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Objective: Blood transfusion is a standard treatment for anemia in both inpatients and outpatients. Nonetheless, few studies on the therapy have examined the patient's perspective. This study therefore sought to identify how well patients understand the role of blood transfusion in their treatment and whether it causes them discomfort.
Methods: All medically stable adults who had received a blood transfusion at an Ohio hospital over a five-week period in 2009 were identified; a convenience sample of 21 of those patients participated in semistructured interviews lasting 15 to 30 minutes. The researchers recorded and transcribed the interviews and performed a thematic analysis.
Results: Four themes emerged: paternalism and decision making, patients' knowledge, blood safety and administration, and the nurse's role. Participants said that because a physician decided the transfusion would take place, they didn't understand that there were other options for treating their anemia; pretransfusion written materials weren't adequate to explain risks and benefits of the procedure; they had concerns about the safety of the blood supply; and they valued nurses' opinions.
Conclusions: These qualitative findings suggest that clinicians may be missing opportunities to improve patients' knowledge of and comfort with blood transfusion and that they can better meet patients' needs before, during, and after the procedure. Further research is warranted.
Keywords: blood transfusion, lived experience, patient education, qualitative research
Blood transfusion is the most frequently performed hospital procedure in the United States; in 2008 it occurred in 10% of all hospital stays.1 Despite the frequency of its use, however, confusion about blood transfusion persists: patients might understand that it can be a lifesaving treatment but have lingering concerns about the safety of blood products. The media, the Internet, friends and family members, and the patient's own history all factor into the confusion. In 2003 Lee and colleagues reported on a study of the differences between physicians' and laypersons' perceptions of the risks involved in blood transfusion and other medical procedures.2 They found that clinicians' concerns revolve around the appropriateness of transfusion as a treatment and its risks, administration, and costs; patients' concerns often center on transmissible disease and comfort.
Because few studies have examined the perspective of the patient who receives this treatment, we sought to describe patients' understanding of the role of the therapy in their care and their comfort with it, in the hope that such information would help clinicians better meet patients' needs.
In June 2009 we conducted a literature search of two large scientific databases, EBSCO and Ovid, using the keywords blood transfusion, lived experience, and qualitative research. We placed no limits on date or place of publication. Our search yielded no U.S. studies on patients' experiences of blood transfusion.
A 1999 Australian study by Fitzgerald and colleagues examined patients' perspectives on informed consent, administration technique, and appropriateness of blood transfusion.3 Study participants said they saw transfusion as necessary and viewed the process as painless and not as stressful as other hospital events, but concerns about transfusion-acquired infection lingered. Another Australian study of transfusion safety collected data from patients in order to make recommendations for clinical practice, including the need for improvements in documenting patients' consent for a transfusion.4 In the 2003 study by Lee and colleagues, laypeople believed that transfusion carries greater risk than physicians did-although, the researchers say, laypeople perceived that both medical "hazards" (such as blood transfusions and using prescription drugs) and nonmedical ones (such as nuclear reactors and bicycles) carried greater risks.2 Clinicians could improve decision making, informed consent, and education, the researchers write, by improving communication with patients. Additionally, researchers in the United Kingdom state that nurses can help to make transfusion procedures safer by developing policies and auditable performance measures and participating in training and education.5
One of the few studies we found on the patient's experience in any aspect of blood transfusion was a Canadian study that examined the experience of blood donors deferred from donating after testing positive for a transmissible disease.6 The study acknowledges the need for more education of physicians and improvements in the notification process.
A 2003 French qualitative study looked at the decision-making process of patients with hemophilia who received blood transfusions and their physicians.7 The research followed a French scandal in the 1990s involving the transfusion of blood known to be contaminated with HIV in hemophilia patients and found that a more transparent and less paternalistic system resulted from the scandal, with patients sharing in the decision making with physicians and other providers.
We decided to conduct a qualitative study that would examine the experience of patients receiving blood transfusions-in particular, how they view decision making, consent, the information clinicians provide, and the administration of the blood product. Fitzgerald and colleagues' 1999 study,3 which found that clinicians aren't communicating adequately with patients about blood transfusion and that patients aren't requesting information from their providers, provided a model.
