The impact of patient-physician alliance on trust following an adverse event

The impact of patient-physician alliance on trust following an adverse event

Patient Education and Counseling 102 (2019) 1342–1349 Contents lists available at ScienceDirect Patient Education and Counseling journal homepage: w...

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Patient Education and Counseling 102 (2019) 1342–1349

Contents lists available at ScienceDirect

Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou

The impact of patient-physician alliance on trust following an adverse event Katherine Shoemaker* , Carly Parnitzke Smith Pennsylvania State University, College of Medicine, Hershey, PA, USA

A R T I C L E I N F O

A B S T R A C T

Article history: Received 28 June 2018 Received in revised form 7 February 2019 Accepted 9 February 2019

Objective: Adverse events in maternity care have a negative impact on the patient-physician relationship. This study assesses the effects of healthcare institutions, communication, and patient involvement on patient trust following adverse events. Methods: Surveys were distributed online to women across the US who had given birth. Women were asked to recount their experiences during their most recent pregnancy including unexpected procedures, adverse events, support from healthcare institutions, and perceived betrayals by healthcare institutions. Results: Adverse events were negatively correlated with patient trust in their physician. This study’s results illustrated that patient involvement and institutional betrayal mediated patient trust following adverse events. Patients who were more involved in decision-making with their physician were found to have more trust in them following adverse events than those who did not. Conclusions: Patient-physician trust is negatively affected by adverse events, but patient-physician alliance in decision-making can decrease this impact. Therefore, physicians can work proactively to lessen the detrimental effects of adverse events on patient trust, but the patient-physician relationship is still impacted by healthcare institutions. Practice implications: This study demonstrates the benefits of encouraging patient alliance with their physician and supports a need for education on the use of these strategies in healthcare. © 2019 Elsevier B.V. All rights reserved.

Keywords: Shared decision-making Patient communication Patient trust Women's health Obstetrics

1. Introduction Patient involvement in healthcare decision-making through alliance with their physician, has become increasingly emphasized in clinical practice. Physicians can facilitate patient involvement in many ways, from giving patients educational materials, to offering the opportunity for shared decision-making, to creating a safe environment for patients to ask questions. Increased patient control over their healthcare has been an objective for healthcare quality improvement from the World Health Organization (WHO), the Institute of Medicine, and the American College of Ostetritcians and Gynecologists (ACOG) among others [1–3]. This can be accomplished through patient education, where patients are provided with information about their medications, treatment options, and medical conditons that is tailored to their education level, as well as physician encouragement to ask questions [1,2]. In general, these practices have been shown to be beneficial for patient safety and quality of healthcare, through improvements in

* Corresponding author at: Box 598, 500 University Drive, Hershey, PA, 17033, USA. E-mail address: [email protected] (K. Shoemaker). https://doi.org/10.1016/j.pec.2019.02.015 0738-3991/© 2019 Elsevier B.V. All rights reserved.

patient adherence [4] and in patients feeling satisfied with their care following treatment [5,6]. Patient involvement in their maternity care is recommended by the Amercian College of Obstetricians and Gynecologists to improve outcomes in childbirth and prenatal care [7]. Studies have shown that major risk factors for dissatisfaction with maternity care were not getting adequate help from caregivers, feeling uninvolved in decisions regarding healthcare, and not recieving adequate information [8]. One possible explanation for this finding is that women want to be involved with their health care, and want to know the consequences of medications and procedures [9]. Further, improved patient-physician communication has been recommened by both the Joint Commission and ACOG as a way of lowering adverse events in pregnancy and delievery [7,10]. One obstacle to patient-physician alliance in maternity care is the potential for breakdowns in doctor-patient communication. This is a documented risk factor for incidents that result in patient harm, also known as adverse events [11]. To avoid communication breakdowns, physicians must tailor their communication to fit their patient’s needs. For example, although most women have been shown to want a more active role in their healthcare [9], firsttime mothers are new to healthcare experiences related to

