Alexis Koskan | Arizona State University (original) (raw)

Papers by Alexis Koskan

Ethnicity & Health, Oct 8, 2012

Health Promotion Practice, Sep 14, 2012

Training is an essential component of health programs that incorporate promotoras de salud (the S... more Training is an essential component of health programs that incorporate promotoras de salud (the Spanish term for community health workers) in the delivery of health education and behavioral interventions to Hispanics. During training sessions, promotoras are exposed to information and skill-building activities they need to implement the health programs. This analysis was one component of a broader study which explored program planners' approaches to recruiting and training promotoras to deliver and sustain health promotion programs for Hispanic women. The purpose of this study was to examine promotora-curriculum and training processes used to prepare promotoras to deliver health programs. The authors examined transcripts of 12 in-depth interviews with program planners and conducted a content analysis of seven different training materials used in their respective promotora programs. Interview themes and narratives included program planners' varying conceptualizations of promotora-training, including their personal definitions of "training the trainer," the practice of training a cadre of promotoras before selecting those best fit for the program, and the importance of providing goal-directed, in-depth training and supervision for promotoras. The content analysis revealed a variety of strategies used to make the training materials interactive and culturally competent. Study implications describe the importance of planners' provision of ongoing, goal-directed, and supervised training using both appropriate language and interactive methods to engage and teach promotoras.

Nutrition and Health, Oct 12, 2022

Background: Females are prone to urinary tract infections (UTIs) due to estrogen fluctuations aff... more Background: Females are prone to urinary tract infections (UTIs) due to estrogen fluctuations affecting vaginal flora. While menstruating, increased fluid consumption to support urination frequency and void volume may be important, as the urethra and urinary tract are more predisposed to bacteria, particularly UTI pathogens. Aim: This study aimed to investigate the impact of hydration on urinary tract health during menstruation among underhydrated premenopausal women. Methods: Thirteen females participated in a 60-day 2 × 2 randomized crossover trial to evaluate the effectiveness of consuming ≥2.2 L of total beverage fluid intake, with 1.9 L being water, (intervention, INT) and maintaining habitual fluid intake (control, CON) on two subsequent menses. Participants completed fluid and urination diaries at days 2 and 5 after the onset of bleeding (day 1) to determine the fluid amount consumed and urination frequency. Urine concentration was assessed in afternoon (days 2 and 5) and uropathogenic bacterial activity in first-morning (days 3 and 6) urinations. General linear models assessed differences in bacterial and hydration outcomes. Results: The intervention led to a 62% mean total fluid increase, INT 3.0 ± 1.1 L and CON 1.9 ± 0.9 L, p < 0.001, [Formula: see text] = 0.459. Urination frequency was greater and urine concentration less in the INT to CON, all ps < 0.05, [Formula: see text] range = 0.023–0.019. Only four cultures detected uropathogenic bacteria, with no patterns between conditions or days, making it difficult to determine the intervention's effectiveness. Conclusion: Fluid intake increased, and hydration status improved. No differences in uropathogenic bacterial activity were seen between the hydration and control conditions.

Journal of American College Health

BACKGROUND The rampant spread of misinformation about COVID-19 has been linked to lower uptake of... more BACKGROUND The rampant spread of misinformation about COVID-19 has been linked to lower uptake of preventive behaviors such as vaccination. Some individuals, however, have been able to resist believing in COVID-19 misinformation. Further, some have acted as information advocates, helping to spread accurate information and combat misinformation about the pandemic. OBJECTIVE Guided by the positive deviance framework, which describes how some individuals adopt more positive behaviors than their peers (deemed “positive deviants,” this work explored these information advocates’ perspectives, behaviors, and information-related practices. METHODS To identify positive deviants for this study, we used outcomes of survey research of a national sample of 1498 adults to find individuals who scored a perfect or near-perfect score on COVID-19 knowledge questions who also self-reported sharing or responding to news information within the past week. Among this subsample, we selected a diverse sampl...

