3.2.1 Relationship-centred notifier
All notifiers concurred in stating that the information given to the donors was based on the results of the screening tests; several stated “I devote whatever time is necessary to communicate the lab results with the intention of dealing with the doubts and anxieties of the donor and to make him/her aware of getting medical attention and treatment” [P02, P03, P08, P09, P10, P25]. Likewise, many of the notifiers stated that they were aware of the fact that the disclosure of the screening test results for communicable disease agents puts the donor in a vulnerable situation [P01, P02, P03, P08, P09, P25, P29, P31, P37]. More than half also expressed concern about how much donors understand: “Their emotional situation is such that it reduces their capacity to understand and discern” [P01, P02, P25, P28, P29, P 31, P37].
That is the reason why they opt to be brief and punctual in the type and quantity of the information they disclose while centring on informing the donor about the importance of seeking medical care as appropriate: “I tell him/her: ‘I will send this sheet to your general physician so that you will get the treatment’. And I add: ‘You can search on the Internet if you like’. I do not go farther, because they prove to be unwilling… Then I only give the information with the attitude if he/she wants to believe me, well, and if not, not” [P01 (01:10)].
A notifier [P28] added that it is not his obligation to notify the sexual contacts of the donor: “I cannot sit both down here to tell them…because it is not a counselling session, I am simply providing a reactive test result to a donor that came up” [P28 (28:15)].
More than half of the notifiers stated that, because of legal issues, despite the diagnostic uncertainty in the initial screening test result, they feel obligated to inform the donors that they will be unable to donate blood in the future, even if the results of the diagnostic confirmation were negative [P03, P09, P25, P30, P31, P37, P38].
“We say: ‘It definitely cannot be done because of the law’; that is, we blame the law. We tell them: ‘You will not be able to donate; the law does not allow it’. And they are told, as to give them some hope: ‘You know what? Laws change and we do not know if in the future the law will permit you to donate blood…Right now you are a permanently deferred donor, yet the term definitive or permanent does not exist, remember that it is possible that the law will change’” [P25 (25:84)].
Many of the notifiers recognised that the notifier―donor relationship is not among peers. They mentioned: “We limit ourselves to acting in adherence to the Mexican Official Standard for the Management of Human Blood” [P01, P09, P28, P29, P30, P31, P37, P38]. They also explained that as notifiers, they protect their integrity and reduce the possibility of grievances among the donors: “Being sued and other claims because of moral damage to the donor, who upon repeating the lab tests finds that his/her results are negative” [P08, P10, P31, P38].
3.2.2 Beliefs, emotions and feelings
More than half of the notifiers affirmed that “The blood donors always come expecting to have a possible disease, this causes them to experience a multitude of emotions, and they identify it as something difficult that changes their lives; they go away feeling pressured and without understanding the information they have received in reference to the lab results” [P01, P02, P03, P08, P30, P31, P37].
There were some who believed that this “multitude of emotions” is influenced by “the life history of the donor”, “the type of information disclosed”, “the relevance that is given by the notifier to the risk factors” [P02, P10, P29], “the form and clarity with which the lab results are explained” [P28] and “the feeling of guilt by the donor” [P03, P28].
There was a notifier who stated that the best strategy is to overdiagnose: “I prefer to be told that indeed I am sick so that I continue to have laboratory tests…until a possible disease is completely ruled out, than to be told I am healthy and in twenty years I die from liver cancer because I had hepatitis” [P03 (3:40)].
The emotions and feelings awakened in the notifiers (during the notification process) had to do with “sadness because of the state of mind of the donors”, “the preoccupation about the situation of the donor”, “the disappointment at being unable to handle the emotional state of the donor” [P02, P03, P08, P09; P25, P28, P38] and “the anger and ire caused by the reactions of some donors” [P02, P03, P10, P25]. As explained by one notifier: “It makes me experience as much…indeed, sadness, sadness when I say ‘sh-t’ perhaps they are persons with little support…; anger, also on some occasions, when the donor tell me his/her sex life includes risky practices or when his/her partner was the person who infected him/her. And…bad vibes, it generates anger and ire” [P02 (2:87)].
And “fear because of the donor and what may happen to him/her” [P25]. The notifier further stated: “My preoccupation is bigger when they cross the door and leave; are they [refers to physicians who will provide them care at healthcare units] really going to control the risks? Are they going to listen to them? What care are they going to deliver to a person who is not insured, who is not affiliated to popular insurance?” [P25 (25:13)].
