Skoči do osrednje vsebine

Social aspects of the organ donation in Slovenia: Analysis of the stimulating and inhibitory factors for designing programs to achieve behavioural change

Code:

L5-7106

Period:

1.1.2016 - 31.12.2018

Range on year:

1.88 FTE | 2016

Project leader at FDV:

prof.dr. Tanja Kamin

Research activity:

Social sciences

The phases of the project and their realization:

The aim of the study is to provide evidence-base for developing future post-mortem organ donation promotion programs whom account for individual as well as structural factors that influence organ and tissue donation in Slovenia. The main research question is, what are the barriers to and incentives for behaviours related to organ and tissue donation, namely decision to register as an organ donor, family discussions about organ donation, and next-of-kin organ donation consent. Integrated research methodologies will be conducted in 7 interconnected stages organized in Work Packages each including some thematic subdivisions: (WP 1) research design, (WP 2) Qualitative research design and data collection, (WP 3) Quantitative research design and data collection, (WP 4) Data analysis, (WP 5) Development of recommendations and guidelines, (WP 6) Dissemination of results. In addition, WP 7 will be devoted to Overall project management. WP 1. Research design Description: In the initial stage of the study a research design will be developed. In order to build a coherent research design we will perform a detailed literature and research review and will assess our goals to progress beyond the state of the art. As this task will be completed we will start developing a research model. The proposed research will use a flexible research design integrating qualitative and quantitative methods, namely (1) quantitative survey on representative sample of Slovenian population, (2) two series of focus groups with specific segments of Slovenian population, (3) in-depth interviews with medical experts, health journalists and online health communities moderators, and (4) discourse analysis of news media texts on organ donation. The representative quantitative survey and focus groups are the core methods of the project. They aim to reveal factual knowledge about organ and tissue donation process and procedures, attitudes and beliefs, perceived structural and community barriers and needs, and social context of these factors, allowing more holistic understanding of organ and tissue donation and segmentation. Other methods will deepen understanding of sense making of organ donation in general population in Slovenia. The integration of methods will be achieved in the following sequence: 1. The first phase of the research will consist of qualitative data collection using focus groups. The purpose of this phase is to research the presence and the meaning of organ and tissue donation. The findings of the first phase will present starting points for the development of further measurement tools (the questionnaire). 2. A substantial and detailed representative survey among Slovene general population in their home will be conducted in the second phase. Also, a discourse analysis of news media texts on organ donation will be carried out in order to acquire the meaning making of organ donation in Slovene society according to the theory of social representation. 3. The third phase will consist of additional focus groups with selected communities (on the basis of the intermediate analysis and results) and in-depth interviews with medical experts, online communities moderators and health journalists in order to interpret and deepen results of the survey and critical discourse analysis. The integration of methods will be conducted in a flexible way. The results of the previous phase will be used to formulate the next phase and to interpret the results. Specific objectives: - To prepare detailed review of the relevant literature and research related to organ donation; - To develop a research model that will allow the integration of methods to best grasp the complexity of behaviours related to organ donation. Outputs and deliverables: - State of the art & progress beyond the state of the art; - Research design; - Instructions for the formulation of efficient measurement instruments. Timetable: Months: 1-4, total duration: 4 months Milestones: Theoretical and conceptual research framework (Month 4) WP 2. Qualitative research design and data collection In WP 2 data will be collected with three research methods: focus groups, in-depth interviews and selections of news media texts on organ donation. WP 2.1 Focus groups Description: Focus group outline will follow “research with people” approach whom places people in the center of the research, treats them as active participants, gives them voice about the relevance of the researched problem and enables them to utilize the results, according to the Transformative consumer research principles (Crockett et al., 2013). Discussing organ donation with people requires special considerations. Ideas about bodies and about death belong to the most private areas of lives. People seldom talk about it, and have difficulties with articulating it in a comprehensive and consistent way. This requires special preparation of the interviewer that needs to be able to recognize signs of uneasiness and is able to balance the conversation between not provoking a sensible person too much but not be too afraid of provocation as to avoid trivial material only (Sanner, 2007). We will conduct two series of focus groups with specific segments of Slovenian population: (A) focus groups in the initial phase of the study and (B) focus groups with specific