Opinions and Attitudes towards Organ and Tissue Donation 2012

-<br>Knowledge, information and attitudes about organ and tissue donation. Dealing with the topic of organ donation in the circle of family and friends. Experiences with organ and tissue donation.

Topics:
1. Satisfaction with one´s own state of health; personal health behaviour; trust in the German health system.

2. Knowledge of the legal regulations and medical knowledge issues relating to organ and tissue donation: determination of willingness to donate (through entry in a donation register, completion of an organ donation card, communication of the decision to relatives, communication to the general practitioner; regulation of organ and tissue donation in Germany by law or by the responsible transplant centres; restriction of organ and tissue removal; withdrawal of the decision to donate organs and tissue; age limit for organ and tissue removal; transfer of organs removed in Germany (to persons living in Germany, worldwide or through Eurotransplant to the countries belonging to the network); farewell to the deceased person after organ and tissue removal; criteria for possible organ and tissue removal (presence of cardiac death, brain death or coma); definition of brain death; available quantity of organs and tissue in Germany; waiting time for a donor kidney in Germany; likelihood of remaining alive 5 years after a kidney transplantation; organ and tissue trade in Germany; organ donation from living persons (living donor transplantation); organ donation to specific persons; regulation on organ and tissue removal in Germany (donor consent, consent of relatives in the absence of personal decision, automatic organ and tissue donor in the absence of objection, no regulation); possibility of normal life for brain-dead persons.

3. Awareness of organ and tissue donation; sources of information on organ donation in the last six months (magazines, newspapers, newspaper advertisements, TV shows, TV commercials, radio, posters, brochures, doctor, pharmacy, lectures or courses, internet, friends, acquaintances or family members) self-assessment of awareness of organ donation; awareness of contact persons on organ and tissue donation (Federal Centre for Health Education (BZgA), German Foundation for Organ Transplantation (DSO), transplant centre, self-help organisations, doctor, pharmacies, German Red Cross (´DRK´), DKMS, Eurotransplant, hospital, health insurance companies, media, other, none known); awareness of slogans on organ and tissue donation (Organspende schenkt Leben, Fürs Leben, Organpate werden, Richtig, Wichtig, Lebenswichtig, Geboren am..., wiedergeboren am..., Organspende rettet Leben, Other, no slogan known) and sources of information (in magazines, newspapers, on TV, etc.).

4. Attitude towards organ and tissue donation and own willingness to donate: rather approval or disapproval of organ and tissue donation according to previous information; assessment of willingness to donate organs in Germany; generally rather positive or rather negative opinion on organ and tissue donation; own willingness to donate organs after death; willingness to accept a donated organ oneself; awareness of the organ donor card (´Organspendeausweis´); organ donor card seen; possession of an organ donor card; knowledge of the content of the organ donor card (consent to organ removal without exception, exclusion of certain organs from donation, removal of certain organs only, general objection to removal of organs or tissue, specific person to decide on removal of organs); personal statement of intention on the organ donor card (consent to organ removal, objection or designation of person to make decision); consent to removal of organs and tissues without restriction, except for specific organs and tissues, for specific organs and tissues only; organs and tissues excluded from donation (eyes (cornea and retina), blood, breast, brain, face, tissue, skin, heart, liver, lung, nose, kidney, ears, spinal cord, other); intention to obtain and complete an organ donor card; confidence in this intention in relation to the next 12 months; organ donor card obtained in the last 12 months or earlier; awareness of sources for organ donor cards (Federal Centre for Health Education, health insurance company, pharmacy review campaign (´Apothekenumschau´), pharmacist, doctor, hospital, self-help associations, German Foundation for Organ Transplantation (DSO), information stand, newspaper/magazine) and own source of supply; personal motivation for having an organ donor card (helping others, affected persons in circle of friends who could be helped by organ donation, relevance of organ donation known from professional environment, glad to receive an organ in case of illness, relatives should not be burdened with decision, religious motives, do not care, what happens to one´s own body after death, expectation of the family, gives meaning to death, perception of rights due to being informed, pride, too old or ill, fear of abuse, taken for granted, only for family, positive experiences, other); personal reasons against organ donation (not dealing with the issue of death, fear of insufficient medical care if organ donor card is presented, no time, ignorance of sources of supply, too sick or old, religious motives, do not want to receive an organ themselves, do not want to donate an organ or tissue, no decision possible at present, fear of abuse through organ trade, disfigured body due to organ and tissue donation, fear of organ removal before death, disturbed peace of the dead, feeling pressured by discussions, fear of being forever fixed by decision, brain death not the death of the person, scandals and abuse, none of the above, other); preferred discussion partners on the topic of organ and tissue donation (spouse, partner, family member, friends, doctor, pharmacist, clergy, experts in a counselling centre, information telephone organ donation).

5. Dealing with the topic of organ donation in the circle of family and friends: conversations with family and friends about the topic of organ and tissue donation; family and friends informed about their own decision pro or contra organ donation; family members or friends who have filled out an organ donor card; family members or friends informed about their decision for or against organ and tissue donation; assessment of the willingness to donate in the personal environment.

6. Dealing with death (personal, talking to family or friends, testament, expecting doctors to be approached about organ and tissue donation after brain death of a relative); living will: Possession of an living will; statement on organ and tissue donation in living will.

7. Experiences with organ and tissue donation: personally affected or through cases in the social environment (organ donor or organ recipient in the family or in the circle of friends or person waiting for an organ or tissue, interviewee has himself received an organ or tissue or is waiting for an organ or tissue, nothing applies) successful transplantation; change of opinion on organ and tissue donation; reasons for this change of opinion (previous information incomplete or incorrect, conversations with friends or family members, personal contact with affected persons (organ recipients), age, education or profession, current scandal (“Göttinger Skandal”), media, illness, loss of relatives, friends, acquaintances, own children; just changed mind, contradicts ideas about dying, other); change of mind towards consent to organ and tissue removal, rejection or specification of which organs and tissues may be removed; interest in information on the subject of organ and tissue donation; preferred type of information (objective information, reports on experiences of persons concerned, combination of objective information and reports on experiences); expectation of doctors to be approached about organ and tissue donation after the brain death of a relative; evaluation of the objection regulation and the consent regulation with regard to organ and tissue donation; preference for objection regulation or consent regulation.

Demography: age; sex; highest school or university degree; employment; marital status; living with a partner; household size; number of children in the household under 18 years; religious denomination.

Additionally coded were: Respondent ID; weight; interview duration; knowledge and information score.