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patient-physician relationship, especially with the occurance of an adverse event. Although countless national and hostpital-based programs are in place to avoid their occurrence, adverse events are a reality of any healthcare system. According to a 2010 report from the US Department of Health and Human Services, 13.5% of hospitalized Medicare Beneficiaries in the United States experienced some kind of preventable adverse event, with 10% of these errors contributing to the death of the patient [18]. The same factors proposed to cause adverse events can be reconsidered as barriers to patients building alliance or trust between healthcare providers and patients. For example, lack of communication between care teams and patients, lack of continuity of care, long time spans between visits, and lack of access have all been cited as possible contributors to adverse events in primary care and pose barriers to a positive doctorpatient relationship [19,11]. Further complicating doctor-patient collaboration is the discrepancy between what patients and doctors determine are adverse events. In a survey of doctors and their patients, the patients included in their definition of adverse events not only errors such as misdiagnoses or mistakes in treatment, but also being treated rudely by a physician, long waiting times, or communication breakdowns [11,20]. In contrast, when physicians were presented with patients’ definitions of what constituted an adverse event, they tended to be upset and frustrated that the latter circumstances were considered adverse events by patients and instead considered them “minor” errors rather than situations that resulted in true harm to the patient [20]. These discrepancies have the potential to cause a stumbling block in the patient-doctor relationship as doctors may be unaware when a patient feels they have experienced an adverse event (Tables 1–3). Following a perceived adverse event, patient emotions can run high, so the physician’s ability to address the situation properly is important. Again, what constitutes “properly” differs between patients and physicians. In a study of community physicians conducted by Washington University in St. Louis, the overwhelming majority of patients said they would prefer to be told about an adverse event by their physician rather than kept in the dark [20]. However, healthcare providers report that they worry this disclosure may ruin patient trust in their abilities [5]. The way in which these errors are disclosed can have a strong impact on how patients feel following an adverse event. Patients may feel anxious, sad, or depressed following the disclosure of an adverse event and fearful that another may occur [20]. Additionally, patients have been found to be most upset by errors that they thought were attributed to the carelessness of the physician [20]. In the same study, patients reported they would be less upset if their physician apologized and disclosed the error with honesty and compassion [20]. Although physician error can cause the patient emotional distress, physicians can still work to avoid a

pregnancy, delivery, and post-natal care (hereafter referred to as “maternity care”) and may not feel as comfortable participating in making decisions with their healthcare provider [12,13]. Vulnerable populations, including Medicaid beneficiaries, face additional obstacles in being involved with their healthcare, as many have been found to have low health literacy, or lack the ability to understand or obtain health information in order to make appropriate healthcare decisions [14,15]. In addition, many women may lack important knowledge about maternity care. In a study conducted in 2009, it was found that only 25.2% of postpartum women knew that 39–40 weeks was a full-term pregnancy while the mean perceived term was 37.7 weeks [16]. With the establishment of a positive doctor-patient relationship, physicians can better understand their patient’s health literacy and tailor their explanations to their patients. Another complication concerning doctor-patient communication, is that some patients do not feel comfortable speaking up, as they believe their questions or involvement may seem like they are over-scrutinizing their physician. These concerns are not unfounded, as many healthcare professionals also have expressed concern that patients who constantly ask questions about their treatment are expressing doubts about their abilities [5]. Improved communication between a woman and her physician could help alleviate many of these difficulties in patient involvement. Despite the obstacles facing communication between doctors and their patients, women seeking maternity care have been shown to want to be involved with their treatment, as stated above. In a survey of postpartum women, it was found that almost every woman wished to be fully informed about all or most of the complications of procedures that they were to undergo during their pregnancy and delivery [9]. One way of going about successful patient-physician communication surrounding maternity care the establishment of an ongoing, trusting relationship between physicians and patients, which can allow patients to proactively discuss with their physician what they would want to do in the event of an urgent situation during their pregnancy down the road [6]. Trust in one’s physician, regardless of patient involvement, has been shown to be of great importance in patient care and outcomes [17,13]. Although trust is desired in patient care, it can be difficult to define. This is due, in part, to physicians having multiple responsibilities in patient care ranging from technical to interpersonal. For a trusting patient-physician relationship, the patient must have confidence in their physician’s skills and knowledge as well as belief that their physician will treat them with respect and honesty [13]. Using standardized physician trust scales, studies have shown that trust between a doctor and patient can hold benefits for treatment including increased drug regimen adherence and an increased commitment to care on the part of the patient [4,17]. However, trust can easily be lost in the

Table 1 Effect of SMM/MEACULPA on patient trust in their physician mediated by institutional betrayal. Outcome: M (IBQ-H) Predictor

Coeff.

SE

p

LLCI

ULCI

Constant MEACULPA/SMM

0.232 0.349

0.0943 0.037

0.0144 <.0001

0.0465 0.2761

0.4176 0.4219

a1

Outcome: Y (Trust in Phys. Composite) Predictor Constant MEACULPA/SMM IBQ-H

c' b1

Coeff.

SE

p

LLCI

ULCI

4.0527 0.0563 0.1889

0.0531 0.0234 0.0318

<.0001 0.0169 <.0001

3.9483 0.1024 0.2514

4.1572 0.0102 0.1265

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Table 2 Effect of SMM / MEACULPA on patient trust in their physician mediated by patient alliance. Outcome: M (Alliance) Predictor

Coeff.

