key: cord-0907371-xcqh57s8 authors: Matassini Eyzaguirre, S. M.; Villanueva Yapa, C.; Chunga Chunga, A.; Sagastegui Soto, A.; Neyra Vera, I. M.; Soto-Ordonez, S.; Guillermo Roman, M.; Oyanguren Miranda, M.; Soto-Becerra, P.; Hurtado-Roca, Y.; Maguina, J. L.; Araujo-Castillo, R. V. title: Narratives of the convalescent plasma donor in a Peruvian social security hospital: motivations, fears, expectations and experiences date: 2022-02-19 journal: nan DOI: 10.1101/2022.02.16.22270690 sha: 5a666a07dfe0b21df18f534d6a0bbcfb4bc7a319 doc_id: 907371 cord_uid: xcqh57s8 Objectives: To know and explore from convalescent plasma donators voices the experience in the blood donation process at a Peruvian social security hospital. Methods: Qualitative study with a phenomenological design. The investigation was carried out in 01 hospitals of the social security of Peru. Semi-structured interviews were carried out. Results: Eleven donors of convalescent plasma were interviewed. The main motivations for donating were being able to contribute to national research and supporting patients affected by COVID-19. Fears focus on the possible risk of contagion within the hospital. Donors emphasised the attention and support of health personnel alongside the donation procedure. The main expectations and suggestions point towards greater dissemination of donation campaigns with special emphasis on safety. Likewise, an improvement in the time of the donation procedure (from enrolment to the extraction of convalescent plasma), and the implementation of friendly spaces to encourage future blood donation campaigns were highlighted. Conclusions: The experience of the convalescent plasma donors was positive. However, improvements must be made in terms of processes and infrastructure to ensure future successful blood donation campaigns. China in December 2019 [1] . The disease spread rapidly worldwide, such that WHO declared it a pandemic on March 12, 2020 . Despite harsh containment measures, the spread of this virus continued worldwide. There are currently no specific treatments against so in the absence of a known effective therapy, the development of new therapies to treat symptomatic patients and reduce the risk of adverse outcomes became a priority. Convalescent plasma (CP) from patients recovered from COVID-19 was one of the treatments that were considered potentially effective early in the pandemic, and several clinical trials were quickly initiated worldwide [2] .Theoretically, plasma from convalescents of patients recovered from the disease contains antibodies that would help patients with COVID-19 to cure the disease or reduce its severity and mortality. However, currently, some clinical trials and meta-analyses [3, 4] conclude that, in general, PC would not reduce mortality in patients with moderate disease and would have little or no effect on measures of clinical improvement. For that reason, some clinical practice guidelines and living systematic reviews do not recommend using PC for COVID-19 treatment. Nevertheless, although there is no consensus yet, PC is being used in many countries to treat COVID- 19 [5] . On the other hand, some recent studies reveal that a specific type of PC, hyperimmune plasma, as opposed to 'conventional' PC, may indeed be an alternative treatment for COVID- 19 , especially if its administration occurs early [6] [7] [8] [9] . In addition, clinical trials have found that it reduces mortality and disease progression in older adult patients and in patients who did not receive mechanical ventilation [6] [7] [8] [9] . These promising results, still under evaluation, would indicate that hyperimmune PC could be an alternative treatment used in contexts where additional alternatives are needed. . CC-BY-NC 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted February 19, 2022. ; https://doi.org/10.1101/2022.02. 16.22270690 doi: medRxiv preprint In 2020, Peru's social health security, EsSalud, initiated a randomized, open-label, controlled clinical trial that sought to evaluate the efficacy of PC in the treatment of patients with COVID-19 [10] . EsSalud is part of Peru's decentralized health care system and covers 33% of the Peruvian population, especially the economically active population working in the public or formal private sector, retired pensioners, and their immediate family members [11] . In the absence of effective treatments, EsSalud expressed its intention to evaluate the use of PC to assess the possibility of implementing it according to national and international evidence. For this reason, if hyperimmune PC is shown to be effective for the treatment of COVID-19, one of the challenges faced by the Peruvian social health security is to guarantee the continued supply of PC from voluntary donors, former COVID-19 convalescent patients, in order to meet the demand for it. During the health crisis, the health system's challenges in developing countries are more visible. The precariousness of the health system led to a collapse of services, overcrowding, an increase of the already existing bureaucratic and infrastructure barriers, etc. On the other hand, the fears, insecurities, and uncertainty of the population could hinder the