The Tuberculosis Behavioral and Social Science Research Forum Proceedings
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Appendix C: TB Behavioral and Social Science Research Gaps and Needs: Major Research Topics, Subtopics, and Research Questions
Major Research Topics, Subtopics, and Research Questions
Intrapersonal influences on behavior such as knowledge, attitudes, and perceptions, patient satisfaction, and social stigma affect the individual behavior of patients including health seeking behaviors and adherence to treatment. This level also addresses individual-level issues that may affect providers’ behaviors, such as adherence to guidelines and recommendations.
A. Patients’ knowledge, attitudes, and perceptions (KAP)
An individual’s knowledge, attitudes, and perceptions with respect to health in general and with a specific illness, such as TB, influence his/her behavior. Specifically, these factors can influence health seeking, understanding of the diagnosis, understanding of treatment, treatment initiation, treatment adherence, and general interactions with health care providers.
Forum participants identified the importance of further understanding patients’ knowledge, attitudes, and perceptions with respect to TB, with a particular focus on latent tuberculosis infection (LTBI). The need to identify any differences in these factors among different ethnic and cultural groups, specifically Latinos and other foreign-born populations, was emphasized. Finally, participants called for the further use of health behavior models and theories to be used as frameworks to better understand the factors that influence knowledge, attitudes, beliefs and practices of TB patients.
- How well do patients understand LTBI and TB disease? Is knowledge associated with adherence?
- What are the KAP of TB in Latino immigrants?
- What is the explanatory model of TB in Latino immigrants? (Including beliefs about health and sources of illness from Kleinman)
- What are the health education needs of people with TB? What are patients’ knowledge on TB facts, treatment, adherence, etc.?
- What are the health education needs (and KAP) of newly arrived immigrants and/or “transient” foreign-born persons with respect to TB transmission, treatment, and adherence?
- What emotions do patients feel when hearing their diagnosis? How can we best assess these emotions and help address them?
- What are the effects of knowledge and attitudes among different ethnicities and nationalities on LTBI treatment initiation, adherence, and completion?
- What is the relationship of patient fears about TB diagnosis and/or treatment and completion of treatment?
- How can behavior change theories and models be used to better understand and intervene (interventions) for LTBI?
- Can we adapt the Prochaska and DiClemente’s Transtheoretical Model utilizing the stages of change constructs to TB patient education (particularly LTBI)?
- What intervention(s) and activities effectively remove or minimize patient engagement barriers? How do other barriers, including patient fear, affect TB treatment completion?
- What qualitative (ethnographic) research (e.g., case studies) can we conduct with patients in each group to provide descriptive content on 1) changes in experience over time, and 2) communication to family, peers, and others in a patient’s household?
- What literature exists on the accuracy of self-reporting, including issues that relate to interviewer and respondent relationships (e.g., gender, class), patient sensitivity, social desirability bias, and demand characteristics?
B. Patients’ behaviors
1. Health care-seeking behaviors
Health care-seeking behavior for TB includes the recognition of TB-related symptoms, presentation to health facilities and/or alternative medical resources (e.g., family and community healers), and adherence to effective treatment regimens and treatment monitoring. Individual factors, such as knowledge, attitudes, gender, sex, ethnicity, income, and education, in addition to health service barriers, including accessibility and acceptability of care, cost of services, and quality of care, can often delay or prevent a person from seeking TB care and treatment.
Forum participants identified the need to further understand and influence the barriers and facilitating factors to seeking health care for LTBI and TB diagnosis, treatment monitoring, and completion of treatment for different populations. Specific questions were raised regarding the availability, accessibility, acceptability, and affordability of care. In addition, the group discussed the role of further understanding how an individual’s perceptions of the health care system and health care providers influence their health seeking behavior.
- For different groups, what are the barriers to care seeking? Do they include the availability, accessibility, acceptability, and affordability of care? Is stigmatization a reason for delay in seeking care for TB?
- Why do persons who have symptoms and known past exposure not present earlier for diagnosis? Do barriers include denial or fear?
- What factors predict initiation of LTBI treatment?