SE

p

LLCI

ULCI

Constant MEACULPA/SMM

4.0039 0.0829

0.0497 0.0195

<.0001 <.0001

3.9061 0.1214

4.1017 0.0445

a1

Outcome: Y (Trust in Phys. Composite) Predictor

Coeff.

SE

p

LLCI

ULCI

Constant MEACULPA/SMM Alliance

0.6832 0.0534 0.8306

0.1739 0.15 0.0424

0.0001 0.0004 <.0001

0.3411 0.0828 0.7471

1.0254 0.0239 0.9141

c' b1

Table 3 Effect of SMM / MEACULPA on patient trust in their physician mediated by institutional betrayal and controlling for previous children. Outcome: M1 (IBQ-H) Predictor

Coeff.

SE

p

LLCI

ULCI

Constant MEACULPA/SMM Previous Childbirth MEACULPA/SMM

0.232 0.349 0.3379

0.0943 0.037 0.1673

0.0144 < .0001 0.0443

0.0465 0.2761 0.6672

0.4176 0.4219 0.0087

a1

Outcome: M2 (Alliance) Predictor

Coeff.

SE

p

LLCI

ULCI

Constant MEACULPA/SMM** IBQ-H Previous Childbirth MEACULPA/SMM

4.0428 0.0245 0.1674 0.0849

0.0477 0.021 0.0285 0.0847

<.0001 0.2452 <.0001 0.3172

3.9489 0.0659 0.2235 0.2517

4.1366 0.0169 0.1112 0.0819

a2 d21

Outcome: Y (Trust) Predictor

Coeff.

SE

p

LLCI

ULCI

Constant MEACULPA/SMM IBQ-H Alliance Previous Childbirth MEACULPA/SMM

0.83 0.0368 0.0555 0.7972 0.0326

0.1833 0.0164 0.0234 0.0444 0.0658

<.0001 0.0259 0.0184 <.0001 0.6201

0.4692 0.0691 0.1016 0.7098 0.0968

1.1908 0.0045 0.0094 0.8846 0.1621

c' b1 b2

Outcome: Indirect effects on Y (Trust) Path MEACULPA-> Trust MEACULPA/SMM->IBQ-H -> Trust MEACULPA/SMM->IBQ-H -> Alliance -> Trust MEACULPA/SMM -> Alliance -> Trust

Coeff. 0.0368 0.0194 0.0466 0.0195

complete breakdown of patient trust through proper disclosure of the event. On an organizational level, adverse events can also erode patient trust via the occurrence of institutional betrayal – the failure of institutions to meet patient expectations in a way they perceive to be harmful [21]. Every day, patients put trust in organizations when they seek support or services. Health care facilities are large institutions that are tasked with protecting the trust of patients; they can be a source of institutional betrayal when they fail to take care of their patients or address mistakes when they are made. Institutional betrayal is common in healthcare – a recent study found that two-thirds of respondents had experienced betrayal in healthcare systems – and that these experiences negatively impact trust in these organizations [22]. Institutional betrayal is important to consider in any discussion of patient-doctor trust, as this relationship occurs within an institution and may be supported or damaged by institutional effects. Further, institutional effects could play a role in what patients and physicians consider to be adverse events, as the institutional response, rather than the initial event, may be responsible for patient harm.

Boot SE

Boot LLCI

0.0164 0.0135 0.0248 0.0244

0.0691 0.0612 0.1103 0.0866

Boot ULCI 0.0045 0.0024 0.0166 0.0064

Patient-physician alliance in maternity care has the potential to show better treatment outcomes, yet it must also be accompanied by patient trust in her physician to be effective. Together, these aspects of patient care can have a large impact on how patients interact with their physician, including during the aftermath of an adverse event and institutional betrayal. What is not yet known is the degree to which patient involvement may be protective against the impact of adverse events on patients’ trust in their physician. The purpose of this study is to determine how patient involvement in their maternity care impacts trust in their physician following an adverse event and institutional betrayal. We hypothesize that: following adverse events related to their maternity care, 1a) women who are more involved in their care (i.e., have higher patient-physician alliance) will report higher trust in their physician compared to women who are less involved in their care; 1b) women who experience institutional betrayal will report lower trust in their physician; 1c) and examined the combined effects of both patient-physician alliance and institutional betrayal on the relationship between MEACULA/SMM and patient trust in her physician; and 2) that this relationship will be attenuated for women during their first pregnancy and delivery.

