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Public preferences for the allocation of donor organs for transplantation: Focus group discussions.

ABSTRACT: BACKGROUND:Deceased donor organs are scarce resources because of a large supply-and-demand mismatch. This scarcity leads to an ethical dilemma, forcing priority-setting of how these organs should be allocated and whom to leave behind. OBJECTIVE:To explore public preferences for the allocation of donor organs in regard to ethical aspects of distributive justice. METHODS:Focus groups were facilitated between November and December 2018 at Hannover Medical School. Participants were recruited locally. Transcripts were assessed with content analysis using the deductive framework method. All identified and discussed criteria were grouped according to the principles of distributive justice and reported following the COREQ statement. RESULTS:Six focus groups with 31 participants were conducted. Overall, no group made a final decision of how to allocate donor organ; however, we observed that not only a single criterion/principle but rather a combination of criteria/principles is relevant. Therefore, the public wants to allocate organs to save as many lives as possible by both maximizing success for and also giving priority to urgent patients considering the best compatibility. Age, waiting time, reciprocity and healthy lifestyles should be used as additional criteria, while sex, financial status and family responsibility should not, based on aspects of equality. CONCLUSIONS:All participants recognized the dilemma that prioritizing one patient might cause another one to die. They discussed mainly the unclear trade-offs between effectiveness/benefit and medical urgency and did not establish an agreement about their importance. The results suggest a need of preference studies to elucidate public preferences in organ allocation.

SUBMITTER: Oedingen C

PROVIDER: S-EPMC7321724 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

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Public preferences for the allocation of donor organs for transplantation: Focus group discussions.

Oedingen Carina C Bartling Tim T Dierks Marie-Luise ML Mühlbacher Axel C AC Schrem Harald H Krauth Christian C

Health expectations : an international journal of public participation in health care and health policy 20200318 3

<h4>Background</h4>Deceased donor organs are scarce resources because of a large supply-and-demand mismatch. This scarcity leads to an ethical dilemma, forcing priority-setting of how these organs should be allocated and whom to leave behind.<h4>Objective</h4>To explore public preferences for the allocation of donor organs in regard to ethical aspects of distributive justice.<h4>Methods</h4>Focus groups were facilitated between November and December 2018 at Hannover Medical School. Participants ...[more]

PMID: 32189453

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Project description:INTRODUCTION:Organ transplantation is the treatment of choice for patients with severe organ failure. Nevertheless, donor organs are a scarce resource resulting in a large mismatch between supply and demand. Therefore, priority-setting leads to the dilemma of how these scarce organs should be allocated and who should be considered eligible to receive a suitable organ. In order to improve the supply-demand mismatch in transplantation medicine, this study explores preferences of different stakeholders (general public, medical professionals and patients) for the allocation of donor organs for transplantation in Germany. The aims are (1) to determine criteria and preferences, which are relevant for the allocation of scarce donor organs and (2) to compare the results between the three target groups to derive strategies for health policy. METHODS AND ANALYSIS:We outline the study protocol for discrete choice experiments, where respondents are presented with different choices including attributes with varied attribute levels. They were asked to choose between these choice sets. First, systematic reviews will be conducted to identify the state of art. Subsequently, focus group discussions with the public and patients as well as expert interviews with medical professionals will follow to establish the attributes that are going to be included in the experiments and to verify the results of the systematic reviews. Using this qualitative exploratory work, discrete choice studies will be designed to quantitatively assess preferences. We will use a D-efficient fractional factorial design to survey a total sample of 600 respondents according to the public, medical professionals and patients each. Multinomial conditional logit model and latent class model will be analysed to estimate the final results. ETHICS AND DISSEMINATION:This study has received Ethics Approval from the Hannover Medical School Human Ethics Committee (Vote number: 7921_BO_K_2018). Findings will be disseminated through conference presentations, workshops with stakeholders and peer-reviewed journal articles.