Journal of Public Health

Introduction COVID-19 vaccines significantly reduce the risk of complications and hospitalization... more Introduction COVID-19 vaccines significantly reduce the risk of complications and hospitalizations due to this virus. When COVID-19 vaccines first became commercially available, roughly 30% of U.S. adults reported being hesitant to receive these newly developed vaccines, and 15% said they would not receive the vaccine. However, by May 2021, 19% of adults were vaccine-hesitant, and 13% refused to vaccinate against COVID-19. It is critical to understand why adults' degree of willingness to vaccinate against COVID-19 changed over time to plan for future pandemics and vaccination campaigns. Methods We conducted two waves of survey research over five months (January and May 2021) with a panel of 890 U.S. adults. One survey question assessed willingness to vaccinate against COVID-19. The response option included a slider scale ranging from 0 (signifying complete unwillingness) to 10 (complete willingness). We asked participants whose willingness score changed by more than one point to report their rationale for their change in perceptions. We conducted a conventional content analysis on all qualitative responses. Results We analyzed qualitative responses for 289 participants, 54.7% of whom had not been vaccinated against COVID-19 by May 2021. Among those who remained unvaccinated, 36.1% reported increased willingness to vaccinate. The most commonly cited reasons for becoming more willing to receive the vaccine include believing that COVID-19 vaccines are safe and effective, protecting against the pandemic, and desiring to return to pre-pandemic life. Reasons for increased COVID-19 vaccine hesitancy include vaccine safety concerns, the low perceived need for the vaccine, distrust in how COVID-19 vaccines are made and of larger institutions such as the government and pharmaceutical companies, and concerns about vaccine effectiveness. Conclusion Findings illuminate the rationale behind individuals' changes in their degree of willingness to vaccinate against COVID-19. It is critical to incorporate these considerations in future vaccine rollout initiatives to increase the public's vaccine confidence.

Vaccines

In early 2022 in the U.S., rural adults were the least likely to vaccinate against COVID-19 due t... more In early 2022 in the U.S., rural adults were the least likely to vaccinate against COVID-19 due to vaccine hesitancy and reduced healthcare access. This study explored the factors influencing rural adults’ COVID-19 vaccine perceptions and their acceptance of pharmacist-administered vaccination. We utilized phone-based semi-structured interviews with 30 adults living in rural regions of one southwestern state and analyzed the data using a team-based thematic analysis approach. Vaccine-willing participants described knowing other people affected by the virus and their desired protection from the virus. They reported trusting scientific institutions and the government to provide safe vaccines. Vaccine-hesitant populations, however, feared that the COVID-19 vaccine development process had been rushed, compromising the safety of these newer vaccines. Although they differed in the news sources they preferred for receiving COVID-19 vaccine information, both vaccine-willing and vaccine-hesi...

Health Promotion Practice, 2012

Training is an essential component of health programs that incorporate promotoras de salud (the S... more Training is an essential component of health programs that incorporate promotoras de salud (the Spanish term for community health workers) in the delivery of health education and behavioral interventions to Hispanics. During training sessions, promotoras are exposed to information and skill-building activities they need to implement the health programs. This analysis was one component of a broader study which explored program planners’ approaches to recruiting and training promotoras to deliver and sustain health promotion programs for Hispanic women. The purpose of this study was to examine promotora-curriculum and training processes used to prepare promotoras to deliver health programs. The authors examined transcripts of 12 in-depth interviews with program planners and conducted a content analysis of seven different training materials used in their respective promotora programs. Interview themes and narratives included program planners’ varying conceptualizations of promotora-tra...

Health Communication, 2013

Although screening reduces colorectal cancer (CRC) incidence and mortality, screening rates are l... more Although screening reduces colorectal cancer (CRC) incidence and mortality, screening rates are low, particularly among CRC patients' first-degree relatives (FDRs). Little is known about discussion of family members' risk of CRC among patients and their health care providers or with their FDRs. The purpose of this research, guided by the Protection Motivation Theory, was to assess patients' patterns of disclosure of CRC diagnosis to adult siblings and/or children and discussion of familial risk by healthcare providers. A cross-sectional sample of patients who received care at a comprehensive cancer center was recruited to complete telephone-based interviews related to disclosure of CRC diagnosis to FDRs, recall of physician counseling about familial risk, and patients' perception of CRC risk to FDRs. Sixty-nine patients completed the interview. Most participants (n = 67, 97%) had informed their adult children or siblings of their CRC diagnosis to keep their family informed of their health status (n = 15, 22%) and to encourage FDRs to screen for CRC (n = 14, 20%). More than half of the participants' physicians (n = 38, 55%) discussed FDRs' risk of developing CRC with the patient. However, a substantial proportion of patients reported no physician discussion of this risk (n = 28, 41%). Data from this study may guide the development of interventions to facilitate physician discussion and counseling of CRC patients about their FDRs' risk for CRC. However, future studies should explore whether FDRs are likely to be screened after becoming aware of their family…

