The interpretation of research in health care is essential to decision making. By understanding research, health care providers can identify risk factors, trends, outcomes for treatment, health care c

The interpretation of research in health care is essential to decision making. By understanding research, health care providers can identify risk factors, trends, outcomes for treatment, health care c
Article Analysis 1 Article Citation and Permalink (APA format) Article 1 Article 2 Article 3 Point Description Description Description Broad Topic Area/Title Identify Independent and Dependent Variables and Type of Data for the Variables Population of Interest for the Study Sample Sampling Method Descriptive Statistics (Mean, Median, Mode; Standard Deviation) Identify examples of descriptive statistics in the article. Inferential Statistics Identify examples of inferential statistics in the article. © 2019. Grand Canyon University. All Rights Reserved.
The interpretation of research in health care is essential to decision making. By understanding research, health care providers can identify risk factors, trends, outcomes for treatment, health care c
Article Analysis: Example 1 Article Citation Utens, C. M. A., Goossens, L. M. A., van Schayck, O. C. P., Rutten-van Mölken, M. P. M. H., van Litsenburg, W., Janssen, A., … Smeenk, F. W. J. M. (2013). Patient preference and satisfaction in hospital-at-home and usual hospital care for COPD exacerbations: Results of a randomised controlled trial. International Journal of Nursing Studies, 50, 1537–1549. doi.org/10.1016/j.ijnurstu.2013.03.006 Link: https://www.ncbi.nlm.nih.gov/pubmed/23582671 (Include permalink for articles from GCU Library.) Category Description Broad Topic Area/Title The differences in preference and satisfaction based upon hospital care location for COPD exacerbations Variables and Type of Data for the Variables Treatment Location-categorical -“home treatment” and “hospital treatment” Satisfaction – Ordinal Scale (1-5) Preference – categorical “home treatment” and “hospital treatment” Population of Interest for the Study COPD exacerbation patients from five hospitals and three home care organizations Sample 139 patients 69 from the usual hospital care group 70 from the early assisted discharge care group Sampling Method A randomized sampling method was used to select the patients who met the criteria for the study (p. 1540) Descriptive Statistics (mean, median, mode; standard deviation) Identify examples of descriptive statistics in the article. Example descriptive statistics: Usual hospital Age: Mean: 67.8 Standard deviation: 11.30 Early assisted discharge Age: Mean: 68.31 Standard deviation: 10.34 (p. 1540) Inferential Statistics Identify examples of inferential statistics in the article. Example of inferential statistics: Overall satisfaction score: Tested difference between HC and EAD p-value .863 (p. 1543) © 2019. Grand Canyon University. All Rights Reserved.
The interpretation of research in health care is essential to decision making. By understanding research, health care providers can identify risk factors, trends, outcomes for treatment, health care c
  64 Article Reconsidering Evaluation Criteria for Scientific Adequacy in Health Care Research: An Integrative Framework of Quantitative and Qualitative Criteria Hiroaki Miyata, PhD Department of Healthcare Quality Assessment Graduate School of Medicine The University of Tokyo, Japan Ichiro Kai, MD, MPH Department of Social Gerontology School of Public Health The University of Tokyo, Japan © 2009 Miyata. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0 ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Abstract It is important to reconsider evaluation criteria regarding scientific adequacy in health care research. In this article the authors review the four pairs of quantitative/qualitative paradigms. They discuss the use of evaluation criteria based on a pragmatic perspective after examining the epistemological issues behind the criteria. Validity/credibility is concerned with research framework, whereas reliability/dependability refers to the range of stability in observations, objectivity/ confirmability reflects influences between observers and subjects, and generalizability/transferability has epistemological differences in the way findings are applied. Qualitative studies should not always choose qualitative paradigms, and vice versa. If stability can be assumed to some extent in a qualitative study, it is better to use a quantitative paradigm. Regardless of whether it is quantitative or qualitative research, it is important to recognize the four epistemological axes. Keywords: validity, reliability, generalizability, quantitative research, qualitative research, evaluation International Journal of Qualitative Methods 2009, 8(1)  65 Historical relationship between quantitative and qualitative research Newton’s era and the Renaissance established two permanently important worldviews from which modern traditions and methods of inquiry have proceeded. These two worldviews and the position of scientists within them roughly characterize quantitative and qualitative research. The quantitative world view posits an objective reality characterized by stable, predictable, and commensurable phenomena that operate through the laws of cause and effect. The qualitative worldview emphasizes a subjective reality that is characterized by complexity, apparently infinite variation, and incommensurability without perturbation. The laws of cause and effect operate, but always within a unique set of circumstances determined by multiple factors (Thomas, 1996). Historically it might have been difficult for many health care practitioners and researchers, the majority with educational backgrounds strictly in the natural sciences or biology, to take a qualitative approach because qualitative methods are rooted in social science (Pope & Mays, 2001). The wide acceptance of qualitative research might also have been slowed because of the influence of views such as those of Kuhn (1970), and Bernstein and Freeman (1975), for example, who believed quantitative prediction to be preferable to qualitative prediction. They considered research that had both quantitative and qualitative data to be less valuable in terms of method than research that employed quantitative data only. The scientific community was often seen as divided into two groups based on the use of quantitative versus qualitative methods, and the schism between these seemingly conflicting traditions seemed profound and unlikely to be bridged. In recent years, however, in the fields of both social sciences and health care, researchers have come to believe that it is no use to rigidly separate between quantitative and qualitative research (Abell, 1990; Barbour, 1999; Hammersley, 1992; Mechanic, 1989; Pearlin, 1992). The realization that quantitative and qualitative methods are not incompatible was an important one. Although the two approaches are useful on their own, they are also powerful when used in conjunction with each other. For example, in the form of a questionnaire, qualitative research can be used to narrow a research focus in preparation for use of quantitative methods. Qualitative research is also useful for deeper interpretations of quantitative findings. On the other hand, large variances in quantitative analysis of response data can be explained by focused interviews. Mixed-method research (Johnson & Onwuegbuzie, 2004; O’Byrne, 2007), in which the researcher uses the qualitative research paradigm for one phase of a research study and the quantitative research paradigm for another phase of the study, is also important in health care. Systematic reviews of multimethod studies have demonstrated that significant results would not be possible without equal evaluation of both quantitative and qualitative data (Bravata, McDonald, Shojania, Sundaram, & Owens, 2005; Mulrow, Langhorne, & Grimshaw, 1997). These findings intimate the need to create new integrative criteria by which to evaluate the scientific adequacy of both quantitative and qualitative analysis. Development of the debate of a an integrative framework for evaluation There are three main perspectives—method, use, and value—regarding evaluation criteria (Alkin, 2004). As scientific adequacy is one of the most important criteria in method, it was well organized in the social experiment field. Although many researchers recognize the importance of scientific adequacy in qualitative research, it was not well organized in qualitative research field until now. Recently some researchers have developed criteria including not only method but also use or value (American Educational Research Association, American Psychological Association, & National Council on Measurement in Education, 1999; Messick, 1995). In this study, however, we focus on method and International Journal of Qualitative Methods 2009, 8(1)  66 examine an integrative framework of quantitative and qualitative criteria. There are many words and concepts (Koch, 1994; Watson & Girard, 2004) regarding method in qualitative research field (e.g., rigor, integrity); we use scientific adequacy in this study. Validity, reliability, and generalizability are widely used as criteria for the evaluation of quantitative analysis. However, many qualitative researchers, who do not assume an objective reality or a confirmatory perception, tend to question this holy trinity (Klave, 1995). Even now, more than two decades since it began, the interdisciplinary discussion regarding the roles of validity, reliability, and generalizability in the qualitative paradigm continues (Mays & Pope, 2001). Debate concerning the relationship between quantitative and qualitative paradigms is often muddled and confused, and the clutter of terms and arguments has resulted in the concepts’ becoming obscure and unrecognizable (Morse, Barrett, Mayan, Olson, & Spiers, 2002). The 1980s saw the first main wave of qualitative literature and the emergence of a new language for research. The introduction of Lincoln and Guba’s (1985) ideas on trustworthiness provided an opportunity for qualitative researchers to explore new ways of expressing validity, reliability, and generalizability outside the semantics of the quantitative paradigm (Guba & Lincoln, 1981). Lincoln and Guba recognized that their new criterion might be imperfect. It also would not yet be considered significant as it stood in marked contrast to that of quantitative inquiry, which claimed to be utterly unassailable (Tobin, 2004). Lincoln and Guba later refined the trustworthiness construct by introducing the criteria of credibility, dependability, confirmability, and transferability. These concepts were innovative and challenging, and they provided the initial platform from which much of the current debate on scientific adequacy emerged (Lincoln & Guba, 1985). We also recognize and make consideration for the fact that Lincoln’s (1985) paradigms are not only perspectives regarding scientific adequacy. As Messick (1989, 1995) thought that validity and values are one imperative, he considered that test validation implicates both the science and the ethics of assessment. As our purpose is to develop integrative framework of quantitative and qualitative criteria, we adopted the conventional definition of validity (in Messick’s terms) in this study. The rejection of the terms validity and reliability for evaluation came about from arguments presented in the literature emphasizing the need for a new criterion that was in no way linked to the quantitative approach (Pech, 1999; Whittemore, Chase, & Mandle, 2001). Although the reasons why terms pertaining to the quantitative paradigm that were not pertinent to qualitative inquiry have been clearly argued (Altheide, 1994; Leininger, 1994), this outright denunciation is cautioned against by Morse et al. (2002), who warned that it could result in qualitative research’s being rejected as a science. Morse et al. pointed out that science is concerned with scientific adequacy and that if we reject the concepts of validity and reliability, we would reject the concept of scientific adequacy. The extant literature highlights the increasing need to reconsider evaluation criteria for scientific adequacy in health care research and to explore an integrative framework of quantitative and qualitative criteria. In this article, we compare quantitative criteria with qualitative criteria and examine their underlying epistemologies. Review method As for review perspective, we first examine Patton’s (1990) “paradigm of choices” (p. 39), which supports methodological appropriateness as the primary criterion for judging methodological quality. A paradigm of choices allows that different methods might be appropriate in different situations, a view that is quite different from the conventional pragmatic perspectives. International Journal of Qualitative Methods 2009, 8(1)  67 Using a paradigm of choices, in this article we explore the epistemologies underlying quantitative and qualitative evaluation criteria and discuss the issue of appropriateness between paradigm and type of study. Conducting research with an understanding of the strengths and limitations of both quantitative and qualitative methodologies is also important from the viewpoint of critical multiplism (Letourneau & Allen, 1999). To date, however, there exists no integrative framework of quantitative and qualitative criteria (Miles & Huberman, 1994). Unclear methodology can lead to a lack of scientific adequacy in research (Mays & Pope, 2001). Given the lack of an integrative framework of quantitative and qualitative criteria, we aim in this article to develop a clear definition of evaluation criteria. For this purpose, we review the four pairs of paradigms—validity/credibility, reliability/dependability, objectivity/ confirmability, generalizability/ transferability—previously proposed by Lincoln and Guba (1985). A MEDLINE search was conducted to identify studies that discuss evaluation criteria for research. We excluded studies that did not mention validity, credibility, reliability, dependability, objectivity, confirmability, generalizability, or transferability if they had description regarding some evaluation criteria. We have also included articles recommended by health care research experts. Validity of setting the research frameworks (validity/credibility) Validity is the strength of research conclusions, inferences, or propositions. More formally, Cook and Campbell (1979) defined it as the “best available approximation to the truth or falsity of a given inference, proposition or conclusion” (p. 37). Others have explained that validity refers to whether the research truly measures what it intended to measure or how truthful the research results are (Joppe, 2006). The validity of quantitative research conclusions is generally divided into three categories: criterion- oriented validity, content validity, and construct validity (Carmines & Zeller, 1979; Cronbach, 1955; Nunnally, 1978; Wainer, 1988). If a measured value and criterion score are determined at essentially the same time, a researcher can establish criterion-oriented validity. Criterion-oriented validity is also established when one test is proposed as a substitute for another or a test is shown to correlate with some contemporary criteria. Content validity is established by showing that the test items are samples of a universe in which the investigator is interested; the researcher will define a universe, and sample systematically within that universe in order to develop a framework. Establishing content validity has significant limitations, however, as it is difficult to avoid error (Bohrnstedt, 1985; Kirk & Miller, 1986). Construct validity is involved whenever a test is to be interpreted as a measure of some attribute or quality that is not operationally defined. The problem faced by the investigator is, What constructs account for variance in test performance? Seemingly, there is recognition that a research framework can be established in