Regulatory, Legal, Ethical, and Accreditation Issues in Research
As highlighted in Chapter 9 of your course text, three research methods are available (descriptive, analytic, and evaluative). Discuss these methods and give one example of how each would be used when conducting research using homeless individuals as subjects. Analyze regulatory, accreditation, ethical, and legal issues and challenges related to each research method.
Your initial contribution should be 250 to 300 words in length. Your research and claims must be supported by your course text and at least one other scholarly source. Use proper APA formatting for in-text citations and references as outlined in the Ashford Writing Center.
Introduction
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Descriptive, analytic, and evaluative research are all essential types of research used to study special populations in America’s health care system.
To understand how to best address the needs of vulnerable populations, research must be conducted. The type of research used to study special populations in America’s health care system falls into three broad categories. Descriptive research focuses on identifying those most at risk and the methods of identifying these groups and their needs—for example, identifying which youth are most at risk for violent behavior. Analytic research focuses on identifying the reasons for vulnerability and ways to prevent and remediate vulnerability, so it is used to identify why certain youth have higher risks of violent behavior than others. Evaluative research helps determine the success of existing programs that aim to provide services to vulnerable groups—meaning that evaluative research asks such questions as, “What programs are effective at addressing the needs of youth identified as being at risk for violent behavior?”
Each research category serves an important purpose. However, more integration between research types and studies would help improve the understanding of vulnerability as well as the programs that serve America’s most vulnerable. The research associated with vulnerable populations is often fragmented, in that studies often look at one particular issue or group but do not always consider the connections that exist across issues and populations.
Critical Thinking
The three types of research all have advantages in certain situations and disadvantages in others. Do you think there would there be a benefit in using only one type of research in all situations to ensure consistency and accuracy?
9.1 Descriptive Research: Identifying the Vulnerable
Studies that work toward identifying vulnerable groups fall into the descriptive research category, which means that they seek to describe which groups are most vulnerable. Unfortunately, efforts to identify and count America’s vulnerable populations are disjointed, with the result that there is little uniformity in terms of the definitions being used. Furthermore, lack of consistency when defining the characteristics of vulnerable groups causes data to become skewed—such as in some studies where specific groups are over- or underrepresented—and difficult to compare across studies. Issues of data collection necessary to study high-risk populations further complicate this problem. For example, one study may ask care providers to define patients by race while another study asks patients to define themselves by ethnicity. It would be much easier and more accurate if the two studies used the same terminology and definitions. Though using the same source for data is not always needed (for example, if the studies want to see the difference in how providers and patients define patients’ races), using standardized data sources and data collecting methods (paper survey vs. computerized data mining) helps in performing cross-comparisons of the studies. Even as definitions begin to form, the length of time taken to interpret and report data leads much of it to be obsolete before a report is written.
Research into the descriptive characteristics of vulnerable populations should pay attention to the definitions used in prior research studies and use them where they can or address the changes in the reporting so that terminology is consistent across the various studies. In general, best practices that establish common terminology and provide for uniformity in data collection and reporting are necessary.
Vulnerable Mothers and Children
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Future birth, death, and health trends can be estimated based on current data from the National Vital Statistics System.
Traditionally, birth and death records were the main source of data available to those working on descriptive research of vulnerable mothers and children. The National Vital Statistics System (NVSS) is maintained by the Centers for Disease Control and Prevention’s National Center for Health Statistics (NCHS). NVSS is a reporting system that tracks birth, death, and health data to provide a picture of what the American population looked like in the past and what it looks like now; NVSS uses that data to estimate future birth, death, and health trends.
NCHS frequently reviews data reporting methods. Lack of registered births and incomplete registrations continue to be problematic for NVSS and the researchers who rely on its data. Previous efforts to remedy this problem have included updating classifications and surveying households (Hetzel, 1997). NCHS also provides standardized reporting forms, training, and an instruction manual to help those charged with reporting to ensure complete and accurate information.
Abused Individuals
Two issues plague data regarding child abuse, intimate partner abuse, and elder abuse. The definitions of abuse are somewhat subjective, and it is suspected that a considerable number of incidents go undetected and unreported. Data for descriptive research into abused individuals usually comes from clinical studies, household surveys, interviews with victims and perpetrators of abuse, and protective service agency reports.