Genetic Testing and Molecular Biomarkers, 2014

While ethical concerns about participating in biospecimen research have been previously identifie... more While ethical concerns about participating in biospecimen research have been previously identified, few studies have reported the concerns among individuals with familial risk for hereditary cancer (IFRs). At the same time, biomedical researchers often lack training in discussing such concerns to potential donors. This study explores IFRs' and biomedical researchers' perceptions of ethical concerns about participating in biobanking research. In separate focus groups, IFRs and biomedical researchers participated in 90-min telephone focus groups. Focus group questions centered on knowledge about laws that protect the confidentiality of biospecimen donors, understanding of informed consent and study procedures, and preferences for being recontacted about potential incidental discovery and also study results. A total of 40 IFRs and 32 biomedical researchers participated in the focus groups. Results demonstrated discrepancies between the perceptions of IFRs and researchers. IFRs' concerns centered on health information protection; potential discrimination by insurers and employers; and preferences for being recontacted upon discovery of gene mutations or to communicate study results. Researchers perceived that participants understood laws protecting donors' privacy and (detailed study information outlined in the informed consent process), study outcomes were used to create a training tool kit to increase researchers' understanding of IFRs' concerns about biobanking.

The Qualitative Report, 2014

Advances in telecommunication technology allow biomedical researchers to explore new, inexpensive... more Advances in telecommunication technology allow biomedical researchers to explore new, inexpensive opportunities for conducting focus group research. This article reports our experiences using such technology to engage individuals genetically at risk for cancer about biospecimen research. Telephone-based focus groups were conducted with a total of 40 individuals, and participants were asked about their experiences and perceived benefits and limitations of participating in a telephone focus group about biospecimen research. The lessons learned can effectively be applied to other areas of health research. In particular, this method may be most useful to engage individuals who are less apt to speak in public, and/or when there are concerns over privacy if face-to-face discussions methods are used.

Bone Marrow Transplantation, 2014

Hispanic Health Care International, 2013

There is widespread recognition of the cultural and linguistic appropriateness of promotoras de s... more There is widespread recognition of the cultural and linguistic appropriateness of promotoras de salud (a Spanish term for community health workers) in health education and outreach among Hispanic communities. Yet there are significant gaps in the literature regarding the preparation, implementation and evaluation of promotoras' engagement in research. To address this gap, we examine promotoras' research-related training, roles, responsibilities, and contributions in a community-based participatory research project involving a multi-site randomized controlled trial of a physical activity intervention for Mexican-origin women in Texas and South Carolina. We identify both benefits and challenges associated with promotoras' engagement as community researchers; examine variations and differences in promotora roles and responsibilities related to the research contexts, sites, settings, and individual characteristics; and discuss implications for research and practice.

Journal of Public Health Management and Practice, 2013

The use of promotoras de salud is an increasingly widespread delivery approach for communitybased... more The use of promotoras de salud is an increasingly widespread delivery approach for communitybased health education and promotion programs targeting obesity-related lifestyle behaviors for Hispanic populations. Addressing a gap in the literature, this research examined the sustainability of promotora-led initiatives from the perspectives of those who plan, implement, and evaluate these programs. We conducted 24 in-depth interviews with program planners representing 22 promotora programs focused on Hispanic women's health in ten states. Findings illustrated program planners' opinions regarding the components, logistics, and barriers to promotora program sustainability. Several participants challenged the notion of promotora program sustainability by reframing the issue as promoting individual promotoras' well-being and social mobility rather than maintaining their role in the program over time. Implications for community health planning, management, and policy include developing sustainability strategies during program planning stages and implementation of policies to more effectively integrate promotoras into existing healthcare systems at local, state, and national levels. There is increasing recognition of the roles and contributions of community health workers (CHWs) in delivering health education and promotion programs and improving access to healthcare resources among marginalized groups. 1-4 Although there is no universally