There were some who stated they felt “indifferent” and added “I only look at the donor when I am providing him/her information” [P01, P29, P30, P31]. One of the reasons was, for example, “I do not like to notify [silence] because I do not like to be in touch with those emotions, to give that type of news…; yes, indeed, those are minutes in which one even feels badly for them [silence]” [P30 (30:34)].
Another notifier felt “amused” and even stated that “the very diverse way in which the donors react during notification can drive me to madness” [P10]. This notifier also said: “Once a young woman arrived with 50 ELISA tests, all of them negative, but she said that she was infected that there had to be an error, that she was infected…that the labs did not detect her condition…She told me: ‘It is because I work with a guy who has HIV, in a small, closed, cubicle, back to back’. And I thought My God! That is not a risk situation, well, then it could drive me to madness” [P10 (10:16)].
3.2.3 Consequences of tagging the donor with the expectation of a disease
All of the notifiers acknowledge that one of the main consequences of the notification process is the alteration of the donor’s state of mind: “aggressiveness”, “anxiety”, “fear”, “stress”, “confusion”, “uncertainty”, “loss of hope”; “they cry, yell and leave in a state of shock” [P01, P02, P03, P08, P09, P10, P25, P28, P29, P30, P31, P37, P38].
“One donor left exploding, saying things, bad-mouthing that he was going to take revenge on someone… At the end of the notification he stated that he felt well but experience itself tells you who is the person that leaves feeling tranquillity and who is the person that will not. The man I have referred to left throwing things and running into people while walking; this running over things and people tells you this person is not well, that he is not well….” [P09 (9:231)].
“I have a very special case of a relative that…had a new born daughter who was in the hospital because she had hepatitis. The physicians informed him that she was jaundiced. At that age they could not say that she had hepatitis, not to a new born, then he went home and committed suicide because his daughter suffered from an illness that he had transmitted her….” [P37 (37:48].
In the same line, many notifiers acknowledged that as a consequence of the notification process, the different areas of the donor’s life can be impacted: with his/her partner, “infidelity, divorce”; with family, “to inform or not what has happened” and with work, “discrimination” [P03, P08, P09, P10, P25, P28, P29, P30, P37, P38].
“One donor made the following commentary to me: ‘I told them at work that I had Hepatitis C and then I was discriminated… I can no longer go to the bathroom… The entire month I was treated as someone suffering from the pest [nervous laughter]’. And I replied to the donor: ‘You do not even have that diagnosis; that is, you should not have revealed what you did, especially in your workplace if your diagnosis had been not confirmed….’” [P03 (3:28)]
They also identified physiological impacts: “They blush, sweat, become pale, with sweaty hands and crack their fingers…” [P28]. However, one notifier described how to effectively carry out the notification process: “In order to complete a good notification you even have to work on your own demons. I mirror myself in the people…work on my own demons. I consider the notification process as a violent slaughter. The worst thing that you can do to a donor is to take away the hope that his lab results be negative” [P10].
3.2.4 Barriers and facilitators
The main barrier identified by most of the notifiers was the lack of training as a notifier [P03, P08, P09, P10, P28, P29, P30, P31, P37, P38].
“Here, no one has taught you anything…it is like a public speaking contest with the donor, doubts will emerge then and you have to explain them to him…” [P08 (8:62)].
Another important barrier identified by the majority of the notifiers was the mental difficulty of the donors to make a reasonable judgment because of the way they are requested or called to come to the BB to find out their test results. The manner in which they are requested to come depends (they said) on three events: “the communication means used to make the request (postal, telephonic, or electronic)”, “the person who calls them [here, they spoke about personnel rotation] and what they are told during the call” [P03, P08, P09, P10, P28, P29, P30, P31, P37, P38]. One notifier highlighted: “The donor arrives to demand attention, he/she comes in a crisis state, they do not listen, what they want is for someone to solve the problem that he/she has; then, they are blocked…do not listen to you…” [P09 (9:4)].
The “lack of psychological support for the donors” was identified as a barrier by several of the notifiers: “only those with HIV receive it” [P08, P10, P28, P29, P30, P31]. And “The short time available to disclose the lab tests’ results and the overpopulation of donors we have to care for” [P09 (9:46)].
There is also the fact that “The donors lie in their declarations about their sexual risk factors and personal data for post-donation contact” [P09, P25, P28, P37].
“You ask for a phone where he can answer, and then if you call them at home and you are in contact with him; well, there is no better way, right? Sometimes they give you false phone numbers. Right now, we have a donor who reacts to HIV and the phone numbers for the place where he works, his cell phone and home are false… When a person lies, I understand that that person has risk factors, right? that is why he denied all that information…” [P09 (9:27)].
