Urban American Indian Health Survey Devon Johnson University of Maryland School of Public Health Background – (De)Colonization Throughout the 15 th and 16 th centuries, colonization caused Native Americans to be stripped of their traditions and practices and forced to assimilate into the European culture. 7 The Native Americans were placed in areas that did not provide them with access to their own resources, which resulted in them having to adapt to new medication and healing practices and learn to communicate effectively outside of their native language. Scholars suggest that we see the legacy of colonization today in the form of health disparities within the Native American population, although they are often attributed to genetics and/or personal deficiencies. 12 The research community has contributed to the colonization process by collecting data without giving any benefits to the community or by they imposing their health beliefs on communities in a manner that is not culturally sensitive.1 Now, in an attempt to undo the affects of colonization, researchers are using decolonizing methodologies in order to help Urban Indians reclaim and preserve their aboriginal practices and beliefs (see the Literature Review for more on decolonizing methodologies). Urban Indian Communities Today • Urban Indian communities are diverse populations consisting of multiple tribes with various ethnic, cultural, and social characteristics. 4 Acculturation to urban areas has caused many natives to feel isolated socially and culturally. As members of minority groups, they are often more socio-economically disadvantaged and therefore have higher risk factors for poor birth outcomes, including low birth weight. They also are more at risk for communicable diseases, mortality among nonelderly individuals, injuries, and alcohol-related deaths. • While living in an urban environment has provided certain opportunities for American Indians, issues such as lack of access to health care, poor medical assistance and lower quality health treatment remain an issue. 4 • Adding to this, there has been a scarcity of information available on the Urban American Indian/Alaska Native population, making it difficult to provide needed services and resources. The Urban Indian Family Coalition collaborated with tribal families and came to the conclusion there needed to be a unified approach to solve both the needs of tribal based and Urban native people to create a better future for all Native people. 9,10 • To gather this information, several American Indian communities have begun creating health needs surveys to assess the current mental health, physical health, and community needs with the aim of providing incentives for program development in those areas and funding to support those needs. 10 • Literature on decolonizing methodologies identifies approaches to execute research on indigenous communities that would not harm, discomfort, or misuse any of the participants in the study or in the community. 1 • A key factor in research with indigenous communities is gaining and maintaining their trust. Ways to gain trust within a population include becoming familiar with their culture and language, avoiding any type of discrimination, and understanding how to handle community members. It is also important to phrase questions in a manner that would be least offensive to the survey participant. 1 • In-person surveys usually require a trained interviewer who shares the same native background to the population. This helps to build trust between the interviewee and interviewer. Indigenous people are more reluctant to give personal information to someone they feel cannot relate to them. 6 • It is common to have natives on an advisory board preview the questions or in a focus group to pilot test the questions. 9 • Limited access to a phone or Internet could affect the number of people able to take the survey. In-person surveys were suggested as the most reliable source of accurate information. 9 A study done by Massachusetts Department of Public Health concluded that participants are more likely to give the socially desired answer to a question over the phone and be more likely to give truthful answers when asked in person. In person surveys also allow the participants to feel like their information will be used to implement change so they are more likely to be honest. 8 Introduction Literature Review i. Conference Call with Ms. Minner Our first step in creating the survey was to find out more information about the BAIC and its members. Dr. Jette (my PI), Mrs. Roberts (Graduate Assistant) and I had a conference call with Ms. Minner, the lead coordinator for the BAIC, to discus possible topics for the survey based on the given population. After the call, I transcribed the entire conversation so that we could more easily capture important information to utilize when creating the survey. ii. Literature Review Once we gathered a list of topics to include in the survey, we each reviewed different literature for health needs surveys used for Urban Indian/Native American populations. By doing this step we wanted to identify the most effective and beneficial way to design a survey that would be easy to comprehend, time-efficient and not offend or bring discomfort to the survey participants. We also examined existing surveys in order to collect different questions that were proven to be very useful in surveys. In addition to the literature review search, I also read chapters from Decolonizing Methodologies to gain a better understanding of how to approach research with indigenous peoples. 