Home-based Education Increases Knowledge, Communication and Living Donor Kidney Transplantations

Abstract

A focus group approach was used to disclose transplant candidates’ view on patient-tailored interventions that could target modifiable hurdles to LDKT. A majority would appreciate an home-based educational intervention (chapter 2). Solving knowledge insufficiencies regarding the various renal replacement therapies would be one of the main goals. Additionally, patients would welcome a discussion on living donation with members of their social network. Such interventions would also be potentially effective in addressing other psychosocial hurdles to LDKT within patients’ social network. Patients report that a non-persuasive approach is appreciated since health care professionals will intrude families’ comfort zone (chapter 2). Yet, if the discussion on LDKT is not initiated by those present during the home-intervention, the educator should address the issue in a non-persuasive manner. The way in which the subject of living donation is addressed warrants cultural sensitivity. For instance, cultures in which modesty is a strongly valued tradition an indirect communication style is more appropriate (chapter 3). An indirect communication style would for example be: “Which aspects of the education on renal replacement therapies have drawn your attention specifically?” A more direct style would be: “Has someone in this room ever considered to be a living kidney donor?” Educators should try to tailor the education and the communication style on a case-by-case basis. Therefore, acquiring knowledge on the family values and norms is needed in order to receive optimal family engagement. In addition to a tailored and non-persuasive home-based educational intervention, patients and members of the social network who do not speak the language of the educator would value an independent interpreter. Besides these subtle (communication style) and obvious (use of an interpreter) differences, no further qualitative or quantitative evidence was found for cultural differences in factors hampering the access to LDKT. Neither did patients report on other conditions that need attention before implementing an home-based education. This thesis and other literature show that knowledge is repeatedly found as one of the important factors for promoting the access to LDKT. Yet, prior to the manuscript in chapter 6 no validated and standardized tests on knowledge among renal patients regarding kidney disease and all treatment options existed. Therefore, part of this thesis was devoted to the development and testing of the psychometric properties of a questionnaire that assesses patients’ knowledge on kidney disease and renal replacement therapies. That effort resulted in a 21-item list with two stable dimensions containing items on ‘Dialysis and Transplantation’ (11 items) and ‘Living Donation’ (10 items). Such a thorough questionnaire enables reliable testing of patient’s knowledge on kidney disease and treatment options. Therefore, this questionnaire was used to test potential changes in knowledge due to the home-based intervention. Chapter 7 present the development and protocol of the tested home-based intervention. Patients and their family/friends who received the home-based intervention had two home visits in addition to the regular hospital information. The first home with only the patient was intended to get an idea of patient’s family and culture. The patient could then invite family and friends for the second home visit (the educational intervention). The aim of the educational intervention was to provide information on kidney disease, dialysis, kidney transplantation and living donation. Central to the intervention was promoting the communication on the different treatment options between the patient and members from his/her social network. For this communication techniques from multisystem therapy were used. This therapy systematically considers the stability of relations and ensures that the conversation takes place within a framework of respect for individual feelings and autonomy. For this the quality system of multisystemic therapy was applied which involves structural supervision and anonymous/independent quality checks. Results of this home-based educational intervention show favorable effects (chapter 8). The patient and family/friends show a significant improvement in their knowledge and an improvement in their communication regarding the various treatment options. Moreover, analyses showed that the home-based intervention results in a fivefold increase in the number of potential donors tissue typed and actual living donations. Given the success and the limited side-effects of this approach implementation in other transplant centers is strongly recommended for transplant candidates without a living donor. Further research on the generalizability of the intervention and the cost-effectiveness is warranted.