The identified facilitators were “Training the notifier on how to disclose to the donor his/her screening test results and how to provide psychological support given their emotional reaction”; “To improve the already standard way of locating reactive donors or even to implement a programme that takes care of the entire process of localisation”; “To improve the manner of the notifier―donor interaction, such as the importance of the first greeting, the volume of the voice and to call them by their name…” [P02, P08, P10, P25, P28, P30, P38].
Except for one donor, whose donation was altruistic [P33], all the others stated that they had made a family/replacement donation.
Three non-medical notifiers, two social workers and an accountant, were the ones who localised the donors with reactive viral marker results. They were localised and requested in the following manner: by telephone call, speaking directly with the donor [P05, P07, P12; P15, P16, P17, P18, P21, P22, P23, P24, P33, P36]; by telephone, through a relative [P04, P06, P11, P13, P19, P26, P27]; postal service [P14, P18, P23, P35] and telegram [P20]. Two donors did not describe how they were requested to come [P32, P34].
Several donors emphasised that they considered themselves to be “healthy and without risks”, without explaining their potential illnesses [P04, P05, P11, P13, P18, P19, P23, P24, P32, P33, P34]. Many attributed their lab tests’ results to different causes, such as “the presence of diabetes in the family”, “failure to wash hands”, “a needle puncture in one finger”, “the meals consumed”, “lack of sleep”, “throat infection”, “vertebral column problems”, “drug consumption”, “alcohol consumption”, “use of certain combs or nail clippers”, “a previous deferral as a donor”, and “presence of bedbugs at home” [P05, P06, P07, P11, P13, P14, P15, P16, P17, P18, P20, P21, P22, P23, P32, P33, P34, P36].
3.3.2 Emotions and feelings caused by the process of notification
The emotions and feelings reported showed the three phases of the notification process: the initial phase, the notification process itself and the post notification phase.
The initial phase refers to the call or request for the donor to come to the BB to know his/her screening test results. The call was made by three non-medical notifiers. Each one of the donors was told that “something” had been found in their initial results and that they should come to the BB to receive more information. From then on, the donor did not receive further information until he/she came to the BB and had a face-to-face interview with the notifier to know the test results.
As a result of this call, all of the donors stated that they felt a wide range of emotions and feelings, such as “surprise”, “fear”, “fearful amazement”, “crying”, “anxiety” (e.g. “a knot in the throat”), “sadness”, “nervousness”, “stress”, “anger”, “suffering” (e.g. “it was terrible”, “I felt badly”), “suspense”, “sinking feeling” (e.g. “strange”, “frustrated”, “doubtful”),“rejection”, “depression”, “thoughtful”, “insecurity”, “disillusion”, “disappointed”, “lack of trust” and “preoccupied” [P04, P05, P06, P07, P11, P12, P13, P14, P15, P16, P17, P18, P19, P20, P21, P22, P23, P24, P26, P27, P32, P33, P34, P35, P36].
“The person who called me on the phone told me: ‘Go to the doctor [he/she is referring to the notifier] there he/she will have a better explanation’. I answered: ‘Good, are you a nurse or a secretary? Or what are you?’ And he/she replied: ‘Don’t get angry…’ I answered: ‘I am not angry, but there should be a person here trained to solve doubts…’ [repeatedly strikes the table with his fist]” [P11 (11:8)].
“The biggest fear, that it could be something very serious, and that my life was already limited, that is what I felt” [P17 (17:9)].
“Well, badly… [tries not to cry] I really feel like that because they don’t tell me the things [silence again]. I feel as if I had a knot in the throat…I wish they would tell me what I have so that I would be quieter [there is another silence]. The lady physician told me that it was not serious but whether you want to or not you are always doubtful. Why did they not tell me at that moment that I could not donate blood? I do not understand, no, I do not understand” [P12 (12:14)].
The phase of the notification process itself encompasses the time during which the notifier interviews the donor and discloses the reactive viral marker results. All the donors reported that: “The physician [the notifier] asked me many questions and did not clarify my doubts”. They also stated that: “I did not understand the information received” [P04, P05, P06, P11, P12, P13, P14, P15, P16, P17, P18, P19, P20, P21, P22, P23, P24, P26, P27, P32, P33, P34, P35, P36]. Several stated having felt “blocked” [P06, P12, P16, P23, P34].