willingness of the population and, therefore, the campaigns not only of convalescent plasma donation but also of blood donation in general [12] . In order to achieve greater citizen participation in this type of campaign and the face of health crises such as the current ones, it is necessary to explore the experiences of donors at the individual level and about the health system so that, from their voices, the main strengths, and weaknesses of the health system can be visualised and discussed. Furthermore, a positive and satisfactory experience of the donation will contribute to an increase in return, dissemination, and awareness of the importance of donation. For this reason, in the context of a clinical trial, the present study aimed to explore the diverse experiences of convalescent plasma donors, which also implies evaluating the role of the donor, of the population, in situations of a global health crisis. Exploring their experiences, . CC-BY-NC 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted February 19, 2022. ; https://doi.org/10.1101/2022.02.16.22270690 doi: medRxiv preprint their expectations, their confrontations with the health system in a Peruvian social security hospital, will give us light to generate recommendations and strategies that bring the population closer to the health system and promote donation campaigns valuing, respecting and knowing the motivations, needs, and expectations of donors. Finally, exploring the narratives of the convalescent plasma donor brings to the forefront those people who faced the disease and the health system. Therefore, now as convalescent plasma donors and with that lived experience, these people can express and share motivations, fears, needs, and expectations that dialogue with the materiality and infrastructure of social health security. Furthermore, collecting their narratives will allow decision-makers to design various intervention strategies and reinforce and improve hospital services. . CC-BY-NC 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) Semi-structured interviews were conducted via telephone calls between February and March 2021. Before starting the data collection, a pilot test was carried out, which consisted of interviewing five people to validate the methodological tool and to define the interaction strategies with the participants in terms of relationship and time. Participants were asked to confirm their participation by reading and signing the virtual signature (recorded verbally). The interviews were conducted individually, via telephone by a specialist in social sciences, showing sensitivity to the subject matter and respecting the customs and beliefs of the population. Each interview lasted approximately 45 minutes and was recorded with the verbal consent of the participants. The thematic axes are summarised in the next table: • Main health problems. • Frequent medical visits/consultations. Motivations for donating • Individual, collective. • Acknowledgments. • Personal insecurities (fear about the . CC-BY-NC 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted February 19, 2022. ; https://doi.org/10.1101/2022.02.16.22270690 doi: medRxiv preprint process on their health, exposure as a patient, etc.). • Insecurities related to the health system and blood donation procedures. • Processes and perceptions from registration to blood collection. • What they expect from the health system and blood donation procedures. • What they expect about the achievements and impact on the community from their participation in blood donation campaigns. The study was approved by the specific research ethics committee for COVID-19 of the Institute for Health Technology Assessment and Research of EsSalud (IETSI -EsSalud), on December 19, 2020. The information reduction process was initiated by transcribing interviews and their subsequent coding according to the proposed thematic axes. The process of organizing and coding the information was carried out in Atlas ti version 9.0. Participants were not invited to contrast the findings of the study. The analysis findings are accompanied by textual quotations from the participants, which will be presented with the initials of fictitious names, respecting the criteria of confidentiality and protection of the research participants. These quotations were selected due to their representativeness and similarity with the majority of the results. . CC-BY-NC 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted February 19, 2022. ; https://doi.org/10.1101/2022.02.16.22270690 doi: medRxiv preprint All the people who wished to participate after the dissemination of the study were interviewed, nine men and two women. The ages of the participants ranged from 23-54 years. Of the total number of participants, one man and one woman were the only ones who had previously donated blood in Perú. All eleven participants had higher technical or university education. The donors were permanent residents of the city of Lima. Of the total number of participants, 10 did not make frequent visits to hospitals or private practices and reported that they were in good health and that COVID-19 was the most worrisome illness experience they had had to