advance. Alternatively, Lincoln and Guba (1985) have argued that there is actually a set of multiple constructs formed in the minds of people and that to ensure methodological scientific adequacy, researchers must demonstrate that they have recreated these multiple constructs adequately; that is, that the recreations, arrived at via inquiry, are credible to the creators of the original multiple realities. In this view, credible is the operational word, and credibility is enhanced by activities that make it more likely that credible findings and interpretations will be produced, such as prolonged engagement and triangulation, and activities aimed at refining a working hypotheses as more and more information becomes available (negative case analysis) (Janesick, 2000; Lincoln, 1985; Schwandt , 2001). In the case of credibility as an evaluation criterion, a research framework is formed in the process of the research, suggesting that one could not be established in advance. International Journal of Qualitative Methods 2009, 8(1)  68 As for the validity/credibility paradigm, there is a major difference regarding the creation of research frameworks (Table 1). When a research framework can be established in advance, it is used to make observations. Because, in this case, developing a research framework means conducting research from a certain perspective, it is broader than testing a hypothesis. When a research framework cannot be established in advance, it is formed in the process of the study. Although quantitative studies employ numbers, which allow limited interpretation, most qualitative studies use words, which might allow for wider interpretation. Thus, quantitative studies are well suited to validity as an evaluation criterion, whereas qualitative studies are well suited to credibility. In some cases, however, qualitative studies, such as participant observations, do test hypotheses (Stake, 1978). In these instances it might be valuable to apply the validity criterion, as a research framework is formed in advance. Additionally, if the research objective is to form a new hypothesis, researchers might create only a partial framework in advance to, for example, prepare an interview protocol or interview structure. In this case, both credibility and validity might be appropriate criteria for evaluation. The same is equally true for quantitative research. It is not always possible to create a rigorous framework in advance of every quantitative study. For example, some statistical analyses, such as exploratory factor analysis or data mining, allow room for interpretation, and the use of credibility as an evaluation criterion can contribute to the robustness of the research. However, current techniques of enhancing credibility are limited to text-based data, and new techniques are needed for application to numerical data. The use of questionnaires in quantitative research is another case where the use of credibility might be appropriate. The objective of a text-based questionnaire is to capture reality; therefore, there might be a strong need to use the credibility criterion for evaluation. Because using credibility as an evaluation criterion for quantitative research is useful, further exploration of this use is necessary. The validity/credibility paradigm is centered on the establishment of a research framework. Validity is used to evaluate frameworks that are set in advance. Credibility is used to evaluate frameworks that are created in the process of research. After assessing the nature of the research framework, a researcher should use either validity or credibility, or both, as appropriate. Stability of the phenomena and methods (reliability/dependability) Reliability refers to the extent to which results are consistent over time and are an accurate representation of the total population under study (Nunnally, 1978). In other words, if the results of a study can be reproduced under a similar method, then the research instrument is considered to be reliable. It is important to note, however, that as each type of measurement has a certain level of nonsystematic error, it is impossible to remove systematic error completely. Kirk and Miller (1986) identified three types of reliability pertaining to quantitative research: quixotic reliability, synchronic reliability, and diachronic reliability. Quixotic reliability refers to the circumstances in which a single method of observation continually yields an erroneous result, which can be detrimentally deceptive. Diachronic reliability refers to the stability of an observation through time. In the social sciences this concept is manifested in test- retest paradigms of experimental psychology and survey research. Synchronic reliability refers to the similarity of observations within the same time period. It involves observations that are consistent with respect to the particular features of interest to the observer and can be evaluated by comparisons of data elicited by alternative forms (e.g., split-half testing, interrater correlation) (Cronbach, 1951; Nunnally, 1978). Kirk and Miller believed that diachronic reliability and synchronic reliability cannot always be applied to qualitative research. The general applicability of diachronic reliability is somewhat diminished by the fact that it is appropriate only for the measurement of features and entities that remain unchanged., In effect, reliability is an evaluation criterion centered on the stability of results and the recognition that phenomena and methods can assume stability in the context of the research. International Journal of Qualitative Methods 2009, 8(1)  69 Table 1. Paradigm of criteria and underlying epistemology How to Use Criteria Validity is used to evaluate frameworks that are set in advance Credibility is used to evaluate frameworks that are created in the process of the research Reliability is used to evaluate phenomena and methods that can assume stability Dependability is used to evaluate those that cannot assume stability Objectivity is used to evaluate observations and interventions conducted in a neutral way Confirmability is used to evaluate those in which neutrality could not be secured After setting the range of application, generalizability is used to evaluate generalization and transferability is used to evaluate extrapolation Tactics Factor analysis, examine an external criterion, pretest Triangulation, member check, negative case analysis Test-retest, interrater consistency, Cronbach’s alpha Consistency on data collection and analysis, warranty of the traceability, data auditing Making verbatim record, conduct double-check for data entry Making reflexive journals, using rich data, developing a rapport Random sampling, randomization, matching, comparing with parent population Thick description of research context Paradigm of Criteria Validity Credibility Reliability Dependability Objectivity Confirmability Generalizability Transferability Epistemology When research frameworks could be set in advance , they are used to make observations. When research frameworks could not be set in advance , they are formed in the process of the research When research frameworks could not be set in advance , Phenomena and methods that could assume stability are evaluated by the stability of results. Phenomena and methods that could not assume stability are evaluated by the stability of research processes. When observations and interventions are conducted in a neutral way , errors made in the process of research need to be checked. When observations or interventions are not conducted in a neutral way , their effects on processes and consequences of the research need to be checked. As for the field where the study findings could be applied , some examination toward generalization is needed. As for the field where the study findings could not be applied , some information toward extrapolation is needed. Category Validity of setting the research frameworks (validity) Stability of the phenomena and methods (stability) Neutrality of the observations and interventions (neutrality) Range and applicability of findings (applicability) International Journal of Qualitative Methods 2009, 8(1)  70 Dependability is used as an evaluation criterion when an observed phenomenon is likely to change depending on a research method, time, or environment and it is difficult to assume stability in the research (Lincoln & Guba, 1985). As a criterion dependability takes into account both factors related to instability and factors related to phenomenal or design-induced changes (Schwandt, 2001). In research studies where dependability is used as the evaluation criterion, it is often the case that researchers have to certify that the collection and analysis of data fall within acceptable professional, legal, and ethical limits (Schwandt, 2001). Dependability is assessed mainly by the use of a dependability audit, in which a third-party auditor systematically checks the researcher’s work through review of the audit trail (Schwandt, 1997). The audit trail includes tape recordings, transcripts, interviewer’s guides, data reduction and analysis products, and the list of working hypotheses. The auditor ascertains fairness in the representation of the research process and determines whether researchers’ accounts are supported by corroborative documents. Dependability is an evaluation criterion focused on the consistency of the research process and is applicable in cases where both method and phenomena might prove to be unstable. The stability of phenomena and methods varies greatly in the reliability/dependability paradigm (see Table 1). Phenomena and methods that can assume stability are evaluated by the stability of results, whereas phenomena and methods that are not stable are evaluated by the consistency of the research process. Reliability as an evaluation criterion is highly suited to studies with controlled research environments, such as a laboratory observation, whereas dependability is more applicable to studies measuring less controllable events, such as those dealing with human emotion. In quantitative research the stability of phenomena and methods is often the case; however, this cannot be assumed automatically. Similarly, there are instances when the method and phenomena are actually stable in quantitative studies. Mental health research is a prime example. Symptoms of mental disorders often differ greatly across a group of patients; therefore, assessing clinical condition as a variable is not stable (American Psychiatric Association, 1994). To ensure dependability between symptoms and a diagnosis, the researcher must define a mental disorder based on diagnostic criteria. After defining the diagnosis of a mental disorder, the effects of treatment can be evaluated quantitatively and the characteristics of symptoms can be examined qualitatively. This is also an example where the dependability criterion is used to evaluate the scientific adequacy of both quantitative and qualitative results. In health care research, rather than choosing a single evaluation criterion based on the assumption of stability (or instability), it is necessary to assess stability in terms of observational method, observed phenomenon, and data analysis to use appropriate criterion. In this paradigm reliability is used to evaluate phenomena and methods that assume stability, whereas dependability is used to evaluate those that do not assume stability. Neutrality of the observations and interventions (objectivity/confirmability) Regarding the distance between the observer and the observed, two perspectives are of principal importance: The first is based on the notion that a short distance harms objectivity, and the second is based on the notion that a long distance causes a lack of understanding of the observed. 1 Quantitative research generally chooses the former perspective, keeping a certain distance from the observed. Objectivity assumes three things: (a) there is an isomorphism between the study data and reality, (b) observers can keep adequate distance from the observed, and (c) inquiry is value free (Lincoln & Guba, 1985). When observations and interventions are conducted in a neutral way, human errors made in the process of research need to be vetted to ensure scientific adequacy. Conversely, qualitative research sometimes addresses issues that require researchers to have direct emotional involvement or to experience sympathy, such as when conducting a one-on-one survey and International Journal of Qualitative Methods 2009, 8(1)  71 having to developing a cordial relationship with study participants (Lofland, 1971). In such cases, observations and interventions have an effect not only on the observed but also on the observers. When the three assumptions regarding objectivity cannot be held true, researchers need to establish confirmability by controlling for the effects of observations and interventions on the process and consequences of the research.(Lincoln & Guba, 1985) This is done by certifying that the findings and interpretations are based on raw data and by making transparent the methods and process of the research (e.g., raw data, data reduction and analysis products, data reconstruction and synthesis products, process notes) (Miles & Huberman, 1994). In the objectivity/confirmability paradigm the difference in evaluation methods lies in the recognition of the neutrality of observations and interventions (see Table 1). When observations and interventions are conducted in a neutral way, errors made in the process of research need to be controlled for, and when observations or interventions are not conducted in a neutral way, their effects on the process and consequences of the research need to be controlled for. In health care research the majority of participants are human beings, and research often has an effect on the observed, even in quantitative studies. Interviews, for example, have various effects on both the observers and the observed due to interpersonal contact, and in survey studies the wording, construction, and arrangement of questions in questionnaires might influence participants’ answers. Other factors that can have a confounding effect on results include the researchers themselves, who could realize academic achievement by reporting the research results, and the research sponsor, who might have direct interests in the research results. Although a limited number of scientific journals currently require authors to provide information regarding the source of funding, many journals seem to lack awareness of findings that might be affected by the sponsors. Thus, it might be useful to further examine the possible influence from a sponsor or parent organization on research findings. Range and applicability of findings (generalizability/transferability) Generalizability is defined as the extent to which the findings obtained on a specific sample can be applied to the target population (Rothman & Greenland, 1998). This definition does not imply that all the characteristics of the sample should be similar to those of the target population, although it is intuitive that a lack of representativeness in the study sample will limit generalizability. Cronbach (1975) argued that the concept of generalizability in social sciences is different from that of the natural sciences and that researchers should give attention to both controlled and uncontrolled variables in social sciences. As researchers move from one situation to another, their first task is to describe and interpret the effect anew in each situation. If proper weight is given to local conditions, Cronbach believed generalization to be a working hypothesis, not a conclusion. When we are considering generalization, it is important to determine the range of application for research findings. Shadish (1995) argued that the core principles of generalization apply to both quantitative and qualitative research. Findings from either type of study can be generalized according to five principles: (a) the principle of proximal similarity, (b) the principle of heterogeneity