The Administration for Children and Families conducts the National Incidence Study (NIS) on Child Abuse and Neglect about once per decade. The study was created as a requirement of the Child Abuse Prevention and Treatment Act. NIS contributes to the field of descriptive research not only by compiling data but also by creating standardized terminology and a framework for classifying and reporting child abuse by severity, maltreatment type, and demographics (Administration for Children and Families, n.d.b). Researchers conducting clinical studies and interpreting official reports should consider using the standards set forth by the NIS. Doing so would help create a network of research on the subject that would improve research accuracy.
Chronically Ill and Disabled Persons
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Health care program eligibility for the disabled and chronically ill is determined by descriptive research, which is largely subjective.
Descriptive research on the chronically ill and disabled is relied on when determining health care program eligibility. The primary problem with this research is that much of it is subjective. For example, two patients with similar arthritis symptoms may report different amounts of pain on a scale of 1 to 10. What one patient finds uncomfortable, say bending over to tie shoelaces, may be impossibly painful for another patient with a similar amount of inflammation. Should the second patient receive more physical therapy paid for by insurance or have his or her medication costs subsidized while the patient reporting less pain is deemed ineligible for such programs?
The broadest information set available covering the chronically ill and disabled in the United States is the National Health Interview Survey (NHIS) conducted annually by the U.S. Census Bureau. The bureau selects households to participate in the survey and asks the participants to meet with interviewers to answer questions about race, living situation, diagnosed health issues, and perceived health issues and wellness. Survey participation is about 90% of selected households; of those that refuse the survey, replacements are not selected (Centers for Disease Control and Prevention, 2012f). By conducting the survey through live interviews, participants are encouraged to provide complete and accurate information. However, much of a person’s perceived health is subjective, and accuracy cannot be guaranteed.
Persons Diagnosed With HIV/AIDS
Descriptive research helps to identify those groups that are most at risk for contracting the HIV virus so that preventive programming can be directed in appropriate ways. In the 1980s, HIV was thought of as a “gay man’s” disease. However, HIV is also prevalent among intravenous drug users and can be transmitted through bodily secretions regardless of sexual preference. It is therefore important to determine who in the population has HIV, who in the population is most likely to contract HIV, and through what means the disease is most often contracted among different groups. Socioeconomic characteristics are also important in determining which groups are most at risk.
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Contrary to early popular thought, HIV is not a specifically “gay man’s” disease, but can be transmitted through bodily secretions regardless of sexual preference.
In the early stages of the epidemic, studies lacked uniformity in the way they defined HIV/AIDS cases. Some looked at HIV in the early stages, while others did not define HIV/AIDS until the point when AIDS actually set in. In 1985, the CDC and the World Health Organization (WHO) published a case definition for AIDS with the intention of improving testing and diagnoses procedures and creating a standardized definition to be used in research. In 1987, the official definition changed to make it easier to diagnose AIDS in Africa and other underdeveloped countries where medical technology is lacking. The last CDC/WHO definition of HIV/AIDS was published in 1993 and led to earlier diagnosis of HIV in women and children (Center for Disease Control, 1993).
Many local health departments and physicians’ offices participate in the CDC seroprevalence surveys. Seroprevalence is the incidence of infection, based on blood serum testing and the presence of antibodies for a specific disease in a given population. Though these surveys track new HIV diagnoses, they usually do not include much demographic information. Changes have been made in the last decade, however, to the CDC’s reporting program to help reporters include nonpersonal socioeconomic and demographic information, such as race, gender, and insurance type. Some states and cities have mandatory reporting laws that compel physicians at specified locations and clinic types to report HIV/AIDS cases and provide counseling for diagnosed patients. The New York City Department of Health and Mental Hygiene has one such program under a New York state law (New York City Department of Health and Mental Hygiene, 2012).
Persons Diagnosed With Mental Conditions
Research that attempts to identify populations with mental conditions and those at risk of developing mental conditions faces obstacles from questions regarding what constitutes a mental illness and what methods are used to classify mental illness. Furthermore, the issue of primacy—whether the mental condition is the primary health factor or whether it is a secondary symptom of something else—is particularly important. Counting the number of people treated for mental conditions is also complicated by the wide variety of physicians who treat a wide variety of problems. For example, a person with severe mental illness may see a psychiatrist, but someone who is feeling blue might be more likely to see his or her general practitioner, who is less likely to participate in reporting programs that seek to study the population diagnosed with mental conditions.
The Substance Abuse and Mental Health Services Administration (SAMHSA) publishes reports on the state of mental health in the American population and on mental health services in the country. Beginning with the 2008 report, “Mental Health, United States, 2008,” SAMHSA began including data from a variety of sources instead of just information from the administration. The inclusion of various sources provides for a broader look at mental health in the United States (Substance Abuse and Mental Health Services Administration [SAMHSA], 2010b).
