Understanding Patients’ and Living Donors’ Kidney Paired Donation Educational Experiences and Recommendations for Improvement

2021 ◽  
pp. 152692482110648
Author(s):  
Rachyl Pines ◽  
Yaquelin Arevalo Iraheta ◽  
Katia A. Dahmani ◽  
Matthew Cooper ◽  
Amy D. Waterman
Keyword(s):  
Decision Making ◽  
Educational Experiences ◽  
Living Donors ◽  
Mixed Methods Study ◽  
Informed Decision Making ◽  
Educational Content ◽  
Risks And Benefits ◽  
Kidney Recipients ◽  
Kidney Paired Donation ◽  
Semistructured Interviews

Introduction Educating potential kidney patients and living donors about the risks and benefits of kidney paired donation to ensure they make informed decisions is complex. This study aimed to increase understanding of patients’ and donors’ decision-making about donation, the educational content they received, and their recommendations for educational improvements. Method We conducted a mixed methods study, including semistructured interviews and quantitative surveys, with 43 participants (25 living donors; 18 kidney recipients). Findings Participants reported that the benefits of paired donation motivated them to participate (ie, helping multiple people, receiving a transplant sooner, flexible timing of donation). Although deciding to participate in paired donation was a systematic, logical, and carefully considered process for some. For most, it was a quickly made, often emotion-based decision. Paired donation educational content on different topics varied, with recipients reporting receiving less information than donors about donor protections and processes to ameliorate the challenges faced, such as broken swaps and chains, and delays in matching. Those who faced challenges requested more information about donor protections and support during and after paired donation. Although many acknowledged their transplant coordinators’ helpfulness, participants also recommended being more proactive in learning about kidney paired donation and speaking to former donors and recipients beforehand. Discussion Standardized, health literate educational content addressing the gaps and variability in education received may help increase paired donation informed decision-making.

scholarly journals Research-informed decision making about research capacity and activity within an English local authority: a mixed-methods study

The Lancet ◽  
2021 ◽  
Vol 398 ◽  
pp. S74
Author(s):  
Joanne Gray ◽  
Dilupa Samarakoon ◽  
Angela Bate ◽  
Ruth McGovern ◽  
Anna Christie ◽  
...  
Keyword(s):  
Decision Making ◽  
Mixed Methods ◽  
Local Authority ◽  
Research Capacity ◽  
Informed Decision ◽  
Mixed Methods Study ◽  
Informed Decision Making

scholarly journals Patient participation in multidisciplinary tumour conferences in breast cancer care (PINTU): a mixed-methods study protocol

BMJ Open ◽  
2019 ◽  
Vol 9 (4) ◽  
pp. e024621 ◽  
Author(s):  
Christian Heuser ◽  
Annika Diekmann ◽  
Nicole Ernstmann ◽  
Lena Ansmann
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Mixed Methods ◽  
Patient Participation ◽  
Rating Scale ◽  
Multidisciplinary Care ◽  
Video Data ◽  
Mixed Methods Study ◽  
Observational Assessment ◽  
Risks And Benefits

IntroductionA central instrument of multidisciplinary care is the multidisciplinary tumour conference (MTC). In MTCs, diagnosis and treatment of cancer patients are discussed, and therapy recommendations are worked out. As we found previously, patients participate in MTCs in some breast cancer centres in the state of North Rhine-Westphalia, Germany. However, studies on risks and benefits of patient participation have not provided substantiated findings. Therefore, the study’s objective is to analyse differences between MTCs with and without patient participation.Methods and analysisThis is an exploratory mixed-methods study. MTCs in six breast and gynaecological cancer centres in North Rhine-Westphalia, Germany, are examined. MTCs will be conducted with and without patient participation. First, interviews with providers concentrating on the feasibility of patient participation and quality of decision-making will be carried out, transcribed and analysed by means of content analysis. Second, videotaped or audiotaped participatory observations in MTCs will be executed. Video data or transcribed audio data from video and audio recordings will be coded using the established "Observational Assessment Rating Scale" for MTCs and analysed by comparing centres with and without patient participation. Third, all patients will fill out a questionnaire before and after MTC, including questions on psychosocial situation, decision-making and expectations before and experiences after MTC. The questionnaire data will be analysed by means of descriptive and multivariate statistics and pre-post-differences within and between groups.Ethics and disseminationConsultation and a positive vote from the ethics committee of the Medical Faculty of the University of Cologne have been obtained. For all collected data, relevant data protection regulations will be adhered to. All personal identifiers from patients and providers will be pseudonymised, except video recordings. Dissemination strategies include a discussion with patients and providers in workshops about topics such as feasibility, risks and benefits of patient participation in MTCs.Trial registration numberDRKS00012552.

