Table of Contents
Overall, the #Options survey received 5789 responses from NHS staff. The Covid-19 pandemic has further impacted and participated in Northernstems' NHS organizations, and came primarily from the NENC (86%). Of the respondents, 1,404 (24%) left 1,657 free text responses for analysis. Family discussion questions elicited the largest number of responses, accounting for 66% of responses (n = 1088), followed by against the law at 19%n = 316) and 15% required details (n = 253). The answers to the anti-legislative questions included the most information, and thus provided the most abundant data. Over three questions there were six main themes and 22 sub-themes. See Table 1. Numerous free text responses demonstrate the multifaceted nature of personal views, including many quotes, including overlaps between themes and subthemes.
Respondent characteristics
Compared to all #Options survey respondents, the free text response group included more men (21% vs. 27%), fewer women (78% vs. 72%), and only 18-24 years of age (7% vs. 8%), respectively. The free text group had over 5% of ages 55, while all other age groups were 2-3% lower than the overall group. Furthermore, the free text groups are more ethnically diverse than the group as a whole (6.9% vs. 15.4%), and religions of all names also have a higher expression (3.9% vs. 7.3%).
Question 1: I am against legislation – could you help me understand why you are against this law?
Of the three questions, this derives the largest number of answers from men (there are answers from men).n = 94, 30%), people over 55 (n = 103, 33%) and minority responders (n=79, 25%). A subset analysis of employment locations shows that 27% were from transplant centers (n = 84), 8% were from mental health strain (n = 26), and 4% from ambulance trustn = 14). Thematic analysis found four main themes and 12 sub-themes from the correspondence, and the dominant theme was perceived as a loss of autonomy.
Theme 1: Loss of Autonomy
The reasons for the loss of autonomy among respondents were categorized into four sub-themes. First, it challenges the nature of informed consent and, secondly, it challenges people's perceptions of legislative changes. One respondent said that individuals are needed. “It's fully recognized and informed.” [R2943] Because they agreed to donate organs. However, one respondent said they believe that individuals have it “do not have [been] Information was provided.” [R930] therefore “If people don't recognize it, how do they choose what happens to their organs?” [R1166]. It was suggested that there may be a perception of change “Hidden in Covid” [R4119].
Additionally, there were concerns about the means by which opt-out decisions were recorded, especially those not. “I'm not tech-savvy” [R167], “Homeless” [R5721], “Vulnerable” [R4553]and “Aged people” [R2155]. Therefore, it removes the individual's right to record his decisions because he is at a disadvantage.
Finally, respondents expressed concern about the move towards an authoritarian model of national ownership of organs. This elicits strong negative reactions from individuals under state-owned beliefs; “harvest”Under the consent approach, it appears that the human organs are removed, and as a donor, as a result, the self-explanatory “I'm furious that the government has decided to allocate my organs. It's not theirs, it's my gift. I'm now removing myself as a longtime organ donor.” [R593].
Theme 2: Results
Following respondents stating their reasons for opposing legislative change, they focused on trust and further discussed what they believed to be the result of the opt-out law. Respondents cited the lack of trust in the system; “I don't trust the UK government.” [R5374]although some have cited a surprising lack of trust in healthcare professionals, “Don't trust your doctor when it comes to organ donation.” [R3010],Just as fears of eroding trust with the public, “This will lead to a direct conflict with the public, where donations of NHS organs are directly involved.” [R1237].Respondents further believed that legislative changes would lead to an increase in error. “I'm not sure there will be no errors in notifying my objection and that this will not be handled correctly or handed over.” [R3018].Finally, this change also “Additional upset” [R587],For a family who is already sad.
Theme 3: Law
Respondents further opposed the law itself, as they believed there was a lack of evidence base to prove they had been successful in increasing the number of organs donated. In addition to this, respondents recognized the law as a religious attribute, as a law that removed the selection of donors regarding the organs they wanted to donate. “I don’t care about donations, but I want to choose what I like. [R5274].
Theme 4: Religion and Culture
Religion and culture were another common theme with sub-themes related to the lack of clarity regarding the definition of brain death, maintaining post-mortem physical integrity. Many others say that organ donation is contrary to their religion, or “I don't know if organ donation will be allowed.” [R1067].
Question 2: I need more information to make a decision. What information do you want to decide?
This question elicited most of the responses from women (n= 188, 74%), people over 55 (n= 80, 32%), 19% come from ethnic minority groups (n= 49). A subset analysis of employment locations shows that 18% were from transplant centers (n= 46), 8% were from mental health strain (n= 18), and 9% from ambulance (n= 23). Thematic analysis revealed the main themes “all”. Many responses did not specify the required information, but showed that more general information about organ donation is needed. This had five sub-themes.