5 iii. Survey Draft As we started to create the survey, we combined all of our questions that we had found during the literature search and grouped them by the different topic sections. We then decided to use the Likert scale and “yes/no” questions for the majority of the survey to make it easier for the participants to fill out. Once the survey was put together, we each reviewed it for additional questions that could be added or existing questions that could be revised. At the end of the draft survey, we had 50 questions. iv. Survey Feedback from Ms. Minner The final draft of the survey was sent to Ms. Minner for review. We set up a second conference call with her to listen to any advice that she had about the survey. Before releasing the survey to the participants, we decided it would be important to pilot the survey with members of the BAIC who would take the survey and give us their feedback. Once piloted, final revisions could be made. v. Pilot testing Before pilot testing the survey, we reviewed notes from the publication Focus Groups: A Practical Guide for Applied Research. 11 Each of us who helped to create the survey was responsible for assuming a different role for the pilot test; Dr. Jette was the main moderator, Erica Roberts, the assistant moderator, and I, the transcriber. For the actual pilot test, we met with 5 community leaders at the BAIC to discuss the survey. To help regulate the pilot testing we developed a list of focus group guided questions. These questions were to ensure that we were provided with the necessary feedback to improve the survey. The survey was given to each person to review, and an open discussion was held about any questions or concerns they felt needed to be addressed regarding the survey. vi. Final Steps After we collected the notes from the pilot test, we made the suggested changes to the survey. The next step in the process of creating the survey will be to do a second pilot test using undergraduate students to examine any implications with the length of the survey. Once an appropriate time is estimated for the survey, it will then be sent back to the BAIC for any final revisions, and then it will be ready to be administered. Our research goal was to create a Health Survey for the Baltimore American Indian Center (BAIC) that assessed the health status of the Urban American Indian/Alaska Native (AIAN) population living in Baltimore, Maryland. The survey should be effective in providing useful data that will help the center develop a better understanding of the priority health needs of the Urban Indian American community, and as a result, enable them to implement the health programs to improve their quality of health. Methods The Urban Indian American Community is a population this is widely overlooked. The lack of familiarity with the population prevents health providers from being able to aid them with the proper assistance. There are also questions of identification within this population where either the state is unaware of their proper identity or the persons themselves are unsure. This survey helps to identity the person and their affiliation with the Native American culture. It also helps to bring awareness to the disparities that exist to help focus more programs on creating opportunities for not just tribal-affiliated Indian Americans, but all persons of Native American descent living in urban communities. Findings Implications REFERENCES Research Goal Formative conversation with BAIC Frieda requested we make a Health Survey instead of a needs assessment. -“Most people know what they need, but they don’t know their issue” (Ms. Minner) o A Health Survey captures the current health status of the entire population and a needs assessment is more specific to each person’s health problems. o Due to the amount of funding available, a Health Survey is more practical and cost-efficient for future programs. In the state of Maryland, there are only 3 recognized tribes o Each tribe must meet designated criteria in order to become a member and receive the state benefits. o Criteria for membership includes a certain blood quantum level for the requested tribe. o Frieda wanted to build a consortium out of the 3 existing tribes in order to use that funding to allocate their own resources to the natives. The BAIC consists of a variety of members from the community o A number of members lived in lower income communities which resulted in low attendance levels for several of the programs. o Youth members were either uninterested in attending the programs or were busy with school and extra-curricular activities. o There was a variation among their educational levels and physical capabilities. Thus, the survey needs to be accessible and comprehensive for all participants Literature Review One of the most successful tools for creating the survey was finding pre-existing surveys. o Many of the surveys we found were tailored to specific Health Disparities (i.e. Physical abuse, Drug use, Chronic Disease Risk factors) o Several of the studies used in-person interviews to conduct the survey. Likert scale and open-ended questions were most widely used. 9 o A portion of the survey was dedicated to self-identification including age, gender, family indictors (marital status, number of kids), income, tribal affiliation, religious indicators (church affiliation), and transportation. 