segments after the quantitative survey. A) Exploratory focus groups in the initial state of the study - Five exploratory focus groups among adult population will be performed; 7-9 participants will attend each of the focus groups; discussion will take approximately 2 hours. - Recruitment questionnaire will be used for selecting focus group participants; it will consist of four criteria: general opinion toward organ donation (Likert measurement of statements), age, gender, and educational level. - Focus groups will be structured around a set of carefully predetermined questions (discussion guide that consists of subtopics relevant and important for the study). - In this phase, it is essential to study how people understand and experience organ donation in the way such as they feel and perceive it, expressed and interpreted through in-depth interaction between the researcher and the research participants. This enables participants to express their concerns, apathy, excitement and fears, in their own language (in order to familiarize the expressions people use when referring to organ donation as this knowledge will help us to develop the questioner for the quantitative survey), with their own concepts, which is particularly important since previous studies on the barriers to organ donation indicate that people have difficulties in articulating their reluctance to organ donation (Morgan and Miller, 2002). - The primary topic of the discussion will be the language of organ donation, their attitudes toward organ donation, factual knowledge about organ donation, experiences with organ donation, willingness to discuss organ donation, intent to sign an organ donor card and actual behaviour, concerns, fears, trusted health information sources etc. - Findings from the focus groups will lead us in designing the survey questionnaire. B) Explanatory focus groups with specific segments after the quantitative survey - In the survey guidelines, participants will be informed that they might be contacted for a follow-up focus groups. In this way it will be possible to select people with interesting response patterns or special sub-groups, e.g., individuals with high and low education, and religious groups, or people who had special experiences of transplantation issues, e.g., relatives of potential donors where a donation had been requested, transplant recipients, medical students, blood donors. - The number of focus groups will be decided on the basis of the intermediate analysis and results in order to deepen the understanding of particular issues and better interpret survey results. Specific objectives: - To collect data on language patterns, concepts and expressions that people use when contemplating about and discussing organ donation; this knowledge is necessary for developing clear and comprehensible questions for the quantitative survey; - To collect data on particularities related to organ donation phenomenon within selected population sample identified through quantitative data analysis. Outputs and deliverables: - Detailed methodological outline of the focus group; - Recruitment questionnaire; - Discussion guidelines for exploratory focus groups; - Discussion guidelines for explanatory focus groups; - Report on procedures and data quality. Timetable: Months: 5-7, 23-24; total duration: 7 months Milestones: - Recruitment of informants for exploratory focus groups (Month: 5) - Recruitment of informants for explanatory focus groups (Months: 23) - Transcripts of exploratory focus groups (Month: 7) - Transcripts of explanatory focus groups (Month: 24) Roles and responsibilities: Collaborators: 3 senior researchers (1 from partner organization), 1 post-doc, 1 Phd student WP 2.2 . In-depth interviews with medical experts, online communities moderators, and health journalists Description: All together nine interviews will be conducted, approximately three interviews per group. (A) In-depth interviews with medical experts We shall inquire into the ways in which Slovenian medical experts understand their active role in promotion of organ donation, since relationship between the deceased’s family and health care professionals is an important factor influencing next-of-kin consent (Kesserling et al., 2009). This knowledge will provide better understanding of the barriers and incentives related to giving consent to next-of-kin organ donation. (B) In-depth interviews with health journalists will provide us with better understanding of the production side of organ donation mediatisation. This information will shed additional light on results of critical discourse analysis of media texts on organ donation in Slovenia and provide the fundament for developing guidelines for journalists (C) In-depth interviews with online health communities moderators Searching for health-related information via Internet has in the last decade become one of the most frequent activities of Internet users (Fox and Duggan 2013). The interest of users to exchange health-related experiences, information and support, especially in the cases of chronicle illnesses, has also resulted in emergence of number of health-related online support communities (HROSC). One of the biggest HROSCs in Slovenia is Med.Over.Net, which was established in 2000 and thematically covers areas of health, medicine, social work, law and education. In the last 15 years, Med.Over.Net has become one of the most visited online communities (and websites) in Slovenia. The integral part of HROSC Med.Over.Net also presents the voluntary collaboration of 200 different expert moderators, coming from the fields of medicine, healthcare, social work, education and law (MON 2014). Med.Over.Net