Journal of Health Care for the Poor and Underserved, 2012

Cancer innovations, such as biobanking technologies, are continuously evolving to improve our und... more Cancer innovations, such as biobanking technologies, are continuously evolving to improve our understanding and knowledge about cancer prevention and treatment modalities. However, the public receives little communication about biobanking and is often unaware about this innovation until asked to donate biospecimens. It is the researchers' ethical duty to provide clear communications about biobanking and biospecimen research. Such information allows the public to understand biobanking processes and facilitates informed decision making about biospecimen donation. The aims of this paper are 1) to examine the importance of clear communication as an ethical imperative when conveying information about cancer innovations and 2) to illustrate the use of an organizing framework, the CLEAN (Culture, Literacy, Education, Assessment, and Networking) Look approach for creating educational priming materials about the topic of biobanking.

Journal of Cancer Education, 2012

Patient-related barriers have hindered cancer patients' abilities to participate in the decision-... more Patient-related barriers have hindered cancer patients' abilities to participate in the decision-making processes to participate in clinical trials. However, little is known about patients' emotional barrier of fear and how physicians influence this barrier. We conducted 48 in-depth interviews with cancer patients to determine their knowledge and attitudes about participating in clinical trials, transcribed interviews verbatim, and qualitatively analyzed the transcripts using content analysis. For the purpose of this manuscript, we focused on findings related to the role of the emotional barrier of fear in cancer patients' perceptions of participating in clinical trials. The majority of cancer patients (n040, 83.3%) discussed fears surrounding clinical trials, particularly as it related to cancer diagnosis, clinical trial participation, and fear of the unknown. In conclusion, providers might consider addressing the role of fear in patients' considering participating in a clinical trial.

Health Promotion Practice, 2012

Training is an essential component of health programs that incorporate promotoras de salud (the S... more Training is an essential component of health programs that incorporate promotoras de salud (the Spanish term for community health workers) in the delivery of health education and behavioral interventions to Hispanics. During training sessions, promotoras are exposed to information and skill-building activities they need to implement the health programs. This analysis was one component of a broader study which explored program planners’ approaches to recruiting and training promotoras to deliver and sustain health promotion programs for Hispanic women. The purpose of this study was to examine promotora-curriculum and training processes used to prepare promotoras to deliver health programs. The authors examined transcripts of 12 in-depth interviews with program planners and conducted a content analysis of seven different training materials used in their respective promotora programs. Interview themes and narratives included program planners’ varying conceptualizations of promotora-tra...

Health Communication, 2013

Although screening reduces colorectal cancer (CRC) incidence and mortality, screening rates are l... more Although screening reduces colorectal cancer (CRC) incidence and mortality, screening rates are low, particularly among CRC patients' first-degree relatives (FDRs). Little is known about discussion of family members' risk of CRC among patients and their health care providers or with their FDRs. The purpose of this research, guided by the Protection Motivation Theory, was to assess patients' patterns of disclosure of CRC diagnosis to adult siblings and/or children and discussion of familial risk by healthcare providers. A cross-sectional sample of patients who received care at a comprehensive cancer center was recruited to complete telephone-based interviews related to disclosure of CRC diagnosis to FDRs, recall of physician counseling about familial risk, and patients' perception of CRC risk to FDRs. Sixty-nine patients completed the interview. Most participants (n = 67, 97%) had informed their adult children or siblings of their CRC diagnosis to keep their family informed of their health status (n = 15, 22%) and to encourage FDRs to screen for CRC (n = 14, 20%). More than half of the participants' physicians (n = 38, 55%) discussed FDRs' risk of developing CRC with the patient. However, a substantial proportion of patients reported no physician discussion of this risk (n = 28, 41%). Data from this study may guide the development of interventions to facilitate physician discussion and counseling of CRC patients about their FDRs' risk for CRC. However, future studies should explore whether FDRs are likely to be screened after becoming aware of their family…

