Interviews With Lay Caregivers About Their Experiences Supporting Patients Throughout Kidney Transplantation.

Introduction: Lay caregivers provide essential support to patients throughout the kidney transplant process, pretransplant through discharge. Sparse data exists about kidney transplant caregiver experience and facilitators of caregiver engagement. The aim of this study was to explore and describe lay caregivers' accounts of supporting a patient before and early after kidney transplantation. Methods: Caregivers of recent kidney transplant recipients were individually interviewed about their experiences, coping strategies, and perspectives of center-specific support approaches for patients and caregivers in a single transplant center. Results: Inductive content analysis of transcribed interviews with 23 caregivers revealed 6 domain areas: visit preparation, initial evaluation, caregiver role discussion, exposure to support resources, transplant preparedness, and coping styles. Caregivers used and appreciated information offered by the transplant center, including materials directed to the patient. They recommended repeating information, online access, and adding video to complement print resources. They valued and requested information directed to them, both within passive materials and communication with providers. Social network interactions were helpful for practical, emotional, and informational support. Support group reminders and connection pathways to peers were suggested for both patients and caregivers. Conclusion: Findings highlight steps that can be taken by transplant centers and may stimulate caregiver engagement. Featuring caregiver-focused information and communication more prominently may support caregivers to improve patient progress in navigating kidney transplantation.

Using Community-Based Participatory Research to Create Animated Videos to Attenuate Disparities in Access to Kidney Transplant Information.

Introduction: Community-based participatory research and animated video offer promising approaches to attenuate disparities in access to kidney transplant information. Project Aims: We refined an evidence-based animated video curriculum (Kidney Transplant and Donation Information Made Easy) designed for diverse individuals, that is currently being trialed to advance kidney transplant access among referred patients at a single transplant center, to further accommodate information needs in earlier stages of the path to transplant (pre-referral) and to enhance fit for Black and Hispanic people. Design: We describe formation of an academic-community partnership and the application of qualitative research methods and partnership discussions to refine the Kidney Transplant and Donation Information Made Easy videos. A simple content analysis was undertaken of intervention refinement transcriptions, minutes, and meeting notes. Results: We formed a community steering committee and advisory board of local members predominantly of minoritized race or ethnicity. Full engagement with community members is evident in the program's adaptation process. Essential refinement elements were adaptation of 17 original videos and iterative development of 8 new videos with the community, conducting parallel cognitive interviews of an expanded sample of stakeholders, maintaining the theoretical grounding of Elaboration Theory, communication/multimedia learning best practices, and self-efficacy framework, and doing Spanish-language translation. Conclusions: Applying community-based participatory research principles and qualitative methods, we produced a culturally grounded adaptation of the Kidney Transplant and Donation Information Made Easy videos that provides information about kidney transplantation from primary care to transplantation. This approach is likely to strengthen our community partnership and eventual community acceptance of the intervention during the implementation phase. Challenges were achieving consensus and adding Spanish-language translation.