- What is the effect of using QuantiFERON testing vs. Purified Protein Derivative (PPD) on patient acceptance, especially regarding LTBI?
- From the case worker perspective, what are some patient models of disease regarding treatment-seeking behavior?
- What is the image of “public health centers” among foreign-born persons? How does this image affect health-seeking behavior?
- What are the systematic (operational) issues regarding delays in TB diagnosis? Are foreign-born TB patients (compared with U.S.-born) more likely to have longer delays in seeking care? Are they likely to utilize more health care providers than U.S.-born persons before diagnosis?
- How is a foreign-born patient’s TB treatment-seeking behavior in this country influenced by the policies and practices of his/her home country? (Suggested methodology was to conduct a linked study with the foreign-born TB patient’s country of origin focusing also on the communities, providers/programs, policy makers, etc.)
- What social and economic disparities hinder people from seeking care? Does perceived racism hinder health-seeking behavior?
- What are the effects of medical pluralism on treatment-seeking behavior? What are the delays and sources of care?
- How can we reduce aversion to venipuncture? How do we increase the value of one visit for LTBI testing?
- Will educational materials which address common misconceptions towards TB increase treatment-seeking behaviors among foreign-born persons?
2. Adherence to treatment
Treatment regimens for LTBI and TB include providing the safest, most effective therapy in the shortest amount of time and ensuring adherence to prescribed regimens. The major determinant of a successful treatment outcome is patient adherence to the prescribed drug regimen. Nonadherence can lead to inadequate treatment which can result in relapse, continued transmission, and the development of drug resistance.
Directly observed therapy (DOT) and self-administered therapy are two strategies commonly used in TB control. DOT, a major component of case management, is currently recommended for all patients with TB disease. In addition to DOT, research has shown the use of incentives and enablers can also enhance patient adherence. Directly observed treatment for LTBI is less common due to limited resources. Ensuring treatment completion of LTBI poses unique challenges as it is often self-administered.
Forum participants identified the importance of further understanding the barriers and facilitators that affect the initiation, duration, and completion of treatment of LTBI and TB disease, specifically for different populations, such as foreign-born persons and incarcerated/newly-released prisoners. Discussion focused on ways to better understand and enhance DOT. In addition, a focus of the discussion centered on how to improve patient acceptance of LTBI treatment. The discussion also posed questions on how behavior change theories and models could be utilized to better understand and overcome barriers to treatment for LTBI and TB disease.
- Who is at high risk for non-adherence?
- What indicators predict patient adherence to treatment for TB/LTBI, particularly in groups such as Latino immigrants?
- What factors influence positive adherence, and how are these to be used to predict treatment regimens (daily/bi-weekly) necessitated in different DOT groups? (Suggested methodology is the use of retrospective studies)
- What are the barriers to completing LTBI treatment?
- What are the true “costs” of adherence (e.g., job loss, day care, and loss of social status)?
- What are some ways to address issues that relate to adherence and completion of LTBI and TB treatment among “hard to reach populations” (e.g., persons released from jail)?
- What is the relationship of patients’ capacity to engage in the TB treatment plan and completion of treatment?
- What types of framing (i.e., positive vs. negative) best promote adherence?
- Which conceptual models best explains TB adherence behavior?
- What is the relationship of the patient’s participation in health care decisions and effective TB treatment completion?
- How can we best understand and then manipulate patient risk/benefit calculations regarding LTBI initiation and completion?
- What interventions can address basic needs (e.g., housing) and treatment adherence versus those that focus only on treatment adherence through methods such as education and/or incentives?
- What cultural and educational interventions address adherence with TB and LTBI treatment?
- What interventions and activities effectively remove role model barriers to TB treatment completion?
- Can peer support (e.g., the pairing of a patient with someone who is also experiencing the disease) aid in adherence? What is the usefulness of a patient-to-peer educator match?
- Does a core team approach, which includes former TB patients who have successfully completed treatment, improve adherence and treatment completion among persons from high-risk groups?