thus presents an important platform for communicating about organ donation. Moderators can have a good understanding of difficulties in communicating medical facts about organ donation to online community participators an have an extremely important part in managing the ways in which experiences, knowledge, attitudes about organ donation is constructed, discussed and shared. Specific objectives: - To obtain data on perceptions of organ donation phenomenon and of the role groups of experts, whom we identified as important stakeholders in organ donation promotion, perceive to have in improving organ donation literacy and in motivating people in pro-organ donation behaviours. Outputs and deliverables: - Detailed methodological outline of in-depth interviews; - Sample for in-depth interviews; - Discussion guidelines for in-depth interviews; - Report on procedures and data quality. Timetable: Months: 18-20; total duration: 3 months Milestone: Transcripts of in-depth interviews (Month: 20) 2.3. Discourse analysis Description: Social representation theory assumes that social and individual views of organ donation is a function of a combination of mass media framing of organ donation, individuals’ cognitions about organ donation, and interpersonal, everyday communication regarding organ donation (Morgan, 2009). It is thus important to understand, how media frame and influence public debate as well as publics’ modes of understanding organ and tissue donation (Morgan et. al., 2008). Public debates initiated by the media often tend to polarize the complex understanding of the phenomena and reduce it to ethical or humanitarian issues. That is why we believe a detailed analysis of media discourse is crucial to understand how the public perceives organ and tissue donation. In order to explore media discourse the method of Critical discourse analysis (Fairclough 1992, 2003) will be applied. Critical discourse analysis is in the past decades one of the most acknowledged schools within qualitative analysis of media discourses. It focuses on disclosing the relation between socio-cultural and media discourses and practices. Social knowledge, ideology and relations of power are reproduced and legitimized in media discourses (Fairclough 1992). The analysis will be conducted on mass media texts obtained through a press clipping. Specific objectives: - To collect media texts on organ donation that had ben published in the Slovene news media from 1998 onwards, the year when National transplantation network was established in Slovenia. Outputs and deliverables: - Selection of relevant media texts for the analysis. Timetable: Months: 13-14; total duration: 2 months Milestone: Sample of news media texts prepared for analysis (Month: 14) WP 3: Quantitative research design and data collection Description: To obtain a large-scale quantitative insights into the studied problem, we will conduct a representative survey of the general population in Slovenia between 18 and 75 years of age. The survey questionnaire will consist of (1) common demographic variables to define profiles of people, who are willing, reluctant or ambivalent to become potential donors in a way that will be comparable with the previous surveys like Eurobarometer and SJM; (2) more complex psychosocial variables that will allow us to test models of organ donation willingness (respondent’s attitudes toward organ donation, factual knowledge about organ donation, and level of self-reported altruism) previously studied in some foreign countries, but never in Slovenia; (3) variables that according to theory of social representation assess the influence of the media in making sense of organ donation, and have been rarely studied even internationally. The survey will be performed in collaboration with the Public Opinion and Mass Communication Research Centre at the Faculty of Social Sciences, who regularly conducts social surveys of the general population in Slovenia (including the Slovenian Public Opinion survey). Survey mode: We will conduct a face-to-face survey, potentially in combination with other modes (e.g. mixed-mode design with web and face-to-face survey). Time frame: The survey will be conducted between September and November 2016. Survey location: A face-to-face survey will be conducted at people's homes. However, a methodological evaluation of feasibility of other survey modes will be performed to decide about possible alternative and additional data collection approaches that could be used to reach specific segments of population and optimize data collection costs, including web and telephone surveys. Sampling: The target population will be Slovenian residents between 18 and 75 years of age. Sampling will be conducted on the basis of the Central Register of Population of Slovenia, which presents a comprehensive and highly accurate sampling frame of the general population in Slovenia. Two-stage stratified sample selection will be used. At the first stage, enumeration areas (PSU – primary sampling units) stratified by region and type of settlement will be selected with the probability proportional to their size. At the second stage, the fixed number of individuals will be randomly selected within each PSU. The overall probability of selection will be equal for each person from the target population. The minimum required sample size is estimated at 1000 persons, although additional analyses will be performed during the survey preparation and pilot testing to make the final decision regarding the sample size. Recruitment: All sampled persons will receive a mail pre-notification letter before the interviewer’s visit. For persons with known telephone number, additional