How do patients perceive blood transfusion? At Fairview Hospital in Cleveland, Ohio, that was the question we set out to answer. Our study would have a dual focus:
* to develop a more robust understanding of patients' experience of preparing for and receiving a blood transfusion
* to communicate this information to physicians, nurses, and other providers in order to enhance their understanding of patients' experiences
We chose a qualitative, descriptive design,8 which allows for the description, rather than the interpretation, of subjects' experience. Strauss and Corbin have written that qualitative methods are appropriate when findings cannot be arrived at through statistical methods.9 Parse's theory of human becoming posits that nurses guide patients in health care decision making by focusing on the meaning patients find in experience.10 Research in Parse's method focuses on individual experience and relies on an inductive, descriptive process. Fitzpatrick and Wallace note that descriptive techniques are appropriate when little research has been done in the area of inquiry.11 We designed methods with the rigor necessary to make any findings obtained valuable to the practicing nurse.
Setting and sampling. The Cleveland Clinic Foundation's institutional review board approved the study. The hospital's blood bank provided us a daily report of all inpatients who received a transfusion of packed red blood cells during a five-week period in 2009. We then applied inclusion criteria: only medically stable adults, ages 18 to 90 years, who voluntarily consented to a taped interview of 15 to 30 minutes in length would be eligible. We excluded patients in the ICU, whom we assumed would be too ill to interview. We selected patients who met these criteria and then determined the medical stability of each by speaking to the patient's nurse; patients had to be alert and oriented, with stable vital signs and without acute respiratory or cardiac difficulty or uncontrolled pain. About 24 hours after transfusion, we visited patients in their hospital rooms to ask them about participating. We informed them of the study's purpose and asked whether they would consent to a brief interview. We told them that the benefits of participation included potential improvements in patient education regarding transfusion and that risks included slight chance of a breech in patient confidentiality (although we assured them that names of participants would be stored only on password-protected computers in a locked office). We asked each participant to sign a consent form before we reviewed the chart or began the interview. We reviewed each participant's medical record, recorded all diagnoses, and checked that informed consent for the transfusion had been obtained. We didn't attempt to control for sampling bias.
Data collection and analysis. To capture subjects' experience of transfusion, we decided on an open-ended interview technique (for example, "When were you first notified of the need of a blood transfusion?"). Gillham describes the interview techniques that allow subjects to express their perceptions without being led by the interviewer.12 We used a semistructured format to ensure uniformity of questions asked while allowing the interviewees to express themselves. Among other questions, we asked when they knew they were receiving a transfusion and who informed them (see The Semistructured Interview for a full list).
Before beginning interviews, we discussed the potential for researcher bias and used the bracketing method of putting bias aside upon recognition.13 For example, one of us (DT) recognized her belief that blood transfusion is overused; therefore, she didn't conduct the interviews so that she wouldn't steer the patients' responses. One of us (KWA) conducted interviews, and a research assistant (Charlie Hayes) observed, took notes on, and recorded them.
Demographic data such as age, sex, diagnosis, reason for transfusion, and evidence of informed consent were collected. (See Table 1 for demographics of the study sample and Table 2 for the reasons for blood transfusion.) Twenty-one patients were interviewed, after which point data saturation was evident. Study data were cataloged using the numbers on the blood-product vials rather than patients' names. The research assistant transcribed the tapes verbatim, placing data into spreadsheets, and the principal investigator (DT) coded the transcribed interviews line by line, clustering the data into themes8, 14 without the input of the interviewer. We then met to discuss the themes identified. We employed investigator triangulation by inviting the research assistant to weigh in on the themes as well. We verified the data by reading over the transcriptions while listening to the audiotapes.
Trustworthiness. Lincoln and Guba15 identify four criteria for trustworthiness of research data: credibility, dependability, confirmability, and transferability. To ensure confirmability, the research assistant transcribed recordings verbatim; he then reviewed the transcripts with the two of us. We demonstrated credibility by using the actual words of the participants; dependability, by interviewing patients of various ages, in different areas of the hospital, from different cultural backgrounds, and with different reasons for receiving a transfusion; transferability, by interviewing subjects until data saturation was achieved, making it more likely that findings would be similar in other inpatient settings. We also used a different researcher for each stage of data entry, verification, and theme extraction in order to further ensure the trustworthiness of the data and the reflexivity of the researchers.
After the data were entered, verified, cleaned, and coded, five discrete themes emerged: paternalism, decision making, patients' knowledge, blood safety and administration, and the nurse's role. We collapsed the first two themes identified (paternalism and decision making) into one, endeavoring not to cut anything for the sake of convenience, which left a total of four themes for analysis.
