Chapter 2
Traditions of Qualitative and Quantitative Design and Methods
for Research with Diverse Populations
By
Hilda Haynes-Lewis and Sarah Llanque
Historical Perspective
Researchers have always conducted research using participants from diverse and vulnerable populations. Historically, research with vulnerable populations has been marred by the exploitation of these groups. One such atrocity involves clinical research conducted during the Holocaust. The researcher, Dr. Carl Clauberg performed inhumane experiments to determine the most economical way to sterilize Jewish women. Many of these experiments were performed without anesthesia, in unsanitary conditions; as a result many women did not survive (Sweet & Csapo-Sweet, 2012). The effects of these atrocities and the war were reflected in the anxiety and depressive disorders exhibited by the youth and survivors of the Holocaust. These events have had a powerful influence on this group and have shaped their perceptions of and connections to the greater society (Fossion et al., 2013; Sims, 2010).
In the United States, another such atrocity took place over a 40 year period. The Tuskegee syphilis experiment was conducted on 399 African American men beginning in 1932 and eventually ending in 1972. The Tuskegee syphilis experiment deprived study participants of treatment for syphilis in order for researchers to observe the natural course of the disease. This resulted in undue suffering for the participants since treatment was available. This study continues to influence the perceptions and understanding of clinical research in the African American community (Gamble, 1997). Of note, in the Tuskegee experiment, the researchers employed an African American nurse to collect samples and interact with the participants. This is an example of the unequal sharing of power within the research team, and between the researchers and the participants. Since the implementation of this study there has been an evolution in research resulting in greater respect for participants [refer to Box 1 for more information on the Tuskegee syphilis experiment].
The Belmont report was created to address the unethical research practices that occurred during the Tuskegee syphilis experiment (Health & Services, 2003; Sims, 2010). This report is based on the ethical principles of beneficence, justice and respect for persons. It provides guidance on the treatment of research participants. It was also instrumental in the development of Institutional Review Boards (IRBs), which ensures and monitors the ethical treatment of all subjects including marginalized and vulnerable populations (Sims, 2010).
A more recent event occurred in New Zealand beginning in 1966 when Professor Green, a gynecologist and obstetrician, at National Women’s Hospital in Auckland, New Zealand, began withholding treatment from women with precancerous cervical lesions. He believed these lesions would never progress to invasive cancer and, therefore, did not require treatment. The standard treatment at that time was removal of the cervical lesion. Professor Green did not offer this treatment option to any of his patients who were diagnosed with this cervical abnormality. Instead, he continued to have them visit for observation and occasional repeat cervical biopsies. Professor Green did not seek formal permission from the institution to conduct this research. Therefore, informed consent was not obtained. This experiment continued for more than 15 years, in spite of numerous complaints from professional colleagues (McCredie et al., 2010). The practices of Professor Green were not investigated until 1987. An extensive inquiry was conducted by Judge Silvia Cartwright, and the results were known as the Cartwright report. Judge Cartwright concluded that female subjects were denied a right to clinical freedom; the ability to make decisions regarding their clinical treatment in an atmosphere of equality, dignity and respect. In addition, the facility did not provide adequate protection for the patients or monitoring of the research and allowed intimidation of the nursing staff so they were not able to act as patient advocates(Campbell, 1989). This report recommended a multitude of changes for researchers working with human subjects.
A common thread in these examples of research misconduct is the perception of the researcher as all-knowing with the use of othering of the vulnerable population as an explanation or justification for their unethical behavior. Othering iswhen persons are presented as different and separate from the researchers or society (Dowse, 2009). In addition, researchers must be aware of their self-interests. The researcher enters a study with their culture and history, which influences the researchers’ perceptions or positionality (Dowse, 2009). Positionality can affect the formulation of the research question, how the research is conducted and interpreted. Research is dynamic, and has evolved to adhere to ethical principles that protect vulnerable populations from exploited. Research continues to evolve and move forward by empowering participants and promoting social justice (Freire, 2009).