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2. Methods 2.1. Data collection In October of 2017, the questionnaire for this study was posted online through Amazon Mechanical Turk as a HIT (Human Intelligence Task) that would take less than 15 min to complete. The survey was available to women over 18, living in the United States, who had given birth to at least one child. The survey was open for four days, titled “Healthcare Survey,” and was advertised with the description, “Complete a survey about healthcare experiences during pregnancy and childbirth.” Participants were compensated $5 if they completed at least 80% of the survey questions. This study was approved by the Pennsylvania State University’s Institutional Review Board (IRB Protocol Number: STUDY00007334). Participants agreed to participate in the survey and the terms of reimbursement by clicking “I have read and understand this consent form” and “I agree to participate.” A total of 314 women completed the survey. Our power analyses indicated that for testing mediational models with up to three predictors with small to medium effect sizes (i.e., f2 = .10), a power level of 0.90, and an alpha = .05, a sample size of 145 would be required, indicating this study was adequately powered. The population of women who participated were 77.4% Caucasian, 10.2% Black or African American, 2.5% Hispanic, 3.5% Asian or Pacific Islander, 0.6% Native American or Aboriginal, and 5.7% multiracial. These demographics were all within 5% of the 2016 U.S. census data with the exception being Hispanic, making up 17.8% of the population in the US census [23]. The median age of the participants was 35–39 with 95.5% of the respondents being under the age of 60. The population was 9.9% non-Heterosexual. The highest level of education that the sample population received was 0.6% Junior High or Earlier, 32.2% High School, 22.3% Associate’s level training, 37.6% Bachelor’s level education, and 7.3% Graduate level training. Although this survey was open to women who had given birth to multiple children, participants were instructed to consider only their most recent childbirth in their answers. Of the women that responded 41.7% reported being first-time mothers with the median year of childbirth being 2011. 2.2. Measures This study was comprised of four surveys, references for the four surveys report validity evidence for each. The questions asked in each survey are included in Appendix A. The questionnaire assessed patient trust using five items from the Trust in Physicians and Medical Institutions Scale [24]. This survey contains statements (e.g., I completely trust my doctor’s decisions about which medical treatments are best for me) about patient trust in their physician, which participants used to rate their agreement or disagreement with using a five-point scale (1 = Strongly Disagree, 5 = Strongly Agree). Responses are averaged to compute an overall measure of patient trust (alpha = .92). Patient level of collaboration was recorded using the Kim Alliance Scale [25]. This survey contained statements about the patient-physician relationship (e.g., I feel my provider gives me enough information) meant to measure communication, collaboration, integration, and level of empowerment between patient and physician. Participants rated the frequency of participation in these dimensions of patient involvement on a four-point scale (1= Never, 4 = Always). Responses were averaged to compute an overall measure of patient involvement with their healthcare (alpha = .95). Instances of adverse events were recorded using the Negative Medical Experiences, Adverse Consequences, and Unexpected or Lasting Pain Assessment (MEACULPA) [22], modified to include pregnancy and delivery experiences. This is a forty-item checklist

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that included the most common adverse events that happen during utilization of the health care system (e.g., I was given an incorrect diagnosis), diagnoses that may be associated with pregnancy (e.g., acute renal failure), and intensive procedures associated with pregnancy (e.g., blood transfusion). Women were asked to indicate whether they experienced any of these complications during their maternity care. These responses were recorded to determine a measure of adverse events experienced by patients during their maternity care. Instances of institutional betrayal and institutional support connected to adverse medical experiences were measured using the Institutional Betrayal Questionnaire- Healthcare [22]. This checklist was shown to women who had endorsed any items on the MEACULPA and the instructions asked them describe the institutional environment that accompanied their adverse medical experience (e.g., An institution played a role by . . . Covering up adverse medical events). Patients who had experienced any of these situations were given space to expand upon these experiences in a free response section. 2.3. Data analysis Data collected from the survey responses was analyzed with Statistical Package for the Social Sciences (SPSS) Version 25. Because our hypotheses required testing mediational models, we first established zero-order correlations between predictors (adverse medical experiences during pregnancy and delivery) and mediators (patient-physician alliance and institutional betrayal) and outcomes (trust in one’s physician). Our first hypothesis, that following adverse events related to their maternity care, 1a) women who are more involved in their care will report higher trust in their physician compared to women who are less involved in their care; and 1b) women who experience institutional betrayal will report lower trust in their physician was tested via PROCESS software within SPSS. Specifically, we tested three models: the first corresponded to hypothesis 1a) the effect of patient-physician alliance on the relationship between MEACULPA/SMM and patient trust in her physician. The second model corresponded to hypothesis 1b) the effect of institutional betrayal on the relationship between MEACULPA/SMM and patient trust in her physician. A third mediational model corresponded with hypothesis 1c) and examined the combined effects of both patientphysician alliance and institutional betrayal on the relationship between MEACULPA/SMM and patient trust in her physician. Finally, we tested a model separately for women who had other children in order to test hypothesis 2) that the impact of patientphysician alliance and institutional betrayal relationship between MEACULPA/SMM and patient trust in her physician will be attenuated for women during their first pregnancy and delivery and as such, women who already have children will be more impacted by patient-physician alliance and institutional betrayal. The PROCESS software used bootstrapping to test whether the relationships between variables were non-zero and calculate confidence intervals (specifically looking for intervals that do not contain zero). The regression coefficients (Coeff.), standard error (SE), p- value, and upper and lower limit confidence intervals (LLCI, ULCI) were calculated by the software to determine these relationships. 3. Results 3.1. Descriptive statistics Out of the 314 participants in the study, 48.4% reported having experienced an adverse event, unexpected diagnosis, or unexpected medical procedure. Of these respondents, 46.7% reported having