date. One man in his 40s was the only one who had had to deal with life-threatening diseases (tuberculosis and hepatitis A) in previous years. According to him, these diseases did not leave any sequelae in his body. it was for acne. But really you could say that it's been more than eight years since I've been to a doctor's office" (JM, male). hospitalised, I have no history. No risk conditions, either. Lately, the only history I would have now, would be that I got infected with COVID, but not after that" (ST, female). . CC-BY-NC 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted February 19, 2022 (DA, male). The two main reasons that drove the intention to donate convalescent plasma were (i) support for research and (ii) support for victims of COVID-19. . CC-BY-NC 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) 1 1 Regarding recognition for their participation as donors, the participants mentioned that they were aware that they would not receive monetary compensation but that, in addition, their motivations were more related to collaboration than to any other type of incentive. However, receiving a diploma of recognition from the institution motivated them; they valued it. They considered that the most important merit of their actions was a social merit that they hope will be highlighted when the benefits for the affected patients are achieved. "Yes, they gave me a diploma of donation or participation in this procedure. I did like it, it motivated me, it always generates an internal joy to have some kind of recognition from someone. Actually, I did not expect recognition, but it was good, I liked it" (JL, man). "It is no merit to donate blood, it is no academic merit, it is no merit of life, maybe it is a social and health merit, for helping others, but no more than that. And that doesn't need papers to be documented" (MR, man). . CC-BY-NC 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The main fears mentioned regarding the convalescent plasma donation process were the possibility of fainting due to the effect of blood collection and is located in overcrowded places that are infectious sources of infection during the procedure. However, the participants stated that they found clean, spacious spaces and were accompanied by the health personnel. The participants mentioned the positive experiences of the donation process: 1. The punctuality of the medical attention 2. The accompaniment of the health personnel 3. The spacious places for the different activities required for the donation procedure On the other hand, the most outstanding negative experiences were the problems in relating with some nurses. Second, the length of time from enrolment to blood donation. It is a process that they considered to belong-approximately one month's duration, which includes registration, testing, and test results. Third, the lack of reserved places for donors. They enter the hospital and wait together with other patients in the general care area until the study's person comes. However, they considered that given their condition as former COVID patients, this is risky because they represent possible spaces for contagiousness. Fourth, admission to the hospital had an initial negative impact on some participants. The security . CC-BY-NC 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted February 19, 2022 "It seemed very slow to me, a very slow process because I thought that you signed up and I knew that they were going to do a previous test to see your level of defence or immunity, but it seemed slow to me, I think that when someone wants to help they want to do it now, so me. Ah, they told me that something had not arrived, some additives that were needed just the level of defenses or antibodies that I had generated, that is why the process was delayed too much, that is why I say that if they are going to do a campaign of this type, the important thing is the time, that they do it quickly so that other people do not get discouraged" (MM, man). . CC-BY-NC 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted February 19, 2022 The donors emphasized that "despite being a public hospital," they generally received good attention and support throughout the donation process, from enrolment to plasma collection. However, among the main expectations and suggested recommendations, they highlighted the need for greater dissemination of blood donation campaigns in general, both internally (hospital) and externally (community). For example, the promotion of the convalescent plasma donation campaign, from the perception of the participants, did not acquire the expected relevance and amplification. In addition, they suggested that information about the donation process should include messages where safety and detailed procedures are included. On the other hand, another expectation and recommendation focused on hospital infrastructures. Friendly spaces that provide confidence to donors. abysmal difference between one place and another. Private clinics, then, definitely the health system has collapsed in the country and I imagine or hope that in the coming years it will be better, if a person is going to make a donation or is going to be part