telephone contacts will be made to arrange appointments. Questionnaire characteristics: The survey questionnaire will be operationalized within above-mentioned categories of variables and in accordance with exploratory focus groups findings; it will include approximately 70 questions on key issues. It will take from 30 to 60 minutes to complete the questionnaire. The questions will be closed and structured in a simple manner so that accurate comprehension will be ensured. Questionnaire will be first tested on a smaller sample, to ensure the quality and validity of the final questionnaire. Specific objectives: - To obtain representative data on behaviours and attitudes related to organ donation in Slovenia that will be used to test the hypotheses in the proposed research (WP 4) and available to other researchers; - to enable international comparisons. Outputs and deliverables: - Detailed methodological outline of the survey; - Report on the pilot study; - Final survey questionnaire; - Report on procedures and data quality; - Survey dataset and documentation; Timetable: Months: 5-8; total duration: 4 months. Milestones: - Final questionnaire (Month: 8) - Sample selected from the Central Register of Population (Months: 8) Roles and responsibilities: Collaborators: Project leader, 3 senior researchers (1 from partner organization), 3 post-doc, 1 Phd student WP 4: Data analysis Description: After the completion of field-work a systematic analysis of qualitative and quantitative data will take place. 4.1. Analysis of the survey data Analysis of the survey’s data will be conducted on multiple levels. The basic level will include frequency distributions, descriptive statistics, and basic comparisons of organ donation behaviours by different socio-demographic characteristics. At the second stage, multivariate models will be used to test the hypotheses about relations between the studied variables. Theoretical concepts included in the statistical models will be verified using factor analyses and reliability testing to assure their adequate measurement performance. Additional multivariate techniques, like cluster analysis, will also be used to identify and explore typical groups of respondents according to the studied characteristics. 4.2. Analysis of qualitative data (focus groups and in-depth interviews) An analysis of the results from the exploratory focus groups and in-depth interviews will be performed by starting with a detailed transcription of the interviews, followed by thematic analysis. 4.3. Critical discourse analysis of media texts The analysis will be performed on a sample of media texts obtained from the press clipping based on Fairclough (2003) methodology. 4.4. Integration of data Following the completion of qualitative and quantitative data analysis, the integration of data will be performed on the level of complementarity and triangulation. Specific objectives: Related to the data collected in exploratory focus group: - to observe how respondents emotionally react to particular topic; - to identify how willing are people (1) to think about organ donation; (2) to register for an organ donor; (3) to discuss organ donation with their closed ones and important others; (3) to give next-of-kin consent for posthumous organ donation; - to identify patterns of knowledge, motives, and concerns underlying willingness to donate organs, discuss organ donation with their closed ones and important others, give next-of-kin consent for posthumous organ donation; - to explore the multifaceted, inter-related, private and possible conflicting beliefs about organ donation; - to understand reasons why people are unwilling to donate their own organs or organs of their deceased family members; - to identify the type and scope of positive and negative emotions related to organ donation; - to identify perception of availability of pro-organ donation behaviour in Slovenia; - to understand the role of the media in making sense of organ donation in Slovenia; - to identify opportunities and risks of social media and online health communities for achieving desired organ donation behavior; - to identify trusted health information sources. Related to the data collected with the quantitative survey: - to compare the Slovenian results with international data; - to investigate how barriers to and incentives for behaviours related to organ donation are associated with the socio-demographic characteristics of Slovenian population; - to explain how selected psychosocial factors influence organ donation behavior; - to study causal relations and their strength between the studied factors; - to segment population in groups with regard to their position in relation to (1) desired organ donation behavior, (2) patterns of knowledge about organ donation, (2) attitudes and concerns in relation to organ donation, (3) mediating role of the media, and (4) benefits that would motivate people for desired organ donation behaviours. Related to the data collected by in-depth interviews: - to identify how groups of experts, whom we identified as important stakeholders in organ donation promotion, perceive and understand their role in improving organ donation literacy and in motivating people in pro-organ donation behaviours. Related to the data collected by news media clipping: - to frame the prevalent discourses on organ and tissue donation; - to detect, explore and explain implicit and ideological meanings organ and tissue donation have in media texts; - to explore the potential role media representations of organ and tissue donation might have on the audience and public debate. Related to the data collected in explanatory focus groups: - to deepen