Ethnicity & Health, Oct 8, 2012

Health Promotion Practice, Sep 14, 2012

Training is an essential component of health programs that incorporate promotoras de salud (the S... more Training is an essential component of health programs that incorporate promotoras de salud (the Spanish term for community health workers) in the delivery of health education and behavioral interventions to Hispanics. During training sessions, promotoras are exposed to information and skill-building activities they need to implement the health programs. This analysis was one component of a broader study which explored program planners' approaches to recruiting and training promotoras to deliver and sustain health promotion programs for Hispanic women. The purpose of this study was to examine promotora-curriculum and training processes used to prepare promotoras to deliver health programs. The authors examined transcripts of 12 in-depth interviews with program planners and conducted a content analysis of seven different training materials used in their respective promotora programs. Interview themes and narratives included program planners' varying conceptualizations of promotora-training, including their personal definitions of "training the trainer," the practice of training a cadre of promotoras before selecting those best fit for the program, and the importance of providing goal-directed, in-depth training and supervision for promotoras. The content analysis revealed a variety of strategies used to make the training materials interactive and culturally competent. Study implications describe the importance of planners' provision of ongoing, goal-directed, and supervised training using both appropriate language and interactive methods to engage and teach promotoras.

Nutrition and Health, Oct 12, 2022

Background: Females are prone to urinary tract infections (UTIs) due to estrogen fluctuations aff... more Background: Females are prone to urinary tract infections (UTIs) due to estrogen fluctuations affecting vaginal flora. While menstruating, increased fluid consumption to support urination frequency and void volume may be important, as the urethra and urinary tract are more predisposed to bacteria, particularly UTI pathogens. Aim: This study aimed to investigate the impact of hydration on urinary tract health during menstruation among underhydrated premenopausal women. Methods: Thirteen females participated in a 60-day 2 × 2 randomized crossover trial to evaluate the effectiveness of consuming ≥2.2 L of total beverage fluid intake, with 1.9 L being water, (intervention, INT) and maintaining habitual fluid intake (control, CON) on two subsequent menses. Participants completed fluid and urination diaries at days 2 and 5 after the onset of bleeding (day 1) to determine the fluid amount consumed and urination frequency. Urine concentration was assessed in afternoon (days 2 and 5) and uropathogenic bacterial activity in first-morning (days 3 and 6) urinations. General linear models assessed differences in bacterial and hydration outcomes. Results: The intervention led to a 62% mean total fluid increase, INT 3.0 ± 1.1 L and CON 1.9 ± 0.9 L, p < 0.001, [Formula: see text] = 0.459. Urination frequency was greater and urine concentration less in the INT to CON, all ps < 0.05, [Formula: see text] range = 0.023–0.019. Only four cultures detected uropathogenic bacteria, with no patterns between conditions or days, making it difficult to determine the intervention's effectiveness. Conclusion: Fluid intake increased, and hydration status improved. No differences in uropathogenic bacterial activity were seen between the hydration and control conditions.

Journal of American College Health

BACKGROUND The rampant spread of misinformation about COVID-19 has been linked to lower uptake of... more BACKGROUND The rampant spread of misinformation about COVID-19 has been linked to lower uptake of preventive behaviors such as vaccination. Some individuals, however, have been able to resist believing in COVID-19 misinformation. Further, some have acted as information advocates, helping to spread accurate information and combat misinformation about the pandemic. OBJECTIVE Guided by the positive deviance framework, which describes how some individuals adopt more positive behaviors than their peers (deemed “positive deviants,” this work explored these information advocates’ perspectives, behaviors, and information-related practices. METHODS To identify positive deviants for this study, we used outcomes of survey research of a national sample of 1498 adults to find individuals who scored a perfect or near-perfect score on COVID-19 knowledge questions who also self-reported sharing or responding to news information within the past week. Among this subsample, we selected a diverse sampl...