of a process there should be some minimum conditions that fill their eyes so that more people are encouraged, right, a bigger place, a nicer place" (MM, man). Although specifically focused on convalescent plasma donation, the study could also reflect part of the reality in terms of blood donation campaigns and the participation of citizens as potential donors. Unfortunately, Perú is one of the countries with the lowest levels of voluntary blood donation in Latin America, with 13.5% in 2019 [13] . According to the Pan American Health Organization, nine out of ten donations are in the country by replacement, made by people seeking to benefit someone in particular (family member or acquaintance) [13] . Therefore, this donation helps specific recipients, leaving the population with little or no social support networks, in situations of vulnerability and with fewer opportunities for recovery. Reversing these figures is fundamental, and the need is even more alarming in . CC-BY-NC 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted February 19, 2022. ; https://doi.org/10.1101/2022.02.16.22270690 doi: medRxiv preprint cases such as the current global health crisis, where the collapse of health services and the still uncertainty about the development of the pandemic require greater citizen participation and collaboration promote and contribute to research. That said, voluntary blood donation is not only a generous act but also involves altruism, citizenship, and national identity [14] . It should be noted that, given the current global health crisis, donating blood represents a situation of increased risk. In convalescent plasma donors, the problem may be even more complex since they are people who have recently suffered from the disease. Thus, although awareness of the need to overcome the current pandemic may be present in the general population, the suffering and experiences of a patient will not be the same as those of a regular blood donor. The study's findings were that the participants were all highly educated and primarily male (9 donors) versus two females. This was due to the selection criteria of the clinical trial, which excluded all women who had had a previous pregnancy (effective or miscarriage). Therefore, we cannot assess the parity of male/female participation in the study. However, other studies in developing countries show that the sociodemographic profile of donors are predominantly male and concentrated in the age group between 30 and 50 years, middle class, upper-middleclass, educated [15] [16] [17] . Therefore, it would be necessary to investigate the reasons why the participation of women is less representative. Far from assuming that it falls into a reductionist aspect of wills, it would be interesting to examine and discuss those barriers found by this population group for their participation. Authors coincide in having found that the requirements for donation are related to body weight and size, previous pregnancy, and haemoglobin levels. These aspects place women at a disadvantage when participating in blood donation campaigns [18, 19] . In addition, there is a belief that, due to menstruation and anaemia, women are more susceptible to bleeding. This situation negatively affects their experience as donors even when they show greater intention to participate than men [19] . . CC-BY-NC 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted February 19, 2022. ; https://doi.org/10.1101/2022.02. 16.22270690 doi: medRxiv preprint In light of the above, it is essential to consider blood donation as a heterogeneous process that should be built around the donor, considering their sociodemographic variables. Furthermore, recruitment campaigns should include strategies that show effectiveness in reducing adverse reactions and improving the quality of the blood donation experience, which will positively affect the probability of donor return [20, 21] . The participants' educational level may reflect the greater access to information, greater possibilities of transportation, and time to donate [22] . The health crisis caused by the current pandemic impacts people's physical health and has also deprived part of the population of their jobs, forcing economic and family restructuring. Thus, the fact that most donors have higher levels of education and income makes sense. Another critical point to consider in this regard is that donors with higher levels of education, having experienced the disease, may perceive a lower risk of infection and have greater motivation to donate. The primary motivations of convalescent plasma donors were, contributed to local research, confidence, and hope for favourable treatments to combat the pandemic and support other patients. These findings are similar to those of other studies, highlighting altruism as the main reason for voluntary donors [21, 23, 24] . However, it is crucial to discuss whether an altruistic or completely selfless motivation is sustainable. Conjunctural factors, socioeconomic realities, and cultural aspects may converge so that different incentives must support motivations. For example, in some developing countries, incentives may include periodic health check-ups, public