Journey to Transplant: Developing a social support network counselling intervention to improve kidney transplantation

Abstract

Context Kidney transplant is superior to dialysis for the treatment of end‐stage kidney disease, but accessing transplant requires high patient engagement to overcome barriers. We sought to develop an educational counselling intervention for patients along with their social support networks to help patients access the waiting list. Methods Utilizing an Intervention Mapping approach, we established a conceptual framework to develop a behavioural intervention that can be reproduced across kidney transplant centres. The approach includes needs assessment, identifying behavioural determinants and process objectives and integrating targeted behavioural change theory. Results The Intervention Mapping process resulted in the development of a group counselling session, titled Journey to Transplant (JtT). This intervention was designed for kidney transplant candidates along with members of their social support networks and guided by a transplant healthcare professional. The session begins with standardized educational information to improve knowledge and normalize emotional barriers to transplant. This education is followed by a tailored counselling intervention, including the presentation of the individual patient's calculated likely outcomes on the kidney transplant waiting list. Finally, JtT incorporates patient and support network goal setting to address the specific barriers for that patient in accessing kidney transplantation. Conclusion A systematic Intervention Mapping approach to develop the JtT intervention helps ensure the intervention is efficacious, acceptable and feasible for transplant centres to implement. JtT engages the patient's social support network, targeting known barriers to transplant and utilizing established behaviour change theory to motivate concrete actions to improve the likelihood of kidney transplantation. Patient or Public Contribution This study includes a patient and family advisory committee comprised of kidney transplant candidates and their family members to guide the final language and content of the intervention guide, and the conduct of the implementation and pilot testing of the intervention. However, patients and family members were not involved in the intervention mapping development process itself described in this manuscript, which was informed by focus group data from patient and family study participants.

Multimodal approaches for inequality in kidney care: turning social determinants of health into opportunities

“…Waterman et al [22] developed the Knowledge Assessment of Renal Transplantation (KART) 2.0, which integrated scales for CKD and kidney transplantation knowledge, demonstrating good validity and reliability. Using behaviour change theory within patients’ social support network has been proposed as a key approach to transplant-directed self-management for members of diverse communities [23]. For those who require education around topics such as living kidney donation, Keller et al [24] found that informational content that showed diversity and representation visually (via educational animations) was valuable to recipients.…”