9 o Researchers aspiring to develop programs to improve health included questions about the population’s greatest social health problems, the types of wellness and social programs they desired, how safely connected they felt with the community, the strengths of their current community center, and the differences between youth and adults in their perception of their health. 9 Follow-up Conversation Ms. Minner recommended that we include questions on prenatal care, sexual health and reproduction. o We found several questions regarding behavior prior to and during pregnancy (i.e. smoking, drinking, substance abuse, dieting, physical activity). o We also found questions on labor complications (i.e., vaginal bleeding, early labor pains, urinary track infections) and delivery preferences (i.e. C-section, home delivery). o For sexual health, the most frequently used questions were about STD testing, contraction of any diseases, and awareness of their partner’s sexual health status. There was also a discussion on some of the implications of in person interviews o We concluded that allowing the participants to fill out the survey on their own enabled them to maintain anonymity (thus, they would be more likely to give honest answers). o Online surveys seemed practical; however, we would exclude people who lacked internet access. Pilot Testing The format of the survey created an extensively long survey o The focus group suggested using more multiple choice questions to decrease the time it would take to complete the survey. Another suggestion was to format the survey using columns and the questions in rows. o The length of the survey was a concern because they predicted many of the participants would not be able to sit through a survey that was longer than 10 minutes. A long survey may also discourage the participant from wanting to take it o One of the focus group members also commented that the length of the survey would influence their emotions and affect their responses to the questions Certain questions needed to be eliminated or reworded/reformatted o Open ended questions leave room for pseudo answers that are either difficult to understand or unable to be calculated. o Tribal identification questions can also leave room for inaccurate answers if the person is not officially enrolled into a tribe. o Deficiencies in health literacy may also cause participants to be confused as to how to answer certain questions or what would an appropriate answer. o Questions that were synonymous to other questions were either deleted or combined with those similar questions 1 Walters, L. K., & Simoni, M. J. (2009, April). Decolonizing Strategies for Mentoring American Indians and Alaska Natives in HIV and Mental Health Research. Am J Public Health , 71-76. 2 Barlow, A., Mullany, B. C., Neault, N., Davis, Y., Billy, T., Hastings, R., et al. (2010). Examining Correlates of Methamphetamine and other Drug use in Pregnant American Indian Adolescents. National Center for Biotechnology Information , 17 (1). 3 Betancourt, J. R., Green, A. R., Carrillo, J. E., & Ananeh-Firempong II, O. (2003). Defining Cultural Competence: A Practical Framework for Addressing Racial/Ethnic Disparities in Health and Health Care . Harvard Medical School, Department of Medicine. Boston: Association of School of Public Health. 4 Castor, M. L., Smyser, M. S., Tualii, M. M., Parker, A. N., Lawson, S. N., & A, R. F. (2006, August). A Nationwide Population Based Study Identifying Health Disparities Between American Indian/ Alaskan Natives and The General Populations Living in Select Urban Counties. Am J Public Health , 1478-1484. 5 Smith, L. T. (1999). Decolonizing methodologies: Research and indigenous peoples. Zed 6 Evans-Campbell, T., Lindhorst, T., Huang, B., & Walter, L. K. (2006). Interpersonal Violence in the lives of Urban American Indian and Alaska Native Women: Implications for Health, Mental Health, and Help-Seeking . American Journal of Public Health , 96 (8), 1416-1422. books. 7 Folkman , J., Loughran, J., Robson, E., & Strick, E. (2012). A Profile of Urban Indian Health Organization Programing to Support Behavioral Health. Urban Indian Health Institute, Seattle Indian Health Board. Seattle: Urban Indian Health Institute. 8 Hood, M. O., & West, J. K. (2006). The Health Status of American Indians/ Native Americans in Massachusetts. Massachusetts Department of Public Health. Massachusetts: Center for Health Information, Statistics, Research and Evaluation. 9 Johnson, C., Bartis, J., Worley, J. A., Hellman, C. M., & Burkhard, R. (2010). Urban Indian Voice: A Community-Based Participatory Research Health and Needs Assessment. American Indian Alaskan Native Mental Health Research , 17 (1), 49-70. 10 Tsethikai, M. (2007). Urban India american. Seattle: National Urban Indian Family Coalition. 11 Krueger, R. A., & Casey, M. A. (2000). Focus groups: A practical guide for applied research. Thousand Oaks, Calif: Sage Publications. 12 O'Neil, J. D., & Reading, J. R. (2001). Changing the Relations of Surveillance: The Development of a Discourse of Resistance in Aboriginal Epidemiology. Human Organization , 57 (2), 230-237.