Paternalism and decision making. Paternalism in health care involves practices in which the physician makes decisions based on what she or he thinks is best for the patient.16 Throughout our interviews, patients said that physicians made the decision to transfuse for them and that the patients rarely questioned the decision. Many said that physicians were "too busy"; others said that they themselves were too "overwhelmed" by illness to pursue discussing risks and benefits of transfusion with a physician. That isn't to say, however, that patients didn't trust their physicians to make the decision. Participants' comments reflect both the physician's paternalism and the patient's trust in the decision (see Table 3 for more patient comments). Patients also said that they asked a nurse for clarification, information, and advice. Several patients sought a nurse's opinion to verify the need for the transfusion. One patient said, "I asked the nurse why I was getting blood and if I really needed it. She said my blood counts were very low and that was why I was so tired. So this would help me feel better."
Alternatives to blood transfusion are addressed on the transfusion-consent form, but when asked whether alternatives were made available, most participants said no. "They just told me that's what I was gonna get," one participant said. Only one patient asked about alternatives and was told that medications, unlike a transfusion, "would take, like, three months."
Patients' knowledge. It's common hospital practice before a transfusion for the patient to be given written information on risks and benefits, potential reactions, and the administration process. Our participants said that before the transfusion they either felt too sick to read it or didn't receive it (see Table 3). One said, "The brochure was great information-after!" implying that the patient felt well enough only after the transfusion to read it.
Some expressed shock that they'd actually needed a blood transfusion. One said, "It came out of the blue." Another patient, who'd signed a consent form before surgery in case a transfusion would be needed, had thought it was a "remote possibility." Half said that a physician informed them of the transfusion; the other half said that it was a nurse. Two patients said they were told of the need for a transfusion by a nurse who walked into the room with a bag of blood in one hand and a consent form in the other.
Although inadequate communication about the patient's clinical status and transfusion procedures was evident, nurses were the primary source of information about treatment plans and the transfusion process. Patients said that nurses told them that "the blood is screened and safe," what reaction symptoms to watch for, and what the administration procedures were.
Blood safety and administration. Our participants expressed concerns about blood safety, disease transmission, and the screening and testing of the blood supply (see Table 3). One patient said, "I didn't want someone else's blood in my body, but I knew mine was weak, so whatever it was and wherever it came from it had to be better than my own." Participants said that the checking of blood at the bedside reassured them, as did the nurse's monitoring 15 minutes into the transfusion.
As to the transfusion itself, some patients were not bothered by it and were in fact interested in watching it. Two were particularly averse to it; one woman looked away for the entire four-hour procedure. One patient said, "It was creepy; it was weird. I kept looking up there, and I got to the point where I didn't even want to look at it." Every patient expressed surprise at how long it took, using adjectives like "slow," "tedious," and "lengthy."
The nurse's role. Nurses were the ones to notify patients that they would be receiving a transfusion about half of the time and were the primary source of information about it. Nurses were also noted to have encouraged the patients to receive the blood by telling patients they would "feel better" or it would "be a good thing" (see Table 3). One patient said, "She was right. I felt so much better and had so much energy!" Patients said that nurses gave them accurate information about the procedure-that it wouldn't be painful, for example, and all patients agreed that it wasn't.
All patients mentioned that a nurse reviewed possible transfusion reactions and symptoms to look for. None of the participants had any reactions, and several said the process was "easy" and gave them "no problems." Patients reported that nurses were attentive and supportive during the procedure. Frequent checking and asking "how I was feeling" were reported.
Implications for practice. Our participants said that nurses more than other clinicians advised patients on transfusion. For example, one nurse gave a patient the option of receiving a second unit of packed red blood cells after the first unit had been infused. Whether the nurse used this as a technique to coax the patient into getting the transfusion is unclear, but the patient appreciated being invited into the decision making.
Informed consent requires discussion with patients about risks and benefits of and alternatives to a procedure.17 In our organization, it's customary for the nurse to present the transfusion consent form without knowing whether the patient participated in the decision or had an opportunity to ask questions of the physician. Therefore, the nurse often assumes the role of educator and advisor.
