Focus Groups with Communities DHS Disparities Grant Project Management Team Stratis Health, SHADAC, The Urban Coalition, and Community Researchers April 2003 DM-0171 Disparities in Minnesota Health Care Programs Focus Groups with Communities We are indebted to the following individuals and organizations for their contributions, their guidance, and their insight as we navigated through this research project. We extend our deepest thanks to each of them, as well as the communities and community members who participated in all of the focus groups. For the Somali Community Organization: New Americans Community Services Moderator: Sirad Osman Assistant: Agnes Odinga For the Hmong Community Organization: Cha Consulting Facilitator/Assistant: Valeng Cha, Ka Moua For the Hispanic/Latino Community Organization: HACER (Hispanic Advocacy & Community Empowerment Through Research) Staff: Claudia Fuentes Facilitators: Maria Vazquez, Jared Erdmann Assistants: Marwin Garcia, Amy Stenoien, Maria Vazquez For the European American Community Organization: Powerderhorn Phillips Cultural Wellness Center Facilitator: Cara Carlson Notetakers: Janice Barbee, Cara Ibrahim Report Writer: Janice Barbee For the African American Community Organization: Powerderhorn Phillips Cultural Wellness Center Facilitator: Atum Azzahir Notetakers: Janice Barbee, Cara Ibrahim Report Writer: Janice Barbee For the American Indian Community Individual Consultant: Betty Moore Facilitator: Betty Moore Assistants: Jackie Sam, Angela Kappenman page 2 Disparities in Minnesota Health Care Programs Focus Groups with Communities DHS Disparities Grant Focus Group Subcommittee Members Heather Britt, The Urban Coalition Kathleen Call, University of Minnesota Valeng Cha, Cha Consulting Charity Kreider, University of Minnesota Jennifer Lundblad, Stratis Health Donna McAlpine, University of Minnesota Betty Moore, Independent Consultant (formerly with the Indian Health Board) Sirad Osman, New Americans Community Services Walter Suarez, Midwest Center for HIPAA Education Focus Group Training Consultants Richard Krueger, University of Minnesota Mary Anne Casey, Krueger & Associates page 3 Disparities in Minnesota Health Care Programs Focus Groups with Communities Executive Summary .......................................................................5 Background ....................................................................................7 Findings........................................................................................ 11 What do you and your family do to avoid getting sick?....................................... 12 Where do you and your family go to keep from getting sick? ............................. 17 When do you or your family go to the doctor or clinic? ....................................... 19 What are some other types of preventive care? ................................................. 21 How many of you or your family members have gone in for any of these services? ............................................................................................................ 22 What keeps you, your family, and your community from getting these services? ............................................................................................................ 24 How does your Minnesota insurance plan influence whether you get preventive care? .................................................................................................................. 36 Conclusions.................................................................................. 38 Appendices Appendix A: Focus Group Guide page 4 Disparities in Minnesota Health Care Programs Focus Groups with Communities In January 2003, the Minnesota Department of Human Services funded the Disparities in Minnesota Health Care Programs study designed to understand barriers to preventive health care among Minnesota Health Care Program (MHCP) enrollees. The study focuses on disparities in the use of preventive and other health services among African American, American Indian, Hispanic/Latino, Somali, Hmong, and European American children and adults. A second purpose of the study is to identify potential solutions to observed disparities with the goal of improving service delivery. The first phase of research was a series of focus groups in each of these six communities, sponsored and facilitated by community-based organizations. During the 12 focus groups, participants were asked to respond to questions and to share their experiences regarding health, preventive services, and barriers to care. Inquiry and discussion clustered around seven key question areas: · What do you and your family do to avoid getting sick? · Where do you and your family go to keep from getting sick? · When do you or your family go to a doctor or clinic? · What are some types of preventive care services? · How many of you or your family members have gone in for any of these services? · What keeps you, your family, and your community from getting these services? · How does your Minnesota insurance plan influence whether you get preventive care? The focus group participants engaged in rich and lively discussions in responding to these question areas. Together, their responses provide insight into how health and health care are articulated in these communities and into barriers to preventive care for these