- What is the effect and cost-effectiveness of a cultural intervention (e.g., educational intervention) on LTBI therapy adherence in Latino immigrants?
- Will the use of a standardized educational intervention guided by constructs from health behavior theories increase the number of skin test positive contacts initiating / completing treatment?
C. Patient satisfaction
Patient satisfaction is how individuals regard the health care services or the manner in which they are delivered by health care providers as useful, effective, or beneficial. It is often based on patient expectations of care and the self-assessment of their experiences. Patient satisfaction may play a major role in a patient’s behaviors. If a patient is dissatisfied with the relationship with their provider or with the clinical setting, he or she is much less likely to be adherent to medications, keeping appointments, identifying contacts, and so forth. Research has shown that patient satisfaction can be increased with effective patient-provider communication and development of a trusting relationship.
Forum participants identified the importance of the relationship between a patient, provider, and health care system that serves them and the need to better understand this relationship and the role it plays, especially from the perspective of different ethnic and cultural groups. Forum participants also expressed the importance of determining how patient satisfaction may be influenced by TB care and services. They also highlighted the need to explore the influence of patient satisfaction on behavior such as adherence.
- What patient, clinic, or service factors influence patient satisfaction with TB services? What factors correlate with patient default?
- What is the relationship between patient satisfaction with the TB treatment process, structure, and system and TB treatment completion?
- What are some ways to elicit feedback from patients about how to improve TB care? What types of exit surveys after treatment completion should be used?
D. Social stigma
Evidenced both in research and in practice, stigma associated with TB appears to be universal. The consequences of stigma can be seen affecting care-seeking behaviors, as persons have been known to hesitate or choose not to disclose their TB status to family, friends, and co-workers out of fear of being socially ostracized, in addition to losing their employment or temporary housing. Research has demonstrated that in some cases, personal rejection occurs as a result of the stigma surrounding TB. Stigma has also been shown to hinder adherence to treatment. By identifying the consequences of stigma, social science research has illustrated the need for effective intervention strategies to mitigate it.
During breakout discussions, the research questions surrounding stigma highlighted the continuing need to identify the effects or consequences of stigma on care seeking, adherence to treatment, and cooperation with health care providers, especially during contact investigations, to determine whether certain populations or sub-populations (e.g., foreign-born communities) are adversely affected by stigma and in which settings (e.g., residential or workplace). Forum participants also raised the issue of better understanding different perspectives and sources of stigma. Additionally, discussions revolved around the need for identifying and testing effective ways to mitigate the influences that stigma has on individuals and communities.
- What current research exists on stigma associated with TB as well as other issues (e.g., HIV/AIDS)?
- How does stigma differ by income levels? Are low-income patients as concerned with stigma as middle or upper class TB clients?
- What effects, positive and negative, does stigma have on decisions to seek help, initiate treatment, and complete treatment?
- What are some reasons, such as stigmatization, for delays in seeking care for TB?
- What is the effect of stigma on foreign-born women with regard to TB?
- How can worksite and residential site-based outreach, such as in nursing homes and homeless shelters, be done in non-stigmatizing and non-penalizing way, so that people do not have to fear losing their jobs or the ability to stay at a site?
- How can we use what we have learned about stigma to motivate patients?
- What are some ways to reduce perceived TB stigma among patients and their families? What tests can we conduct to determine the best approaches to improving TB program efficiency and treatment completion rates?
- Would frequent media production on TB prevention and stigma increase TB awareness for government officials? African-American communities?
- Can stigma be reduced through ad campaigns? (Suggested methods include using various experimental designs)
- What survey research can we conduct in patient and provider populations to assess discrimination, stigma, and treatment issues among people with HIV/TB as well as people with TB in the home environment, community, and worksite?
- Are current conceptual frameworks (for understanding stigma)
- o If “yes” to above, what frameworks (e.g., focus groups, interviews, and surveys) can be used to collect research on providers and patients?
- o If “no” to above, what formative research can be conducted on the origins of TB stigma and its specific components?