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experienced institutional betrayal (IBQ-H) and 50.0% reported having experienced institutional support (these events are not mutually exclusive). The respondents reported an average patient alliance score of 3.90 (SD  0.782) out of a maximum of 5 on the Kim Alliance Scale. They also reported an average trust in their physician of 3.86 (SD  0.891) out of a maximum of 5 on the Wake Forest Trust in Physician Scale. These two factors, trust in physician and patient alliance, were found to have a positive correlation (r = 0.761, p < 0.001). 3.2. Correlations

Fig. 2. Effect of SMM/MEACULPA on patient trust in their physician mediated by patient alliance.

Patient experiences of adverse events, unexpected diagnoses, and unexpected procedures (MEACULPA and SMM) were found to be negatively correlated with patient trust in their physician (r = 0.305, p < 0.001) and patient alliance with their physician (r = 0.236, p < 0.001). This relationship was more apparent when only considering the occurrence of adverse events (MEACULPA) and the impact on patient trust (r = 0.401, p < 0.001) and patient alliance (r = 0.305, p < 0.001). Patient alliance with their physician was found to be negatively correlated with institutional betrayal (r = 0.384, p < 0.001). Patient trust was also found to be negatively correlated with institutional betrayal (r = 0.414, p < 0.001). 3.3. Mediational models A mediation analysis showed that the effect of MEACULPA and SMM on patients’ trust in their physician were mediated by institutional betrayal (c’ = 0.0563, p < 0.0169; Fig. 1). Patients’ alliance with their physician also served as a mediator of the impact that MEACULPA and SMM have on patients’ trust in their physician (c’ = 0.0534, p = 0.0004; Fig. 2). Using a multiple mediation analysis, it was shown that, together, institutional betrayal and patient-physician alliance mediated the effect that MEACULPA and SMM have on patients’ trust in their physician (c’= 0.0368, p = 0.0259). However, even with this multiple mediation accounted for, both predictors continued to be unique mediators. Institutional betrayal alone was found to be a mediator of patients’ trust in their physician (b1 = 0.0555, p = 0.0184) and patients’ alliance with their physician was a stronger unique mediator of trust in the physician (b2 = 0.7972, p < 0.0001; Fig. 3), suggesting a potential suppressor effect of institutional betrayal (i.e., controlling for the effect of institutional betrayal in this model actually allows for a stronger effect of alliance to be observed). 3.4. Impact of previous childbirth A mediation analysis was completed only including data from women who had given birth previously. It was determined that women who had given birth previously were more likely to

Fig. 1. Effect of SMM/MEACULPA on patient trust in their physician mediated by institutional betrayal.

Fig. 3. Effect of SMM/MEACULPA on patient trust in their physician mediated by institutional betrayal and patient alliance. ** P > .05.

experience institutional betrayal (a1 = 0.3379, p = 0.0443). No other significant differences were found between women who had given birth previously and first-time mothers concerning their alliance with their physician (b1 = 0.0849, p = 0.3172), and trust in their physician (c1 = 0.0326, p = 0.6201). 4. Discussion and conclusion 4.1. Discussion This study examined new predictors of a woman’s trust in her physician in the context of unexpected, negative experiences during pregnancy and delivery. Specifically, we looked at the impact of patient-physician alliance and institutional betrayal on patients’ trust in their physicians following adverse events (See Fig. 3). Although alliance and trust are familiar variables in the context of adverse medical events [4,24], institutional betrayal is a new concept in medical research [22]. Broadly speaking, incorporating a measure of institutional betrayal allows us to operationalize the types of “systems issues” that are perceived by patients to adversely impact their healthcare experiences [19]. Up until this point, the discussion of adverse experiences and trust in healthcare settings has prioritized “individual” explanations for ruptures in patients’ trust – medically complex patients, physicians’ communication patterns, or even prior experiences in healthcare (e.g. [5,7,13]). What this study provides is a means to expand that discussion to include the system in which both the patient and physicians are actors. The current study found that nearly half (46.7%) of women who had experienced an adverse medical event also reported institutional betrayal. Although this is lower than the two-thirds reported in a recent study of healthcare experiences [22], it is still quite common. These experiences significantly impacted the relationship between adverse medical experiences and trust, controlling for patient-physician alliance. It was a more common experience for women who had previous children. This indicates that to fully understand how to build and protect patients’ trust in their physicians it is necessary to not only focus

