Attitudes of family members towards organ donation
In this study, a total of 59 subjects from 15 families were included. They were numbered by letters: N1, N2, N3, N4, N5… N14, N15.The interviewees included close relatives such as grandparents, parents, children, aunts and their husbands, brothers, and sisters (cousins), etc. The youngest interviewee was 16 years old and the oldest was 74 years old.
Of the 59 family members interviewed, 58 had heard of organ donation. During the interview, it was found that the ways for citizens to understand organ donation are also diverse. Most of the interviewees knew organ donation by TV, newspaper, magazine, mobile phone, and computer. However, only 24 of them clearly said that they had talked about organ donation, mainly with friends, classmates, or colleagues, and few talked about organ donation with family members. Of all the interviewees, only 9 indicated that they had considered organ donation. Among the 59 people who participated in the family interview, 30 stated they were reluctant to donate organs, 13 of them explicitly said it was a taboo to talk about this topic, and 25 expressed their intention to donate organs. The results are shown in Table1.
Through interviews, we found that the public had a certain understanding of organ donation. In daily life, if there is no certain opportunity or demand, organ donation will not be discussed. Especially in the family, organ donation is still a taboo topic. Most interviewees said organ donation has nothing to do with their lives. Young interviewees thought that they were still young and had never thought about it. While some others said that as they were old, it's useless to donate organs that were aging. Some suggested that organ donation should be considered only when the body had incurable diseases.
Table 1. Interview families' perception and attitude towards organ donation
Heard about organ donation(n=59)
|
|
Yes
|
58
|
No
|
1
|
Way to know
|
|
Paper newspaper
|
11
|
TV, radio
|
40
|
New network media
|
22
|
Hospital, school
|
6
|
friends
|
9
|
Talked about organ donation
|
|
Yes
|
24
|
No
|
27
|
Unknown
|
8
|
Willing to donate organs
|
|
Yes
|
25
|
No
|
30
|
Unknown
|
4
|
Although most interviewees agreed that organ donation is worth promoting, many of them were hesitant when asked whether they would like to donate organs or not. During the interview, it was found that those who were willing to donate organs were not taboo about the topic of organ donation, and they were relatively calm when talking about death.
In the process of organ donation, the attitude of family members is one of the most important factors that affect the success of organ donation. We surveyed whether the family members agree to other family members signing the organ donor card. The results are shown in Table 2.
Table 2. Attitudes of family members toward organ donation by other family members
Give consent to family members’ donation
|
Willing to donate (n=25)
|
Unwilling to donate (n=30)
|
Unknown (n=4)
|
Total
(n=59)
|
Yes
|
8
|
0
|
0
|
8
|
Respect their wishes
|
8
|
3
|
0
|
11
|
No
|
7
|
22
|
0
|
29
|
Unknown
|
2
|
5
|
4
|
11
|
Among the 59 interviewees, 29 did not agree to their family members' organ donation, 7 of whom said they could donate organs, but did not agree to their family members' organ donation. Only 8 of them agreed to their family members signing the organ donor card, and 11 said they respected their families' wishes. Some of them said that in the case of opposition from their families, even if they had the intention of organ donation, they would choose not to donate because they cared about the opinions of their families. Therefore, if family members hold a negative attitude towards organ donation, the resistance of organ donation is relatively large.
Seven interviewees thought they were willing to donate organs after death, but they were reluctant to let their families donate organs. Five of them were women, among which four were mothers. To some extent, it reflects that in Chinese families, mothers are more willing to sacrifice themselves. The interview examples are as follows.
No, I can't accept the death of my children. I will be heartbroken and I will not sign the organ registration card. (N7 mother, 49 years old)
I don't agree with my family members signing it, but I will agree to sign it myself. I don't want everyone in my family to lose a certain part of their body. (N10 mother, 46 years old)
I agree to donate my organs, but I don’t agree with my parents' organ donation. If I sign a registration card, my family will have the priority to get organs when they need them, I will not hesitate to do it. (N12 the youngest daughter, 20 years old)
The impact of the family culture models on organ donation
Through interviews, we classified family culture models into the patriarchal family model, independent family model, and patriarchal subversion family model according to whether there is patriarchy or patriarchal subversion in the family. Additionally, according to whether the willingness of family members to donate organs will change with social and cultural factors (taking the national policy as an example), family culture models were classified into stubborn family culture model, swing family culture model, and selfless-dedication family culture model. See Figure 1. Each family has a classification of family culture models. See Table 3.
The patriarchal family culture model
The patriarchal family culture model does not represent a family that is completely father-centered or listens to the father ’s opinions but refers to the father ’s opinions or ideas that can greatly affect the wife ’s and children ’s ideas and decisions.
For example, in the N4 family, the father who is a member of the Chinese Communist Party believed that he should sign the organ donor card. The mother of the N4 family who is a traditional Chinese woman would follow the father's decision and ask for the opinions of her husband and child before signing the card. The son himself was not for organ donation. Even if all the people around him signed the organ donor card, he would not sign it himself. But if the father took the lead in signing it, the son said he would consider signing the donor card or even was willing to take the lead in signing it.