Journal of Public Health

Introduction COVID-19 vaccines significantly reduce the risk of complications and hospitalization... more Introduction COVID-19 vaccines significantly reduce the risk of complications and hospitalizations due to this virus. When COVID-19 vaccines first became commercially available, roughly 30% of U.S. adults reported being hesitant to receive these newly developed vaccines, and 15% said they would not receive the vaccine. However, by May 2021, 19% of adults were vaccine-hesitant, and 13% refused to vaccinate against COVID-19. It is critical to understand why adults' degree of willingness to vaccinate against COVID-19 changed over time to plan for future pandemics and vaccination campaigns. Methods We conducted two waves of survey research over five months (January and May 2021) with a panel of 890 U.S. adults. One survey question assessed willingness to vaccinate against COVID-19. The response option included a slider scale ranging from 0 (signifying complete unwillingness) to 10 (complete willingness). We asked participants whose willingness score changed by more than one point to report their rationale for their change in perceptions. We conducted a conventional content analysis on all qualitative responses. Results We analyzed qualitative responses for 289 participants, 54.7% of whom had not been vaccinated against COVID-19 by May 2021. Among those who remained unvaccinated, 36.1% reported increased willingness to vaccinate. The most commonly cited reasons for becoming more willing to receive the vaccine include believing that COVID-19 vaccines are safe and effective, protecting against the pandemic, and desiring to return to pre-pandemic life. Reasons for increased COVID-19 vaccine hesitancy include vaccine safety concerns, the low perceived need for the vaccine, distrust in how COVID-19 vaccines are made and of larger institutions such as the government and pharmaceutical companies, and concerns about vaccine effectiveness. Conclusion Findings illuminate the rationale behind individuals' changes in their degree of willingness to vaccinate against COVID-19. It is critical to incorporate these considerations in future vaccine rollout initiatives to increase the public's vaccine confidence.

Vaccines

In early 2022 in the U.S., rural adults were the least likely to vaccinate against COVID-19 due t... more In early 2022 in the U.S., rural adults were the least likely to vaccinate against COVID-19 due to vaccine hesitancy and reduced healthcare access. This study explored the factors influencing rural adults’ COVID-19 vaccine perceptions and their acceptance of pharmacist-administered vaccination. We utilized phone-based semi-structured interviews with 30 adults living in rural regions of one southwestern state and analyzed the data using a team-based thematic analysis approach. Vaccine-willing participants described knowing other people affected by the virus and their desired protection from the virus. They reported trusting scientific institutions and the government to provide safe vaccines. Vaccine-hesitant populations, however, feared that the COVID-19 vaccine development process had been rushed, compromising the safety of these newer vaccines. Although they differed in the news sources they preferred for receiving COVID-19 vaccine information, both vaccine-willing and vaccine-hesi...

Health Promotion Practice, 2012

Training is an essential component of health programs that incorporate promotoras de salud (the S... more Training is an essential component of health programs that incorporate promotoras de salud (the Spanish term for community health workers) in the delivery of health education and behavioral interventions to Hispanics. During training sessions, promotoras are exposed to information and skill-building activities they need to implement the health programs. This analysis was one component of a broader study which explored program planners’ approaches to recruiting and training promotoras to deliver and sustain health promotion programs for Hispanic women. The purpose of this study was to examine promotora-curriculum and training processes used to prepare promotoras to deliver health programs. The authors examined transcripts of 12 in-depth interviews with program planners and conducted a content analysis of seven different training materials used in their respective promotora programs. Interview themes and narratives included program planners’ varying conceptualizations of promotora-tra...

Health Communication, 2013

Although screening reduces colorectal cancer (CRC) incidence and mortality, screening rates are l... more Although screening reduces colorectal cancer (CRC) incidence and mortality, screening rates are low, particularly among CRC patients' first-degree relatives (FDRs). Little is known about discussion of family members' risk of CRC among patients and their health care providers or with their FDRs. The purpose of this research, guided by the Protection Motivation Theory, was to assess patients' patterns of disclosure of CRC diagnosis to adult siblings and/or children and discussion of familial risk by healthcare providers. A cross-sectional sample of patients who received care at a comprehensive cancer center was recruited to complete telephone-based interviews related to disclosure of CRC diagnosis to FDRs, recall of physician counseling about familial risk, and patients' perception of CRC risk to FDRs. Sixty-nine patients completed the interview. Most participants (n = 67, 97%) had informed their adult children or siblings of their CRC diagnosis to keep their family informed of their health status (n = 15, 22%) and to encourage FDRs to screen for CRC (n = 14, 20%). More than half of the participants' physicians (n = 38, 55%) discussed FDRs' risk of developing CRC with the patient. However, a substantial proportion of patients reported no physician discussion of this risk (n = 28, 41%). Data from this study may guide the development of interventions to facilitate physician discussion and counseling of CRC patients about their FDRs' risk for CRC. However, future studies should explore whether FDRs are likely to be screened after becoming aware of their family…