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on the patient-physician alliance, but to understand the institutional context in which it takes place. Overall, the current study adds to the literature by providing empirical support for recommendations made by the IOM, ACOG, and the WHO alike – that patients’ relationships with their providers should be considered as key to their health. However, this study also examines this relationship as one that is open to both dyadic (i.e., patient-physician alliance) and system (i.e., institutional betrayal) influences. These experiences in healthcare directly and indirectly impact patients’ trust in healthcare providers. We hypothesized that, following adverse events related to their maternity care, women who were more involved in their care would report higher trust in their physician compared to women who were less involved in their care. This hypothesis was supported. We found that women who were involved with their maternity care had slightly more trust in their physician following an adverse event or institutional betrayal. Although this proved to be protective for women who experienced adverse events or institutional betrayal, patient involvement with their care did not mitigate the negative impact that an adverse event had on patient trust in her physician. While we also hypothesized that the effect of patient involvement would be attenuated for firsttime mothers, there were no significant differences concerning the impact of patient alliance with their physician between first-time mothers and mothers who had given birth before. Limitations. As this survey was given online, there is no true way to determine if the women were accurately representing themselves or their experiences in the survey. While this is a concern, past studies have addressed the quality of behavioral research data gathered via Amazon Mechanical Turk and have found that it is consistent with data gathered through more traditional methods such as recruiting undergraduate participants [26]. Therefore, this method of data collection has been supported as a valid method of conducting behavioral science research. Another possible limitation of this studies lies in the fact that it is based on retrospective attitudes of women who had given birth and therefore memories or more recent experiences may have impacted survey responses. Further, our sample had a notable underrepresentation of Hispanic mothers in our sample (3.5% of our sample vs. 17.8% of the population according to US census data). Finally, our results confirm correlation but not causation, leaving room for a possible confounding variables in our results. Future directions. For the purposes of this study, we only collected data concerning information about the women’s most recent pregnancy. Many women e-mailed the lead researcher to say that their most recent pregnancy had no complications but they had issues with a previous one. This poses a possibility for future research, to determine if women’s experiences with pregnancy tend to be uniform or show variability from one to the next. The finding that women who had given birth previously were more likely to experience institutional betrayal suggests that past experiences may have enduring effects, even when experiences with different pregnancies vary. This study lays the groundwork for a longitudinal survey in which women will be followed throughout the course of their pregnancy. We hope to learn how experiences with childbirth and maternity care will impact the physician-patient relationship over time. We also hope to continue collecting qualitative data through future studies to allow women to share their experiences and explain their perceptions of the ways in which their experiences affect their trust in their physicians.

betrayal during pregnancy or delivery. It was hypothesized that women who had reported a strong alliance with their physician would have a smaller decrease in physician trust following an adverse event and subsequent institutional betrayal. Our findings supported this hypothesis. It was found that women who reported alliance with their physician had higher trust in them following an adverse event and institutional betrayal when compared to women who were not as involved. While an alliance with one’s physician served to protect patient trust after adverse events, it did not eliminate the negative impact of an adverse event or institutional betrayal.

4.2. Conclusion

Wake Forrest Trust in Physician Scale (Hall & Dugan, 2001)

Through this study, we hoped to learn how alliance between maternity patients and their physician would impact patient trust in her physician following an adverse event or institutional

1. Kim Alliance Scale: Conceptual Schema with Sample Items (Kim et al., 2001) 1 I make suggestions on what works best for me.

4.3. Practice implications This study could be applied to women across the United States as there was no geographic restriction to the study distribution. Women were of many different ages, varied as to when they gave birth, and the racial makeup of the women surveyed closely parallels US census data [23]. Taken together, all of this information illustrates that this study sample is representative of the United States population. This study demonstrates the benefits of obstetricians having an alliance with their patients. From a training perspective, the results of this study support a need for medical students and residents to receive training on how to work with their patients and involve them meaningfully in their care. The finding that patients who reported a strong alliance with their physician still lost trust in them after experiencing institutional betrayal and adverse events illustrates the large impact of institutions on patients. This study shows how the doctor-patient relationship is subject to the consequences of the medical system of which it is a part, for better or worse. In training future physicians, the importance of these systems-based relationships should be addressed so as to allow for a better understanding of their impact. Funding We thank the K. Danner Clouser Student Research Endowment for their funding that indirectly supported the completion of this research. Conflicts of interest We have no conflicts of interest to disclose. Appendix A. Survey Questions

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2 3 4 5 6 7 8 9 10 11

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I am allowed in decision-making process. I participate in establishing goals. I have a good rapport with my provider. I feel my provider gives me enough information. I can express negative feelings concerns freely. I feel involved in my health care. I feel my provider supports my point of view. My provider encourages me to make decisions. I have an active partnership with my provider. I am free to refuse my provider’s recommendation.