communities. The focus group findings also will inform the development of a survey instrument that will be the basis of the next phase of research for the project. The focus group participants employ a wide variety of practices to keep themselves and their children healthy. Many of the practices described fall outside of the traditional Western definitions of “prevention” (for example, good hygiene, consulting religious and spiritual leaders, and accessing family and community experts and support) but are vital to how members of these communities view their health and health care. When members of these communities do attempt to seek health care and preventive services from the traditional Western health care system, they encounter many barriers. The most prevalent of these include discrimination of health care facility staff toward immigrants or those of other races; mistrust of doctors/nurses, hospitals, and pharmacies; financial concern that insurance will not cover the entire bill; time it takes to secure an appointment and time spent waiting at the clinic; transportation issues; and page 5 Disparities in Minnesota Health Care Programs Focus Groups with Communities lack of physical symptoms (feeling healthy) means no perceived need for care or prevention. This study is limited because focus group participants are not representative of entire communities. Further, we were able to engage in only two focus groups with each community. As a result, the focus group findings are not intended to be either representative or generalizable. Rather, the knowledge shared by community members is powerful and will serve to inform the development of a quantitative survey of MHCP enrollees as well as add to the general knowledge about barriers to preventive care among participating communities. page 6 Disparities in Minnesota Health Care Programs Focus Groups with Communities Project Overview In January 2003, the Minnesota Department of Human Services funded the Disparities in Minnesota Health Care Programs study designed to understand barriers to preventive health care among Minnesota Health Care Program (MHCP) enrollees. The study focuses on disparities in the use of preventive and other health care services among African American, American Indian, Hispanic/Latino, Somali, Hmong and European American children and adults. A second purpose of the study is to identify potential solutions to observed disparities with the goal of improving service delivery. This study represents a collaborative effort between Stratis Health, the University of Minnesota, and several community researchers affiliated with community-based organizations. Our research model uses a community-based participatory research method that promotes active involvement of community members in all stages of the research process, a process we believe is critical to improving population health. The Project Management Team (PMT) for this study is comprised of individuals from each of the collaborating organizations. Subcommittees composed of interested PMT members are responsible for ensuring specific tasks are completed for the project. The research design includes two central components: 1) focus groups and 2) a survey of MCHP enrollees. The focus groups were conducted to identify gaps in our knowledge of barriers to service use and to inform the development of the survey instrument. MHCP Background Minnesota has three main public health care programs: Medical Assistance (MA), General Assistance Medical Care (GAMC), and MinnesotaCare (MnCare) (see Table 1 for enrollment information). MA, Minnesota’s basic Medicaid program, serves primarily low-income women and children. General Assistance Medical Care (GAMC) is a state- funded program that covers acute care for low-income individuals (primarily adult men) who are not categorically eligible for MA benefits. Finally, MnCare is a state and federally-subsidized health care program designed to provide health care to Minnesota children and adults who do not have health insurance and are not eligible for MA or GAMC. Enrollees pay a premium based on family size, the number of people covered, and income. page 7 Disparities in Minnesota Health Care Programs Focus Groups with Communities Table 1. MA and MnCare Enrollment by Race and Age, GAMC Enrollment for Adults Medical Assistance a MinnesotaCare a GAMC b Adults Children Adults Children Adults Race/Ethnicity N (%) N (%) N (%) N (%) N (%) American Indian 8,382 (4.2) 12,241 (6.2) 128 (1.1) 594 (1.0) 2,108 (6.5) Asian 13,229 (6.6) 18,209 (9.2) 719 (6.4) 3,729 (6.4) 1,167 (3.6) Black or African 29,333 (14.7) 46,510 (23.7) 586 (5.3) 3,474 (6.0) 6,486 (20.0) American Hispanic/Latino 6221 (3.1) 18,710 (9.5) 204 (1.8) 1,913 (3.3) 2,270 (7.0) Native Hawaiian or Other Pacific 79 (0.0) 126 (0.1) 2 (0.0) 24 (0.0) 16 (0.0) Islander Caucasian 139,155 8,285 42,072 19,036 92,298 (47.0) (69.8) (74.3) (72.6) (58.7) Multiple Race 375 (0.2) 2,447 (1.2) 25 (0.2) 175 (0.3) 71 (0.2) Unknown/Blank 1,195 5,933 2,580 (1.3) 5,933 (3.0) 1,232 (3.8) (10.7) (10.2) Total 199,354 196,294 11,144 57,194 32,429 (100) (100) (100) (100) (100) a Source: Reports and Forecasts Division, Minnesota Department of Human Services, 9/12/2002 b Source: Total enrollment numbers for GAMC from the Medical Programs Monthly Report, Reports and Forecasts Division, Minnesota Department of Human Services, 8/26/2002. Proportional