Suicide- and Homicide-Liable Persons
The vital statistics system reports data on suicides and homicides. However, many attempted suicides go unreported, and medical examiners report that many achieved suicides are not reported as such due to the stigma associated with suicide (Bureau of Justice Statistics, 2011). Official records and coroner reports are the main sources of data on suicide numbers.
The main sources of data on homicide numbers come from police reports, the Federal Bureau of Investigation (FBI), and other areas of the criminal justice system. The FBI publishes multiple reports that include information on homicide, including Uniform Crime Reports and the Homicide Reports supplement and the National Crime Victimization Survey (formerly the National Crime Survey). The National Crime Victimization Survey is taken on an ongoing basis from a sampling of U.S. households and asks about experienced crime events such as rape and burglary (Bureau of Justice Statistics, 2011). As such, underreporting of personally traumatic events (like rape) and underrepresentation of the groups most affected by crime due to nonparticipation skew the numbers. In addition to sources from the FBI, the CDC offers access to the National Violent Death Reporting System (NVDRS). The NVDRS gathers data from multiple sources for each reported incident. By doing so, the NVDRS helps create a more accurate picture of suicide and homicide in the United States.
Persons Affected by Alcohol and Substance Abuse
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Collecting comprehensive data on alcohol and substance abuse can prove difficult due to issues of underreporting and variations of focus among data collection services.
The network of data available on the prevalence of alcohol and substance abuse is incohesive because different reports focus on different aspects of the problem and on different populations. Social surveys, like the National Household Survey on Drug Abuse and the Monitoring the Future survey, are subject to the same underreporting issues that nearly all social surveys are subject to. SAMHSA works through the Center for Mental Health Services (CMHS) to develop and publish standards for reporting on mental health and substance abuse services. The CMHS Uniform Reporting System (URS) provides standardized data that is easily compared. Even with the URS in place, there remains a need for research into the prevalence and nature of alcohol and substance abuse that uses reporting standards that make using the data for program implementation faster, easier, and more universal.
The CDC’s Behavioral Risk Factor Surveillance System is an ongoing survey that tracks behaviors associated with poor health outcomes, including the prevalence of alcohol, tobacco, and drug use. The survey is conducted by phone and is used to measure the current health status and risk behaviors in the country, as well as monitor the ties between risk behaviors like alcohol abuse and health (Centers for Disease Control and Prevention, 2012g). The CDC tracks similar information on risk-associated behaviors, including alcohol use, drug use, tobacco use, seat belt use, and eating habits among America’s youth using the ongoing Youth Risk Behavior Surveillance System (YRBSS). YRBSS is conducted utilizing many resources to reach youth, including schools; state, local, and tribal agencies; and health organizations (Centers for Disease Control and Prevention, 2012h). The CDC’s efforts to collect data on risk-associated behavior on an ongoing basis are essential to studying and predicting America’s health, identifying vulnerable populations, and recognizing risk factors that contribute to vulnerability.
Indigent and Homeless Persons
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Due to the transient nature of the homeless population, it is difficult to analyze the rate of occurrence and risk factors for homelessness.
As discussed in earlier chapters, studying the prevalence of and risk factors for homelessness is challenging because the homeless population is transient and therefore difficult to quantify. Also, homelessness does not necessarily mean that a person is sleeping on the street. Shelters and other temporary housing programs are able to provide some information, such as a nightly count of the number of people staying there. Some places offer additional services, such as counseling and medical services, and are therefore able to offer some amount of information regarding the reasons for homelessness and common medical issues.
Another method used to gather data on the incidence of homelessness in a given area is the point-in-time count. A point-in-time count seeks to determine the total number of homeless people sleeping outdoors in a specific area during a specific period. Counters walk the streets looking for homeless individuals and count the number found and note where they were located. Point-in-time counts, however, do not provide a thorough assessment of a city’s homeless needs because the scope is so small.
Immigrants and Refugees
Though the U.S. Census Bureau, Program for Research on Immigration Policy, U.S. Immigration and Customs Enforcement, and other independent organizations have tried, no exact count of the number of undocumented workers in the United States currently exists. Reports on current estimates categorize undocumented workers into three groups: those making a permanent move to the country (settlers), those making a temporary trip to the country (sojourners), and those who enter the United States to work but who return home after the growing season or other work season is done (commuters). However, there are no strongly supported counts for any category.