Qualitative Research Exemplar
Qualitative research involves a mix of designs and methods, which uses a holistic approach to describe the human experience. It compels the researcher to gain an in-depth understanding of how people behave and explore the reasons that govern human behavior. Descriptive data of the human experience, textual narratives, and audiovisual data can be generated, collected, and analyzed using qualitative methodologies. The emphasis of qualitative research is on understanding the world of the participants (Boyd, 2001). Qualitative methods are particularly useful when conducting research with vulnerable and marginalized populations, because it allows the researcher to give voice to the group (Wethington & Dunifon, 2012). A study conducted by Hughes and her colleagues (2007) used a purely qualitative approach, interpretive phenomenology. They conducted in-depth interviews of 14 urban, poor people, living with advanced cancer. Some participants were hospitalized or seeking treatment at an outpatient facility. The researchers interviewed each participant three times and learned about the difficulties faced by of the urban poor. The qualitative research design enabled the researchers and participants to uncover vivid details as to the indignities experienced by minority and economically disadvantaged participants experienced. The struggles the participants endured, as well as their perceptions of the healthcare team as disrespectful and uncaring were well documented. In addition, advanced cancer was seen as just one of the many problems this group faced, other issues include food and shelter insecurity, histories of sexual and drug abuse, and a lack of social support (Hughes, Gudmundsdottir, & Davies, 2007). The use of in-depth interviews provided the researchers with a rich look at the lives of these individuals, and gave voice to their plight.
In another study, Baez (2002) interviewed 16 minority faculty at a private university in the Northeastern part of the United States. The study sought to understand how minority faculty experienced promotion and tenure, given their underrepresentation, especially at historically white institutions. One participant described her experiences as constant struggles with sexism and racism in the academic setting. The participant did not receive tenured and refused to grant the researcher permission to report any information with more specificity in the study. Throughout the interview the participant repeatedly asked the researcher to keep the data confidential. Baez made a conscious effort not to disclose certain affiliations, due to his obligation to keep what was discussed during the interview confidential. Participants could be at risk for retaliation from others for exposing them (Baez, 2002).
Qualitative methods are useful in discovering or elaborating on the experiential, contextually-rich situations of research participants. However, these methods may pose particular risks when vulnerable participants or sensitive topics are the focus of the research. A relationship of relative trust and rapport established between the researcher and participant is foundational to the qualitative data collection processes. Sensitive topics may be discussed in these relationships, which may expose the participant to painful self-disclosures. For example, interviews or diaries that contain information concerning illicit behaviors may place participants in legal jeopardy if confiscated by authorities (Smyth & Murray, 2000). In some cases, such as abuse or neglect, researchers are required to break standard guarantees of confidentiality, and disclose such information to authorities for the safety and well-being of society.
Quantitative Research Exemplar
Quantitative research involves methods that lean toward techniques, which are statistical or computational (Walter & Anderson, 2013a). It refers to the systematic empirical investigation of a social phenomena. This type of research design uses a more objective approach in collecting data. Data is considered hard data, usually consisting of numbers or scales. The ‘who, how, and what’ concerning data is shaped by the researcher’s standpoint or positionality. Specific aims, research hypotheses, and objectives, are also shaped by the researcher using a quantitative research methodology. Data collected are then analyzed, interpreted, and presented, as a result of that standpoint. Quantitative data can be collected from various measures and instruments (Walter & Anderson, 2013a). Past research involving vulnerable populations utilizing this methodology has infrequently involved the input of the participants being researched. There are few Indigenous practitioners, who have used quantitative research (Walters & Andersen, 2013b). For many indigenous populations research has involved the systematic measurement of body habitus and function. Research participants, such as Indigenous elders, can still remember being measured and prodded by anthropologists more interested in their ‘uniqueness’ than as human beings (Walter & Anderson, 2013b). In spite of this, there has been research conducted with quantitative methodologies on vulnerable populations that have sought to protect the wellbeing of communities.