“At the time I thought it was a serious disease, I did not know what to do…For instance, all that day I thought what if I had this? And if I had that other? Will I tell my family? Will I not tell my family?” [P16 (16:19)].
“…As being ignored, that is what the lady physician made me feel [he refers to the notifier], as being ignored; that is, as if she were saying: ‘Well you are screwed’. And I thought Ah! C’mon!, as if I wanted to be here…I really prefer, I swear to you, I prefer put money together and spend it in a lab…I think that they made a mistake, they made a mistake, they gave me someone else’s results, that is what my brain is thinking” [P18 (18:41)].
“I was not given the test that that I had undergone, and I asked him [the notifier]: ‘What type of test did you use?’ And he replied: ‘It was the rapid diagnosis test’. Then, I answered: ‘Yes, but what type of test did you use? How reliable is it?’ He replied: ‘That is, it is a blood bank!’ He almost told me: ‘Listen stupid little girl! It is a blood bank!’” [P04 (4:25)].
The emotions and feelings described were “anger”, “sadness”, “preoccupation”, “depression”, “nervousness”, “fear”, “sacredness”, “lack of confidence” and “deception” [P04, P11, P12, P14, P17, P18, P19, P22, P24, P33, P34, P35, P36]. One of them even thought of committing suicide if they told him he had AIDS [P33]. Only two donors mentioned trying to be at ease during the notification [P20, P21].
“Well, right now I did feel, not anger, but ire, not against me, but against the person [refers to the notifier] neophyte, ignoramus, or whatever she is, she is wearing a butcher’s coat although she calls herself doctor…she was unable to offer me an explanation…Now that I am rethinking the whole thing, I see that that she prescribed an option [he refers to new lab tests], I will see what she tell me about the option. If she tell me the same, I will send her to go and screw his mother…as simple as that” [P11 (11:22)].
The principal motive for being preoccupied felt by all the donors was “the uncertainty about the type of lab tests they should get done” to confirm or reject the illness. For many donors, it was also “the possibility of being sick” [P04, P05, P06, P11, P14, P15, P17, P20, P21, P22, P23, P27, P33, P35, P36]. In addition, every one of them mentioned being preoccupied about the potential impact on their family.
“What if during those days I infect my family? …I imagine that disease travels through the blood, Is that true? He even did not even tell me [referring to the notifier] Do you know what? Right now, you must abstain from sexual relations. The only thing that told me was: ‘Alcohol is prohibited’. And what about alcohol? So, he seems to me as I having an alcoholic face or what? The only thing that prohibited me was alcohol…and as far as I know alcohol does not make us ill….” [P18 (18:40)].
Several donors emphasized the saying about “Whether they should communicate their family the information received and how to do it” [P04, P12, P13, P18, P19, P23, P24, P26, P32, P36]. One of them stated: “What will they say that I am going to bed with everyone in the world” [P16]. Only four donors indicated in a specific manner their preoccupation about having HIV [P07, P16, P19, P33].
The phase after the notification has to do with what the donor experiences when he/she knows the second results of viral markers. Several of the donors mentioned feeling “relieved” and “released” [P05, P06, P07, P15, P16, P19, P23, P26, P27, P32, P33]. Among them, one donor stood up because he said he was particularly “happy!” because he had been informed that “it was not HIV” despite acknowledging he had engaged in risky sexual activities [P07].
Some donors whose second set of viral marker results were indeterminate or reactive reported to have researched on the internet [P05, P06, P18, P19, P20] due to the confusing nature of the information received. Others mentioned that they immediately underwent the tests in a private lab and have gone to another doctor for a second opinion [P04, P13, P20, P23, P34, P35, P36].
3.3.3 Consequences of tagging the donor with the expectation of an illness
After the notification of the test results, the donors identified a series of repercussions in the different spheres of their lives: individual sphere, with their sexual partner, with their family and children and with work and social life.
With regard to the individual sphere, all the donors presented, to a greater or lesser degree, a gamut of emotions and feelings, as previously indicated. Some added loss of appetite and concentration, with headaches and insomnia [P12, P15, P17, P18, P26].
“For me it is indeed very impacting…I do not know what I am going to do; moreover, I do not even have the desire to go to work, I swear, right now I do not want to go to work, but, also, I do not want to go home…Hunger has gone away…I believe I am going to walk for a while, I am going to think, I am going to see what I am going to do… I am having many doubts, many, many doubts. I will think about what to say at home…I do not know if I should eat in the same dishes, if I should use the same spoons, I do not know….” [P18 (18:38)].