scholarly journals Going Beyond Panaceas: The Diversity of Land Observatory Forms in Africa

Land ◽  
2020 ◽  
Vol 9 (3) ◽  
pp. 70 ◽  
Author(s):  
Quentin Grislain ◽  
Jeremy Bourgoin ◽  
Ward Anseeuw ◽  
Perrine Burnod ◽  
Eva Hershaw ◽  
...  
Keyword(s):  
Decision Making ◽  
Participant Observation ◽  
Video Conferencing ◽  
Analytical Framework ◽  
Informed Decision ◽  
Informed Decision Making ◽  
Information Production ◽  
Dynamic Data ◽  
Ex Post ◽  
Ex Ante

In recent decades, mechanisms for observation and information production have proliferated in an attempt to meet the growing needs of stakeholders to access dynamic data for the purposes of informed decision-making. In the land sector, a growing number of land observatories are producing data and ensuring its transparency. We hypothesize that these structures are being developed in response to the need for information and knowledge, a need that is being driven by the scale and diversity of land issues. Based on the results of a study conducted on land observatories in Africa, this paper presents existing and past land observatories on the continent and proposes to assess their diversity through an analysis of core dimensions identified in the literature. The analytical framework was implemented through i) an analysis of existing literature on land observatories, ii) detailed assessments of land observatories based on semi-open interviews conducted via video conferencing, iii) fieldwork and visits to several observatories, and iv) participant observation through direct engagement and work at land observatories. We emphasize that the analytical framework presented here can be used as a tool by land observatories to undertake ex-post self-evaluations that take the observatory’s trajectory into account, or in the case of proposed new land observatories, to undertake ex-ante analyses and design the pathway towards the intended observatory.

scholarly journals A referral aid for smoking cessation interventions in primary care: study protocol for a randomized controlled trial

2021 ◽  
Vol 22 ◽  
Author(s):  
Daniëlle N. Zijlstra ◽  
Jean W.M. Muris ◽  
Catherine Bolman ◽  
J. Mathis Elling ◽  
Vera E.R.A. Knapen ◽  
...  
Keyword(s):  
Primary Care ◽  
Decision Making ◽  
Smoking Cessation ◽  
Cost Effectiveness ◽  
Structural Equation ◽  
Controlled Trial ◽  
Linear Regression Analysis ◽  
Informed Decision ◽  
Equation Modeling ◽  
Informed Decision Making

Abstract Background: To expedite the use of evidence-based smoking cessation interventions (EBSCIs) in primary care and to thereby increase the number of successful quit attempts, a referral aid was developed. This aid aims to optimize the referral to and use of EBSCIs in primary care and to increase adherence to Dutch guidelines for smoking cessation. Methods: Practice nurses (PNs) will be randomly allocated to an experimental condition or control condition, and will then recruit smoking patients who show a willingness to quit smoking within six months. PNs allocated to the experimental condition will provide smoking cessation guidance in accordance with the referral aid. Patients from both conditions will receive questionnaires at baseline and after six months. Cessation effectiveness will be tested via multilevel logistic regression analyses. Multiple imputations as well as intention to treat analysis will be performed. Intervention appreciation and level of informed decision-making will be compared using analysis of (co)variance. Predictors for appreciation and informed decision-making will be assessed using multiple linear regression analysis and/or structural equation modeling. Finally, a cost-effectiveness study will be conducted. Discussion: This paper describes the study design for the development and evaluation of an information and decision tool to support PNs in their guidance of smoking patients and their referral to EBSCIs. The study aims to provide insight into the (cost) effectiveness of an intervention aimed at expediting the use of EBSCIs in primary care.

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