Genetic Testing and Molecular Biomarkers, 2014

While ethical concerns about participating in biospecimen research have been previously identifie... more While ethical concerns about participating in biospecimen research have been previously identified, few studies have reported the concerns among individuals with familial risk for hereditary cancer (IFRs). At the same time, biomedical researchers often lack training in discussing such concerns to potential donors. This study explores IFRs' and biomedical researchers' perceptions of ethical concerns about participating in biobanking research. In separate focus groups, IFRs and biomedical researchers participated in 90-min telephone focus groups. Focus group questions centered on knowledge about laws that protect the confidentiality of biospecimen donors, understanding of informed consent and study procedures, and preferences for being recontacted about potential incidental discovery and also study results. A total of 40 IFRs and 32 biomedical researchers participated in the focus groups. Results demonstrated discrepancies between the perceptions of IFRs and researchers. IFRs' concerns centered on health information protection; potential discrimination by insurers and employers; and preferences for being recontacted upon discovery of gene mutations or to communicate study results. Researchers perceived that participants understood laws protecting donors' privacy and (detailed study information outlined in the informed consent process), study outcomes were used to create a training tool kit to increase researchers' understanding of IFRs' concerns about biobanking.

The Qualitative Report, 2014

Advances in telecommunication technology allow biomedical researchers to explore new, inexpensive... more Advances in telecommunication technology allow biomedical researchers to explore new, inexpensive opportunities for conducting focus group research. This article reports our experiences using such technology to engage individuals genetically at risk for cancer about biospecimen research. Telephone-based focus groups were conducted with a total of 40 individuals, and participants were asked about their experiences and perceived benefits and limitations of participating in a telephone focus group about biospecimen research. The lessons learned can effectively be applied to other areas of health research. In particular, this method may be most useful to engage individuals who are less apt to speak in public, and/or when there are concerns over privacy if face-to-face discussions methods are used.

Bone Marrow Transplantation, 2014

Hispanic Health Care International, 2013

There is widespread recognition of the cultural and linguistic appropriateness of promotoras de s... more There is widespread recognition of the cultural and linguistic appropriateness of promotoras de salud (a Spanish term for community health workers) in health education and outreach among Hispanic communities. Yet there are significant gaps in the literature regarding the preparation, implementation and evaluation of promotoras' engagement in research. To address this gap, we examine promotoras' research-related training, roles, responsibilities, and contributions in a community-based participatory research project involving a multi-site randomized controlled trial of a physical activity intervention for Mexican-origin women in Texas and South Carolina. We identify both benefits and challenges associated with promotoras' engagement as community researchers; examine variations and differences in promotora roles and responsibilities related to the research contexts, sites, settings, and individual characteristics; and discuss implications for research and practice.

Journal of Public Health Management and Practice, 2013

The use of promotoras de salud is an increasingly widespread delivery approach for communitybased... more The use of promotoras de salud is an increasingly widespread delivery approach for communitybased health education and promotion programs targeting obesity-related lifestyle behaviors for Hispanic populations. Addressing a gap in the literature, this research examined the sustainability of promotora-led initiatives from the perspectives of those who plan, implement, and evaluate these programs. We conducted 24 in-depth interviews with program planners representing 22 promotora programs focused on Hispanic women's health in ten states. Findings illustrated program planners' opinions regarding the components, logistics, and barriers to promotora program sustainability. Several participants challenged the notion of promotora program sustainability by reframing the issue as promoting individual promotoras' well-being and social mobility rather than maintaining their role in the program over time. Implications for community health planning, management, and policy include developing sustainability strategies during program planning stages and implementation of policies to more effectively integrate promotoras into existing healthcare systems at local, state, and national levels. There is increasing recognition of the roles and contributions of community health workers (CHWs) in delivering health education and promotion programs and improving access to healthcare resources among marginalized groups. 1-4 Although there is no universally

