Opinions and Attitudes towards Organ and Tissue Donation 2014

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. Trust in the health care system in Germany.

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; personal definition of brain death as final death of a human being or not equivalent to death of a human being; available amount of organs and tissue in Germany; waiting period for a donor kidney in Germany; likelihood of being alive 5 years after a kidney transplantation; organ and tissue handling in Germany; organ donation from living persons (living donation); organ donation to certain persons; regulation on organ and tissue removal in Germany (consent of donor, 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, posters, internet, cinema, television, radio and brochures/flyers) and frequency of reception; number of brochures or flyers seen; websites visited on organ donation (www.organspende-info.de, www.organpaten.de, www.dso.de); 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 the topic of organ and tissue donation (Organspende schenkt Leben, Fürs Leben, Organpaten werden, Richtig, Wichtig, Lebenswichtig, Das trägt man heute: den Organspendeausweis, Ich entscheide, Geboren am..., wiedergeboren am..., Organspende rettet Leben, other, no slogan known); sources of information for the slogans Organpaten werden, Fürs Leben, Organspende schenkt Leben, Das trägt man heute: den Organspendeausweis (in newspapers or magazines, on TV, on the radio, on posters, in brochures, at the doctor´s, at the pharmacy, in lectures or at events, on the internet, through friends, acquaintances or family members).

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; possession of an organ donor card (´Organspendeausweis´); personal reasons against an organ donor card (not much dealt with the topic, convenience, no time, no reason, ignorance about sources of supply, no card received, advance directive available, card not yet filled out, card lost, too sick or old, for religious, spiritual or ethical reasons, general rejection, no dealing with the topic of death, undecided, family knows decision, family should decide, fear of insufficient medical care when presenting an organ donor card, Fear of organ removal before death, fear of being cannibalized), fear of being helped to die, general fears, current scandals, fear of abuse through organ trafficking, feeling pressured by discussions, fear of being forever fixed by decision, brain death not the death of the person, disturbed peace of the dead, other); knowledge of the contents of the organ donor card (consent to removal of organs without exception, exclusion of certain organs from donation, removal of certain organs only, general objection to removal of organs or tissue, certain person to decide on removal of organs); personal expression of will on the organ donor card (consent to removal of organs, objection or naming of person to make decision); consent to removal of organs and tissue without restriction, with the exception of certain organs and tissue, for certain organs and tissue only; Organs and tissues excluded from donation (eyes (cornea and retina), blood, breast, brain, face, tissue, skin, heart, liver, lungs, nose, kidney, ears, spinal cord, other); intention to obtain and complete an organ donor card; certainty of this intention in relation to the next 12 months; source of supply for the organ donor card (Federal Centre for Health Education, health insurance fund or health insurance company, pharmacy survey campaign, pharmacist, doctor, hospital, self-help associations, German Foundation for Organ Transplantation (DSO), information stand, newspaper/magazine, other); have received a letter from the health insurance company or health insurance company on organ donation in the last few months; have completed the attached organ donor card; personal motivation for organ donation (helping others (altruism), affected persons in circle of friends who could be helped by organ donation, relevance of organ donation known from occupational environment, happy 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 family, gives meaning to death, perception of rights due to being informed, pride, willing but too old or sick, fear of abuse, self-evident, only for family, positive experiences, other); personal reasons against organ donation (not dealing with the issue of death, fear of inadequate medical care if organ donor card is presented, no time, unaware of sources of supply, too ill or old, for religious reasons, do not want to donate organs themselves, do not want to donate organs, No decision possible at present, fear of misuse by organ traffickers, disfigurement of the body, fear of organ removal before death, disturbed peace of mind, feel pressured by discussions, fear of being forever bound by decision, brain death is not the death of the person; recipient may not deserve donation, no fair distribution, scandals and abuse, none of the above, other); preferred discussion partners on the topic of organ and tissue donation (spouse, partner, family member, friend, doctor, pharmacist, clergy, expert in a counselling centre, organ donation information line, other, would not like to talk to anyone about it); potential contacts on the topic of organ and tissue donation (spouse, partner, family member, friend, doctor, pharmacist, clergyman, expert at a counselling centre, organ donation hotline, health insurance company employee, affected person, Federal Centre for Health Education (BZgA), German Red Cross (DRK), German Organ Donation Foundation (DSO), Internet, hospital, health insurance company, teacher, lecturer, self-help group, transplant centre, other, does not want to talk to anyone about it).

5. Dealing with the topic of organ donation in the circle of family and friends: discussions with family and friends about the topic of organ and tissue donation; family and friends informed about own decision pro or contra organ donation; family members or friends informed about their decision for or against organ and tissue donation; consent to organ removal by relatives in case of unclear decision of the deceased.

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 a 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). 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; Opinion changed just like that, contradicts ideas about dying, desire to help others, current system, fears in general, doubts as to whether brain death is death of the person, bad experiences, insight that organ donation makes sense, fear of being given up prematurely, other); change of opinion towards consent to organ and tissue removal, rejection or determination of which organs and tissues may be removed or are excluded from organ donation; interest in information on the topic of organ and tissue donation; preferred type of information desired (objective information, experience reports from affected persons, combination of objective information and experience reports); evaluation of the objection regulation and the consent regulation with regard to organ and tissue donation; preference for objection regulation or consent regulation; trust in the German organ donation system lost due to the organ donation scandals.

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.