of irrelevancies, (c) the principle of discriminant validity, (d) the principle of empirical interpolation and extrapolation, and (e) the principle of explanation. If researchers recognize that certain study findings can be applied to another context, then exploration of generalization is useful. According to the generalizability paradigm, researchers need to determine the range of application of findings to evaluate the generalizability of those findings. Alternatively, some qualitative researchers have argued that, at best, only working hypotheses may be abstracted and that the transferability of these hypotheses is determined empirically, depending on the degree of similarity between sending and receiving contexts. Donmoyer (1990) argued that researchers International Journal of Qualitative Methods 2009, 8(1)  72 should reject the conventional paradigm of generalizability in qualitative research. Researchers need to learn about both sending and receiving contexts to ensure the transferability of one’s inference (Lincoln, 1985). The original inquirer cannot specify the sites to which transferability might be sought, but the implementers can. The responsibility of the original investigator is to enable someone interested in making a transfer to reach a conclusion about whether the transfer can be contemplated as a possibility. To improve the quality of transferability, original researchers are responsible for providing sufficient descriptive data for implementers to make better transferability judgments. Researchers should suggest possible methods of verification. As mentioned above, when researchers recognize that it could be difficult to generalize certain research findings, they should evaluate the possibility of extrapolation based on the transferability paradigm. The contrast in the generalizability/transferability paradigm lies in the difference in the range of application (see Table 1). In a context where study findings can be applied, evaluation of generalizability is needed. In a context where study findings are not directly applicable, information regarding extrapolation is needed. Compared to the situation in basic research in biology or physics, it is difficult for applied science to attain generalizability, mainly because of its vulnerability to social contexts and regional environments, and the characteristics of participants. Evaluating the quality of research solely from the viewpoint of generalizability should be avoided, as the findings of applied science might be more easily useful to the direct return of the research results to the participants and society. If a pilot intervention study is conducted for district “A,” the findings need to be generalizable at least to the whole of district A, even though it might be difficult to simply apply the program findings to other countries that have different social systems and characteristics of residents. In such an instance, it might be useful to discuss not only the limitations to generalizability but also the transferability to another context. In quantitative research, it is imperative to establish techniques of transferability. Although it might not be useful to evaluate the generalizability of certain types of qualitative research that report detailed findings on single cases, in studies using the grounded theory approach, one of the qualitative methods often intended to form a middle-ranged theory, some techniques regarding generalization for a limited range have been proposed. Even in qualitative research it is useful to evaluate the generalizability of findings after determining the range of application. The generalizability/transferability paradigm is concerned with the range of application of findings. Whether it is quantitative or qualitative research, it is important to recognize and identify the range of application of research findings. After the range of application has been set, generalizability is used to evaluate generalization and transferability is used to evaluate extrapolation. Unless research findings could assume universal generalization or have no possibility of extrapolation, it is useful to use both paradigms for evaluation. Conclusion In this article we examined the epistemological issues behind evaluation criteria for scientific adequacy in research. Comparing quantitative research paradigms with those of qualitative research, we discussed the possible use of evaluation criteria based on a pragmatic perspective. Validity/credibility is concerned with research framework, whereas reliability/dependability refers to the stability of observations, neutrality/ confirmability reflects influences between observers and subjects, and generalizability/transferability are epistemologically different in the way findings are applied. Qualitative studies, however, do not always choose qualitative paradigms; and if we can assume stability to some extent in a qualitative study, it might be better to use a quantitative paradigm (reliability). Similarly, it is useful to employ qualitative paradigms to enhance the scientific adequacy of a quantitative study that did not use a research framework with stability in all phases of observation. Regardless of whether it is quantitative or International Journal of Qualitative Methods 2009, 8(1)  73 qualitative research, it is important to recognize the four epistemological axes. Evaluating scientific adequacy in a study should be done after establishing a framework(s), assessing stability of the phenomena and methods, ensuring neutrality of the observations and interventions, and determining the range of application for the findings. References Abell, P. (1990). Methodological achievements in sociology over the past few decades with special reference to the interplay of qualitative and quantitative methods. London: Macmillan. American Educational Research Association, American Psychological Association, & National Council on Measurement in Education. (1999). Standards for educational and psychological testing. Washington, DC: American Educational Research Association. Alkin, M. C. (2004). Evaluation roots: Tracing theorists’ views and influences. Thousand Oaks, CA: Sage. Altheide, D. J. (1994). Criteria for assessing interpretive validity in qualitative research. London: Sage. American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author. Barbour, R. (1999). The case for combining qualitative and quantitative approaches in health services research. Journal of Health Services Research and Policy, 4, 39–43. Bernstein, I., & Freeman, H. E. (1975). Academic and entrepreneurial research: Consequences of diversity in federal evaluation studies. New York: Russell Sage. Bohrnstedt, G. W. (1985). Measurement. New York: Academic Press. Bravata, D. M., McDonald, K. M., Shojania, K. G., Sundaram, V., & Owens D. K. (2005). Challenges in systematic reviews: Synthesis of topics related to the delivery, organization, and financing of healthcare. Annals of Internal Medicine, 142, 1056–1065. Carmines, E. G., & Zeller, R. A. (1979). Reliability and validity assessment. Beverly Hills, CA: Sage. Cook, T., & Campbell, D. T. (1979). Quasi-experimentation: Design and analysis issues for field settings. Boston: Houghton-Mifflin. Cronbach, L. J. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16, 297–334. Cronbach, L. J. (1955). Construct validity in psychological tests. Psychological Bulletin, 52, 281–302. Cronbach, L. J. (1975). Beyond the two disciplines of scientific psychology. American Psychologist, 30, 116–127. Donmoyer, R. (1990). Generalizeability and the single case study. New York: Teachers College Press. Guba, E. G., & Lincoln, Y. S. (1981). Effective evaluation: Improving the usefulness of evaluation results through responsive and naturalistic approaches. San Francisco: Jossey-Bass. Hammersley, M. (1992). Deconstructing the qualitative-quantitative divide. Aldershot, UK: Avebury. International Journal of Qualitative Methods 2009, 8(1)  74 Janesick, V. J. (2000). The choreography of qualitative research design: Minuets, improvisations and crystallization. Thousand Oaks, CA: Sage. Johnson, R. B., & Onwuegbuzie, A. J. (2004). Mixed methods research: A research paradigm whose time has come. Educational Researcher, 33, 7, 14–26. Joppe M. (2006). The research process. Retrieved February 10, 2009, from http://www.uoguelph.ca/htm/MJResearch/ResearchProcess/default.html Kirk, J. M., & Miller, M. L. (1986). Reliability and validity in qualitative research. Beverly Hills, CA: Sage. Klave S. (1995). The social construct of validity. Qualitative Inquiry, 1, 19–40. Koch, T. (1994). Establishing rigor in qualitative research: The decision trail. Journal of Advanced Nursing, 19, 976–986. Kuhn, T. (1970). The structure of scientific revolutions. Chicago: University of Chicago Press. Leininger, M. (1994). Evaluation criteria and critique of qualitative studies. In J. Morse (Ed.), Critical issues in qualitative research methods (pp. 95–115). Newbury Park, CA: Sage. Letourneau, N., & Allen, M. (1999). Post-positivistic critical multiplism: A beginning dialogue. Journal of Advanced Nursing, 30, 623–630. Lincoln, Y. S. (1985). Emerging criteria for qualitative and interpretive research. Qualitative Inquiry, 3, 275–289. Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Thousand Oaks, CA: Sage. Lofland, J. (1971). Analyzing social settings. Belmont, CA: Wadsworth. Mays, N., & Pope, C. P. (2001). Quality in qualitative health research. .London: BMJ. Mechanic, D. (1989). Medical sociology: Some tensions among theory, method and substance. Journal of Health and Social Behavior, 30, 147–160. Messick, S. (1989). Meaning and values in test validation: The science and ethics of assessment. Educational Researcher, 18(2), 5–11. Messick, S. (1995). Validity of psychological assessment: Validation of inferences from persons’ responses and performances as scientific inquiry into score meaning. American Psychologist, 50(9) 731–739. Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis (2nd ed.). Thousand Oaks, CA: Sage. Morse J. M., Barrett M., Mayan M., Olson K., Spiers J. (2002). Verification strategies for establishing reliability and validity in qualitative research. International Journal of Qualitative Methods, 1(2), Article2. Retrieved January 28, 2009, from https://ejournals.library.ualberta.ca/index.php/IJQM/issue/archive Mulrow C., Langhorne P., & Grimshaw, J. (1997). Integrating heterogeneous pieces of evidence in systematic reviews. Annals of Internal Medicine, 127(11), 989–995. International Journal of Qualitative Methods 2009, 8(1)  75 Nunnally, J. C. (1978). Psychometric theory. New York: McGraw-Hill. O’Byrne, P. (2007). The advantages and disadvantages of mixing methods: An analysis of combining traditional and autoethnographic approaches. Qualitative Health Research, 17(10), 1381–1391. Patton, M. Q. (1990). Qualitative evaluation and research methods. Newbury Park, CA: Sage. Pearlin L. (1992). Structure and meaning in medical sociology. Journal of Health and Social Behavior, 33, 1–9. Pech, E. S. (1999). Quality criteria for qualitative research: Does context make a difference? Qualitative Health Research, 9, 552–558. Pope, C., & Mays, N. (2001). Qualitative methods in health research. London: BMJ. Rothman, K. J., & Greenland, S. (1998). Precision and validity in epidemiologic studies. In K. J. Rothman & S. Greenland (Eds.), Modern epidemiology Philadelphia: Lippincott, Williams & Wilkins. Schwandt, T. A. (1997). Qualitative inquiry: A dictionary of terms. Thousand Oaks, CA: Sage. Schwandt, T. A. (2001). Dictionary of qualitative inquiry. Thousand Oaks, CA: Sage. Shadish, W. R. (1995). Philosophy of science and the quantitative-qualitative debates: Thirteen common errors. Evaluation & Program Planning, 18, 63–75. Stake, R. E. (1978). The case study method in social inquiry. Educational Researcher, 7(2), 5–8. Thomas S. (1996). The virtue of qualitative and quantitative research. Annals of Internal Medicine, 125, 770–771. Tobin, G. A. (2004). Methodological rigour within a qualitative framework. Journal of Advanced Nursing, 48, 388–396. Watson, L. A., & Girard, F. M. (2004). Establishing integrity and avoiding methodological misunderstanding. Qualitative Health Research, 14(6), 875–881. Wainer, H. B. (1988). Test validity. Hilldale, NJ: Lawrence Erlbaum. Whittemore, R., Chase, S. K., & Mandle, C. L. (2001). Validity in qualitative research. Qualitative Health Research, 4, 522–537.
The interpretation of research in health care is essential to decision making. By understanding research, health care providers can identify risk factors, trends, outcomes for treatment, health care c
Woridng compiementary tiierapies into mainstream health care Mary Laurenson Abstract Complementary and alternative medicine (CAM) is speculative and practitioners and policy makers question its validity in the care of people wdthin the NHS. However, increasing numbers of people are using private CAM therapists to address their health needs. This has consequences in terms of cost to the patient, of using CAM instead of traditional health care, and for policy makers and educators raises questions of competency, regulation and research to validate its eflScacy. This article provides a personal account of a nurse educator’s discovery of homeopathy as a complementary therapy, its impact upon health status, training undertaken and action taken as a result. It outlines the potential use of CAM as a holistic approach that embraces the interprofessional framework and suggests CAM practitioner inclusion within mainstream healthcare provision. The article emphasizes the need for further quantitative and qualitative research of CAM treatment. Key words: Reflection • Education • Research • Interprofessionalism I nterprofessional working across service sectors to meet client needs, is outlined in ‘The NHS Plan’ (Department of Health (DH), 2000), and in the National Service Frameworks for mental health (DH, 1999), older people (DH, 2001b) and children (DH, 2005a). According to the House of Lords Select Committee on Science and Technology (HLSCST) ‘Report on Complementary and Alternative Medicine (CAM)’ (2000), the strategy paper ‘Building on the Best: Choice, Responsiveness and Equity in the NHS’ (DH, 2003) and National Institute for Clinical Excellence guidelines (NICE, 2004a,b), CAMs are becoming more relevant. This is also refiected in the estimated ;£130 million a year spent on CAM and this expenditure continues to rise (Prince of Wales Foundation for Integrated Health, 2003). There is evidence to suggest that CAM has physical, psychological, emotional and spiritual benefits (HLSCST, 2000; Washburn, 2000; Lewith et al, 2002; Bechtel, 2004). Mary Laurenson is Lecturer in Health and Social Care, University of Hull Accepted for publication: March 2006 However, it is arguable that people with long-term health conditions have difficulty accessing CAM because of lack of knowledge and attitudes towards CAM, and because of the financial costs (DH, 2003, 2004, 2005b). It is necessary to overcome these issues if CAM is to become integrated into mainstream healthcare provision. As a consequence of the changing healthcare environment the provision of CAM over a range of practice areas needs to be explored. This exploration will enable healthcare professionals to embrace different frameworks and to refiect, examine and critically analyse their own practice and the practice of others. Reflections: scepticism, reveiation, indoctrination and deiiverance Before entering teaching in 1990 I had been a nurse practitioner since the 1960s and was open to all the biomedical and nursing models of caring. My belief in the conventional system was unquestionable as I had witnessed the extraordinary results over years of evidence- based practice. I was sceptical of any other approach, but using the biomedical model for my rheumatoid arthritic condition had not eased the symptoms and repeat prescriptions of medication only masked the pain for short periods. The revelation about a different way forward came when a friend suggested a visit to a homeopath. My first reaction was ‘stuff and nonsense, this cannot help’, but in desperation for pain relief I booked an appointment. The homeopath listened to my complete history and at the end of the lengthy consultation said that she would send me a remedy through the post. I remember driving home thinking’well there goes j{^50′. I consoled myself that she had given her time and had listened to my life history, but wondered why all that information was necessary. Three days later the remedy arrived and I was shocked to see one extremely small soft tablet. The thought of this one tablet doing what all my normal medication could not do seemed impossible and I very nearly threw the tablet away. I guess the truth is that having spent ^50 I thought I might as well take it, after all what harm could it do? What happened next changed my whole outlook on life because as the tablet melted on my tongue the pain dripped quickly downwards out of my body. It was instantaneous and unbelievable as I was without pain for the first time in years. Then my questioning mind though this cannot be permanent and the pain would return as soon as the effects ofthe remedy wore off and then I’d be onto a more expensive form of treatment. I was wrong, the pain never returned and 6 years on I am still pain free and have not had to take any further medication for my condition. In fact, after further blood tests my rheumatoid factor is now normal. I was baffled and thought no one would believe me and so began my quest to find out more about homeopathy. My initiation into homeopathy began with reading and culminated in a 4-year training course. This taught me about Hahnemann and his rediscovery of modern homeopathy (its origins began in ancient Greece) and about the minimal dose, the Law of Cure (symptoms moving downwards and outwards, inward to outward) and numerous other aspects of a holistic way of helping people to heal themselves. 