The Immigration and Naturalization Service (INS), Current Population Survey, and census do supply some data on the number of documented immigrants and refugees seeking asylum in the United States. The Office of Refugee Resettlement conducts surveys of the demographics, socioeconomics, and use of public services by refugees. Other than the data from these surveys, little cross-disciplinary, cohesive research exists on the subject.
Critical Thinking
The very nature of many populations, like homeless and commuters, make them inherently difficult to accurately measure. How do you think this lack of knowledge impacts public funding for health care and services? Consider a descriptive research study that can examine the needs of these populations without measuring the populations directly. What variables could this study measure? What knowledge could be obtained from the data gathered?
9.2 Analytic Research: Understanding Vulnerability
Analytic research of vulnerable populations attempts to explain why vulnerability occurs and to identify programs that address the problem of vulnerability and the needs of existent high-risk populations. Much analytic research fails to consider how issues from other academic fields affect the points and people being studied. For example, analytic research on health care quality may not necessarily consider research on poverty. Examining cross-disciplinary research concerns, like the way poverty affects the quality of health care received, broadens the scope of the research and sheds light on the interconnectedness of the macro- and microlevel characteristics that cause vulnerability.
The characteristics that create vulnerability and the consequences of vulnerability to individuals and society at large are best measured and reported in longitudinal studies. Longitudinal studies consider the data in terms of large spans of time, such as a high-risk individual’s lifetime or years of policy results. Take, for example, a longitudinal study of children in foster care. Interviews were conducted of both the children and their caregivers regarding the children’s risk behaviors during a period termed “Time 1.” Those same children and caregivers were interviewed again six years later during a period termed “Time 2.” The study results indicate that the risk behaviors identified in Time 1 were directly tied to the risk behavior outcomes found in Time 2 (Taussig, 2002).
Comparative studies that consider the characteristics of one group with those of other groups are useful in identifying the causes of vulnerability. An example is a study that identifies work disability outcomes between health care workers in urban areas and health care workers in rural areas. The study found that rural health care workers are more susceptible to poor work disability outcomes and identified factors including heavy workloads and increased overtime as contributing to the problem (Franche et al., 2010). Researchers conducting comparative studies often find that it is difficult to collect similar data across many populations, especially those identified as vulnerable. This is because many of America’s vulnerable people are transient both in where they live and in the services they use. A cross-disciplinary approach can help with data collection. By including data available from studies outside a given discipline, researchers are given more to work with to present a broader understanding of the issues surrounding vulnerability.
Vulnerable Mothers and Children
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Expanded birth records provide a more comprehensive picture of a person by including detailed data on the mother, such as her behavioral risk factors and history of pre- and postnatal care.
Analytic research on the vulnerability of mothers and children tends to either rely on outdated data or to be outdated itself. The National Maternal and Infant Health Survey (NMIHS) and the corresponding longitudinal follow-up surveys are among the most frequently cited data sets on maternity outcomes; unfortunately, the NMIHS was conducted in 1988. As such, the oft-cited NMIHS is an insufficient source for researchers who want to know the current state of health care for vulnerable mothers and children, though it is useful for longitudinal study comparison purposes.
Expanded birth records offer more updated information. In addition to the standard birth certificates that are available, which list parents’ names, birth dates, and birth location, expanded birth records collect data on behavioral risk factors of the mother as well as information on the medical handling of births and postnatal care. Similarly, revised death certificates are useful resources for collecting data on causes of death, including causes of infant mortality. Linked birth and death records are also available, which provide a more complete picture of the risk factors that contribute to vulnerability.
Abused Individuals
A 2005 study by the World Health Organization (WHO) found a link between intimate partner violence and physical and mental health. Victims surveyed reported health problems, including suicidal thoughts, dizziness, and vaginal discharge. Many reported having such symptoms years after the abuse had ended (World Health Organization [WHO], 2005). The WHO study relied on survey participant answers and included longitudinal questions regarding when and for how long participants were in abusive situations.
However, while the WHO study sheds light on the effects of abuse, the data does not seek explanations for the abuse. Researchers attempting to identify causal factors would do better to take a multidisciplinary view of the problem and make sure to always avoid forcing the data to match a theory. Although household factors, such as economic struggles within the family, are important to consider, the macrolevel factors—like the social ideology that informs relationship dynamics—that can contribute to abuse must not be overlooked when determining who is most at risk for abuse. Data can be mined from police and protective services reports; however, incidence rates are believed to be lower than the reality because many incidents of abuse go unreported.