- How do we define “stigma” from the perspectives of the patient, provider, and community? Who is the stigmatizer and why? (Suggested methods include the use of focus groups and the Delphi technique)
E. Providers’ knowledge, attitudes, and perceptions
A health care provider’s knowledge, attitudes, and perceptions (KAP) about LTBI and TB play an important role in their ability to diagnose and treat individuals with TB. A variety of factors, such as medical and health-related training (e.g., U.S.-training vs. foreign training, generalist, or specialist), cultural and ethnic background, practice settings, preferred sources of information and learning styles can influence providers’ knowledge, attitudes and beliefs about LTBI and TB.
Forum participants identified the need to better understand the TB-related knowledge, attitudes, and perceptions of different providers in a variety of practice settings, including private physicians, primary care physicians, civil surgeons, international medical graduates (IMG), and providers who serve foreign-born populations. Forum participants called for the further use of health behavior models and theories to be used as frameworks to better understand the factors that influence knowledge, attitudes, beliefs and practices of TB providers and how these factors influence their ability to diagnose and treat TB patients.
- What are the current levels of TB KAP of health care providers, particularly among non-health department providers, primary care physicians, civil surgeons?
- Are provider characteristics (e.g., attitudes and knowledge) and other factors (e.g., time and workload) important in predicting adherence and successful treatment?
- What are effective methods for raising TB awareness (e.g., the index of suspicion) as a differential diagnosis among private health care providers?
- In seeking to change foreign-trained physicians’ views of Bacille Calmette-Guerin (BCG) vaccine and LTBI, is the message or the process more important?
- In what ways do gender and ethnicity preconceptions of patients affect program performance, including timeliness of diagnosis, nature of relationship with patient, and case management? (Suggested methods include using a mix of qualitative and quantitative methods, such as conducting interviews/surveys with providers* and patients; having providers and patients keep diaries; and observations.)
*Providers can include a broad spectrum, (e.g., outreach workers and anyone who has contact with patients).
- What specific methods or approaches are most effective in educating private health care providers about LTBI and TB?
- What are some ways to develop and test alternative modes of educating IMGs and private providers regarding disease and treatment of LTBI and TB?
- What are some ways to conduct a quasi-experimental group design with practitioners using a “standardized” approach versus a tailored messaging approach (e.g., counseling and encouragement vs. education)? Some behaviors on which to focus include adherence behavior, appointment keeping, and completion of treatment.
F. Provider training and practices
Providers serving individuals at risk for TB in the United States come from a wide range of backgrounds and perspectives. They may have differing knowledge, attitudes, and practices related to TB prevention and control based on factors such as, where they completed their medical training, residency, board certification requirements, and continuing education experiences. Personal and cultural factors may also affect their practices. All of these factors may influence the providers’ level of professional competence, cultural competency, and clinical behaviors, including their adherence to professional practice guidelines.
1. Diverse training
Providers have different levels of knowledge, attitudes and practices related to TB prevention and control, based on factors such as where they completed their medical training, residency, board certification requirements, and continuing education experiences. Moreover, many foreign-trained providers and international medical graduates (IMG) have an increasingly important role in TB prevention and control efforts, as they may be the first point of contact for foreign-born individuals with TB.
Forum participants identified the need to assess the impact of working with providers of different cultural and professional backgrounds, who have undergone different types of training in the area of TB control. Participants also identified the need to improve collaborations between health department and non-health department providers.
- How can health care workers best assess patient levels of knowledge and be trained to match educational messages and interventions to patient needs?
- How do we best train TB case workers based on lessons learned?
- What successful practices have been used to entice non-health department providers to cooperate with the health department?
- How can we get private providers and international medical graduates to do a better job of diagnosing, prescribing, and treating LTBI?
- How can we better improve foreign-trained providers’ contributions to TB control in non-health department settings?
- Can an educational / awareness campaign encouraging providers to consider TB in the differential diagnosis of respiratory symptomatic patients increase detection of disease in care settings (e.g., emergency rooms, walk-in clinics)?