distributions by race/ethnicity are as of 5/07/2002. Focus Groups The goal of the focus group interviews was to explore gaps in our understanding of barriers to preventive health care use among enrollees in MHCP. Sources of disparities in preventive care services are complex, including individual, cultural, system, and structural causes, all of which are interconnected. Moreover, the relative importance of these barriers may vary by factors such as age, gender, length of time in the U.S., and rural/urban residence. Our project goal was to conduct at least two focus groups within each of six communities: Somali, Hmong, Hispanic/Latino, European American, African American, and American Indian. The focus group findings contribute to the study in two ways—the findings will stand on their own to add to the knowledge base about barriers, and the findings will guide the development of the instrument for the survey phase of the research. A Focus Group Subcommittee, comprised of members from the study’s Project Management Team, was responsible for implementing the focus group component of the project. Members of the subcommittee developed a Request for Proposals (RFP) for individuals and community-based organizations to conduct the focus groups, including recruitment of participants, facilitation of sessions, and analysis of results. Individuals page 8 Disparities in Minnesota Health Care Programs Focus Groups with Communities and organizations that responded to the request and worked with communities are identified at the beginning of the report. The Focus Group Subcommittee, along with individuals from organizations conducting focus groups, developed the focus group question guide, consent form, demographic tracking form, and incentive receipt form for use in all of the focus groups. The focus group sample design was shaped by the individuals from the organizations conducting the focus groups, in collaboration with the Focus Group Subcommittee. The composition and location of the various focus groups was based on recommendations by facilitating organizations—their knowledge of the appropriate group composition that would maximize participation and knowledge gained. For example, in the Somali community, focus groups were conducted separately with men and women because experience indicates that women are less likely to talk in a mixed gender group. Facilitators, note takers, and members of the Focus Group Subcommittee participated in three focus group training sessions before facilitating groups. Two consultants with extensive background in focus groups conducted the training, with ongoing input from facilitators and note takers who had experience working with their own communities and in implementing focus group-type discussions. Training addressed recruitment, facilitation, note taking, analysis, and report writing. Individuals and organizations facilitating focus group sessions recruited participants through a variety of methods, including one-one-one recruitment within service organizations, flyers posted at community and other centers, and calls to potential participants based on organizational and personal contact lists. Focus groups were conducted during a two-week period in February of 2003. The characteristics of focus group participants are described in Table 2. Organizations and individuals conducting focus groups were asked to ensure that focus group participants completed consent forms (reviewed and approved by the University of Minnesota’s Institutional Review Board) acknowledging their voluntary participation in the study. Focus group participants received an incentive of some sort (money, reimbursement for travel/childcare, and/or food). Facilitators either tape-recorded focus group sessions, if community members felt comfortable with this option, or took extensive notes for use in analysis. Organizations and individuals conducting the focus groups completed a report based on each group they conducted (two per community) and a summary report. These reports, as well as results from a group analysis session involving all report writers and members of the Focus Group Subcommittee, were used to develop this final document. page 9 Disparities in Minnesota Health Care Programs Focus Groups with Communities Table 2. Characteristics of Focus Groups and Participants Group Gender Age Primary Parents Program Language Somali 15 women 5 in 20s Somali 6 parents 1 GAMC 2/15/03 4 in 30s 2 MNCare 2 in 40s 8 MA 1 in 50s 4 Not known 3 in 60s Somali 15 men 3 in 20s Somali 6 parents 5 GAMC 2/22/03 2 in 30s 2 MNCare 1 in 40s 6 MA 1 in 50s 2 Not known 4 in 60s 4 in 70s Hmong 7 men 1 in 20s Hmong 7 parents 1 MNCare 2/24/03 1 in 30s 6 MA 4 in 40s 1 in 50s Hmong 13 women 2 in 20s Hmong 12 parents 13 MA 2/25/03 3 in 30s 1 in 40s 6 in 50s 1 in 60s Hispanic/ 1 man 12 20- Spanish (24) 19 parents 9 adults and children Latino 24 women 8 35- English & Spanish both (MA or MnCare) 2/12/03 5 50+ (1) 4 adult only (GAMC) Urban 7 children only (MA) Hispanic/ 9 women 7 20- Spanish (6) 9 parents 5 adults and children Latino 1 35- English & Spanish both (MA or MnCare) 2/20/03 1 50+ (3) 1 adult only (GAMC) Rural 3 child only (MA) European 4 women Not yet English 2 parents 4 GAMC American 4 men available 2 MNCare 2/13/03 2 MA (1 African American) European 7 women Not yet English 4 parents 1 GAMC American 1 man available 5 MNCare 2/18/03 