356 British Journal of Nursing, 2006, Vol 15, No 7 COMPLEMENTARY THERAPY I still believe in the biomedical and nursing models of care, but also believe in CAM and wanted to share this knowledge with others and so deliverance came in the form of introducing a post-registration module on CAM into the nursing curriculum. CAM integration The newly introduced CAM module helped to raise practitioners’ awareness and knowledge, to enable them to provide patients with a choice in service provision, as oudined in the DH paper ‘Building on the Best: Choice, Responsiveness and Equity in the NHS’ (DH, 2003). The learning outcomes enabled students to develop a critical aw^areness of CAM issues; raise awareness of and promote new and innovative ways of practice in health and social care; consohdate and build on previous knowledge, skills and attitudes; recognize and understand change in service provision; acknowledge diversity and personal identity; and critically challenge and evaluate professional evidence-based practice. If CAM was integrated more fully into higher education it would also present a flirther opportunity for interprofessional collaboration and lead to research on competency and regulation. The HLSCST ‘Report on Complementary and Alternative Medicine’ (2000) and the DH paper Better Regulation of Complementary Healthcare (2004) both made recommendations about the requirement for regulation, education and research to expand practitioners’ knowledge and to address the need for an overarching regulatory body. Nurses’ knowledge of CAM does not enable them to help patients make informed choices so curricular change if needed to address this. Nursing research is needed to provide scientific evidence of efficacy of the different CAM therapies. While the general public are increasingly using CAM, it remains controversial within mainstream health care. To counteract this is it necessary for professionals to understand CAM and to contextuahze it in terms of its historical, political and ethical frameworks, so that they can critically analyse whether these should be included in mainstream provision. This means examining published research and assessing their attitudes to CAM. Westwood (1991) states, that many therapies, such as aromatherapy, have historical usage and are centuries old.The Cochrane Collaboration (1999) defined CAM as, ‘…a domain of healing resources for all health systems, modalities. practices, theories and beliefs other than the politically dominant health system of a particular society or culture at a given period in history’. Ernst (1995) and Ernst and Cassileth (1998) suggest complementary therapies can be used to aid diagnosis, treatment or disease prevention and act as an adjunct to mainstream conventional medicine, while alternative medicine is a direct substitute for orthodox medicine. The HLSCST Report (2000) stated that five professions in group 1 — osteopathy, chiropractic, acupuncture, herbalism and homeopathy — had scientific credibility, were safe to use, were effective, and had professional accountability. They also stated that homeopathy carried the fewest inherent risks in its practice. Evidence-based practice, education and researcii The problems facing homeopathy being accepted into mainstream care centres on its inability to provide a scientific explanation of how its remedies work. But is this because it follows a different methodological approach to the one conventionally used by traditional medicine and should this bar it from further investigation? If patients positively acknowledge the benefits, then it may be time for the scientific community to assess the accuracy of these benefits by reviewing the evidence for efficacy and safety. Information on CAM therapies needs to be integrated into education courses for health practitioners so that practitioners working in health and social care can assess the benefits and contraindications using an evidence-based practice approach. Evidence of CAM efficacy using an empirical approach is inconclusive, even though some studies have met the Cochrane criteria (1999). In terms of proving CAM efficacy, both quantitative and qualitative methodological approaches should be used, as incorporation into the nursing curriculum means it is necessary to justify its inclusion in terms of patient outcomes. The main barrier to incorporation of CAM into mainstream heath care is the lack of evidence, but this barrier is also a way of ensuring that further research is undertaken. There is a need to widen practice through interprofessional and interagency working to open education opportunities to incorporate CAM therapies (Corner et al, 1995). At the same time, ethical, legal and accountability issues have to be addressed (Ernst et al. 2004). The problem is that adding to the curriculum by trying to integrate change into estabhshed practice brings resistance (Curtis and White, 2002). The Nursing and Midwifery Council Code of Professional Conduct (NMC, 2004) points out that any employer giving consent for nurses to practice complementary therapies must ensure practice is within the scope of professional practice and that professional body registration is obtained along with the patients’ informed consent. This is a major issue as nurses are notorious for working beyond their boundaries and embracing new opportunities (Burton, 2000; Cook, 2000; English National Board, 2001). It also brings in the need for CAM practitioners to embrace regulation if they wish to be included within mainstream provision. Conclusion The general population, as well as health professionals, are increasingly accepting the value of complementary therapies alongside conventional medicine. Michael Fox, Chief Executive of The Prince of Wales Foundation for Integrated Health, stated: ‘Complementary and conventional medicine can work safely alongside each other as long as there is effective communication bet^veen all practitioners as ^vell as between patients and practitioners. For patients to receive the best treatment, it is essential to make sure that complementary practitioners are aware of any conventional treatment they are having and that other health professionals are aware of any concurrent complementary treatments’ (Prince of Wales Foundation for Integrated Health, 2003 p2). This is one practitioner’s account of her discovery of CAM and the measures taken as a response to this. There is a place for CAM in mainstream healthcare provision, but there is also the need for further research. If nurses are to offer information about choice to patients then they themselves need an understanding of the choices available. One way of overcoming these concerns and increasing nurses’ knowledge and application of CAM is to include it in their professional education and training at both pre- and post-registration. liU3 British Journal of Nursing, 2006, Vol 15, No 7 357 Bechtel R (2004) Complcineiit.iry therapies in rehabilitation: evidence for efficacy in therapy, prevention, and wellness. ProQ»«( 84(10); 995-7 Burton C (2000) A description ofthe nursing role in stroke rehabilitationj/l(/r Nurs 32(1): 174-81 Cochrane Collaboration (1999) Cochrane Reviewers Handbook, 40. Cochrane Collaboration, London Cook L (2000) Triple integration nursing. Nurs Stand 14(52): 33-4 Corner j, Crawley N, Hildebrand S (1995) An evaluation of the use of massage ajid essential oils on wellbeing of cancer patients. IntJ Palliat Nurs 1(2): 67-73 Curtis E, White P (2002) Resistance to change: causes and solutions. Nurs Manage 8(10): 15-20 Department of Health (1999) National Service Framework for Mental Health: Modern Standards and Service Models. DH, London Department of Health (2000a) Vie NHS Plan. DH, London Department of Health (2001a) Government Response to the House of Lords Select Committee on Science and Technology Report on Complementary and Alternative Medicine (2000). DH, London Department of Health (2001b) National Service Framework for Older People. DH, London Department of Health (2003) Building on the Best: Choice, Responsiveness and Equity in the NHS. DH, London Department of Health (2004) Better Regulation of Complementary Healthcare. DH, London Department of Health (2005a) National Service Frameiuork for Children, Young People and Maternity Services. DH, London Department of Health (2005b) Supporting people with long- term conditions. DH, London English National Board (2001) Exploring the Role and Contribution of the Nurse in the Multi-professional Health Service. Circular 21 (2001) DH, London Ernst E (1995) The role of complementary and alternative medicine. Br MedJ 321:1133-35 Ernst E,Cassileth B (1998)The prevalence of complementary therapy/alternative medicine in cancer: a systematic review. Catuer 83(4): 777-82 Ernst E, Cohen M, Stone J (2004) Ethical problems arising in evidence based complementary and alternative niedicinej Med Ethics 30(2): 156-9 House of Lords Select Committee on Science and Terchnology (2000) Tlie House of Lords Select Committee Report on Complementary and Alternative Medicine. HMSO, London Lewith GT,BroomfieldJ, Prescott P (2002) Complementary cancer care in Southampton: a survey of staffand patients. Complement Tlier Med 10(2): 100-6 National Institute for Clinical Excellence (2004a) Improving Supportive and Palliative Care for Adults with Cancer. Tlie Manual. NICE, London National Institute for Clinical Excellence (2004b) Cuidance on Cancer Services: Improving Supportive and Palliative Care for Adults with Cancer. NICE, London Nursing and Midwifery Council (NMC, 2004) Code of Professional Conduct. NMC, London Prince ofWales Eoundation for Integrated Health (2003) National Cuidelitiesfor the use of ComplemetitaryTlierapies in Supportive and Palliative Care. Prince ofWales Foundation for Integrated Health, London. Washburn A (2000) Complementary therapies: a survey of NCI cancer patient educators. Cancer Pract 8(3): 143-4 Westwood C (1991) Arotnatherapy: A Guide for Hotne Use. Amberwood Publishing, Kent KEY POINTS I Healthcare professionals require an understanding of complementary and alternative medicine (CAM) to enable them to provide informed choice to patients. I The mainstream healthcare curriculum needs to adapt to include CAM into its provision. I CAM professional bodies need regulation to meet nationally recognized heaithcare standards. I Integrating CAM into mainstream healthcare provision requires further research to assess its efficacy. znternurse With over 9000 peer-reviewed clinical and professional articles, and more than half a million downloads in the last 12 months, /nternurse.com is the largest online nursing archive in the UK Log on and see what you’re missing illl MA Healthcare Ltd, Jesses Farm, Snow Hill, Dinton, Nr Salisbury, Wiltshire SP3 5HN tel 01722 716997 fax 01722 716926 MA HEAITHCARE UMIItD 358 British Journal of Nursing, 2006, Vol 15, No 7
The interpretation of research in health care is essential to decision making. By understanding research, health care providers can identify risk factors, trends, outcomes for treatment, health care c
1 This is an Open Access article distributed under the terms of the Creative Commons COVID-19 pandemic: from respect for science to investments in National Health Services Pandemia pela COVID-19: do respeito pela ciência ao investimento nos Serviços Nacionais de Saúde January 2020. The world has woken up to a worrying reality. The city of Wuhan, capital of the province of Hubei, China, was struggling with a new virus with enormous transmission capacity. COVID-19 is a severe respiratory disease caused by the Severe Acute Respiratory Syndrome virus (SARS-CoV-2), first identified in December 2019 in Wuhan (1). Given the potential seriousness of the situation caused by a vi – rus, about which very little was known, on January 30, 2020 the World Health Organization (WHO) declared a COVID-19 epidemic as a serious international pub – lic health problem. In March 2020, Chinese health au – thorities estimated that the number of people infected would be 80,174, with a total of 2,915 deaths (2). In fact, what most alerted the world was the spread of the virus in northern Italy. Not prepared to face a little-known virus, health professionals treat – ed the first cases without great precautions and as – ymptomatic people have spread the virus, mainly in large clusters. The huge number of infected people who already had severe respiratory symptoms such as dyspnea or pneumonia quickly exhausted the beds available in hospitals and intensive care units. Many health professionals died at that time. Given the free movement of people and goods, the virus has spread throughout the world, with worrying incidence rates in several countries. 1Escola Superior de Enfermagem do Porto, Centro de Investigação em Tecnologias e Serviços de Saúde – Universidade do Porto. Porto, Portugal. Corresponding author : Wilson Correia de Abreu Rua Dr. António Bernardino de Almeida, 4200-072 – Porto, Portugal. E-mail: [email protected] Wilson Jorge Correia Pinto de Abreu 1 How to cite this article:Abreu WJCP. COVID-19 pandemic: from respect for science to investments in National Health Services [Editorial]. Rev Rene. 2021;22:e61290. DOI: https://doi.org/ 10.15253/2175-6783. 202122 61290 EDITOR IN CHIEF: Ana Fatima Carvalho Fernandes Rev Rene. 2021;22:e 61290 . Rev Rene. 2021;22:e 61290 . DOI: 10.15253/2175-6783. 