Moran and Bravo (2002) conducted a pilot study that used a one-group, pretest posttest design implementing a psychoeducational intervention involving Hispanic caregivers of older adults with Alzheimer’s disease and related dementias (ADRD). The purpose of the study was to test the feasibility of a culturally-tailored intervention with minority caregivers of persons with ADRD in order to increase caregivers’ understanding of ADRD and improve their coping skills. Caregivers demonstrated a significant improvement on the Caregiver Knowledge Survey, an increased awareness of community-based services, increased willingness to attend support groups, and overall satisfaction with the program.
In addition to these results, the researchers had also noticed some unique logistical factors that played into the success of the intervention. For example, the program was planned on a set schedule, following an itinerary. However, it was revealed that strict adherence to timing of the intervention would not be feasible for the study. From the onset of the intervention it became apparent that the participant group would not watch the clock and would establish their own time frame. The socialization time was as important to the caregivers as the educational time as caregivers also used this time of discussing their caregiving experiences. Food also played a part of the intervention planning. Hispanic caregivers took a great deal of pride in being able to contribute to the group. Flexibility was an important part of the intervention for the researcher, as well as researcher’s willingness to accommodate aspects of participant’s culture into the intervention.
Community-Based Participatory Research Exemplar
Community-Based Participatory Research (CBPR) is methodology that researchers and community partners can use to address issues of injustice. It has the potential to change the actual conditions of communities; this is especially true in communities where vulnerable populations are present (Kelly, 2005). The community participates fully in all aspects of the research process. CBPR has been used in both qualitative and quantitative research studies, as well as mixed methods studies. Researchers, who identify, culturally with the community of interest, should be cognizant of their dual position: one as a member of the community, and the other as the researcher. Researchers must also declare who they are as researchers, why the research should be conducted, and why answering the research question is important–not only for advancing a particular discipline, but also for the individuals and the community involved. An example of a study where the researcher is from the culture and community they are studying was documented by Enriquez, Kelly, Cheng, Hunter, and Mendez (2011). They conducted a CBPR study with Hispanic high school students, teachers, and families.
Enriquez and her colleagues (2011) used methods of CBPR in a one-group, pretest posttest design to evaluate the receptivity and preliminary impact of a violence prevention program based on Latino cultural values in a Midwestern Hispanic community. Students were from a predominantly Hispanic high school. Community members participated in the intervention program selection, implementation, and data collection. This collaborative partnership used CBPR approach, which provided sustained benefit to the community partners. Findings revealed a significant increase in the participant’s ethnic pride. The incidence of physical fighting and dating violence behaviors decreased over the course of an academic school year. Results provided preliminary evidence for the use of interventions based on ethnic and cultural pride, as a violence prevention strategy among Hispanic-American teens, especially those who are first generation Americans.
Ethical Issues and the IRB
According to Mikesell, Bromley, and Khodyakov (2013), research involving vulnerable populations should consider the rights and wellbeing of community in which they live. This requires additional ethical considerations. The wellbeing of communities is often overlooked when it comes to Institutional Review Boards or IRBs. IRBs are entities that are made up of a panel of people consisting of academics, lay people, and/or other professionals. IRBs evaluate the research studies or projects to ensure that the research they approve is being conducted in an ethical manner, and that the rights of human beings are protected. Hence, IRBs are usually more focused on the wellbeing of individuals rather than communities, as a whole since their primary purpose is protecting the individual research participants (Mikesell et al., 2003). IRBs also require that all research procedures be approved before research has begun. This can present a challenge for communities and researchers.
Community-Campus Partnerships for Health is a website and resource, which provides additional information on working with IRBs and ethics committees at the community level [refer to Box 1]. Using a CBPR approach often requires continual assessment and ongoing adjustments to the research design, as well as the study aims and protocols. Thus, continually asking IRB approval could be a tedious process due to changes in the research design.
WWW Resources
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Another ethical issues related to conducting research with vulnerable populations is related to data collection and ownership. Some researchers may question whether certain findings (e.g., negative findings) should be disseminated or published. Ethical arrangements for data sharing and the interpretation and dissemination of results should be discussed prior to the initiation of the research study. Negotiating compromises to ensure fairness for both individuals in the study and communities engaged in research is necessary to address ethical issues that may arise. Communities may opt to use nontraditional research procedures to implement or evaluate programs. Here in lies the principle of justice for vulnerable populations and communities. Beneficence and justice for communities are ethical principles of community-engaged research that researchers should keep in mind, which are core principles of the Belmont report (Mikesell et al., 2003).