2 MA African 7 women Not yet English 8 parents 8 MA American 1 man available 2/20/03 African 7 women Not yet English 9 parents 2 GAMC American 3 men available 8 MA 2/20/03 American 8 women Age range: English 4 parents 1 GAMC Indian 18-55, 7 MA 2/20/03 Average: 35 years American 9 women Age range: English 7 parents 2 GAMC Indian 2 men 20-52, 2 MNCare 2/21/03 Average: 7 MA 36.7 years page 10 Disparities in Minnesota Health Care Programs Focus Groups with Communities Focus group facilitators asked approximately ten questions in each of their sessions. A copy of the focus group guide with the full set of questions is included in Appendix A. We have collapsed the original ten questions into seven critical question areas: 1) What do you and your family do to avoid getting sick? 2) Where do you and your family go to keep from getting sick? 3) When do you or your family go to a doctor or clinic? 4) What are other types of preventive care? 5) How many of you or your family members have gone for these types of services? 6) What keeps you, your family, and your community from getting these services? 7) Does your Minnesota Health Insurance Plan influence whether you get preventive care? Findings from each of the seven question areas are summarized below. What do you and your family do to avoid getting sick? Community participants in focus groups often described activities they or their families could do personally to stay healthy. Responses fell into ten categories—hygiene, diet, exercise, use of health care services, avoidance of health care services, religious/spiritual practices, cultural practices, community and social support, alternative therapies, and other health promoting activities. Specific activities are listed in Table 3. In this narrative, we highlight unique activities and activities common across more than one community. All communities stated that engaging in high standards of hygiene, by keeping a clean home and clean person, were important in helping them stay healthy. Participants also expressed some consensus about the importance of keeping children clean and bathing them frequently. Participants also agreed that eating a balanced and nutritious diet was an important activity to avoid getting sick. Drinking lots of water was cited as an important activity. Hispanic/Latino community members agreed that making sure they and their children avoided cold food (like ice cream) when it was cold out (as well as hot food when the temperature is high) would protect from illness. Focus group participants from two communities shared that avoiding sweets and unhealthy foods for kids was a regular part of their lives. Some community members also specifically cited eating lots of fruits and vegetables as an important part of a diet that protects against illness: page 11 Disparities in Minnesota Health Care Programs Focus Groups with Communities We eat plenty of fruit, especially oranges, especially in wintertime. They have vitamin C that’s better than a tablet. I make sure the children get apples and oranges. –African American participant Exercise as an activity that helps avoid sickness was mentioned by four of the communities. Several participants noted that their experiences now in the United States are different from their lives in their home countries and that their opportunities to exercise are less here: When we were in Laos, the reason we don’t get sick is because, after you eat, you farm all day in the heat and you sweat! I’ve been here in America 10 years now and I haven’t sweat once! The reason the Hmong are more sick today is because we are lazy now, no fields to tend; our blood does not touch our environment, the rain; there’s no sweat, no exercise; we get fat and ugly because we don’t do anything. –Hmong participant There was less consistent agreement across communities in the area of health care services. Some community focus groups cited the importance of taking children in for immunizations or yearly check-ups, while others highlighted the importance of both children and adults going to the dentist. Participants in the Hispanic/Latino and in the American Indian focus groups mentioned flu shots as a way to protect themselves from sickness. Participants from the Somali community shared that they made sure to have their medical care card as a way to protect their health: Since we are living in a new country we realize that health care in this country is different from what we had in Somali. Here one must have medical card. Therefore it is important to first secure the hospital card before we fall sick and need to go to the hospital. –Somali participant Not all communities agreed that interacting with the health care system would help keep them from getting sick. In fact, some focus group participants indicated that they worried about harmfulness of immunizations, x-rays, and some medications. Discussion in the European American focus group highlighted the importance of staying away from doctors as a way to stay healthy: I stay away from the doctor, screening exams and well-baby exams. –European American participant In the areas of religion and spirituality, members of the Somali, Hmong and African American groups mentioned that they would pray to God for protection from illness or consult a religious leader (or both) in an effort to stay well. Other cultural practices were mentioned by some of the