understanding of the data obtained with quantitative survey within selected segments of the population. Outputs and deliverables: - Report on thematic sets of explorative focus group analysis (Month 9) - Report on thematic sets of in-depth interviews analysis (Month 20) - Report on Critical discourse analysis report (Month 17) - Organ donation willingness model (report on the results of hypothesis testing using multivariate methods) (Month 23) - Classification of Slovenian population into segments related to organ donation (Month 24) - Report on thematic sets of explanatory focus group analysis (Month 26) - Amendments to interpretations of the survey results - Integrated analysis (triangulation) Timetable: Months: 8-9, 15-17, 18-20, 18-24, 25-26, 27-28; total duration: 18 months Milestone: - Integrated analysis report (Month 28) WP 5: Dissemination and exploitation of results Description: Intensive dissemination of the results will contribute to their recognition among relevant stakeholders in Slovenia, in Europe and in the wider world. It will enable international comparisons of the organ donation phenomenon in Slovenia to Europe and wider. International dissemination will be included in the existing and well-known system of organ donation network Eurotransplant. At the very beginning of the project an official website will be created with the purpose of informing the Slovenian public about the project. The website will be available in a Slovenian language version. The web page will be created at Slovenijatransplant and will offer access to basic information on the project (e.g. an overview, the methodology, the time schedule). After the on-the-field period, up-to-date results will also be available to support the transformative research concept (e.g. answers to questions that arose during the focus groups will be discussed and presented). Results of the project will be presented through a series of scientific activities including scientific articles and contributions to international conferences. A Project Advisory board will be established in order to provide the project’ team with continuous academic critique and with expert knowledge in fields relevant to the project. This will strengthen and guarantee research quality of the project. An invitation to participate within the project advisory board will be sent to representatives of institutions and individuals who are working in the field of organ donation or are interested in the organ donation research. Journalists and other interested parties will be able to acquire up-to-date press releases. Promotion of the project will be continuous, with information publications and press releases of the project and its results on selected websites, discussion groups, scientific and professional events and interested mass media. Specific objectives: - To achieve the maximum dissemination and exploitation of results of the project; - to publish theoretical and empirical results in international academic journals; - to gain additional sources in order to publish an edited volume; - to gain additional financial sources and organize a small international meeting of experts in the field; - to present results at external international and national scientific conferences/meetings/congresses/press conferences; - to organize a presentation of the results to the Ministry of health, National institute of public health and medical faculties; - to create and maintain the project's official website - to deliver a guideline booklet for Slovenijatransplant, journalists and for online health communities moderators; - to constitute project advisory board in order to provide the project’ team with continuous academic critique and with expert knowledge in fields relevant to the project. Outputs and deliverables: - A series of scientific activities including scientific articles and contributions to international conferences; - Creation and maintenance of the project's official website; - Invitations to selected representatives of institutions and individuals who are working in the field of organ donation to participate within the project advisory board; - Press releases; - Extensive reports in major Slovene media (article, interview) on organ donation in Slovenia; - Round table discussion and presentation of the project’s findings to the scientific community working on organ donation research field in Slovenia and Europe (through Eurotransplant network and network within EU project FOEDUS - Facilitating exchange of organs donated in EU member states); - Seminar and presentation of the project’s findings to expert public (e.g. health care workers; medical students; health journalists); - Constitution and meetings of the Project Advisory Board; - Presentation of a model for guiding strategic planning, development and implementation of organ and tissue donation in Slovenia to health care workers from other fields that could benefit from it (e.g. blood donation). Timetable: Months: 8-36 duration: 29 months Milestones: - Project's official website (month 3); - Constitution of the Project Advisory Board: (month 3); WP 6: Development of recommendations and guidelines Description: Dissemination and identification of the key recommendations will commence as early as during the analysis of survey data, intended for the research community as well as anyone dealing with organ and tissue donation (e.g. Slovenijatransplant, Eurotransplant, Med.Over.Net). Extensive research on a representative sample of the Slovenian population will enable a segmentation of the population according to the researched problem, and development of programs that will help in addressing barriers to a more effective and more