2. Cultural competency
The role of cultural competency in U.S. TB programs has become increasingly important, especially over the past two decades as the proportion of persons with TB who are foreign born has rapidly increased and now surpasses U.S.-born cases. In addition, widening disparities have emerged among other U.S.-born groups, such as African Americans in the Southeast. Efforts to promote health and prevent and treat disease within culturally diverse groups will involve building the capacity of programs to become culturally competent. This is extremely important in health care, as it has generally been shown that minority groups use fewer services and are less satisfied in general with their care. Furthermore, patients may avoid care out of fear of being misunderstood or discriminated against. Providers need to be aware of and understand the impact that culture can have on a patient’s TB knowledge, attitudes, beliefs, and practices. By increasing the cultural competency of providers, they will be better equipped to provide the most appropriate TB care and treatment.
Forum participants identified the need to further understand the role of cultural competency on the delivery of services to TB patients and ways to increase cultural competency among health care providers, including public health nurses and outreach workers. In particular, participants focused on how culturally competent health care workers can influence patient’s adherence to treatment for LTBI and TB.
- Does being cultural competent make a difference? How can health departments become sensitive to patients’ needs without stereotyping? (Suggested methodology is to conduct evaluation research)
- Does cultural competency have any effect on relationships with patients? Does it lead to better adherence and completion rates?
- Is further research needed on the effect of cultural competency training (evaluation and efficacy) for outreach and public health staff?
- What is the effect of cultural competency training of staff on LTBI adherence in immigrants?
- What core components would constitute a training program to enhance cultural competency among front line health care providers? Which components generate the most significant awareness of change?
- What are the cultural competency training needs of public health nurses and TB outreach workers? What are the evaluation outcomes of such training?
- From a research, treatment, and control perspective, how should the issue of “pigeon holing” stereotypes be addressed among TB control staff, providers, and patients?
- How do providers best acknowledge and incorporate traditional cultural beliefs and behaviors of foreign-born patients into patient-centered needs assessments, TB screening, diagnosis, and patient treatment plans?
- How do we, as researchers and program persons, acknowledge, utilize and/or incorporate the use of traditional methods among ethnic groups (especially among foreign-born persons from Southeast Asia) regarding TB treatment?
- Are clients more likely to complete treatment if their provider(s) is of the same ethnicity, gender, class, or language? (Suggested methodology is to conduct intervention studies research, especially on topics, such as LTBI adherence)
- Regarding message acceptability, is there a difference in knowledge and adherence behavior when the caregiver is matched with the patient on race, gender, or both, particularly in generally segregated communities?
- What specific methods should be developed for assessing cultural beliefs and behaviors that are related to TB?
3. Clinical Practices
Clinical practices of providers can include TB screening and treatment, patient management, collaborating with the health department for contact investigations, and adherence to guidelines and recommendations. Just as patients are faced with individual or structural barriers to adhering to LTBI and TB treatment, health care providers also face numerous challenges and barriers to adherence to TB screening and treatment guidelines and recommendations. Providers must be aware of CDC and American Thoracic Society guidelines in order to implement them. In addition, other barriers such as provider background and practice setting may influence their adherence to guidelines. Identification of barriers to the awareness of and adherence to guidelines and ways to address these barriers can improve provider practice and lead to the provision of more effective health care.
Forum participants identified the need to determine ways to increase providers’ awareness and adherence to TB treatment guidelines for providers in different health care settings. In these discussions, “providers” include private providers, community health workers, case workers, non-health department physicians, and foreign-trained providers.
- What provider behaviors best prevent TB outbreaks? How can they reduce diagnostic delay in patients with TB?
- What are the effects of medical pluralism on provider response to patients’ treatment models? (Special relevance should be given to foreign-born persons for delayed diagnosis and adequate treatment of LTBI and TB)
- How do opinion leaders change behavior of others? How can opinion leaders improve translation of recommended treatment standards to provider practice?
- What type of practitioner’s guideline is needed to proactively identify “high-risk of drop-out” patients in order to address issues which would prevent dropping out of care? What information should be provided to reinforce and support positive health behaviors and their determinants?
- What methods should be explored for improving provider adherence to TB guidelines and recommendations?