Sub-theme:
The first sub-theme identified requests for information regarding family contribution decisions and their impact on information provided to families. This includes offering “Emotional Health” [R162] Support and information on whether a family can do it “Appeal against the decision” [R539] or “Consult” [R923] Following the death of their loved one. This was primarily requested by those employed in transplant centers.
The second request was information about “The post-mortem process of organ search” [R171]there are specific requests to confirm eligibility, primarily by ethnic minority groups and groups employed by mental health struts. Other examples of requested information about the included processes and routes “How organs are used” [R1086], “Things to Donate” [R1629]and “Who will benefit from them?” [R3730].
The third request was information on advertising strategies to raise awareness of legislative changes. Many respondents said they didn't think it was enough. “Media reporting” [R3668].An additional consideration of public dissemination is that it isEasy to read updates” [R1373],in particular “Age people or people with poor understanding of English who struggle with this process.” [R1676].
The fourth request was information about the system for recording decisions. If someone was in a group that was excluded, the opt-out process had additional requests “Those with safety precautions” [R3777],And what if it is easy for an individual to change their minds and record this new decision?
Finally, like the first question, the fifth request was evidence-based information. The respondents say they are “I want to know the reason behind this change.” [R3965]I believe that if they have a deeper understanding, this may boost their support for legislative change.
Question 3: Have you discussed your decision with your family? If no, can you help me understand what stopped me from discussing this with your family?
Free text responses to analyse came from those who answered “no.” “Did you discuss your decision with your family?” This received 1430 responses with women (n= 1025, 27%) mainly answer “no”. However, not everyone left a free text response, leaving 1088 comments for analysis. These were mainly made by people over the age of 55 (n= 268, 24%), 5% come from ethnic minority groups (n= 49). A subset analysis of 1088 responses on location of employment showed that 14% were from transplant centers (n= 147), 7% were from mental health strain (n= 78), and 9% from ambulance (n= 96). The analysis revealed the main themes of priority and relevance, consisting of five subthemes.
Sub-theme:
The first subtheme identified one reason why it was them “Individual decisions” [R3] And there will be “There's nothing to gain.” [R248] From the discussion. Some respondents said their families accept and support their wishes in relation to organ donation, despite the lack of discussion. “I think they all think the same way.” [R4470].However, some people said that their reasons were their reasons. “I don't have a family” [R1127] Discuss or have this “Young people with limited understanding of organ donation” [R356]. Positively, several respondents suggested that this question acted as a prompt to speak to family members.
Another reason the respondents stated was that they found it too difficult to discuss topics. “Recent Genes” [R444]”Current Environment” [R441]and “I hate dealing with death” [R4486]. As evident in the latter quote, many respondents saw the debate about death and dying. “Taboo Subjects” [R3285]increasing the avoidance of having such a conversation.
Finally, the fifth reason was a few respondents. “I hadn't made a decision yet.” [R2478]. One respondent wanted to make sure they had checked all the information available before having an informed discussion with them.
Misunderstanding
A further subset analysis of responses coded as misconceptions was reviewed at the request of the NHSBT and was interested in whether these occurred from medical staff working with donors and recipients. Misunderstandings are identified across three questions, and misunderstandings account for 24% of legislative responses. The responses used emotionally powerful words, including suggestions for national ownership of organs, abuse of the system to procure organs, dethored, religious and cultural objections, and changes in the treatment of donors that speed up the value of recipients, and abuse of the system for procurement of organs.
During my career I worked at the Organ Letteriel Theater and during this period I was uncomfortable with how the operation was carried out. Although “brain death” tests were completed prior to surgery, patients' vital signs often reflected the patient's response to painful stimuli. Sometimes patients were not given normal pain relief, which is often given during routine surgery. This made me reconsider the donation of organs, which makes me uncomfortable. I always carried a donation card before my experience, but after that I didn't want to give. This may be a personal feeling, but that's what I have experienced. [R660].
I think this is a choice that individuals and families should be left to make. In many nursing care spent years with transplant patients, not all recipients embraced a “healthy lifestyle” and many people returned to their old lifestyle choices and needed a transplant in the first place. [R867].
Additional comments suggested that the ability to eliminate donations of certain medical conditions and advancement ages was removed and that the ability to select organs to donate was removed.
I had a heart attack so most of them would be useless, I smoke and have type 2 diabetes. [R595]
Further analysis shows that 27%n= 24) Of these comments, it was made by individuals who worked in the community supporting donors and recipients.