202122 61290 www.periodicos.ufc.br/rene Editorial 2 The situation deteriorated until the end of the first semester of the year, at least in the northern hemisphere. Two conclusions could be drawn from the analysis of the progression of the pandemic as fol – lows: no country had its health services prepared for such a situation; however, in countries with better-or – ganized national public health services, it was easier to implement complementary measures such as di – agnostic tests, epidemiological screenings, and strat – egies for breaking the chains of infection. Countries that had quality community backup services were better able to cope with the pandemic. No clinical picture has given rise to so many studies and evidence in such a short period of time. The different individual responses to infection and the lack of specific therapeutic regimens explained this investment, but despite all this effort, little is known about SARS-CoV-2. However, more is known today about this virus, alternative medications have been identified that (at least) decrease mortality, especially in intensive care units. In the mildest cases, the use of common drugs proved to be effective. In the most complex cases, remdesivir (used to deal with the mid – dle east respiratory syndrome – MERS-CoV), interfer – on, and dexamethasone have been identified as effec – tive despite the WHO only recognizing the therapeutic interest of the latter, as it showed that it could reduce mortality among ventilated patients by one third. However, the various agents have not always been successful in combating the pandemic. First, because many health systems were not prepared to face a small increase in the demand for healthcare – structures, human resources, and individual protec – tive equipment were lacking. More serious than that, they did not sufficiently emphasize measures that are currently most effective in combating the pandemic – correct use of masks, respiratory etiquette, social dis – tancing, and hand washing. These measures proved to be effective in the first phase of the pandemic. Some measures have proven to be effective and have taught us a lot about the pandemic. Total confine – ment, the closure of on-site training in schools, mea – sures at the level of catering and, above all, teleworking are examples of this. After the first outbreak, research has shown that we can implement containment mea – sures without isolating the elderly, who languish with cognitive degradation and lose functional capacity. We learned that when protected with correct measures, schools can remain open and do what guides their existence. Likewise, if hygiene and distance require – ments are met, markets, restaurants, and cultural in – stitutions can stay open. In terms of teleworking and distance learning strategies, we found that some are here to stay. In this second phase of the pandemic, which in many countries is being more dramatic than the first, we are able to perceive worrying situations at the level of societies. Many manifestations on social networks multiply unfounded negative perspectives, which call into question everything that science has already brought to us. Many protesters deny the benefits of so – cial confinement, refuse to wear masks, and insist on meeting in groups without any protection. For health professionals, many of whom lost their lives due to the infection, it is difficult to see how part of a generation that had the best available training is capable of show – ing such a level of illiteracy and, above all, selfishness. Until the emergence of an effective vaccine, which allows 70% of the population to be immu – nized, measures of social distancing, etiquette, and use of masks remain the most effective measures (3), accompanied by a public health backup to mass-test schools and nursing homes, and to break the chains of transmission. Total and prolonged confinement does not seem a good solution because it destroys the econ – omy and employment. On the contrary, temporary re – gional “lockdown” measures (three weeks) followed by periods of three to four months of partial confine – ment, with respect to measures of social distancing, etiquette, and mask use, continue to appear more ef – fective, as mathematical models of estimation reveal. We know that, someday, we will all die, but we Abreu WJCP Rev Rene. 2021;22:e 61290 . Abreu WJCP Rev Rene. 2021;22:e 61290 . 3 will fight this COVID-19 with determination. Until we have specific therapeutic measures and vaccines, we must stop the spread. Finally, we conclude that in health schools it is necessary to invest in catastrophe medicine, as we all believe that one day SARS-CoV-2 will be less present but other pathogens may appear, just as natural phenomena arise causing suffering in families and societies. References 1. Huang C, Wang Y, Li X, Ren L, Zhao J, Hu Y, et al. Clinical features of patients infected with 2019 novel coronavirus in Wuhan, China. Lancet. 2020; 2(15):497-506. doi: http://dx.doi.org/10.1016/ S0140-6736(20)30183-5 2. National Health Commission. Beijing: National Health Commission of PRC (NHC). New corona – virus pneumonia diagnosis and treatment plan (trial version 6) [Internet]. 2020 [cited May 20, 2020]. Available from: http://www.nhc.gov.cn/ xcs/yqtb/list_gzbd.shtml 3. Anderson R, Heesterbeek H, Klinkenberg D, Hollingsworth T. How will country-based mit – igation measures influence the course of the COVID-19 epidemic? Lancet. 2020; 3(21):931- 4. doi: https://dx.doi.org/10.1016/S0140- 6736(20)30567-5 Rev Rene. 2021;22:e 61290 . COVID-19 pandemic: from respect for science to investments in National Health Services Rev Rene. 2021;22:e 61290 . COVID-19 pandemic: from respect for science to investments in National Health Services
The interpretation of research in health care is essential to decision making. By understanding research, health care providers can identify risk factors, trends, outcomes for treatment, health care c
“Like I Have No Choice”: A Qualitative Exploration of HIV Diagnosis and Medical Care Experiences While Incarcerated and Their Effects Alexandra H. Kutnick a, Noelle R. Leonard a,b , and Marya V. Gwadz a,b aCenter for Drug Use and HIV/HCV Research, NYU Global College of Public Health; bSilver School of Social Work, New York University ABSTRACTIt is estimated that one in six Black and Latino adult persons living with HIV (PLWH) spend time in correctional institutions each year. Yet after release, PLWH of color evidence poor HIV health outcomes across the HIV care continuum. This study, guided by an ecological approach and Critical Race Theory, sought to understand the lived experiences of socioeco- nomically disadvantaged PLWH of color who received an HIV diagnosis and/or medical care while incarcerated, and the ways in which those experiences influenced engagement in medical care after release. Drawn from a larger study in Brooklyn, NY, in 2013–2016, a sub- set of 28 participants who received in-depth qualitative interviews were purposively sampled for a secondary analysis of participants who received an HIV diagnosis and/or med- ical care while incarcerated. Using an Interpretive Phenomenological Analysis, we found par- ticipant’s experiences were shaped by longstanding mistrust of the medical establishment. While incarcerated, lack of autonomy, substandard medical care, and poor social support exacerbated medical mistrust and avoidance of HIV medical care long after release. Engagement in HIV medical care and treatment were also impacted by a dynamic interplay of factors including substance use, prolonged periods of denial, poverty, and repeated bouts of incarceration. Given that experiences of HIV diagnosis and medical care while incarcer- ated have long-ranging, adverse effects, we argue that a better understanding of the ways in which PLWH of color experience HIV diagnosis and medical care while incarcerated may serve to inform intervention efforts within correctional institutions to improve HIV health outcomes. ARTICLE HISTORYReceived 1 October 2018 Revised 1 March 2019 Accepted 3 March 2019 KEYWORDScritical race theory; incarcerated populations; interpretive phenomeno- logical analysis; HIV care continuum; med- ical mistrust Introduction The epidemics of mass incarceration and HIV infec- tion are inextricably linked. The prevalence of HIV among those in correctional institutions is 3.5 times greater than it is for the general population. 1An esti- mated one in six (persons living with HIV) PLWH in the United States spends time in a correctional facility each year, 2the vast majority of whom are socioeco- nomically disadvantaged people of color. 3,4 Further, PLWH of color are overrepresented in correctional institutions largely because U.S. drug enforcement policies result in disproportionate arrests, prosecu- tions, convictions and sentences for drug offenses for Blacks and Latinos compared to whites. 5–6 Given the high incidence of HIV among incarcer- ated populations, the Center for Disease Control (CDC) recommends routine opt-out HIV testing of all individuals who enter a correctional facility as well as receipt of HIV medical care and antiretroviral therapy(ART) for those found to be infected with HIV or who present as HIV-positive upon arrival. 3,7 Thus, correctional institutions are uniquely positioned among HIV medical care settings to provide care along each step of the HIV care continuum, namely HIV testing, diagnosis of HIV, linkage to HIV medical care, retention in regular HIV medical care, prescrip- tion of ART, and sustained adherence to antiretroviral therapy (ART) resulting in viral suppression. 7,8 In fact, in a systematic review across 92 studies and 15 states examining HIV care before, during and after incarceration, Iroh et al. (2015) found that PLWH’s HIV health outcomes improved while incarcerated at every step of the HIV care continuum, even exceeding national averages. Yet postrelease, these outcomes plummet and dip below national averages at every step of the care continuum. 9 Maintaining HIV health outcomes for PLWH after leaving correctional institutions is critical for CONTACTAlexandra Kutnick [email protected] Center for Drug Use & HIV/HCV Research, New York University, 380 2nd Ave Rm 305, New York, New York, 10010-5656. 2019 Taylor & Francis Group, LLC BEHAVIORAL MEDICINE 2019, VOL. 45, NO. 2, 153–165 https://doi.org/10.1080/08964289.2019.1591338 individuals and as a public health strategy for prevent- ing forward transmission of HIV infection. Accordingly, a large body of research has documented the development of systems for linking former inmates to HIV medical care upon release. 9–12 A recent systematic review identified some successes with these interventions yet also found significant variability in their efficacy. Notably, women, African- Americans, and those with substance use disorders, are the least likely to benefit from existing interven- tions to link PLWH to HIV medical care after incarceration. 13 Medical mistrust The asymmetry in medical knowledge and power between medical providers and patients inherently places patients in a vulnerable position particularly in the face of disease or illness. 14 An overall sense of trust in the medical establishment serves to mitigate this sense of vulnerability and engenders expectations of the way in which medical providers deliver care. However, many people of color, particularly Blacks and Latinos, have high levels of mistrust in the med- ical establishment that profoundly influences their engagement in medical care. 14–17 This mistrust is strongly rooted in historical medical abuses of people of color and reinforced by present-day realities of sig- nificant health disparities. 14,17–19 Although medical mistrust has been conceptualized in a wide variety of ways, in the main, it refers to mistrust of medical pro- viders, systems, and treatments and exists on a spec- trum ranging from a belief that medical providers and/or systems do not prioritize patients’best interest to a belief that providers and systems are actively engaged in rendering harm. 14,15,18,19 The social stigmatization and political context of the 30 year old HIV epidemic coupled with the stark, disproportionate burden of HIV infection, morbidity, and mortality among people of color amplified a pro- found mistrust of the medical establishment and the formation of conspiracy theories among many people of color. 18,19 Mistrust in official sources of medical information about the origins, transmission, preven- tion, and the safety and efficacy of treatments of HIV have been found to be a potent barrier to engagement in medical care among across the HIV care con- tinuum. 15,17,20–22 A systematic review of African Americans’beliefs about HIV medical care by Gaston and Alleyne-Green (2013) found that experiences of racism, conspiracy beliefs, and the quality of provider relationships significantly impacted engagement inHIV medical care for a number of diverse samples of African-Americans. Further, medical mistrust is asso- ciated with low levels of readiness for ART and poor medication adherence among Black and Latino PLWH. 21,22 Although incarceration places individuals in a dependent and vulnerable position, this vulnerability may be exponentially heightened for people of color receiving HIV-related medical care in a correctional facility and profoundly impact their level mistrust in health care providers and systems. 23 Yet, with the exception of an early study that found incarcerated individuals have higher levels of mistrust in health care providers relative to community samples, 24 there is a dearth of research examining medical mistrust among individuals with a history of incarceration, and none to our knowledge examining the experience of PLWH of color receiving HIV testing and treatment while incarcerated. The present study aims to fill this important gap by eliciting the perspectives of PLWH of color regarding their experiences receiving an HIV diagnosis and/or medical care while incarcerated and the ways in which these experiences may have influ- enced their engagement in HIV medical care after release. Guided by an ecological approach which views experiences as embedded in multiple contexts. 25 This qualitative study is further informed by Critical Race Theory, a trans-disciplinary theoretical framework that aims to expand the discourse about complex racial concepts by eliciting the lived experiences of people of color. 26–27 Methods The present study is a secondary analysis of qualita- tive interviews from a larger study and draws on qualitative interview data with 28 Black and Latino adults living with HIV who received an HIV diagnosis and/or HIV medical care while incarcerated. Data col- lection for this study took place between 2013 and 2016 in Brooklyn, NY. The study received ethical approval from the New York University Langone School of Medicine Institutional Review Board. 28 Brief description of the larger study The larger study used respondent driven sampling (RDS) 29 in a well-defined, high-risk area (HRA) within Brooklyn, the borough in New York City with the highest heterosexual HIV prevalence at the time of the study. Eligibility criteria included: age 18–60 years; sexually active (vaginal and/or anal sex) 154 A. KUTNICK ET AL. with at least one opposite sex partner within the pre- vious year; reside in the designated HRA in central Brooklyn; Black or Latino race/ethnicity; comprehen- sion of English or Spanish; and not actively psychotic based on a standard screening instrument. 30 All participants engaged in a quantitative, struc- tured baseline assessment lasting 60–90 min on socio- demographic and health history variables including incarceration history and HIV health characteristics. Following all other study activities, a total of (N¼68) semistructured, qualitative interviews were conducted in-person, and lasted approximately 60–90 minutes. Participants signed informed consent for all study activities and were compensated $30 plus funds for round-trip local transportation for the quantitative assessment and qualitative interview. The larger study procedures and outcomes have been described else- where . 