recognition, and monetary incentives [15, 24, 25] . The COVID-19 pandemic has brought to the forefront discussions about the social position of the infected person, the effects on their relationship with the community, and the various constraints they face. As confirmed by various research studies, the lack of knowledge and stigma surrounding COVID-19 forces them to hide their symptoms, avoid seeking medical . CC-BY-NC 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted February 19, 2022. ; https://doi.org/10.1101/2022.02.16.22270690 doi: medRxiv preprint attention, and getting tested until they are seriously ill. In addition, they do not cooperate in efforts to investigate contacts [26] [27] [28] . Stigma is largely fuelled by misinformation rampant in social networks and media, potentially affecting intentions to donate convalescent plasma. Studies have also shown that delays in care for COVID-19 are also due to poor skills to recognise severity symptoms in patients, self-medication (ivermectin), and perception of poor medical competence and unsafe and inadequate quality services [29, 30] . The convalescent plasma donors who participated in the study stated that they were not frequent visitors to social security hospitals. However, it is intriguing the ideas of some of them concerning the infrastructures and services offered in the hospital. Prevalent among this population is the expectation that precariousness is synonymous with public health service. This also helps to understand why the possibility of new SARS-CoV-2 infection in the hospital facilities became the main fear among the participants. For this reason, the same participants noted that the attention of health personnel and safety measures were appropriate and suggested greater dissemination of these aspects in donation campaigns. This finding invites interventions by EsSalud to rescue the cleanliness of its facilities for donation campaigns and achieve a positive impact on the participation of the population. Several studies have shown a drop-in blood donation during the current health crisis [31, 32] . In this sense, the present study provides some light on how to increase blood donation in general by promoting and highlighting the safety aspects of hospital institutions. Friendly spaces, safety, security, protection, and more information are necessary components to safeguard patients and blood donors [15, 20, 21] . Convalescent plasma donors, being former COVID-19 patients, are vulnerable physically and, as noted above, probably socially. Social security should continue to work in this effort to guarantee their care, valuing and . CC-BY-NC 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) recognizing, in addition, their civic contribution to improving the health of others and to the relentless struggle to combat the current health crisis. The study was conducted with donors who were able to complete the donation process. Therefore, we did not collect testimonies of those who initiated the enrolment and who, for various reasons, either directly related to the requirements of the study or personal nature, did not complete the procedure. Likewise, health personnel involved in convalescent plasma donation were not interviewed. The experiences of the convalescent plasma donors in the present study were positive, highlighting the punctuality of medical attention, the accompaniment of health personnel throughout the donation process, and the spacious places for the various activities involved in the donation procedure. However, there are still aspects to improve in terms of processes and infrastructure to ensure successful blood donation campaigns in the future. The time from enrolment to convalescent plasma donation, the relationship with some nurses, the lack of dissemination of the convalescent plasma donation campaign, and the lack of waiting spaces reserved exclusively for former COVID patients were the main observations provided by the participants. The two main reasons driving the intention to donate convalescent plasma were: i) support for research and ii) support for COVID-19 victims. The role of citizens in the face of health crises is fundamental. Therefore, working on the sustainability of their participation through a comprehensive look at the motivations and barriers of donors, both at the individual and . CC-BY-NC 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted February 19, 2022. ; https://doi.org/10.1101/2022.02.16.22270690 doi: medRxiv preprint 1 institutional level, should be a continuous work that can guarantee an increase in the population's participation. Perú is one of the countries with the lowest rates of voluntary blood donation. Given the current global health crisis, this scenario could be even more complex given the high risks of contagion in various hospital establishments. For this reason, collecting the narratives of convalescent plasma donors has allowed us to explore their experiences both as former COVID patients and as donors and to provide tools and inputs to ensure the safety and confidence of donors in order to amplify citizen participation safely and responsibly. . 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