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Urban American Indian Health Survey Devon Johnson
University of Maryland School of Public Health
Background – (De)Colonization Throughout the 15th and 16th centuries, colonization caused Native Americans
to be stripped of their traditions and practices and forced to assimilate into the European culture.7 The Native Americans were placed in areas that did not provide them with access to their own resources, which resulted in them having to adapt to new medication and healing practices and learn to communicate effectively outside of their native language.
Scholars suggest that we see the legacy of colonization today in the form of health disparities within the Native American population, although they are often attributed to genetics and/or personal deficiencies.12
The research community has contributed to the colonization process by collecting data without giving any benefits to the community or by they imposing their health beliefs on communities in a manner that is not culturally sensitive.1
Now, in an attempt to undo the affects of colonization, researchers are using decolonizing methodologies in order to help Urban Indians reclaim and preserve their aboriginal practices and beliefs (see the Literature Review for more on decolonizing methodologies). Urban Indian Communities Today • Urban Indian communities are diverse populations consisting of multiple tribes
with various ethnic, cultural, and social characteristics.4 Acculturation to urban areas has caused many natives to feel isolated socially and culturally. As members of minority groups, they are often more socio-economically disadvantaged and therefore have higher risk factors for poor birth outcomes, including low birth weight. They also are more at risk for communicable diseases, mortality among nonelderly individuals, injuries, and alcohol-related deaths.
• While living in an urban environment has provided certain opportunities for American Indians, issues such as lack of access to health care, poor medical assistance and lower quality health treatment remain an issue.4
• Adding to this, there has been a scarcity of information available on the Urban American Indian/Alaska Native population, making it difficult to provide needed services and resources. The Urban Indian Family Coalition collaborated with tribal families and came to the conclusion there needed to be a unified approach to solve both the needs of tribal based and Urban native people to create a better future for all Native people.9,10
• To gather this information, several American Indian communities have begun creating health needs surveys to assess the current mental health, physical health, and community needs with the aim of providing incentives for program development in those areas and funding to support those needs.10
• Literature on decolonizing methodologies identifies approaches to execute research on indigenous communities that would not harm, discomfort, or misuse any of the participants in the study or in the community.1
• A key factor in research with indigenous communities is gaining and maintaining their trust. Ways to gain trust within a population include becoming familiar with their culture and language, avoiding any type of discrimination, and understanding how to handle community members. It is also important to phrase questions in a manner that would be least offensive to the survey participant.1
• In-person surveys usually require a trained interviewer who shares the same native background to the population. This helps to build trust between the interviewee and interviewer. Indigenous people are more reluctant to give personal information to someone they feel cannot relate to them.6
• It is common to have natives on an advisory board preview the questions or in a focus group to pilot test the questions.9 • Limited access to a phone or Internet could affect the number of people able to take the survey. In-person surveys were suggested as the most reliable source of accurate information.9 A
study done by Massachusetts Department of Public Health concluded that participants are more likely to give the socially desired answer to a question over the phone and be more likely to give truthful answers when asked in person. In person surveys also allow the participants to feel like their information will be used to implement change so they are more likely to be honest.8
Introduction
Literature Review
i. Conference Call with Ms. Minner Our first step in creating the survey was to find out more information about the BAIC and its members. Dr. Jette (my PI), Mrs. Roberts (Graduate Assistant) and I had a conference call with Ms. Minner, the lead coordinator for the BAIC, to discus possible topics for the survey based on the given population. After the call, I transcribed the entire conversation so that we could more easily capture important information to utilize when creating the survey. ii. Literature Review Once we gathered a list of topics to include in the survey, we each reviewed different literature for health needs surveys used for Urban Indian/Native American populations. By doing this step we wanted to identify the most effective and beneficial way to design a survey that would be easy to comprehend, time-efficient and not offend or bring discomfort to the survey participants. We also examined existing surveys in order to collect different questions that were proven to be very useful in surveys. In addition to the literature review search, I also read chapters from Decolonizing Methodologies to gain a better understanding of how to approach research with indigenous peoples.5 iii. Survey Draft As we started to create the survey, we combined all of our questions that we had found during the literature search and grouped them by the different topic sections. We then decided to use the Likert scale and “yes/no” questions for the majority of the survey to make it easier for the participants to fill out. Once the survey was put together, we each reviewed it for additional questions that could be added or existing questions that could be revised. At the end of the draft survey, we had 50 questions. iv. Survey