28,31–33 Eligibility criteria for the present study The present study drew on transcripts from a subset of those who received qualitative interviews in the larger study. We included those: (1) who were HIV- infected, confirmed through HIV testing or medical documentation; and (2) reported receiving HIV med- ical care, including a diagnosis of HIV, while incarcer- ated within the criminal justice system. We determined this second criterion as follows: Participants were identified as ever having been incar- cerated by the following item in the quantitative base- line assessment:“Have you ever been held in a detention center, jail, or prison for more than 24 hours?”To ensure that participants’experience of incarceration occurred since being infected with HIV, we screened participants using the following question from the qualitative interview:“Since testing positive for HIV, where have you received HIV medical care, including HIV medical care following HIV-testing? Probe: While incarcerated?”Based on these criteria, a total of 28 participants were included in the present study. (SeeFigure 1for an overview of the sam- pling frame.) Qualitative interview The qualitative interview followed a semistructured guide that aimed to elicit participants’perspectives on their experiences of receiving an HIV diagnosis and/ or HIV-related medical care while incarcerated. These questions were embedded in a larger interview about participants’experiences of their HIV diagnosis andhistory of engagement in HIV medical care. Grounded in an ecological framework, the interview guide sought to explore individual and contextual influences on participants’experiences (ie, substance use, relationship with healthcare providers, access to medical care, HIV stigma, and medical mistrust). Interview questions included main questions and probes, and the interviewers were encouraged to attend to emergent themes. Interviews were audio- recorded and professionally transcribed verbatim. All identifying information was removed from the tran- scripts and only pseudonyms are presented. Interviewing team and positionality The qualitative interviewing team was comprised of six female Masters and doctoral-level research study staff from diverse racial/ethnic backgrounds (Black, White, Latina, and Asian), all trained in qualitative interviewing methods. Positionality challenges related to gender, race/ethnicity, power, socioeconomic status, and privilege were intentionally addressed throughout the data collection process through regular supervision and training. Qualitative data analysis Interpretative Phenomenological Analysis (IPA) 34–35 was the qualitative analytic approach used for this study, as IPA is committed to exploring how people make sense of their own experiences and emphasizes the context where this meaning-making occurs. 34 In keeping with IPA’s idiographic approach, each inter- view was first analyzed individually, 35 which allowed for the inductive development of themes first within and then across interviews. The next stage of data analysis involved looking for patterns across cases. This process was lengthy, involved many iterations and was guided by Smith and colleagues (1999)’s ana- lytic approach 33 including the following techniques for cross-case analysis: (1)abstraction,where one puts similar themes together and then develops a new name for the cluster; (2)subsumption, where an emer- gent theme itself becomes a master theme as it draws other related themes towards it; (3)polarization, where one examines transcripts for oppositional rela- tionships; (4)numeration, where one examinesthe fre- quency with which a theme is supported; (5)function, where themes are examined for their function and finally; (6)contextualization,where the contextual ele- ments within a narrative are identified. Each of these techniques were used to varying degrees, and themes BEHAVIORAL MEDICINE 155 were depicted in the narrative when they were deemed primary when discussed by numerous participants. We assessed validity using Yardley’s (2008) guide- lines 36 for ensuring validity in qualitative research, which is recommended for assessing validity within an IPA approach. 37 The full analytic team comprised of two data analysts, one of whom was also an inter- viewer, and senior research staff, including the PI and Co-I, who formed an“interpretive community.”The analytic team engaged together in an iterative data analytic process guided by Yardley (2008), 36 namely meetings to discuss the most frequent and resonant themes, relationships among codes, and their explicit and underlying, latent meanings. Methodological rigor of the analysis was maintained through an audit trailof process and analytic memos and periodic debriefing with the larger research team, which included experts in HIV testing and treatment, HIV-stigma, criminal justice-involved populations and social and economic inequities. Data were analyzed with the assistance of Dedoose software, 38 for qualitative data analysis. Quantitative measures in the baseline assessment Sociodemographic characteristics Using a structured instrument, the following were assessed through self-report using single item questions with open-ended items and coded responses: age; race; gender; educational attainment; employment status; relationship status; family composition; financial Figure 1.Overview of the sampling frame 156 A. KUTNICK ET AL. insecurity (ie, unable to pay for necessities in the past year); health insurance; past and current housing instability (that is, whether has ever been homeless and is currently homeless);Incarceration history, including lifetime and recent incarceration (ever incarcerated and if so, whether incarcerated in the past year) as well as times incarcerated over the course of one’slifetime. Problematic drug and alcohol usewere assessed for lifetime and recent use, through the Texas Christian University Drug Screen (TCU Drug Screen) and Alcohol Use Disorders Identification Test (AUDIT) measures. The TCU measure has nine items and is coded dichotomously with yes/no responses and established cutoff values for problematic levels of drug use. 39 A sample TCU item is:“Did you try to control or cut down on your drug use but were unable to do it?”(a¼0.91). The AUDIT, a self-report screening instrument developed by the World Health Organization (WHO) 40 to assess problematic alcohol use, is a 10-item measure with a 5-point Likert scale. A sample AUDIT item is:“How often during the last year have you failed to do what was normally expected of you because of drinking?”(a¼0.89). Both the TCU and AUDIT are widely used assessment instruments for PLWH populations. 41 Medical Mistrustwas assessed through the 7-item Medical Mistrust Index (MMI). 42 The MMI assesses mistrust of healthcare organizations as opposed to mistrust of individual healthcare providers. It is coded on a 5-point Likert scale, ranging from“Strongly Disagree”to“Strongly Agree.”A sample MMI item is: “Patients have often been deceived or mislead by healthcare organizations”(a¼0.92). HIV health characteristicswere assessed through self-report using single item questions with open- ended items and coded responses. The variables assessed included: years since HIV diagnosis; as wellas HIV disease progression biomarkers, specifically current CD4 count and HIV viral load. For the quan- titative data, data were analyzed using descriptive sta- tistics including counts, percentages, means, and SDs. All quantitative analyses were conducted in theRstat- istical computing environment. Results Sample characteristics As shown inTable 1, participants in this sample were mostly male (60.8%), were 47 years old, on average (SD¼7.12 years) and primarily Black (78.6%). Most of the participants had children (96.4%) and were mar- ried or in long-term relationships (92.9%). In terms of socio-economic characteristics, the vast majority of participants (92.9%) were unemployed, and three- fourths (75.0%) of participants were unable to pay for basic necessities in the past year, an indication of extreme poverty. In terms of incarceration histories, most participants had extensive involvement with the criminal justice system, as they had been incarcerated in their lifetimes an average of 8.19 times (SD¼6.64), and 17.9% had been incarcerated in the past year. Further, the vast majority of the participants who comprised the sample (96.4%) met criteria for lifetime histories of problematic drug and alcohol use based on AUDIT and TCU criterion. Regarding medical mistrust, as shown inTable 2, based on the MMI index, there was much variability in participants’current attitudes towards healthcare organizations and whether they trust healthcare organizations. Notably, 50% (n¼14) of participants endorsed the statement:“When healthcare organiza- tions make mistakes, they usually cover it up.” Further, 46.4% (n¼13) of participants endorsed the following items:“You’d better be cautious when Table 1.Socio-demographic characteristics (N¼28). %(n)orM(SD) Female39.2% (11) Male60.8% (17) Age in years47.0% (7.12) Black, Not Hispanic 78.6% (22) Latino/Hispanic21.4% (6) Married or in long-term relationship 92.9% (26) Has children96.4% (27) Unemployed92.9% (26) Currently on Medicaid 89.3% (25) Unable to pay for basic necessities in past year 75.0% (21) Ever homeless71.4% (20) Currently homeless7.1% (2) Lifetime number of times incarcerated (>24 hours) 8.19 (6.64) Incarcerated in the past year for>24 hours 17.9% (5) Diagnosed with HIV while incarcerated 60.7% (17) Lifetime history of problematic drug use or alcohol use (TCU & AUDIT criterion) 96.4% (27) Current problematic drug or alcohol use (TCU & AUDIT criterion) 28.6% (8) BEHAVIORAL MEDICINE 157 dealing with healthcare organizations”and“Patients have often been deceived or mislead by healthcare organizations,”suggesting that many participants in the sample struggled with mistrust of the medical establishment. Further noteworthy is the fact that the MMI Index asked about trust in healthcare systems in general, and did not ask specifically about mistrust in healthcare systems in correctional institutions. Regarding the HIV health characteristics of the sample, the participants had been living with HIV for 14.14 years (SD¼8.01) on average and 60.7% were diagnosed with HIV while incarcerated. Further, 67.8% (n¼19) reported currently being on ART. In terms of self-reported CD4 count, participants reported an average of 482.57 cells/mm 3(SD¼341.83) with a range of 1–1,249. Of the 28 participants in the sample, 39.3% (n¼11) reported being virally sup- pressed. Data is also shown inTable 3. Overview of qualitative findings We found that participants’experiences of HIV med- ical treatment within correctional institutions mark- edly impacted their trust in mainstream medical providers and HIV treatment, and served as a lens through which health behaviors and health care choices were made long after release. Two overarching multifaceted themes emerged from our analyses. First, we found a unique constellation of factors associated specifically with the experience of being incarcerated, including: (1) the lack of autonomy; (2) medical care experienced as substandard; and (3) poor social sup- port, which amplified feelings of stigma. These factors appeared to compound upon each other and exacer- bated experiences of mistrust of the medical establish- ment, particularly mistrust of ART, which in turn,contributed to difficulties maintaining engagement in HIV medical care after release. Second, we found that substance use played a pivotal role in complicating participants’experiences of HIV-related medical care. In particular, we found that for most participants, lengthy periods of denial of HIV status were mutually reinforced by the synergistic effects of substance use, poverty and its consequences, and repeated bouts of incarceration and, all of which, taken together, com- pounded medical mistrust and derailed participants’ engagement in HIV medical care after release. Next, we unpack these themes that emerged regarding expe- riences of HIV diagnosis and HIV-related medical care within the criminal justice health care system, and elucidate the long-ranging adverse effects these experiences had on participants’health and well-being after their release. Unique constellation of factors associated with incarceration and their compounded effects Lack of autonomy We found that the lack of autonomy that is charac- teristic of incarceration challenged the HIV medical care experiences for participants in our study, and reverberated in their health care choices after release. In particular, we found that participants who received their HIV diagnosis while incarcerated were especially affected by the lack of autonomy they experienced Table 2.Medical mistrust index (N¼28). Items Strongly Disagree % (n) Disagree % (n) Neutral % (n) Agree % (n) Strongly Agree % (n) You’d better be cautious when deal- ing with healthcare organizations21.4 (6) 7.1 (2) 25 (7) 28.6 (8) 17.9 (5) Patients have often been deceived or mislead by healthcare organizations10.7 (3) 21.4 (6) 21.4 (6) 25 (7) 21.4 (6) When healthcare organizations make mistakes, they usually cover it up14.3 (4) 14.3 (4) 21.4 (6) 35.7 (10) 14.3 (4) Healthcare organizations sometimes do harmful experiments on patients without their knowledge14.3 (4) 25 (7) 28.6 (8) 25 (7) 7.1 (2) Healthcare organizations keep your information private7.1 (2) 14.3 (4) 35.7 (10) 32.1 (9) 10.7 (3) Sometimes I wonder if healthcare organizations really know what they are doing0 (0) 25 (7) 39.3 (11) 25 (7) 10.7 (3) Mistakes are very common in health- care organizations10.7 (3) 21.4 (6) 32.1 (9) 14.3 (4) 21.4 (6) Note. Item is reverse-coded. Table 3.HIV Health characteristics (N¼28). HIV Health Characteristics % (n)orM(SD) Years since HIV diagnosis 14.14 (8.01) Ever been prescribed ART 82.1% (23) Currently on ART 67.8% (19) Virally suppressed 39.3% (11) CD4 cells/mm 3 482.57 (341.83) 158 A. KUTNICK ET AL. during such a traumatic and vulnerable time as an HIV diagnosis. Participants diagnosed with HIV while incarcerated described their experiences of both HIV- testing and diagnosis as harsh and coupled with a lack of agency regarding their ability to obtain information and make informed decisions about their healthcare. Participants commonly noted they did not feel empowered to ask questions about the process of HIV testing, nor about the implications of an HIV diagno- sis on their health. For example, Joseph, a 52-year-old man who had been incarcerated twice, recalled his experience of being diagnosed with HIV while incar- cerated as follows: “[In prison], the nurse first saw me because they tested me, the swab first. Then they called me back to inform me they needed blood. But I didn’t know what for, I mean I felt, I really felt confused, I didn’t know what was going on. But just went along because I didn’t have no choice.” Further, after Joseph tested positive for HIV while incarcerated he was prescribed HIV medication to treat his HIV disease within the prison health- care system. “When I first started taking the meds in prison, the nurse told me, oh, you’re probably going to be used to it in a couple of days, like the side-effects, and it being okay, but it was more like years. They just say anything to get you to do what they want.” Joseph describes feeling coerced into getting tested for HIV and once diagnosed with HIV experienced a sense of resignation as to his lack of ability to make decisions about his health care. These experiences left Joseph not only with mistrust of his particular medical providers within the prison healthcare system, but also fostered his suspicion of the HIV medications he was prescribed. In addition, as with Joseph, it is noteworthy that not one of the participants in the sample mentioned the process of being consented for HIV-testing, nor alluded to any pre- or post-test HIV counseling when describing their experiences of HIV testing and diag- nosis while incarcerated. In New York State, where all of the participants were incarcerated, HIV testing is voluntary and must be offered to every inmate at the time of their initial medical evaluation in the correc- tional facility and includes a process of informed con- sent and medical treatment, if found positive. 