Blood-management specialists, who have at the core of their philosophy a goal of reducing or eliminating allogeneic blood transfusion, say that clinicians should, in considering the appropriateness of transfusion, determine whether the patient has anemia tolerance (signs of a low hemoglobin count such as low blood pressure, pallor, or dyspnea) and whether medication instead of transfusion might be used to stimulate the production of red blood cells.18 Our findings suggest that such options weren't discussed with or offered to patients, perhaps because nurses and physicians didn't adequately understand these methods or because hospital procedures didn't encourage such discussion. Education for nurses about alternatives to blood transfusion would help them to offer options to patients who might be reluctant to receive a transfusion. It was evident in the interviews that the nurses' opinions mattered, despite the fact that nurses didn't present to patients any available alternatives. Our view is that nurses deferred to physicians; for instance, if physicians had routinely ordered iron infusions to treat anemia instead of blood transfusions, perhaps nurses would have explained that option to patients.
Hodgkinson and colleagues looked at audits of the technical aspects of blood administration but found that it's also important to audit patients' understanding of the procedure.4 We took the opportunity at the end of each interview to talk with patients who still had questions about the transfusion. Many voiced concerns about the safety of the blood supply, as other researchers have also found.19 After receiving additional information during the interview, several patients said they felt better about having had a transfusion.
The public's concern about disease transmission, rather than the more likely complications such as nosocomial infection, has led to recommendations of a more conservative approach to transfusion in critically ill patients.20 Our findings serve as reminders to nurses that they should discuss the potential for disease transmission with patients, even though clinicians themselves may not view it as a serious threat. Goodnough and colleagues explored issues related to the safety of the blood supply and emphasized the importance of developing alternatives to transfusion such as recombinant human erythropoietin, as well as more comprehensive guidelines on the management of anemia.21 Consequently, practitioners should be meticulous about ensuring the appropriate use of blood products, while using alternatives whenever possible. For example, one systematic review evaluated studies that examined the use of "threshold" hemoglobin levels in decisions about using transfusion to treat anemia; the researchers found that "blood transfusion is probably not essential" in most patients until the hemoglobin level has dropped below 7 g/dL.22
Following hospital administration procedures not only provides safe care, but it also helps to meet patients' psychological needs. In our study, patients said that nurses' adherence to procedures reassured them during the transfusion. Patients perceived safety checks at the bedside as an indication that other checks on the blood had been conducted and that the process must be safe.
The importance of nursing cannot be underestimated. Fitzgerald's 1999 study identified physicians as the initial source of information on transfusion and that nurses reiterated what the physician had said about risk, "rather than inviting the person to talk about any concerns."3 In our study, the physician made the decision to transfuse, but the nurse provided the education, safety monitoring, and support. Hospital nurses don't practice as diagnosticians, a responsibility they defer to physicians, who may not be as available to talk with patients as needed. Opportunities exist to begin the patient education process before the need for transfusion arises. For example, at the time blood is tested for crossmatching, nurses can give patients information on blood transfusion so that they can participate in decisions regarding their care. The nurse must understand the purpose of the transfusion as well as risks and possible reactions and be able to reassure the patient regarding safety.
Implications for research. Surveying nurses to identify their needs for further education about blood transfusion could help administrators and educators in planning programs designed to improve nurses' knowledge and competency. Areas for further research include the patient's awareness of being typed for blood transfusion and the impact of the reason for a transfusion on the patient's experience. Additional research expanding on the international studies on shared decision making and cultural attitudes could provide more insight into the patient experience.
Duplication of this study with other routine procedures such as those that occur in radiology or at an outpatient surgery center would provide a cross-section of how clinicians assess patients' knowledge of and comfort with a procedure, as well as the nurse's contribution to their experience.
Limitations. The small convenience sample studied consisted mostly of older white women living in the Midwest. A sample with greater diversity in race, geography, age, and sex might elicit additional themes. Also, we excluded critically ill patients, who are more likely than other patients to be anemic and therefore possibly require a blood transfusion or an alternative.20 Therefore, our findings are not readily generalizable to all patients. Finally, this study was confined to a single facility, and our findings reflect its particular practices, which might not represent other hospitals' procedures.
In conclusion, our interviews demonstrated that patients may need more information before, during, and after a blood transfusion than they're getting. Handing out a brochure is insufficient; indeed, the interaction with practitioners, especially nurses, was most helpful in reassuring and educating patients. We recommend that nurses examine current practices and improve procedures so that patients receiving blood transfusions get more support, as well as more information on the need for transfusions and on alternatives that might be available.
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