As a government official, even if other people are not willing to sign up as an organ donor, I will sign it. I will take the lead in signing the organ donor card. (N4 father, 48 years old)
I agree with your father and I will follow his decision. (N4 mother, 46 years old)
There is no need to donate organs as the dead should be laid to rest. I would not sign the donor card even if all the people around me sign it. It depends on my own will and the will of my family. If my father takes the lead in signing, I'm willing to sign up as a donor. (N4, son, 19 years old)
Besides, in the N11 family, the mother did not agree to organ donation and thought it was a taboo. The father was not willing to sign the organ donor card, but he was willing to sign it when the national leaders took the lead in signing it. At this time, the mother's attitude also changed with the change of the father's attitude.
It is obvious that the patriarchal family is dominated by the father. As the spiritual pillar of the family, whether the father signs the organ donor card directly affects the whole family's attitude and decision on organ donation.
The independent family culture model
In the independent family culture model, each member of the family has independent thoughts and the opinion of one family member will not easily affect the decisions of the whole family. Everyone has the same status in the family. This is the current model of most families in China. There is no obvious class division in the family, and there is no "monopoly of power”. For example, in the N5 family, the father was in favor of organ donation. As for whether the family members are willing to donate organs after death, he will respect the wishes of the family members. However, the mother was not willing to donate organs after death and opposed to the attitude of family organ donation, not willing to donate organs by relatives. The daughter was neutral on this issue and would respect the decision of her parents. She would respect her parents' decision.
Table 3. Classification statistics of interview family culture models
Family culture models
|
Family number
|
Total
|
The patriarchal family culture model
|
N4,N9,N11,N13
|
4
|
The independent family model
|
N1,N3,N5,N6,N8,N10,N14,N15
|
8
|
The patriarchal subversive family model
|
N2,N7,N12
|
3
|
The stubborn family culture model
|
N2,N8,N11
|
3
|
The swinging family culture model
|
N1,N3,N4,N5,N9,N10,N12,N14,N15
|
9
|
The selfless dedication family culture model
|
N6,N7,N13
|
3
|
Agree to organ donation. Family members can donate organs if they are willing to. It’s OK if it is useful. The dead can't be reborn. Why not help others? (N5 father, 55 years old)
I agree with others donating organs, but I am unwilling to do it. I won’t allow family members to donate organs. I’m just not so selfless. Death, especially unnatural death, is a taboo to me. (N5 mother, 49 years old)
If parents or my husband agree to sign it, I will not object to it and will respect their decisions. (N5 daughter, 25 years old)
The patriarchal subversive family culture model
In the patriarchal subversive family model, the father does not occupy the "central" position in the family, and there are members in the family who can affect the decision of the whole family, generally the mother, wife, or children. The patriarchal subversive family model can also be classified into two categories. One is the "feminist" family model, in which the mother or wife plays a very important role. For example, in the N7 family, there is a more obvious tendency of "feminism". During the interview, the father attached great importance to the opinions of the mother and agreed with organ donation. When deciding whether to sign the organ donor card, he would consider the opinions of his family, especially his wife.
The other is the "children deciding" family model. Children play a leading role in the family because with the growth of children, parents grow old slowly. At this time, children's discourse power at home also increases, and parents often listen to their children's opinions. For example, in the N2 family, grandparents said that whether they donated organs was decided by posterity (including children, grandchildren, etc.). The father and mother also said that they should consider their children's opinions.
It depends on our children's decisions. We don't know anything when we die. You can do whatever you like. They will decide whether to donate our organs. (N2 grandpa, 71 years old; N2 grandma, 68 years old)
The stubborn family culture model
In the stubborn family culture model, most of the family members hold a negative attitude towards organ donation, and it is not easy to change with social and environmental factors. Take the N8 family as an example, the mother thought organ donation was a taboo, saying that no matter whether there was a national policy for it or not, she would not donate organs.
If you ask someone else for their opinions about organ donation, you will be scolded. It's not good. I will not donate my organs anyway because I want to have a complete body. (N8 mother, 50 years old)
The swing family culture model
In the swing family culture model, the willingness to donate organs changes with social and environmental factors. Among the 15 families interviewed, most of them are swing families, indicating that the willingness of organ donation of citizens is largely affected by national policies and social environment. This kind of family has little knowledge about organ transplantation and organ donation, so the willingness to donate organs is not strong. Taking the N12 family as an example. Both father and mother were against organ donation, and they thought it was a taboo to talk about organ donation. But considering the current national preferential policies (if they agree to donate organs, their family members have a priority for the donated organs), they said they would consider signing the organ donor card.
The selfless dedication family culture model
In the selfless dedication family culture model, most of the family members are willing to sign up as a donor. Such families are generally altruistic and selfless. They are willing to donate organs no matter whether the state implements preferential policies or not, but the number of such families is very limited. Take the N13 family as an example. Parents and children were all for organ donation and had the willingness to donate organs. They thought organ donation was very meaningful and they were willing to take the lead in signing the organ donor card.
This proposal is very good. After a person leaves the world, if he or she can leave some useful organs for the world, he or she will make a valuable contribution. (N13 father, 51 years old)
Even if there is no preferential policy, I will consider organ donation, as long as I am qualified for it. (N13 daughter, 21 years old)