Chronically Ill and Disabled Persons
Analytic models are useful in identifying the needs of chronically ill people, how those needs are met, and the utilization rates of programs for the chronically ill and disabled. Standards for analytic research on topics associated with this particular vulnerable group have been published by the National Center for Health Statistics and the National Institute on Aging. These standards outline the basic data sets needed and analysis necessary to guide policy and program decisions.
Analytic research also helps identify the population-based factors associated with the development of chronic diseases. One such study found a link between consuming sugary beverages and type 2 diabetes diagnoses (Malik et al., 2010). With analytic research, descriptive research is pooled to create a macrolevel view of the chronic illnesses and programs for such in a given population or geographic area. This research is useful for measuring risk factors’ contributions to the problem of chronic illness and for analyzing programs on both a microlevel and a macrolevel, which indicates how well a given community is responding to the needs of the chronically ill and disabled.
Persons Diagnosed With HIV/AIDS
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In addition to supporting the search for a vaccine against HIV, the National Institute of Allergy and Infectious Diseases (NIAID) supports research into behavioral risk factors and social issues that contribute to the epidemic.
Analytic research into the epidemiology of HIV/AIDS necessitates a cross-disciplinary approach with the social sciences. HIV presents a particularly interesting epidemic because the majority of HIV transmission is caused directly by human behavior, as opposed to diseases like cholera that can transmit through the water supply. The National Institute of Allergy and Infectious Diseases (NIAID) supports research into HIV/AIDS epidemiology, including the search for a vaccine against HIV, efficacy of HIV/AIDS treatment and prognosis improvement, and behavioral risk factors and social issues that contribute to the epidemic. NIAID makes much of the research available to policy makers, other researchers, and the public through its website and publications (NIAID, 2012). The U.S. military also has an HIV research program, with a focus on preventing U.S. troops from contracting the disease while traveling on assignment. The military’s HIV research program studies the HIV/AIDS epidemic across the globe and translates those findings into data to help create programs to decrease the incidence of HIV within the military (U.S. Military HIV Research Program, 2012). Both of these organizations use multidisciplinary approaches to learn more about treating and preventing HIV.
Persons Diagnosed With Mental Conditions
Analytic research into the mind focuses on both the physical brain and the emotional psyche. For example, pharmaceutical companies need to know not only whether a drug works but also how it works on the brain. After all, a drug must accomplish what it is designed to do without causing irreparable physical or psychological damage. Different organizations conduct and fund analytic research for different reasons.
The National Institutes of Health (NIH) supports research into the human brain through a program called the Human Connectome Project. The goal of the project is to map the brain and neurons that affect human behavior and emotion. Two projects funded through the Human Connectome Project are the WU-Minn Consortium and the Harvard/MGH-UCLA Project. Altogether, the Human Connectome Project is working to create a better understanding of neurological and psychiatric disorders. However, the Connectome Project is mostly focused on physical mapping of the brain. More research is needed into the social factors that contribute to mental conditions (National Institutes of Health [NIH], 2012).
Suicide- and Homicide-Liable Persons
Attempts at researching the reasons for death in suicide cases are often conducted postmortem through psychological autopsies, wherein researchers attempt to find a cause for the suicide through interviewing people who knew the victim. This approach provides useful information on the risk factors of suicide, and research on the topic has helped to inform policy makers and program administrators on the best methods to try to prevent suicide in high-risk groups.
Analytic research into homicide rates and the social and emotional factors that contribute to homicide is sparse, and research projects are disconnected. A cross-disciplinary approach that considers both the micro- and macrolevel contributing factors of homicide is needed. Data resources for analytic research into homicides come mainly from the same sources where descriptive researchers find their information. Additionally, analytic researchers seeking information on homicides can turn to criminal records and court records for extended information that might shed more light on the problem.
Persons Affected by Alcohol and Substance Abuse
Analytic research into the causes of alcohol and substance abuse is often theory-driven. This is one field of research wherein the subjects are generally available for interviews and can be studied longitudinally. Additionally, new research mapping the physical attributes of the brain may be considered in tandem with research into other risk factors, thereby providing a better understanding of why some people are more prone to alcohol and substance abuse than others. For example, the National Institute on Drug Abuse (NIDA) (2011b) confirms that a combination of factors ranging from biology to socioeconomic situations cause drug addiction.
Research into alcohol and substance abuse must overcome the obstacle of lack of program data. Lack of standardization for measurements of program and patient success, unclear outcome expectations, and personal biases are contributing factors to the gap in information regarding the efficacy of programs addressing the needs of people affected by alcohol and substance abuse.