communities as important to their efforts to stay healthy: As Somalis we also adhere to traditional methods of prevention. Back in Somalia we would use fresh meat soup and since there is no fresh meat here we use page 12 Disparities in Minnesota Health Care Programs Focus Groups with Communities chicken soup. There are also other products such as traditional spices or honey that work well as preventive remedies. –Somali participant Participants also mentioned the importance of being engaged in social activities (including school oriented activities for children), networking and building strong, supportive relationships to maintaining good health. Alternative therapies as ways to stay healthy and avoid sickness were discussed in the Somali, Hispanic/Latino, European American, and African American groups. The most common activities shared were taking home remedies, meditation, and stress reduction (a variety of methods). Participants mentioned a number of other activities as important for protecting health including dressing warmly in winter, getting plenty of sleep, getting fresh air, and self- education activities such as reading books. Finally, two of the communities mentioned that they give kids and adults vitamins to help keep them from getting sick. page 13 Disparities in Minnesota Health Care Programs Focus Groups with Communities Table 3. Activities Communities Use to Keep from Getting Sick European American African American American Indian Hispanic/Latino Activity Hmong Somali HYGIENE High standards of hygiene (clean home, person) X X X X X X Proper food storage X Children bath frequently X X Children wear clean clothes X Wash meat and vegetables well X Boil water if not purified X Brush teeth X DIET Eat a balanced, nutritious diet X X X X X Make sure kids eat at appropriate times X Avoid sweets, unhealthy foods for kids X X Steaming food, rather than cooking with fat X Eat at home, not on street X Cook food well X No ice cream when cold, alignment of hot and cold X Drink lots of water X X X Avoid processed food, eating organic/whole foods X Using herbs X Walter filtration X Untreated meat and dairy X Avoid refined sugar X Eating lots of fruit, vegetables X X Juice X EXERCISE Exercise regularly X X X X Outdoor activities, less TV X Playing X page 14 Disparities in Minnesota Health Care Programs Focus Groups with Communities European American African American American Indian Hispanic/Latino Activity Hmong Somali USE OF HEALTH CARE SERVICES Take children for immunizations X X Obtain an insurance card X Learn about the medical system X Take children for yearly check-ups X X Children, adults to dentist X X Flu shots X X Regular appointments, prescriptions for elderly X Keeping up with appointments X X AVOIDANCE OF HEALTH CARE SERVICES Stay away from doctor, screening exams, well-baby X exams Avoidance of cleaning products, x-rays, X immunizations Avoid obstetrical medication X RELIGIOUS/SPIRITUAL Praying to God for protection X X X Consulting a religious leader X X Rituals, spiritual practice X CULTURAL PRACTICES Preparing and drinking ethnic soups X Family remedies (cod liver oil, cayenne pepper) X X COMMUNITY AND SOCIAL SUPPORT Letting kids participate in school programs X Socializing X Sex X Good relationships, touch X Co-sleeping with children X Networking, word of mouth X page 15 Disparities in Minnesota Health Care Programs Focus Groups with Communities European American African American American Indian Hispanic/Latino Activity Hmong Somali ALTERNATIVE THERAPIES Taking herbal/home remedies X X X Natural medicines X Taking supplements X Meditation X X Stress reduction X X Acupuncture X Massage/bodywork X Qi gong X Homeopathy X Reiki X Cleansing X OTHER HEALTH PROMOTING ACTIVITIES Children, adults dress warmly in winter X X X X Educational talks X Don’t let kids stay too long in the cold X Make sure kids go to bed early X Getting plenty of sleep X X Educating self X Getting fresh air X X Read books X X Keep kids away from smokers X Give kids, adults vitamins X X Getting food intolerances tested X Extended nursing X Keeping humidity in the house X Avoid bras with under wires X Take a day off X Music X Plants (African violets, aloe vera) X Incense and candles X Staying away from sick people X page 16 Disparities in Minnesota Health Care Programs Focus Groups with Communities Where do you and your family go to keep from getting sick? Focus group participants shared that they go to a variety of people and places to stay healthy--health care services/providers, alternative providers, family and friends, other people, other locations, and a few other options. Communities offered several responses within each category and these are listed in Table 4. Again, within each category, there were responses common across several of the communities and these are highlighted in the narrative. Within the health care services/providers category, several communities mentioned that they would visit clinics for check-ups, for baby check-ups, or for more general care in an effort to stay healthy. Focus group participants mentioned visiting a variety of other health care providers as well (e.g., dentist, eye doctor). In several communities, parents are more likely to use health care services for their children than for their own adult health needs. Participants in the Hispanic/Latino and the African American focus groups