43 Furthermore, when participants were asked to describe what factors may have facilitated their suc- cessful engagement in medical care after release from prison, the vast majority of participants in the study invoked the critical importance of maintaining theirautonomy to decide whether or not to engage in HIV medical care after release. For example, Helen, a 49- year-old woman who had been incarcerated five times, asserted the following regarding her decision to take HIV medication after her release: “I’m a grown person. I can make my decision, I don’t want to—I don’t want to. I have a choice to say yes or no.” Experiences of medical care as substandard Our analyses demonstrated that in addition to experiencing a lack of autonomy in the context of receiving HIV medical care while incarcerated, the majority of the participants also viewed HIV medical care within the prison healthcare system as substand- ard. Many participants described HIV healthcare experiences where providers failed to educate them about their HIV disease and available medical options, as well as neglected to appropriately inform them about what treatment involved. For example, Jose, a 55-year-old man who was incarcerated once, con- trasted his experiences of HIV medical care within the prison health care system to HIV medical care experi- ences outside of prison, as follows: “You know, I went to jail, did two years, but as you get older, you get wiser you know. I don’t wanna die in jail, I’m 55 years old. [Chuckles] I got friends that died in jail from the virus too. They don’t treat you well in jail. They don’t give you the right treatment. Out here there is a better treatment than there.” Jose further articulated how feeling uncared for within the prison healthcare system led to suspicion about the effectiveness of the HIV medication treat- ments among his friends. Jose attributed his friends’ deaths from AIDS to their decision to abstain from HIV medications they could not trust, as he stated the following: “Because, I got friends that died of AIDS in there, you know. They wasn’t taking their medicine because they didn’t know what it was. [It’s] hard in there [in jail], no one cares about you.” Moreover, a theme that emerged among a number of the female participants in the sample, was that their husbands’experiences of substandard HIV medical care while incarcerated greatly affected them as well. For example, Lily, a 50-year-old woman who had been incarcerated three times and who contracted HIV from her husband after he was diagnosed with HIV while incarcerated, recalled the following: “And that’s when I started crying. I said, oh my god. I always protected myself but you know, my husband was in and out of jail. And one time when he came out of jail, he had a bunch of medication he hadn’t BEHAVIORAL MEDICINE 159 taken’cause he didn’t know how to read no English. And there was a list, and I read it. Carlos is diagnosed with AIDS, and the medication, blah, blah. How many times a day. A whole bunch. But my husband, he didn’t know what was going on, couldn’t read no English, and didn’t do nothing with those medication.” As described above, Lily had only surmised that her husband had been diagnosed with HIV because of paperwork and unused HIV medication she found after he was released. Further, Lily described her hus- band as having received substandard HIV medical care while incarcerated where he did not receive basic, yet critical health education such as dosing schedules of prescribed HIV medication regimens that he could understand. Consequently, Lily believed that as a result of the substandard HIV medical care her hus- band received while incarcerated, he left prison unable to manage his HIV disease. Poor social support Findings indicated that inadequate social support while incarcerated was widespread for participants in our study, and operated in conjunction with the above-described factors to impair participants’abil- ities to successfully engage in medical care. We found that poor social support primarily stemmed from two reasons: (1) participants socially isolated themselves due to fear of HIV stigma and discrimin- ation; and (2) participants had limited contact with their closest support systems. In fact, participants described HIV stigma as pervasive within criminal justice institutions, and reported that while incarcer- ated, stigma exacerbated their social isolation, dis- tress and lead to their avoidance of HIV medical care. For example, Louis, a 46-year-old man who had been incarcerated five times recalled how as a result of HIV stigma, he would not disclose his HIV status to anyone in prison nor engage in HIV med- ical care: “In prison I didn’t tell no-one. Don’t take no medication. Because I don’t want to tell nobody because the discrimination part that comes with it, you know what I mean, and I won’t be I comfortable with that. Better not to tell no one your business.” In addition, because of the way medication is dis- pensed in prison, taking HIV medication was particu- larly fraught and lead participants to further socially isolate themselves, as Helen described: “I wanted to be treated just, you know, the same as anybody else. Because, in jail, everyone knows that you taking medication…you can see that people look at you kind of different. I would walk by sometime, and everyone talking, and whispering, and looking. And, I know they talking about it, about my being HIVpositive. So I kept to myself. I am not going to be treated that way, you know. No I am not.” Furthermore, because participants were separated from their closest support systems while incarcerated, they missed vital social support in managing the emo- tional implications of receiving a diagnosis of HIV, including dealing with the implications of the disease process and challenges associated with treatment. For example, Clark, a 45-year-old man who had been incarcerated ten times and was diagnosed with HIV while incarcerated recalled his experiences of social isolation in prison, and its consequences, as follows: “You know, when I go to jail, I don’t have nobody. Nobody to talk to about it [HIV infection] or to help me out with meds. I’m walking around—no mom, no brothers and sisters, no cousins, you know, that was real hard.” Participants’experience of social isolation and HIV stigma while incarcerated was not only commonplace, but also detrimental, as poor social support often lead to avoidance of HIV medical care. Furthermore, the effects of social isolation while incarcerated are nested within an overall context of medical mistrust, as described before. Hence, it is notable that none of the participants described having supportive relationships with medical providers while incarcerated that could have potentially buffered the effects of stigma they experienced. Rather, it was only after release from incarceration, that any of the participants described establishing trusting and positive relationships with providers that facilitated their ability to get educated about HIV, accept their diagnosis, and learn to man- age their disease. For example, Sarah, a 45-year-old woman who had been incarcerated five times and was diagnosed while incarcerated, recalled the following: “Like—it was like right after I was diagnosed, and they didn’t educate you that much in jail. So, whatever bits and pieces you heard was like, basically, bits and pieces you heard. I didn’t become—start getting educated till I came home and I got with the doctor I like, and so that was my opening to knowing some things, and learning how to accept this virus and take my medication.” Prolonged denial of HIV status Results of our analysis revealed that the vast majority of participants in this sample struggled with accept- ance of their HIV status. In particular, we found that those participants who received their HIV diagnosis while incarcerated experienced particularly lengthy periods of denial of their HIV status, ranging from 3 160 A. KUTNICK ET AL. to 23 years, which especially challenged their postre- lease HIV medical care. For example, Darren, a 44- year-old man who has been incarcerated six times and who was diagnosed with HIV while incarcerated five years prior to his interview, relayed the following: “What entered my mind when they say it, I don’t believe it. They say it’s true, I don’t believe it and I am going to keep living my life, been living my life and it worked for me to this day. It has been working for me, still never been hospitalized, no complications. So no medicine, none of that.” Darren did not believe his HIV diagnosis when he received his test results while incarcerated, and five years later continues to struggle with this belief, as his experience of his health stands in contrast with this knowledge. Essentially, Darren trusted his own experi- ence more than he trusted the medical information he was provided; as a result Darren did not believe he needed to be treated with antiretroviral medication. Further, Shirley, a 55-year-old woman who was diagnosed with HIV while incarcerated and has been incarcerated five times in total, described her own lengthy process of denial as follows: “Well, actually—I actually found out in‘90 when I was on Riker’s Island [where she was incarcerated], but, you know, they didn’t really tell me what was going on, and it go (in) one ear and out the other, so when I got out, I did many, many, many, many, many, many drugs and really didn’t care, really didn’t believe it, until this year [in 2013].” Shirley experienced a particularly long period of denial following her HIV diagnosis while incarcerated. She reported that her medical providers within the criminal justice system failed to fully inform her about what was going on while she was diagnosed and that she was unable to cognitively or emotionally process her diagnosis. In addition, Shirley emphasized how following her release, her substance use reinforced and compounded her denial, a theme that emerged in this study that will be explored in greater detail next. The contribution of substance use One of the most widespread themes that emerged in this study was the pervasive, negative influence of substance use on participants’lives. As described pre- viously, the vast majority of the participants in this study had histories of substance use disorders. We found that the mechanisms through which substance use adversely influenced participants’experiences of HIV diagnosis and medical care within the prison health care system were numerous and complex. Chiefamong them were: (1) substance use leading to increased criminal justice involvement and repeated bouts of incarceration; and (2) substance use com- pounding denial of HIV status and exacerbating avoidance of medical care after release. For example, Clark described how after a long, nonlinear struggle with substance use, it took him many years, many dif- ferent experiences of incarceration, HIV testing, peri- ods of denial, and reckoning with his HIV diagnosis before he was able to begin to successfully engage in HIV medical care. “So I think maybe-maybe the first time [I tested for HIV]—the first time maybe was around 1998-1999 at Riker’s [where he was incarcerated], or then like 2000- 2000 or something, then the second time maybe was around 2005 or 2006 something like that while I was at Riker’s again. And that’s when I really start[ed] thinking about it, but I still didn’t really. I went to the doctor and stuff and then I didn’t go back. And then I started back using [drugs] again and that’s where that I stopped taking my (HIV antiretroviral) medication. I am clean now and go to the doctor…but it’s still hard.” Further, we found that for many participants, struggles with substance use intersected with a host of other difficulties including repeated bouts of incarcer- ation, child welfare involvement and HIV diagnosis that compounded their challenges with managing their health and well-being. For example, Donna, a 49-year- old who has been incarcerated nine times, recalled how she received her HIV diagnosis while incarcerated: “When I first found out I was positive, I was pregnant actually. I had a baby and uh she was premature by one month. They tested the baby and she was HIV positive and I have it. I lost um the baby, you know. She went into foster care and then eventually got adopted. I really lost custody because I went to jail and he (her partner) went to jail. I think if I was out, I would’ve got on the program. I would’ve got her back—you know what I’m saying? But that-that jail time, that’s what really messed it up for me.” Certainly Donna’s experience of her HIV diagnosis while incarcerated was difficult, as she attributed the loss of her infant to the child welfare system as due to her being incarcerated and unable to access substance use treatment. Notably, child-welfare involvement as a result of incarceration due to substance use was a fre- quent experience described by the female participants in this study. Further, Donna described a number of years where following her diagnosis she also experi- enced homelessness as part of a vicious cycle of sub- stance use and repeated bouts of incarceration she struggled with, as she recalled: BEHAVIORAL MEDICINE 161 “I was homeless. I was on the street. I slept on roofs. I, you know, going back and forth to jail. There was a period of a few years after finding out [my HIV status] where I was going to jail, back and forth, and that’s not the place to be. It’s depressing. Jail is really depressing, you know. And every time you turn around you’re going back there. I was using [drugs] and going back and forth to jail.” Moreover, in addition to Donna, housing instability was an issue for many of the participants in the study, and contributed to many participants’difficulties with successfully engaging in HIV medical care. For example, Clark described how as a result of subsidized housing regulations, his court-mandated substance use treatment caused him to lose his housing, which not only caused him distress, but also lead to difficulties managing his health, as follows: “The last time I had got arrested the judge wanted to put me in like a long-term [substance use treatment] program. But I was like how can I go on a long-term program and keep my apartment? I had friends and stuff that when they went to [a long-term] program, they lost everything because they had Section 8 [federal housing subsidy]. So I didn’t want to lose my Section 8. But I did. Ain’t got nothin now that I’m out. And I get stressed out really, because how much I want my own house, you know. Hard to take care of myself, like with my meds now [without my own house], you know” Like many participants in the study, Clark faced enormous obstacles to successfully managing his HIV disease, including complex structural barriers associ- ated with substance use treatment, housing, incarcer- ation, and poverty that left Clark with little autonomy and increased stress. Certainly, for the participants in this study, under- standing the significance of the experience of being diagnosed with HIV/and or receiving HIV medical care while incarcerated requires an appreciation of the larger context where participants reside. As described, the context for the participants in this study is one of severe socioeconomic disadvantage where frequent incarceration, substance use, homelessness and med- ical mistrust are pervasive, and severely complicate participants’abilities to successfully manage their HIV disease. Discussion The present study explored the experiences of a highly vulnerable sample of PLWH of color who received an HIV diagnosis and/or medical care while incarcerated and continue to struggle with maintaining positive HIV health outcomes after release. We used an in-depth qualitative methodology to elicit the perspec- tives of PLWH of color with histories of incarceration and found that participants’experiences of HIV med- ical-care while incarcerated were influenced by a com- plex and dynamic interplay of factors at all levels of the social ecology. Our findings indicated that all participants in our study experienced a heightened level of vulnerability and powerlessness receiving HIV medical care while incarcerated which, to varying degrees, appeared to affect their level of medical mistrust and their health status months and years after release. Importantly, we found that participants’experiences with correctional medical providers did little to engender trust in the veracity of their diagnosis of HIV or the necessity, safety, and potential outcomes of the treatments pro- vided by these providers and may have hardened their medical mistrust once they were released. Further, these experiences appeared to drive participants’need to maintain a strong sense of autonomy about their health care choices after release, for many, to the det- riment of their health. Although participants’ responses on the quantitative measure of present-day mistrust of medical systems yielded some variability in the level of mistrust, many participants were quite ambivalent about engaging in HIV-related medical care or firmly decided not to engage in care despite the consequences to their health. These beliefs were reflected in their health care status as only 19 of 28 participants in the sample were on ART, and of those, only 11 were virally suppressed. In contrast to participants who entered a correc- tional facility with a previously known HIV infection, we found that those who received their initial diagno- sis of HIV while incarcerated (60.7%), had an espe- cially difficult experience with long-ranging adverse effects. Consistent with other studies, 33,44–48 we found that many participants experienced HIV diagnosis as a traumatic stressor and reacted to their HIV diagno- sis with difficulties cognitively processing any HIV education provided while incarcerated, 45 as well as with denial 32 and numbing responses such as prob- lematic substance use. 44,46 Receiving an HIV diagnosis can be traumatic and overwhelming in the best of cir- cumstances but incarceration likely worsens this experience due to social isolation, 48 amplified HIV- stigma, 49 loss of autonomy, 50 and substandard medical care. 22 Based on these findings, clinicians who treat PLWH of color who have received an HIV diagnosis while incarcerated should be aware of and have an understanding that an HIV diagnosis can be trauma- tizing, particularly under the unique circumstances of 162 A. KUTNICK ET AL. being diagnosed with HIV while incarcerated. In add- ition, for providers within the correctional healthcare system, special considerations surrounding HIV test- ing and counseling should be accounted for, including ensuring pre-and posttest counseling processes pro- motes PLWH’s autonomy. 