Indigent and Homeless Persons
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A standardized reporting system for collecting information on homelessness would enable researchers to utilize schools to glean insight about the effects of homelessness on children.
Longitudinal research into the outcomes of homelessness and indigence is lacking due mostly to the transience of this group and the fact that many indigent and homeless people move in and out of homelessness. Of particular importance is research into the effects of homelessness on children and how that experience will shape their adult lives. Shelters have reported increased numbers of homeless families, but many lack programs for continued tracking of homeless children. Schools could be of use in gathering information about the effects of homelessness on children, but there is no standardized reporting system for collecting this type of information.
Analytic research into the economic factors that contribute to homelessness does exist through organizations such as the National Institute of Mental Health (NIMH) and the National Alliance to End Homelessness (NAEH) (n.d.). There have been studies that attempt to recognize the micro- and macrolevel risk factors that lead to homelessness, including mental illness (micro) and economic recessions (macro). However, research projects that focus on one issue pertaining to indigence and homelessness, such as the prevalence of substance abuse, would do well to consider their own research in relation to work done on other topics and in other disciplines.
Immigrants and Refugees
Studies on the lives of immigrants and refugees in the United States need to be designed with cultural sensitivity. For example, when analyzing the lack of service usage by certain immigrant or refugee populations, it is not enough to simply say “they don’t use this service”; rather, the socioeconomic and cultural reasons that services are not used need to be found.
More longitudinal research is also needed that follows immigrant children in the United States as they develop into adults. Some of this work is done in educational settings, as schools work to better serve the needs of immigrant children as they grow. Schools can be instrumental in helping outside researchers gather data and contact immigrant families. The Longitudinal Immigrant Student Adaptation (LISA) study conducted by researchers at NYU Steinhardt School of Culture, Education, and Human Development (2012) followed the social and educational development of immigrant children and their families for five years and identified risks and needs associated with educating immigrant children. (For more information on this study, read Learning in a New Land by Carola Suarez-Orozco, Marcelo Suarez-Orozco, and Irina Todorova.) Many of the community services available to immigrants and refugees are independently operated, and many rely on volunteers. These outreach programs could provide useful information on the ways in which these families integrate and develop once in the United States, but a standardized, centralized reporting system is needed for the data to be comparable.
Critical Thinking
Assume that you want to do a cross-disciplinary study on abused individuals. How would you take a cross-disciplinary approach to investigate this population? At what other fields would you look?
9.3 Evaluative Research: Studying Program Efficacy
Evaluative research seeks to determine the value of existing programs that address the needs of vulnerable groups and offer guidance on ways to improve services to these groups. Evaluative research often relies on service providers for data. This means that much of the data collected is ambiguous and, in some cases, skewed.
Evaluative researchers studying the needs of vulnerable populations frequently find themselves dealing with funding cuts. In addition to limiting the size and scope of these studies, funding shortages can prolong the amount of time taken to collect information and report findings. As with all other types of research into vulnerability, evaluative research is often outdated before results are even made available. Combining research efforts across disciplines and organizations pools resources and improves the likelihood that an evaluative study will be completed in a timely manner.
Healthcare: a Science
Vulnerable Mothers and Children
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The scarcity of research into the barriers of access to prenatal care for mothers makes it difficult to gauge the efficacy of various programs.
Biases sometimes skew research results on the efficacy of programs aimed at reducing risks for vulnerable mothers and children. Many studies exist that focus on specific children’s health issues associated with prematurity and low birth weight. For example, a study done by the University of Rhode Island found that children born premature experience poorer health as they grow, experience more social struggles than their full-term peers, and have an increased risk of heart health as adults (University of Rhode Island, 2011). However, not as much research has been conducted into the health and social outcomes for vulnerable mothers. Research into the barriers of access to prenatal and preventive care for mothers is scarce. As such, it is difficult to define which programs are most effective, though research indicates that early and regularly scheduled prenatal care is linked to lowered health risks for infants.
Abused Individuals
Evaluative research into programs for addressing the needs of abused individuals and for preventing abuse indicates that preventive programs are more cost effective than responsive programs. Still, research into these programs would be improved by conducting studies that involve both control and test groups in a given program. Then, the results could be compared against clearly outlined program objectives. Barriers to this research include an uncoordinated system of programs aimed at this vulnerable population.