efficient implementation of transplantation medicine in Slovenia. Our research will result in recommendations and guidelines for the development of programs for behaviour change in the field of organ and tissue donation, which will promote: • In ‘lay’ public: a greater support, less hesitation in talking about this topic among family members, active registration for the donor; • In expert public: a more successful communication about this topic with the patients, potential recipients of organs and tissues and donors; • Among journalists: communication about organ donation in accordance with the guidelines that promote in-depth, accurate and understandable communication; • Among online health communities’ moderators: communication about organ donation in accordance with the guidelines that promote in-depth, accurate and understandable communication. The data will also be useful for addressing some of the other issues, such as blood donation, donation of organs and tissues (e.g. bone marrow) of living donors. The procedural model that we will develop to solve the problem addressed in this project (from formative research to developing and testing programs for promoting behavioural change), will be easily transferable also to other health-related areas dealing with prevention and health promotion. Specific objectives: - To encourage development of evidence based tailored programs for promoting organ and tissue donation in Slovenia; - To build capacity for promotion of organ and tissue donation in Slovenia. Outputs and deliverables: - Recommended research tool which can be used to monitor organ donation patterns in Slovenia; - Recommendations and guidelines for promoting organ and tissue donation in specific groups of Slovene society; - Recommendations addressing media advocacy for organ donation; - A model for guiding strategic planning, development and implementation of organ and tissue donation in Slovenia; - Tool for evaluating effects of future policy and promotion initiatives initiated in order to meet important challenges on organ donation field. Timetable: Months 10-36, duration: 27 months Milestones: - Recommendations and guidelines for promoting organ and tissue donation in Slovenia (Month 35) WP 7: Overall project management Description: Administrative and scientific management of the project will ensure its successful realization through all phases of the project’s activities. Particularly, overall project management will assure that administration duties are met, that activities are monitored and assessed in order to guarantee high scientific quality level, and that the project coordinator/researcher is assisted during the implementation of her individual tasks. Management will assure that deadlines will be respected and that difficulties, problems and outputs will be properly handled. The work task of project management will be carried out by one senior researcher and 1 post-doc and 1 PhD student and will be supervised by the Project leader. The overall project management will be assisted by the Faculty administrative support. Project management team will be in charge of the coordination of research activities and will be focused on ensuring the effective conveying of research findings between the individual parts of the research. In addition, management will monitor the preparation of regular reports in accordance with co-financing “Basic, applied and postdoctoral research projects” contract. This will ensure execution of the project activities in accordance with the established objectives. Several meetings of the project group will be organized and communication with Slovenian public and private organizations will be established. The project management will last for the entire duration of the project (36 months) and will collaborate with the Advisory board composed by independent experts from the field. The role of Advisory board will be to monitor the project activities as well as to advice the management and the project leader on specific topics. The research group as a whole will collaborate intensively in order to implement the project activities. The research group is composed by researchers who all have previously dealt on topics of sociology of health and medicine but are also experts on methodology and have previously been involved in large research projects (6th and 7th EU Framework projects, large national projects). The research group is therefore composed by: 1 PhD student, 3 post-docs, 1 senior researcher expert in qualitative methodology, 1 senior researcher expert in quantitative methodology, 1 senior researcher expert in media and Critical discourse analysis, 1 senior researcher and 1 project leader, both experts in the field of the proposed topic. Specific objectives: - Activity assessment according to timetable and milestones; - Coordination of research group and research activities; - Problem solving; - Monitoring the quality of outputs and deliverables; - Monitoring the effective conveying of research findings between the individual parts of the research; - Monitoring budget activities; - Organizing meetings of research group; - Internal communication with the Advisory board; - Internal communication with the researched group. Outputs and deliverables: - Annual reports on the results of accomplished research work on the project; - Annual financial reports on resource expenditures; - Final report on results of the completed research project. Timetable: Months: 1-36, duration: 36 months Milestone: The final report »Social aspects of the organ donation in Slovenia: Analysis of the stimulating and inhibitory factors for designing programs to achieve behavioural change« (Month 36)