Feedback from Ms. Minner The final draft of the survey was sent to Ms. Minner for review. We set up a second conference call with her to listen to any advice that she had about the survey. Before releasing the survey to the participants, we decided it would be important to pilot the survey with members of the BAIC who would take the survey and give us their feedback. Once piloted, final revisions could be made. v. Pilot testing Before pilot testing the survey, we reviewed notes from the publication Focus Groups: A Practical Guide for Applied Research.11 Each of us who helped to create the survey was responsible for assuming a different role for the pilot test; Dr. Jette was the main moderator, Erica Roberts, the assistant moderator, and I, the transcriber. For the actual pilot test, we met with 5 community leaders at the BAIC to discuss the survey. To help regulate the pilot testing we developed a list of focus group guided questions. These questions were to ensure that we were provided with the necessary feedback to improve the survey. The survey was given to each person to review, and an open discussion was held about any questions or concerns they felt needed to be addressed regarding the survey. vi. Final Steps After we collected the notes from the pilot test, we made the suggested changes to the survey. The next step in the process of creating the survey will be to do a second pilot test using undergraduate students to examine any implications with the length of the survey. Once an appropriate time is estimated for the survey, it will then be sent back to the BAIC for any final revisions, and then it will be ready to be administered.
Our research goal was to create a Health Survey for the Baltimore American Indian Center (BAIC) that assessed the health status of the Urban American Indian/Alaska Native (AIAN) population living in Baltimore, Maryland. The survey should be effective in providing useful data that will help the center develop a better understanding of the priority health needs of the Urban Indian American community, and as a result, enable them to implement the health programs to improve their quality of health.
Methods
The Urban Indian American Community is a population this is widely overlooked. The lack of familiarity with the population prevents health providers from being able to aid them with the proper assistance. There are also questions of identification within this population where either the state is unaware of their proper identity or the persons themselves are unsure. This survey helps to identity the person and their affiliation with the Native American culture. It also helps to bring awareness to the disparities that exist to help focus more programs on creating opportunities for not just tribal-affiliated Indian Americans, but all persons of Native American descent living in urban communities.
Findings
Implications
REFERENCES
Research Goal Formative conversation with BAIC
u Frieda requested we make a Health Survey instead of a needs assessment. -“Most people know what they need, but they don’t know their issue” (Ms. Minner)
o A Health Survey captures the current health status of the entire population and a needs assessment is more specific to each person’s health problems.
o Due to the amount of funding available, a Health Survey is more practical and cost-efficient for future programs. u In the state of Maryland, there are only 3 recognized tribes o Each tribe must meet designated criteria in order to become a member and receive the state benefits. o Criteria for membership includes a certain blood quantum level for the requested tribe. o Frieda wanted to build a consortium out of the 3 existing tribes in order to use that funding to allocate their own resources to the
natives. u The BAIC consists of a variety of members from the community o A number of members lived in lower income communities which resulted in low attendance levels for several of the programs. o Youth members were either uninterested in attending the programs or were busy with school and extra-curricular activities. o There was a variation among their educational levels and physical capabilities. Thus, the survey needs to be accessible and
comprehensive for all participants
Literature Review u One of the most successful tools for creating the survey was finding pre-existing surveys. o Many of the surveys we found were tailored to specific Health Disparities (i.e. Physical abuse, Drug use, Chronic Disease Risk
factors) o Several of the studies used in-person interviews to conduct the survey. Likert scale and open-ended questions were most widely
used.9 o A portion of the survey was dedicated to self-identification including age, gender, family indictors (marital status, number of
kids), income, tribal affiliation, religious indicators (church affiliation), and transportation.9 o Researchers aspiring to develop programs to improve health included questions about the population’s greatest social health
problems, the types of wellness and social programs they desired, how safely connected they felt with the community, the strengths of their current community center, and the differences between youth and adults in their perception of their health.9
Follow-up Conversation
u Ms. Minner recommended that we include questions on prenatal care, sexual health and reproduction. o We found several questions regarding behavior prior to and during pregnancy (i.e. smoking, drinking, substance abuse, dieting,
physical activity). o We also found questions on labor complications (i.e., vaginal bleeding, early labor pains, urinary track infections) and delivery
preferences (i.e. C-section, home delivery). o For sexual health, the most frequently used questions were about STD testing, contraction of any diseases, and awareness of
their partner’s sexual health status. u There was also a discussion on some of the implications of in person interviews o We concluded that allowing the participants to fill out the survey on their own enabled them to maintain anonymity (thus, they
would be more likely to give honest answers). o Online surveys seemed practical; however, we would exclude people who lacked internet access.
