Session Time: 6:00pm-7:00pm
Presentation Time: 6:00pm-7:00pm
Location: Hall C & D
*Purpose: Research suggests that including social support networks in the kidney transplant education process improves evaluation completions and increases living donor rates, but the optimal approach to engaging them in the clinical process remains unknown.
*Methods: We conducted a focus group with 7 members of kidney transplant candidates’ support networks at a center in Minneapolis. Inductive and deductive analysis of the focus group was performed.
*Results: All participants were either spouses (4, or 57.1%) or siblings (3, or 42.9%) of a candidate currently listed for kidney transplant. 5 (71.4%) were female and 6 (85.7%) White, with one (14.3%) African American. All participants had at least some college education and 6 (85.7%) were currently employed. All but one (85.7%) of the listed candidates were already on dialysis. 4 (57.1%) of the participants reported getting most of their information from the candidate, while 1 (14.3%) did their own research and 2 (28.6%) got information from the center. Most (5, or 71.4%) went to the initial transplant evaluation with the candidate. Participants described barriers, facilitators, and needs of family and friends to effectively engage in the care of transplant candidates. Themes included feeling isolated and disconnected, helpless when trying to provide support, and a desire to do more to support the candidate but not knowing how or what questions to ask. Participants noted that candidates don’t always recognize the effect of kidney disease on the family and are reluctant to ask for help. Representative quotes from the focus group are provided in Figure 1.
*Conclusions: Kidney transplant candidates’ social support networks report barriers to participating in the care of patients. Additional focus groups will be conducted at other institutions to determine whether different themes arise. These data can be used to develop a conceptual model for clinically feasible approaches to empower friends and family to improve patient outcomes.
To cite this abstract in AMA style:Hart A, Bruin M, Partin M, Matas A, Israni A. Engaging Friends and Family in the Care of the Kidney Transplant Candidate: Identifying Needs and Barriers [abstract]. Am J Transplant. 2019; 19 (suppl 3). https://atcmeetingabstracts.com/abstract/engaging-friends-and-family-in-the-care-of-the-kidney-transplant-candidate-identifying-needs-and-barriers/. Accessed April 15, 2021.
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