The Administration for Children and Families (n.d.a) provides some guidance on appropriate responses to child abuse and treating child victims of abuse. This information can be used to help standardize research into program viability.
Chronically Ill and Disabled Persons
Chronic illnesses and disabilities are costly to patients, the nation, and insurance companies. Because of this, much research has been conducted into program outcomes for treating this vulnerable group, like the many ongoing research programs conducted by the Agency for Healthcare Research and Quality (2012). These programs seek to improve health care outcomes while minimizing health care costs. Whereas too much reliance on theories often plagues research into other fields, research into programs for the chronically ill and disabled often has a problematic lack of theory behind it. More research is needed into the ways in which public policy affects this vulnerable group, as public policy decisions trickle down through the health care delivery system. More emphasis on the health outcomes for individuals is also important for creating programs that respond to the needs of chronically ill and disabled people instead of just the need to reduce costs.
Persons Diagnosed With HIV/AIDS
Research intended to evaluate programs for people diagnosed with HIV/AIDS should also include research into the behaviors of this group of patients. Research results should be compared with clearly stated program outcome goals and then consideration given as to why some patients exhibit behaviors that lead to negative health outcomes after an HIV diagnosis. This research should not be conducted in a bubble; treatment programs should be compared with data on other treatment programs to find the best possible ways in which to influence positive patient behavior and treatment compliance, as well as to establish the efficacy of programs in relation to each other.
Persons Diagnosed With Mental Conditions
Just as the network of programs to address the needs of people diagnosed with mental conditions, including private practitioners and mental health wards in short- and long-term inpatient settings, is disjointed and nonstandardized, so too is the research into said programs. Program objectives need to be clearly defined to create programs that work and encourage patients to continue treatments. As with HIV/AIDS, patient behavior affects compliance and program outcomes. Clearly defined test groups and control groups may offer insight into the ways in which patient behavior can be altered to encourage improved outcomes. Other problems exist with the reporting of mental health data due to the stigmatization of mental illness and the protections put into place through the Health Insurance Portability and Accountability Act (HIPAA) and other privacy laws.
Studies of existing program evaluations offer insight into how research in this field should be conducted and understood. Research comparing programs via existing evaluations has found that prevention programs for children, like those focusing on preventing physical abuse and drug abuse, do have a positive impact on the recipients’ risk of developing mental disorders. Yet cost is always a factor in health care, and more research is needed to establish which existing programs are most cost effective and how mental health programs can improve to become more cost efficient and to better patients’ health outcomes.
Suicide- and Homicide-Liable Persons
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Additional research, specific to each vulnerable subgroup, is necessary in order to more effectively meet the needs of people with a predisposition for violent behavior.
Research is needed to improve existing programs that respond to the needs of people who are prone to violence against themselves or others. Not every program is most effective for every vulnerable subgroup. Studies need to consider the subgroups addressed by prevention programs and match the programs with the right subgroups. For example, suicide prevention hotlines may be more effective at reducing suicide attempts among adolescents than among the elderly. The Center for Elderly Suicide Prevention & Grief Counseling (CESP) (n.d.) offers a suicide prevention program aimed specifically at the elderly, and portions of the program may not translate well for use with adolescents. External evaluation of existing programs is needed because internal program evaluation is not always unbiased. Research is under way that is currently investigating the efficacy of existing programs, how public policy affects such programs, and ways in which providers can improve mental health treatment and respond to the needs of suicide-liable individuals. The Services Effectiveness Research Program (SERP) at Duke University studies mental health prevention and treatment services and works to improve standardization of the health care field and create new prevention and treatment methods to reach more people (Duke University, Department of Psychiatry and Behavioral Sciences, 2011).
Persons Affected by Alcohol and Substance Abuse
In the 1980s, federal and state governments responded to drug abuse rates by funding research and prevention programs, but funding dwindled into the 1990s and on into the 2000s. However, that is not to say that research has ceased entirely. The National Institute on Drug Abuse (NIDA) continues to support research into the causes of alcohol and drug dependence and the best ways to treat patients and mitigate the problem in the country. Prevention programs are thought to be most cost effective in the field of substance abuse. Many school systems continue to utilize the Drug Abuse Resistance Education (DARE) (2012) program to teach elementary- and middle-school students ways and reasons to avoid drug use.
Though DARE and other preventive programs have been around for decades, research into the overall outcomes of these programs is problematic. Many such programs lack clearly stated measurable goals, a problem that complicates measuring outcomes and program integrity. In fact, it has been alleged that DARE is not as effective at preventing drug abuse as was once believed (Fitzgerald, 2006; Hanson, n.d.; Perri, 2010). More research is needed into the influencing factors associated with alcohol and drug abuse and into ways in which prevention and treatment programs can respond to them.