Pilot Testing u The format of the survey created an extensively long survey o The focus group suggested using more multiple choice questions to decrease the time it would take to complete the survey.
Another suggestion was to format the survey using columns and the questions in rows. o The length of the survey was a concern because they predicted many of the participants would not be able to sit through a
survey that was longer than 10 minutes. A long survey may also discourage the participant from wanting to take it o One of the focus group members also commented that the length of the survey would influence their emotions and affect their
responses to the questions u Certain questions needed to be eliminated or reworded/reformatted o Open ended questions leave room for pseudo answers that are either difficult to understand or unable to be calculated. o Tribal identification questions can also leave room for inaccurate answers if the person is not officially enrolled into a tribe. o Deficiencies in health literacy may also cause participants to be confused as to how to answer certain questions or what would
an appropriate answer. o Questions that were synonymous to other questions were either deleted or combined with those similar questions
1Walters, L. K., & Simoni, M. J. (2009, April). Decolonizing Strategies for Mentoring American Indians and Alaska Natives in HIV and Mental Health Research. Am J Public Health , 71-76. 2Barlow, A., Mullany, B. C., Neault, N., Davis, Y., Billy, T., Hastings, R., et al. (2010). Examining Correlates of Methamphetamine and other Drug use in Pregnant American Indian Adolescents. National Center for Biotechnology Information , 17 (1). 3Betancourt, J. R., Green, A. R., Carrillo, J. E., & Ananeh-Firempong II, O. (2003). Defining Cultural Competence: A Practical Framework for Addressing Racial/Ethnic Disparities in Health and Health Care . Harvard Medical School, Department of Medicine. Boston: Association of School of Public Health. 4Castor, M. L., Smyser, M. S., Tualii, M. M., Parker, A. N., Lawson, S. N., & A, R. F. (2006, August). A Nationwide Population Based Study Identifying Health Disparities Between American Indian/ Alaskan Natives and The General Populations Living in Select Urban Counties. Am J Public Health , 1478-1484. 5Smith, L. T. (1999). Decolonizing methodologies: Research and indigenous peoples. Zed 6Evans-Campbell, T., Lindhorst, T., Huang, B., & Walter, L. K. (2006). Interpersonal Violence in the lives of Urban American Indian and Alaska Native Women: Implications for Health, Mental Health, and Help-Seeking . American Journal of Public Health , 96 (8), 1416-1422. books.
7Folkman , J., Loughran, J., Robson, E., & Strick, E. (2012). A Profile of Urban Indian Health Organization Programing to Support Behavioral Health. Urban Indian Health Institute, Seattle Indian Health Board. Seattle: Urban Indian Health Institute. 8Hood, M. O., & West, J. K. (2006). The Health Status of American Indians/ Native Americans in Massachusetts. Massachusetts Department of Public Health. Massachusetts: Center for Health Information, Statistics, Research and Evaluation. 9Johnson, C., Bartis, J., Worley, J. A., Hellman, C. M., & Burkhard, R. (2010). Urban Indian Voice: A Community-Based Participatory Research Health and Needs Assessment. American Indian Alaskan Native Mental Health Research , 17 (1), 49-70. 10Tsethikai, M. (2007). Urban India american. Seattle: National Urban Indian Family Coalition. 11Krueger, R. A., & Casey, M. A. (2000). Focus groups: A practical guide for applied research. Thousand Oaks, Calif: Sage Publications. 12O'Neil, J. D., & Reading, J. R. (2001). Changing the Relations of Surveillance: The Development of a Discourse of Resistance in Aboriginal Epidemiology. Human Organization , 57 (2), 230-237.
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