Project description:BACKGROUND:The quality of data obtained through Focus Group Discussions (FGDs) is highly dependent on appropriate design and facilitation. In low-income settings steep power gradients between researcher and participants, as well as conversational norms, could reduce the ability of participants to voice personal opinions. Activity-oriented exercises have been suggested as a way overcoming these challenges, however little evidence exists - to date - on their use in low-income settings. We selected six exercises for use in Ethiopia and Nigeria and report our experiences. METHODS:The six exercises (picture sorting, associative pictures, picture ranking, decision trees, predictive story-telling and provocative statements) were used in 32 maternal and new-born care themed FGDs conducted in Amhara and Southern Nations Nationalities and People's Regions (Ethiopia) and Gombe State (Nigeria). Six facilitators and two supervisors who used these exercises were interviewed about their experiences. FGD verbatim transcripts and interview notes were analysed to explore methodological effectiveness and respondents' experience. All data were coded in NVIVO using a deductive coding frame. RESULTS:Facilitators and participants described the methods as 'fun' and 'enjoyable'. The exercises yielded more in-depth and complete information than 'normal' FGDs, but facilitator's probing skills and overall FGD group dynamics proved crucial in this success. Explaining and conducting the exercises increased FGD length. Data richness, participant reaction and understanding, and ease of facilitation varied by study site, exercise, and participant group. Overall, the exercises worked better in Nigeria than in Ethiopia. The provocative statement exercise was most difficult for participants to understand, the decision-tree most difficult to facilitate and the picture exercises most enjoyable. The story telling exercise took relatively little time, was well understood, yielded rich data and reduced social desirability bias. DISCUSSION:The majority of the exercises proved successful tools in yielding richer and less biased information from FGDs and were experienced as fun and engaging. Tailoring of the exercises, as well as thorough training and selection of the facilitators, were pivotal in this success. The difference in the two countries shows that adequate piloting and adaptation is crucial, and that some exercises may not be adaptable to all settings.

Project description:Media guidelines on safe suicide-related reporting are within the suicide prevention armamentarium. However, implementation issues beleaguer real-world practice. This study evaluated the perspectives of the Malaysian media community, persons with lived experience of suicidal behavior (PLE), and mental health professionals (MHP) on suicide-related reporting in terms of the impact, strategies, challenges, and the implementation of guidelines on safe reporting. Three focus group discussions of purposively sampled Malaysian media practitioners (n = 8), PLE (n = 6), and MHP (n = 7) were audio-recorded, transcribed, coded and thematically analyzed. Inclusion criteria were: English fluency, no clinical depression or suicidal ideation (current), no recent previous suicide attempts or suicide bereavement. Three major themes emerged: (1) Unsafe Reporting; (2) Impact; and (3) Safe Reporting. Most described current reporting as unsafe by being potentially triggering to media users and may contribute to contagion effect. Positive impacts identified included raised awareness toward suicide and its prevention. Unsafe reporting was attributed to inadequate awareness, knowledge, and guidance, lack of empathy and accountability, job-related factors, popularity-seeking, lack of monitoring and governance, and information source(s) with unsafe content. Majority agreed on how suicide stories should be framed to produce a safe report. The media community diverged on how detailed a suicide story should be. Safe reporting challenges included difficulties in balancing beneficial versus harmful details, social media ubiquity and its citizen reporters. Participants suggested these safe reporting strategies: stakeholder engagement, educational approaches, improving governance and surveillance, and guidelines revision. Most acknowledged the relevance of guidelines but were unaware of the existence of local guidelines. Implementation challenges included the dilemma in balancing media industry needs vis-à-vis safe reporting requirements, stakeholder engagement difficulties and social media regulation. There is poor awareness regarding safe suicide-related reporting across all groups. PLE and MHP were negatively impacted by current unsafe messaging which aggravated trauma and grief reactions. Postvention support gaps for mental health professionals were highlighted. Safe reporting promotion strategies should include stakeholder engagement to increase awareness on minimizing Werther and maximizing Papageno effects. Strategic re-examination and dissemination of local media guidelines to address new media issues, and effective surveillance mechanisms, are crucial in sustainable improvement of safe reporting practices.

Dataset Information

Public preferences for the allocation of donor organs for transplantation: Focus group discussions.

Publications

Public preferences for the allocation of donor organs for transplantation: Focus group discussions.

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