs during the transplantation trajectory. Engagement was dynamic and shaped by timing, health status, life circumstances, and relational support, highlighting the importance of adaptable design in this population. Practice implications Structured adaptability, including varying levels of engagement, continuous support, and mechanisms for re-entry after interruptions, may enhance feasibility and sustained engagement in digital support interventions for patients awaiting transplantation.