Negative Medical Experiences, Adverse Consequences, and unexpected or Lasting Pain Assessment (Smith, 2017) Thinking back on your experiences related to your pregnancy and delivery, did you experience any of the following? 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

I was given an incorrect diagnosis I underwent an unnecessary procedure or test I had an allergic reaction to medication I was prescribed an unnecessary medication I was prescribed an incorrect medication dosage I was prescribed a medication that interacted with existing medication I developed an infection related to a medical procedure My personal information was incorrect (e.g., name, diagnosis, schedule) I was not notified of test results I had a procedure was more painful than I expected I had post-surgical complications I needed to return to hospital after discharge for emergency care I found the medical facilities were old, run down, or in disrepair I received inaccurate insurance information I experienced unexpected side effects of a procedure or medication

Related to your pregnancy and delivery, were you diagnosed with any of the following conditions? 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18

Acute myocardial infarction Acute renal failure Adult respiratory distress syndrome Amniotic fluid embolism Aneurysm Cardiac arrest/ventricular fibrillation Disseminated intravascular coagulation Eclampsia Heart failure during procedure or surgery Internal injuries of thorax, abdomen, and pelvis Intracranial injuries Puerperal cerebrovascular disorders Pulmonary edema Severe anesthesia complications Sepsis Shock Sickle cell anemia with crisis Thrombotic embolism

Related to your pregnancy and delivery, did you undergo any of the following procedures? 1 Blood transfusion 2 Cardio monitoring 3 Conversion of cardiac rhythm

4 5 6 7

Hysterectomy Operations on heart and pericardium Temporary tracheostomy Ventilation

Institutional Betrayal Questionnaire- Healthcare (Smith, 2017) 1. Modified: Pregnancy/Delivery Specific This section will ask you to think about healthcare institutions that you have interacted with in the United States, related to your most recent pregnancy and delivery. These questions might look similar to questions you have answered on surveys sent to you by the hospital or your doctor’s office, but these questions are used only for research. These questions may or may not call to mind specific individuals. This may include large systems such as the United States healthcare system as a whole, hospitals, or insurance companies. It may also call to mind smaller parts of these systems such as a hospital department, a health clinic, or a doctor's office staff. As you progress though this section, you may think about different institutions at different points of your most recent pregnancy and delivery. In thinking about the experiences seeking healthcare you described in the previous section, did a healthcare institution play a role by (check all that apply) . . . 1 Not taking proactive steps to prevent unpleasant healthcare experiences 2 Creating an environment in which unpleasant healthcare experiences seemed common or normal 3 Creating an environment in which a negative experience seemed more likely to occur 4 Making it difficult to report a negative experience or share concerns 5 Responding inadequately to your concerns or reports of a negative experience 6 Mishandling your protected personal information 7 Covering up adverse medical events 8 Denying your experience in some way 9 Punishing you in some way for reporting a negative healthcare experience 10 Suggesting your experience might affect the reputation of the institution 11 Creating an environment where you no longer felt like a valued patient 12 Creating an environment where continuing to seek care was difficult for you 13 Actively supporting you with either formal or informal resources 14 Admitting that the institution did not adequately protect you 15 Apologizing for the institution’s role in what happened to you 16 Believing your description of events 17 Allowing you to have a say in how your healthcare was handled 18 Ensuring you were treated as an important member of the institution 19 Creating an environment where this type of experience was safe to discuss 20 Creating an environment where this type of experience was recognized as a problem Please briefly identify the institution involved (e.g., insurance company, doctor’s office, hospital, etc. – you do not need to provide a specific name): Prior to this experience, was this an institution or organization you trusted?