50 Essentially, interventions that emphasize autonomy for PLWH of color, as well as appreciate and account for the challenges of doing so within a context of mistrust, are sorely needed. Moreover, given the nexus of mass incarceration and HIV, the contextual influences in the lives of PLWH of color are critical to consider. Our findings indicated poverty and its effects were both ubiquitous and detrimental and its impact on participants in this sample cannot be overstated. In addition, given that participants in our study were incarcerated an average of eight times over the course of their lifetimes, we view the context of incarceration as being an all too common experience for many PLWH of color, and accordingly, is a context that is crucial for future research to explore and understand. As such, using an ecologic 24,25 and CRT framework 26,27 proved to be useful for exploring experiences of HIV medical care while incarcerated, as they attend to salient contextual factors that affect PLWH of color’s experiences such as medical mistrust. Limitations This exploratory study was unable to address sev- eral key confounding factors related to experiences of HIV diagnosis and medical care within the criminal justice system, most notably evidence of resilience, gender dynamics, and mental health concerns, as well as key variations in provision of HIV medical care over time and across settings such as in jails versus prison. 51 Further, our purposive sampling method may limit its generalizability to the population of PLWH of color who have been incarcerated in New York State. In addition, the sample was more homo- genous with respect to age, and included more Black than Latino participants than anticipated, which may limit its representativeness. Further, as a secondary analysis, saturation of themes was not reached, in par- ticular, questions about HIV medical care and diagno- sis experiences while incarcerated were embedded in larger qualitative interviews, which did not explicitly focus on incarceration. Relatedly, this study had a larger sample size than is typical for IPA studies (N¼28). 35 However, given the aims of this study, in order to develop an in-depth interpretation of the data, as well as the fact that there was variability in the quality of the interviews, the sample size was ultimately appropriate for the present study, as therewas no disadvantage evident in using all 28 available transcripts. In addition, the reliability of retrospective data and self-reported health behaviors is not known, and as with many studies of health behaviors and fac- tors that are perceived as stigmatizing, such as sub- stance use, incarceration, and HIV itself, it is possible that social desirability factors prevented participants from fully disclosing their behaviors. Finally, the cross-sectional nature of the design does not allow for an exploration of patterns over time that could pro- vide a broader understanding of participants’percep- tions of their experiences of HIV medical care while incarcerated and its impact. Conclusions The present study extends the literature on the lived experience of PLWH of color receiving an HIV diag- nosis and/or medical care while incarcerated, a highly vulnerable population at high-risk for poor HIV health outcomes. Our study findings highlight the way in which a complex and dynamic interplay of individ- ual-level and contextual factors such as loss of auton- omy, negative healthcare experiences and associated medical mistrust negatively affect PLWH of color who have received HIV medical care while incarcerated after release. These findings have important implica- tions for improving HIV medical care in correc- tional settings. Funding The study was supported by the National Institute on Drug Abuse. Conflict of interest No potential conflict of interest was reported by the authors. References 1. Maruschck L.HIV in Prisons, 2001–2010. Washington, DC; 2012. 2. Spaulding AC, Seals RM, Page MJ, Brzozowski AK, Rhodes W, Hammett TM. HIV/AIDS among inmates of and releasees from US correctional facilities, 2006: declining share of epidemic but persistent public health opportunity. Litvintseva AP, ed.PLoS One. 2009;4(11):e7558. doi:10.1371/journal.pone.0007558. 3. Centers for Disease Control and Prevention. HIV Testing Implementation Guidance for Correctional Settings 2009. 4. Scheyett A, Parker S, Golin C, White B, Davis CP, Wohl D. HIV-infected prison inmates: depression and BEHAVIORAL MEDICINE 163 implications for release back to communities.AIDS Behav. 2010;14(2):300–307. 5. Blankenship KM, Smoyer AB, Bray SJ, Mattocks K. Black-white disparities in HIV/AIDS: the role of drug policy and the corrections system.J Health Care Poor Underserved.2005;16(4):140–156. doi:10.1353/ hpu.2005.0110. 6. Mauer M. Addressing racial disparities in incarcer- ation.Prison J. 2011;91(3):87S–101S. 7. Westergaard RP, Spaulding AC, Flanigan TP. HIV among persons incarcerated in the USA: a review of evolving concepts in testing, treatment, and linkage to community care. Curr Opin Infect Dis. 2013;26: 10–16. 8. Gardner EM, McLees MP, Steiner JF, Del Rio C, Burman WJ. The spectrum of engagement in HIV care and its relevance to test-and-treat strategies for prevention of HIV infection.Clin Infect Dis. 2011; 52(6):793–800. 9. Iroh PA, Mayo H, Nijhawan AE. The HIV care cas- cade before, during, and after incarceration: a system- atic review and data synthesis. Am J Public Health. 2015;105(7):e5–e15. 10. Rich JD, Beckwith CG, Macmadu A, et al. Clinical care of incarcerated people with HIV, viral hepatitis, or tuberculosis.Lancet. 2016;388(10049):1103–1114 11. Booker CA, Flygare CT, Solomon L, et al. Linkage to HIV care for jail detainees: findings from detention to the first 30 days after release. AIDS Behav. 2013;2: S128–S136. 12. Liau A, Crepaz N, Lyles CM, et al. Interventions to promote linkage to and utilization of HIV medical care among HIV-diagnosed persons: a qualitative sys- tematic review, 1996–2011. AIDS Behav. 2013;17(6): 1941–1962. 13. Elkington KS, Jaiswal J, Spector AY, et al. Can TasP approaches be implemented in correctional settings? A review of HIV testing and linkage to community HIV Treatment Programs. J Health Care Poor Underserved. 2016;27(2A):71–100. 14. Graham JL, Giordano TP, Grimes RM, Slomka J, Ross M, Hwang LY. Influence of trust on HIV diagnosis and care practices: a literature review.J Int Assoc Physicians AIDS Care (Chic).2010;9(6):346–352. doi: 10.1177/1545109710380461. 15. Gaston GB, Alleyne-Green B. The impact of African Americans’beliefs about HIV medical care on treat- ment adherence: a systematic review and recommen- dations for interventions.AIDS Behav.2013;17(1): 31–40. doi:10.1007/s10461-012-0323-x. 16. Bogart LM, Wagner GJ, Green HD. Medical mistrust among social network members may contribute to antiretroviral treatment nonadherence in African Americans Living with HIV. Soc Sci Med. 2016;164: 133–140. 17. Whetten K, Reif S, Whetten R, Murphy-Mcmillan LK. Trauma, mental health, distrust, and stigma among HIV-positive persons: implications for effective care. Psychosom Med. 2008;70(5):531–538. 18. Heller J. Rumors and realities: making sense of HIV/ AIDS conspiracy narratives and contemporarylegends.Am J Public Health.2015;105(1):e43–e50. doi: 10.2105/AJPH.2014.302284. 19. Ball K, Lawson M, T. Medical Mistrust A. conspiracy beliefs & HIV-related behavior among African Americans.J Psychol Behavior Sci.2013;1(1):1–7. 20. Freeman R, Gwadz MV, Silverman E, et al. Critical race theory as a tool for understanding poor engage- ment along the HIV care continuum among African American/Black and Hispanic persons living with HIV in the United States: a qualitative exploration. Int J Equity Health. 2017;16(1):54. 21. Dale SK, Bogart LM, Wagner GJ, Galvan FH, Klein DJ. Medical mistrust is related to lower longitudinal medication adherence among African-American males with HIV.J Health Psychol.2016;21(7):1311–1321. doi:10.1177/1359105314551950. 22. Gwadz M, Applegate E, Cleland C, et al. HIV-infected individuals who delay, decline, or discontinue anti- retroviral therapy: comparing clinic- and Peer- Recruited Cohorts.Front Public Health.2014;2:81doi: 10.3389/fpubh.2014.00081. 23. Hatzenbuehler ML, Keyes K, Hamilton A, Uddin M, Galea S. The collateral damage of mass incarceration: risk of psychiatric morbidity among nonincarcerated residents of high-incarceration Neighborhoods.Am J Public Health. 2015;105(1):138–143. 24. Thom DH, Ribisl KM, Stewart AL, Luke DA. Further validation and reliability testing of the trust in phys- ician scale. The Stanford trust study physicians. Medical Care.1999;37(5):510–517. doi:10.1097/ 00005650-199905000-00010. 25. Bronfenbrenner U, Morris PA. The ecology of devel- opmental processes. In: Damon W, Lerner RM, eds. Handbook of Child Psychology: Theoretical Models of Human Development. Hoboken, NJ: John Wiley & Sons Inc; 1998:993–1028. 26. Delgado R, Stefancic J.Critical Race Theory: An Introduction. 2nd ed. New York, NY: New York University Press; 2012. 27. Ford CL, Airhihenbuwa CO. Critical race theory, race equity, and public health: toward Antiracism Praxis. Am J Public Health. 2010;100:S230–S235. 28. Gwadz M, Cleland CM, Hagan H, et al. Strategies to uncover undiagnosed HIV infection among heterosex- uals at high risk and link them to HIV care with high retention: a“Seek, Test, Treat, and Retain”Study. BMC Public Health. 2015;10:481. 29. Heckathorn DD. Respondent-driven sampling: a new approach to the study of hidden populations. Soc Probl. 1997;44(2):174–199. 30. Susser ES, Struening EL. Diagnosis and screening for psychotic disorders in a study of the homeless. Schizophr Bull.1990;16(1):133 –145.https://academic. oup.com/schizophreniabulletin/article- 31. Stevens ER, Nucifora K, Zhou Q, et al. Cost-effective- ness of peer- versus venue-based approaches for detecting undiagnosed hiv among heterosexuals in high-risk new york city neighborhoods.JAIDS J Acquir Immune Defic Syndr. 2017;77(2):183–192. 32. Gwadz M, Cleland CM, Kutnick A, et al. Factors associated with recent HIV testing among 164 A. KUTNICK ET AL. heterosexuals at high risk for HIV infection in New York City. Front Public Heal. 2016;4:76. 33. Kutnick AH. Gwadz M, Cleland CM, et al. It’s a pro- cess: reactions to HIV diagnosis and engagement in HIV care among high-risk heterosexuals. Front Public Heal. 2017;5:100. 34. Smith JA, Jarman M, Osborn M.Doing interpretative phenomenological analysis. In: Qualitative Health Psychology: Theories and Methods. London: Sage Publications; 1999:218–240. 35. Smith JA. Reflecting on the development of interpret- ative phenomenological analysis and its contribution to qualitative research in psychology.Qual Res Psychol. 2004;18:105 36. Yardley L.Demonstrating validity in qualitative psych- ology. In: Qualitative Psychology: A Practical Guide to Research Methods. London: Sage Publications; 2007. 37. Smith JA.Validity and qualitative psychology. In: Qualitative Psychology: A Practical Guide to Research Methods. London: Sage Publications; 2003:232–235. 38. Dedoose Version 7.0.23. Los Angeles, CA: Socio- Cultural Research Consultants, LLC. 2016.www. dedoose.com. 39. Institute of Behavioral Research. TCU Drug Screen V. http://www.odmhsas.org/picis/TraningInfo/Texas Christian Univ Drug Screen 5 Scoring and Interpretation Guide 4-1-15.pdf. Published 2014. 40. Bush K, Kivlahan DR, McDonell MB, Fihn SD, Bradley KA. The AUDIT Alcohol Consumption Questions (AUDIT-C): an effective brief screening test for problem drinking. Ambulatory Care Quality Improvement Project (ACQUIP). Alcohol Use Disorders Identification Test.Arch Intern Med.1998; 158(16):1789 41. Shuper PA, Joharchi N, Irving H, Rehm J. Alcohol as a correlate of unprotected sexual behavior among people living with hiv/aids: review and meta-analysis. AIDS Behav.2009;13(6):1021–1036. doi:10.1007/ s10461-009-9589-z. 42. LaVeist TA, Isaac LA, Williams KP. Mistrust of health care organizations is associated with underutilizationof health services.Health Serv Res.2009;44(6): 2093–2105. doi:10.1111/j.1475-6773.2009.01017.x. 43. Begier EM, Bennai Y, Forgione L, et al. Undiagnosed HIV infection among New York City jail entrants, 2006: results of a blinded serosurvey.JAIDS.2010; 54(1):93–101. 44. Machtinger EL, Wilson TC, Haberer JE, Weiss DS. Psychological trauma and PTSD in HIV-positive women: a meta-analysis. AIDS Behav. 2012;16(8): 2091–2100. 45. Nightingale VR, Sher TG, Hansen NB. The impact of receiving an HIV diagnosis and cognitive processing on psychological distress and posttraumatic growth.J Trauma Stress. 2010;23(4):452–460. 46. Sherr L, Nagra N, Kulubya G, Catalan J, Clucas C, Harding R. HIV infection associated post-traumatic stress disorder and post-traumatic growth–a system- atic review. Psychol Health Med. 2011;16(5):612–629. 47. Stevens PE, Doerr BT. Trauma of discovery: women’s narratives of being informed they are HIV-infected. AIDS Care. 1997;9(5):523–538. 48. Turan B, Budhwani H, Fazeli PL, et al. How does stigma affect people living with HIV? The mediating roles of internalized and anticipated HIV stigma in the effects of perceived community stigma on health and psychosocial outcomes. AIDS Behav. 2017;21(1): 283–291 49. Fletcher F, Ingram LA, Kerr J, Buchberg M, Bogdan- Lovis L, Philpott-Jones S. She told them, oh that bitch got AIDS: experiences of multilevel HIV/AIDS-related stigma among African American women living with HIV/AIDS in the South. AIDS Patient Care STDS. 2016;30(7):349–356. 50. Quinlivan EB, Messer LC, Roytburd K, Blickman A. Unmet core needs for self-determination in HIV- infected women of color in medical care.AIDS Care. 2017;29(5):603–611 51. Wakeman SE, Rich JD. HIV treatment in US prisons. HIV Ther.2010;4(4):505–510. BEHAVIORAL MEDICINE 165 Copyright ofBehavioral Medicineisthe property ofTaylor &Francis Ltdand itscontent may not becopied oremailed tomultiple sitesorposted toalistserv without thecopyright holder’s express writtenpermission. However,usersmayprint, download, oremail articles for individual use.