Journal of Health Care for the Poor and Underserved, 2012

Cancer innovations, such as biobanking technologies, are continuously evolving to improve our und... more Cancer innovations, such as biobanking technologies, are continuously evolving to improve our understanding and knowledge about cancer prevention and treatment modalities. However, the public receives little communication about biobanking and is often unaware about this innovation until asked to donate biospecimens. It is the researchers' ethical duty to provide clear communications about biobanking and biospecimen research. Such information allows the public to understand biobanking processes and facilitates informed decision making about biospecimen donation. The aims of this paper are 1) to examine the importance of clear communication as an ethical imperative when conveying information about cancer innovations and 2) to illustrate the use of an organizing framework, the CLEAN (Culture, Literacy, Education, Assessment, and Networking) Look approach for creating educational priming materials about the topic of biobanking.

Journal of Cancer Education, 2012

Patient-related barriers have hindered cancer patients' abilities to participate in the decision-... more Patient-related barriers have hindered cancer patients' abilities to participate in the decision-making processes to participate in clinical trials. However, little is known about patients' emotional barrier of fear and how physicians influence this barrier. We conducted 48 in-depth interviews with cancer patients to determine their knowledge and attitudes about participating in clinical trials, transcribed interviews verbatim, and qualitatively analyzed the transcripts using content analysis. For the purpose of this manuscript, we focused on findings related to the role of the emotional barrier of fear in cancer patients' perceptions of participating in clinical trials. The majority of cancer patients (n040, 83.3%) discussed fears surrounding clinical trials, particularly as it related to cancer diagnosis, clinical trial participation, and fear of the unknown. In conclusion, providers might consider addressing the role of fear in patients' considering participating in a clinical trial.

Health Promotion Practice, 2012

Training is an essential component of health programs that incorporate promotoras de salud (the S... more Training is an essential component of health programs that incorporate promotoras de salud (the Spanish term for community health workers) in the delivery of health education and behavioral interventions to Hispanics. During training sessions, promotoras are exposed to information and skill-building activities they need to implement the health programs. This analysis was one component of a broader study which explored program planners’ approaches to recruiting and training promotoras to deliver and sustain health promotion programs for Hispanic women. The purpose of this study was to examine promotora-curriculum and training processes used to prepare promotoras to deliver health programs. The authors examined transcripts of 12 in-depth interviews with program planners and conducted a content analysis of seven different training materials used in their respective promotora programs. Interview themes and narratives included program planners’ varying conceptualizations of promotora-tra...

Health Communication, 2013

Although screening reduces colorectal cancer (CRC) incidence and mortality, screening rates are l... more Although screening reduces colorectal cancer (CRC) incidence and mortality, screening rates are low, particularly among CRC patients' first-degree relatives (FDRs). Little is known about discussion of family members' risk of CRC among patients and their health care providers or with their FDRs. The purpose of this research, guided by the Protection Motivation Theory, was to assess patients' patterns of disclosure of CRC diagnosis to adult siblings and/or children and discussion of familial risk by healthcare providers. A cross-sectional sample of patients who received care at a comprehensive cancer center was recruited to complete telephone-based interviews related to disclosure of CRC diagnosis to FDRs, recall of physician counseling about familial risk, and patients' perception of CRC risk to FDRs. Sixty-nine patients completed the interview. Most participants (n = 67, 97%) had informed their adult children or siblings of their CRC diagnosis to keep their family informed of their health status (n = 15, 22%) and to encourage FDRs to screen for CRC (n = 14, 20%). More than half of the participants' physicians (n = 38, 55%) discussed FDRs' risk of developing CRC with the patient. However, a substantial proportion of patients reported no physician discussion of this risk (n = 28, 41%). Data from this study may guide the development of interventions to facilitate physician discussion and counseling of CRC patients about their FDRs' risk for CRC. However, future studies should explore whether FDRs are likely to be screened after becoming aware of their family…