Indigent and Homeless Persons
Photo of a homeless man sleeping on a park bench.
Courtesy of sonne07/Fotolia
Researchers can utilize resources such as the U.S. Department of Housing and Urban Development (HUD) and the Homelessness Resource Center to gather information on and compare programs for low-income individuals.
Problems with standardization of information and an overall lack of program evaluation make it difficult to compare services and programs that address the needs of indigent and homeless people. This is because many services are community based, located in churches and private organizations. Resources, including funds and manpower, are at a premium in these organizations. As such, little is left for research and documentation.
The U.S. Department of Housing and Urban Development (HUD) (n.d.) is a resource for information on public policy affecting programs for low-income and homeless individuals. As discussed earlier, the Homelessness Resource Center, a program administered by SAMHSA, has used research to provide recommendations for standardization and best practices for programs that address the needs of the homeless. Researchers can use these resources as a basis for comparison when evaluating programs.
Immigrants and Refugees
Research into the unintended consequences of public policy regarding immigration, such as increased racism against certain immigrant groups, is needed to inform future policy decisions. Research is also needed that assesses the ramifications of policy decisions on the physical and mental health of both documented and undocumented immigrants. Furthermore, research into direct correlations between public policy and immigration rates would be useful in determining what future goals should be.
Organizations like the Pew Research Center (2012) and the National League of Cities (2010) perform and support research into the effects of public policy on the lives of immigrants and into the efficacy of existing programs. Information from third-party research sources may also offer interesting insights and a knowledge foundation that can inform future research efforts.
Critical Thinking
Much of the evaluative data on services for special populations comes from service providers and is usually skewed and inaccurate. Why would this be the case? Why wouldn’t a service provider provide complete and accurate information?
Case Study: Health Surveys Are Subjective
Much of the research that seeks to define and project numbers of vulnerable populations is subjective. Survey respondents may decide not to participate, which creates a situation wherein some social groups are over- or underrepresented in the surveys. Of those who do choose to participate, absolute honesty is not guaranteed. Face-to-face surveys often have better participation rates, but respondents may feel uncomfortable disclosing private health and financial information to surveyors.
An example of one such health survey was recently conducted by the health department in the city of Louisville, Kentucky. The survey sought information on the way residents used health care providers throughout the city, with the intention of learning how citizens perceive the current health system in Louisville. All Louisville residents were invited to participate. However, one limiting factor of the survey was that it was available online and not mailed or otherwise made available. The online nature of the survey meant that certain groups, particularly immigrants and low-income individuals who did not have Internet access at home, were likely to be underrepresented in the survey results. The multiple-choice answer selection also limited the survey by forcing participants into a set response, not allowing for answers outside the multiple-choice selection or for further information regarding a particular incident.
Some of the survey questions were objective, such as the participant’s zip code, gender, and age range. Some questions were purposefully subjective, and answers were likely to be skewed by respondents’ understanding of the questions and possible answers. Examples of subjective questions from the survey include the following:
The last time you had to use the emergency room, what was the reason?
nonemergency issue (rash, prescription refill, etc.)
urgent issue (cut, injury to joint, fever, etc.)
emergency (difficulty breathing, chest pain, seizures)
not applicable
This question relies on the respondent and the questioner having the same idea of what constitutes an emergency. Suggestions are included in parentheses, but not every possibility is listed. Another example of subjective survey questioning is the rating scale:
Using the scale below, please check the box for each issue that you think is a big barrier to health care in Louisville Metro/Jefferson County.
Strongly agree Agree Neither agree nor disagree Disagree Strongly disagree No opinion
1. Doctor’s office hours
2. Transportation
3. Knowing where to go in a health care facility
4. Cost or expenses
5. Discrimination/bias
6. Health knowledge
7. Health beliefs
8. Insurance issues
9. Stigma
10. Culture and language
11. Medicaid rules
12. Fear of deportation
Source: LouisvilleKY.gov. (2012). 2012 Community Health Needs Assessment Survey. http://www.surveymonkey.com/s/HealthNeedsSurvey
Researchers are often aware that sliding scale questions like this are subjective, and in this case patient perception (which is subjective by nature) was exactly what researchers wanted to know. Subjectivity in survey questions is not always a barrier to quality research, but readers should be aware of it when reading research results.