Ethical dilemmas arose when geneticists and researchers did not provide full disclosure for a Native American community in Arizona to study genetic variation and mental illness in the community (Harmon, 2010). Researchers initially approached the community for research related to diabetes. However, other studies related to DNA and mental health, which were not disclosed to the community or participants occurred. Researchers need to ensure that participants are provided sufficient information to give informed consent (Liamputtong, 2007).
Privacy and confidentiality concerning vulnerable populations should be considered when designing a study. Privacy concerns the individual, while confidentiality concerns data (Office of Research at the University of California, Irvine, 2014, para. 6). Researchers working with homeless women on a study involving collecting data via physical examinations would need to consider a private area or physical space. Privacy is considered from the perspective of the study participant and not in the point of view of the researcher or the IRB.
Confidentiality, on the other hand, focuses on data, rather than individuals. Confidentiality “pertains to the treatment of information that an individual has disclosed in a relationship of trust and with the expectation that it will not be divulged to others without permission in ways that are inconsistent with the understanding of the original disclosure” (Office of Research at the University of California, Irvine, para. 8). Data should be de-identified and only be accessed by study personnel. Stored data should be kept in a locked box or encrypted computer.
Multiple ethical issues can arise in a single research study. For example, Cottler, O’Leary, Nickel, Reingle, and Isom (2014) studied women arrested for drug crimes. More specifically, they wanted to know if the women in their study had sex with police officers for favors. Sex with police officers in this manner is a form of police sexual misconduct (PSM). Thus, the researchers wanted to know the incidence and prevalence of PSM. Cottler et al. partnered with Sisters Teaching Options for Prevention (STOP) project, a community group, to gain access to the participants and to establish trust. The participants were interviewed and completed questionnaires. Findings revealed that the women were, indeed, abused by police officers while in custody. Both public safety and the laws can override research participants’ rights to privacy, and lead to secondary disclosure of participant information. This would lead a researcher to breach confidentiality (Smythe & Murray, 2000). In designing this study, researchers took into account the safety and possible distress of participants in naming the abusers. The participants could provide anonymous data about the incidence of abuse, without naming the perpetrator. This resulted in a decrease in breeches of confidentiality and possible retaliation by police officers.
Conclusion
In conclusion, researchers who work with vulnerable and marginalized groups must recognize how history can affect the perceptions of the group they are studying. The standpoint or positionality of the researcher is just as important to the study, as the integrity of methods used; qualitative or qualitative. Positionality means understanding where you stand in relation to the participants being studied. In other words, as a researcher, you must acknowledge all facets of yourself including your gender, race, ethnicity, socioeconomic status, past experiences, sense of entitlement and privilege. This includes your feeling of vulnerability as a researcher, and the vulnerability of the participants you are studying. You must also be aware that vulnerability is fluid and dependent on context of the situation (Kirkham & Anderson, 2010).
When designing research for vulnerable population researchers should not only consider a well-reasoned study design, they must also consider the complex interplay of human relations that can become visible when research is started. Researchers must be cognizant of factors including historical trauma of certain communities/groups, unethical research studies, and mistrust of the scientific community due to past dealings with academics.
Researchers need to ensure that the voice and concerns of vulnerable research participants are heard, addressed, and acknowledge throughout the research process. Qualitative research designs can bring voice to the lived experience of vulnerable populations, while at the same time pose challenges to researchers related to privacy and confidentiality. Quantitative research designs have the distinct advantage of analyzing numerical data. However, sometimes the voice of the participants can be lost in the data analysis. By consulting with members of the community, researchers can develop a solid research design that is not only well-planned, but also respects the rights of those they are researching, as well as creating opportunities for participants to be heard (Kirkham & Anderson, 2010).
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