mentioned that they would go to mothers (theirs or others) and grandmothers as in order to keep healthy. Focus group participants shared that mothers and grandmothers have the life experience and knowledge to inform the community. Community members from the Somali and Hmong groups also stated that they might visit religious leaders to assist them in their efforts to stay healthy. Several communities mentioned specific locations they would visit to keep them from getting sick. Some of the most common locations were the Y or a health club and the grocery store/coop/natural foods store. One participant commented on her efforts to combine health care options with other non-traditional options for keeping healthy: It fries me that medicine doesn’t embrace physical therapy and massage. If I had to get a prescription, I’d get it from the doctor. But where I’d go for an injury – I’d get physical therapy and massage. But I can’t without coverage. So I do the pool — the touch of water is my massage. I go to my regular doctor — I made the decision to change doctors because I was not getting the answers I needed. I go regularly but at my decision. She understands I’m a co-participant in my care. I know my body better than anyone. –European American participant The Hispanic/Latino community responded to this question with a strong message about visits to community organizations that provide services to their families. In the American Indian and European American focus groups, community members indicated that in order to stay healthy, they would not go where there are sick people (e.g., hospitals, clinics, and other locations). In the Somali community, several participants shared that going to the doctor or clinic while well is like asking to be made sick. page 17 Disparities in Minnesota Health Care Programs Focus Groups with Communities Table 4. People and Places Communities Visit to Stay Healthy European American African American American Indian Hispanic/Latino Person/Location Hmong Somali HEALTH CARE SERVICES/PROVIDERS Visit clinics for baby check-ups X X X X Visit clinic for check-ups X X Visit to health care provider, clinics X X Psychiatrist, therapist, mental health care provider X Dentist X X Eye doctor X X Physical therapy X Midwives X Nurse phone line X ALTERNATIVE PROVIDERS Chiropractor X Massage X FAMILY AND FRIENDS Mothers (theirs or other mothers), grandmothers X X Friends X X OTHER PEOPLE Visit a religious leader X X To myself X OTHER LOCATIONS Stay home X Y (health club) X X Swimming pool X Sweat lodge or sauna X Organic farm X Grocery store, coop and natural foods store X X Community organizations X Schools X page 18 Disparities in Minnesota Health Care Programs Focus Groups with Communities European American African American American Indian Hispanic/Latino Person/Location Hmong Somali OTHER LOCATIONS (CONTINUED) Outside for fresh air X Women’s circle X Community events X Church X Community and elders X Park X OTHER OPTIONS To get a good meal at least once a month X Stay away from places where there are sick people X X When do you or your family go to a doctor or clinic? The central responses to this question are listed in Table 5. Across all focus groups, some participants stated that they would visit a doctor or a clinic for a specific preventive service—a baby or child check-up, immunizations for children, pregnancy care, adult annual exams, or other adult services: I have yearly checkups and when my body tells me there’s something I need to know more about. I don’t think there’s anything they can tell me that I don’t already have a clue about. –African American participant Within every community group, some participants also shared that they would only visit the doctor or clinic if they had to—they were required by a job or school to have a physical or they or their children were sick or in need of emergency assistance: Well for example if a child gets sick and he has been sick for two days and does not get better, then I take him to the doctor. –Urban Hispanic/Latino participant Several participants spoke about visiting a health care provider when they were frantic or had no other recourse, but not before: I go when I can’t take the pain or misery. – European American participant page 19 Disparities in Minnesota Health Care Programs Focus Groups with Communities In the three recent immigrant communities (Hispanic/Latino, Somali, and Hmong), several participants described the process they used to determine whether to visit a religious leader/spiritual healer or a doctor/clinic or both, depending on the nature of the health issue. In the Hmong culture, individuals may choose to use shamanism (animistic religion where mediation between the visible and spirit worlds is influence by shamans) before or concurrently with traditional Western medicine: It just depends on how you think and what you want. Those who practice shamanism, they will do it first before they see a doctor, those who don’t practice shamanism, they go to the hospital. –Hmong participant In the Hmong culture, there are many things to consider. First, if it involves the spirit or the soul, then Hmong culture is good. For instance, if a person is startled and the spirit/soul leaves the body, then we can go the Hmong culture route the way we want. But if it’s a disease/bacteria/virus/cancer (phab nyaj), then our culture cannot fix this. We