With regard to their sexual partner, several donors stated that they felt “an absence of sexual appetite”, “rejection of intimacy for fear of infecting” and “discussions with their partners” [P06, P07, P18, P19, P22, P23, P27].
With regard to their family, half of the donors mentioned that they distanced themselves from their children for fear of infecting them [P04, P06, P07, P11, P12, P18, P23, P24, P32, P33, P35, P36].
“… I no longer wanted to get near my children…I saw them this way [he retreats into his seat]. My youngest child would ask me ‘give me a kiss!’ I gave him a kiss reluctantly…I did not reject them, I just put them aside. My oldest boy would ask me: ‘Are you sick?’ I would tell him: ‘No, I am well son.’ Up to there and not more [Sigh].’ [P06 (6:31)]
With regard to work and social life, several donors emphasised the lack of concentration at work, absence from work, being ridiculed in workplace and rejection. There were even some who stated that “it had changed their lives” [P04, P06, P07, P12, P15, P18, P22, P27].
“Well…imagine that I got to work, and I only wanted to be like this [he retracts into his seat]. Or sometimes wanted someone to come near me and ask How are you? How do you feel? Or something like that, something like that” [P06 (6:55)].
“…It is impacting my work a whole lot, in my daily life…; and in my family life, all of a sudden we have a discussion, and those fights remain here, in my head and I take all that to work…indeed it is impacting me a whole lot….” [P12 (12:36)].
3.3.4 The idea of ‘permanent rejection’ or ‘lock’
Half of the donors reported to have understood that permanent deferral meant that they would not be able to donate blood again; nevertheless, they stated that they had not understood the reason for the deferral [P06, P07, P11, P12, P13, P16, P17, P18, P21, P22, P23, P24]. One donor said: “Because of standard procedures I would not be able to donate blood again; despite the fact that my final lab result was negative”; notwithstanding, he said: “I would donate blood again if it were necessary” [P15]. In contrast, another donor stated that he would not donate blood again because he did not want to know anything about BBs [P04]. Several donors did not understand whether they were permanently deferred for future blood donations [P05, P14, P19, P20, P26, P27, P32, P33, P34, P35, P36].
3.3.5 Barriers and facilitators
The barriers more frequently mentioned referred to the notifier–donor relationship. Several donors described the notifier as a “cut to the bone”, “cutting off” person; someone who closes off access to the options: “he does not allow me to talk and only refers me to other physicians” and “he does not clarify doubts” [P04, P07, P18, P19, P20, P23, P24, P32, P33]. They also identified the short time for receiving care as a barrier: “between seven and fifteen minutes” [P04, P07, P15, P16, P18, P24, P32, P33].
“They told me in the blood bank that I had hepatitis C, they never corroborated their statement, they sent me to the family physician… A terrible situation! Because he was never able [he/she is referring to the notifier] to tell me what happened. I told him: ‘But how is it that you are going to send me to my family physician?’. To which he added: ‘Yes you are going to go…your lab test is reactive’. And I told him: ‘But why? Why don’t you corroborate?’ He insisted: ‘No, you go with your family physician’. That way, cutting me off….” [P04 (4:11)].
Some identified as a barrier the fact of “not remembering anything” of the information given to them during the notification. This was described as “it was erased from my mind”, “out of sync”, “the brain works slowly” and “disoriented because of so many doubts” [P06, P12, P16, P23, P24].
“I felt…I felt out of sync! … nervous, it erased from my mind …; that is, I only intended to find out the diagnosis of what I felt, that is, I went only to find out what I had nothing more….” [P06 (6:28)].
Among the facilitators stood out the fact that the news (from the call in the initial phase) should have been communicated “not as abruptly” “in a personal manner and not to the relatives” [P16, P18, P19, P22, P24, P27, P33].
“… I would have liked for them to call me on my mobile phone, not my mother so as not to preoccupy her…that I would be the only one to find out and not involve my mother because everyone is scared” [P22 (22:45)].
“They should look for…some way to tranquillise you by phone, and say You know what? That we could not do the tests, or your results are lost for some reason…; with technical but general terms…it is not the same ‘aw, what happens is that it could be that you have something’” [P27 (27:11)].
Likewise, during the notification process there were facilitators, such as: “a more human treatment from the notifiers”, “with tenacity”, “with comprehension”, “with compassion” and “with empathy” [P04, P07]. Also, “psychological support” and “a longer time for the notification” [P04, P12, P16, P18, P33]. One donor emphasised the need for the notifier to be trained [P19].