Research Organisation:

http://www.sicris.si/public/jqm/prj.aspx?lang=eng&opt=2&subopt=403&hits=1&id=10048&search_term=L5-7106

Researchers:

http://www.sicris.si/public/jqm/prj.aspx?lang=eng&opt=2&subopt=402&hits=1&id=10048&search_term=L5-7106

Citations for bibliographic records:

http://www.sicris.si/public/jqm/prj.aspx?lang=eng&opt=2&subopt=400&hits=1&id=10048&search_term=L5-7106

Abstract:

Transplantation as a form of medical treatment is making substantial progress, both in terms of patient survival after transplantation, but also in terms of new transplantation methods. The expansion of organ transplantation as an increasingly successful medical treatment results in greater unbalance between organs available for procurement and the number of people waiting for transplantation. Demand for viable organs has grown exponentially in the last decades and donation rates have not kept pace with the demand, leading to an increasing number of deaths, as for many chronic heart, lung and liver patients transplantation is still the only chance of survival. In Slovenia there are currently 245 patients waiting on transplantation list for donation that will both extend their life expectancy and significantly improve their quality of life; in 2013 alone 10 people died in Slovenia while awaiting transplantation, as their disease progressed beyond the point at which transplantation was possible. Transplantation treatment can reach its potential only when society openly accepts it and when the number of people who are willing to donate their organs after their death is consistent with the demand for transplantable organs. Although more than half of Slovenes agree with organ and tissue transplantation as a form of medical treatment and even indicate their intention to donate organs and tissue after their death or to give next-of-kin consent for the donation. Only 0.22 % of the Slovenian population has registered as a potential organ donor. In general attitudes towards organ donation are rather positive, yet behaviour does not appear to have followed such positive attitudes. Since there is no research touching upon the issue we do not have a proper understanding of this gap. Centrally designed organ donation campaigns are not likely to be effective and efficient and this fact is further demonstrating that there is no efficient promotion of post-mortem organ donation without understanding of pro-donation and anti-donation factors in particular society.   Therefore, this project aims to take the challenge to find ways to narrow the gap between organ demand and supply under the precondition that organ transplantation remains totally voluntary. The project aims at providing in-depth knowledge about factors that influence willingness to donate organs and understanding of the discrepancy between the expressed willingness, intention and actual behaviour related to organ and tissue donation. The main goal of the project is to explore, problematize and provide in-depth knowledge on social aspects of the organ donation in Slovenia. This will be achieved through a detailed analysis of the barriers to and incentives for postmortem organ and tissue donation followed by recommendations for programs designed to achieve behavioural change (more discussion about organ donation with family members and more donors) in the Slovenian population. The understanding of barriers and incentives will be obtained by quantitative representative survey conducted on the general population of Slovenia, qualitative in-depth interviews with medical experts, online communities moderators and health journalists and focus groups with general public and with specific segments/groups of segmented population as well as the analysis of mass media and social media discourses shaping the public opinion, peoples’ believes and information on organ and tissue donation.  In addition the project will focus on developing recommendations and guidelines for the development of programs for behaviour change in the field of organ and tissue donation, which will inform the efficient and effective promotion of organ and tissue donation in a way that acknowledges Slovenian cultural and social context of organ donation.

Documents:

1. Naslov sheme: Visual diagram of the specific phases and procedures of the research design


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