have to see a doctor. –Hmong participant In the Hispanic/Latino culture, individuals may visit healers if the nature of an illness warrants such a visit or if use of Western medicine is not effective: What I can tell you is that if they go to the doctor and the doctor says that he doesn’t have anything and the medicine does not work, that is when the work of the herberas [healer] begins. –Hispanic/Latino participant Finally, in the African American community, participants stated they would visit a doctor or clinic when they had insurance. Given that many of the participants in MHCP programs do not have consistent insurance coverage, but repeatedly enter and exit the system, focus group participants shared that they took advantage of visiting a health care provider when they had the insurance to cover the cost of the care. page 20 Disparities in Minnesota Health Care Programs Focus Groups with Communities Table 5. Reasons Community Members Visit a Doctor or Clinic European American African American American Indian Hispanic/Latino Reason for Visit Hmong Somali Visit clinics for baby/child check-ups X X X X Visit clinics for child immunizations X X Pregnancy X Visits for adult annual exams X X X X X Other adult services (Pap smear, prenatal care, X X X X mammograms) When required (job, school physical) X Only when sick (children, elderly) X X X X X X Have no other recourse, desperate, frantic X X X In need of emergency assistance X X X X Treatment when necessary and when not X appropriate to use shamanism or other cultural/religious treatment When have insurance X What are some other types of preventive care? A sample list of preventive care services was presented at each focus group to facilitate discussion. Facilitators shared that for men and women, annual exams and cholesterol checks would be possible preventive care services. For men only, prostate screens were an example of a preventive service; and for women only, prenatal care, mammograms, and Pap smears were examples of preventive services. Well-baby exams and childhood shots were examples of services children might receive. Focus group participants discussed two types of preventive care—services provided by the health care establishment and other services participants defined as preventive. page 21 Disparities in Minnesota Health Care Programs Focus Groups with Communities Suggestions for additions to the list of preventive care services provided by the health care establishment included: · Dental care · B-12 shots · Eye exams · Hearing exam · Birth control · Stress test · Mental health services · Physical therapy · Midwife services · Speech therapy · Understanding medical terminology · FAS sensory integration therapy Several participants were curious as to why MHCP does not include birth control as a preventive service: Why have four kids if I can only educate two. It would be a lack of thinking to have ten children and hardly be able to support them financially as well as educate your family. –Urban Hispanic/Latino participant Community focus group participants also identified a number of other preventive services/activities that fall outside of the typical Western definition of preventive services, including: · Chiropractor · Access to health clubs · Support groups · Chinese medicine · Bodywork · Doulas · Nutrition · Healing circles · Exercise How many of you or your family members have gone in for any of these services? Each of the community focus groups responded to this question a bit differently, so each community is addressed in turn. In the Somali community, focus group participants shared that they took their children in for well-baby exams and for immunizations. Women offered that they used the health care system for pregnancy/pre-natal care as well. However, the idea of preventive care is new to Somali immigrants. Many have not heard of any of the listed preventive care services. In addition, according to Somali religious beliefs, it is only God who brings disease. The notion of going to the health care system for preventive services is like asking God to make an individual sick and is undermining God’s ability to protect them. Somalis believe that many conditions (e.g., obesity, high cholesterol) affect Americans only or are important to Americans only, so there is no need to seek protection from diseases resulting from these conditions. page 22 Disparities in Minnesota Health Care Programs Focus Groups with Communities In the Hmong focus groups, all of the men reported using preventive services and about two-thirds of the women reported using preventive services. Approximately half of the women reported that they took their children in for preventive services. Use of preventive services among the Hmong culture seems to hinge on a number of factors— age, acculturation, and religion being the prominent ones. Older participants noted that they would not engage with the health care system unless clearly sick. Younger participants were willing to engage with the health care system (e.g., an interest in regular check-ups or an interest in treatment for certain diseases, or symptoms that cannot be addressed by a cultural healer, or a shaman): From what I see, there are two routes: One, older parents who were raised in our old country, they think like what we talked about earlier (not prevention oriented). If there is no physical symptoms