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1 2 3 4

Not at all Very little A good deal Very much

Have you sought healthcare from this institution since having any of these experiences? 0-No 1-Yes ————————————————————————————Open response section————————————————————————————— Below are the items you indicated experiencing during your pregnancy and delivery. In the spaces provided below each item, can you briefly describe what happened? [Repopulate selections from 1 to 20, with text boxes below each] References [1] ACOG, ACOG Committee opinion: Patient Safety in Obstetrics and Gynecology, (2009) . [2] World Health Organization, Patient Engagement, (2016) . [3] I. of Medicine, Crossing the Quality Chasm: A New Health System for the 21ST Century, (2001) . [4] A.M. Bauer, M.M. Parker, D. Schillinger, W. Katon, N. Adler, A.S. Adams, H.H. Moffet, A.J. Karter, Associations between antidepressant adherence and shared decision-making, patient-provider trust, and communication among adults with diabetes: diabetes Study of Northern California (DISTANCE), J. Gen. Intern. Med. 29 (2014) 1139–1147, doi:http://dx.doi.org/10.1007/s11606-0142845-6. [5] S. Hrisos, R. Thomson, Seeing it from both sides: do approaches to involving patients in improving their safety risk damaging the trust between patients and healthcare professionals? An interview study, PLoS One 8 (2013) 1–11, doi: http://dx.doi.org/10.1371/journal.pone.0080759. [6] M.J. Nieuwenhuijze, I. Korstjens, A. De Jonge, R. De Vries, A. Lagro-janssen, On Speaking Terms: a Delphi Study on Shared Decision-making in Maternity Care, (2014) , pp. 1–11. [7] ACOG, ACOG Committee Opinion: Partnering with Patients to Improve Safety, (2011) .

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[8] E. Hodnett, Pain and women’s satisfaction with the experience of childbirth: a systematic review, Am. J. Obstet. Gynecol. 186 (2002). [9] E.R. Declercq, C. Sakala, M.P. Corry, Listening to Mothers I : Report of the Second National U. S. Survey of Women’ S Childbearing Experiences, (2006), pp. 9–15, doi:http://dx.doi.org/10.1624/105812407X244769. [10] J. Commission, Sentinel Event Alert, (2010) , pp. 8–9. [11] S. Lang, M.V. Garrido, C. Heintze, Patients’ views of adverse events in primary and ambulatory care: a systematic review to assess methods and the content of what patients consider to be adverse events, BMC Fam. Pract. 17 (2016) 1–9, doi:http://dx.doi.org/10.1186/s12875-016-0408-0. [12] J. Schildmann, P. Ritter, S. Salloch, W. Uhl, J. Vollmann, One also needs a bit of trust in the doctor . . . ”: a qualitative interview study with pancreatic cancer patients about their perceptions and views on information and treatment decision-making, Ann. Oncol. 24 (2013) 2444–2449, doi:http://dx.doi.org/ 10.1093/annonc/mdt193. [13] N. Kraetschmer, N. Sharpe, S. Urowitz, R.B. Deber, How does trust affect patient preferences for participation in decision-making? Health Expect. 7 (2004) 317–326, doi:http://dx.doi.org/10.1111/j.1369-7625.2004.00296.x. [14] National Network of Libraries of Medicine, Health Literacy, (2018) . https:// nnlm.gov/initiatives/topics/health-literacy. [15] M. Kutner, E. Greenberg, Y. Jin, C. Paulsen, The Health Literacy of America’ s Adults Results from the 2003 National Assessment, (2006) . [16] R.L. Goldenberg, E.M. Mcclure, Women’ s Perceptions Regarding the Safety of Births at Various Gestational Ages, 114 (2009) 1254–1258. [17] E. Farin, L. Gramm, E. Schmidt, The patient-physician relationship in patients with chronic low back pain as a predictor of outcomes after rehabilitation, J. Behav. Med. 36 (2013) 246–258, doi:http://dx.doi.org/10.1007/s10865-0129419-z. [18] D. Levinson, Adverse events in hospitals: national incidence Medicare beneficiaries, Dep. Heal. Hum. Serv. Off. Insp. Gen. (2010) 1–75. [19] P. Rhodes, S. Campbell, C. Sanders, Trust, temporality and systems: how do patients understand patient safety in primary care? A qualitative study, Health Expect. 19 (2016) 253–263, doi:http://dx.doi.org/10.1111/hex.12342. [20] T.H. Gallagher, A.D. Waterman, A.G. Ebers, V.J. Fraser, W. Levinson, Patients’ and Physicians’ Attitudes Regarding the Disclosure of Medical Errors, 289 (2017) 1001–1007. [21] C.P. Smith, J.J. Freyd, Institutional betrayal, Am. Psychol. 69 (2014) 575–587. [22] C.P. Smith, First, do no harm: institutional betrayal and trust in health care organizations, J. Multidiscip. Healthc. (2017) 1–12. [23] Quick Facts: United States, US Census Bereau, (2016) . [24] M.A. Hall, E. Dugan, Trust in Physicians and Medical Institutions: What Is It, Can It Be Measured, and Does It Matter?, 79 (2001) 613–639. [25] S.C. Kim, D. Boren, S.L. Solem, The Kim Alliance Scale, 10 (2001) 314–331. [26] T.S. Behrend, D.J. Sharek, A.W. Meade, E.N. Wiebe, The viability of crowdsourcing for survey research, Behav. Res. Methods (2011) 800–813, doi:http://dx.doi.org/10.3758/s13428-011-0081-0.