or pain, don’t go check it out. But there are some who do think about prevention. Younger people, they have adopted American thinking. They completely trust their health to the medical system here. Whether or not they are sick, they go see a doctor because they think like Americans. And so we have two categories of people who think very differently. – Hmong participant Participants in the Hispanic/Latino focus groups shared that men rarely use preventive services. All of the women participating in these groups, however, had used preventive services. Hispanic/Latino participants mentioned their main motivations for going to seek preventive services was their own personal health and the health of their children. Specifically, participants would go based on pregnancy recommendations from friends and family, suggestions from a doctor, suggestions from social workers/community- based health workers, and educational ads. One participant noted that she used preventive services because she has the right to: I think that a person has the right to take [children] to check-ups and yes vaccinations are very important. If a child has a cough and the parent does not take the child to the doctor, it can cause more problems. So I say that if someone is paying for their insurance, then they should take them. –Urban Hispanic/Latino participant In the European American focus groups, approximately one-third of the participants had taken their children in for well-baby exams, but fewer had taken their children for immunizations (less than one-fourth). About one-third of the women in these groups shared that they used preventive services. African American focus group participants used the health care system for adult preventive services (both men and women) and also took their children in for immunizations and well-baby visits: I take the kids every year to make sure they’re healthy. –African American participant page 23 Disparities in Minnesota Health Care Programs Focus Groups with Communities Some of the participants in the African American groups expressed concern about coercion to engage in preventive services. Specifically, individuals shared the belief that they would go to jail or would be visited by child protection if they did not get immunizations for their children: Child neglect – if you don’t take the kids for shots, you’ll have child protection knocking at your door. They won’t let your kids in school. – African American participant American Indian focus group participants (almost entirely women) shared that they used preventive services for themselves. Some of their reasons for using these services included receiving reminder calls and cards from clinics, needing physicals for their jobs, and running out of birth control pills. What keeps you, your family, and your community from getting these services? Community focus group participants responded to this question (actually a series of questions) with a variety of reasons, challenges, and perspectives on why they and members of their communities do not receive preventive or other health care services. These barriers are not only relevant to the receipt of the preventive care services outlined above, but are relevant to the cross-section of services individuals and families receive from Western health care providers. As before, we have catalogued these reasons and clustered them in categories below (see Table 6). There are 16 major categories of barriers—fear, discrimination, mistrust, lack of respect, communication problems, provider options do not meet needs, other provider issues, cost/lack of insurance coverage, issues of time, lack of understanding within community, lack of understanding by the health care system, religious or cultural beliefs, systemic barriers, feeling healthy so no need perceived, pain associated with procedures, and a variety of miscellaneous barriers. For each of these categories, we will describe the reasons most often cited by communities. Several communities shared that a fear of bad news prevented their use of the health care system: I don’t want to go in and hear the bad news. –European American participant Communities also identified fear of misdiagnosis and poor care as reasons for not seeking services: People will not stay at home if they know they will be treated or given the right diagnosis. But we don’t get normal treatment or diagnosis and we find no point in going to clinic or hospital. –Somali participant page 24 Disparities in Minnesota Health Care Programs Focus Groups with Communities Fear of the medical establishment arising from personal experiences and from experiences of friends and family members also influenced whether communities received services: Other ethnic group, they are not scared of the medical system. But for us Hmong, even if you are already sick, we are still fearful of going to the doctor/clinic/hospital. They fear that what if it’s not even serious and they want to operate on me, or want to cut something out! –Hmong participant All of the communities identified discrimination as a reason why they do not receive health care services: ‘What’s wrong with the baby?’ He knew we didn’t speak a lot of English. My husband speaks it more or less and he explained to him and [the doctor] said, ‘Put him there!’ He was very rude, very cold. I was going to say, ‘What is wrong with this doctor? Maybe he doesn’t like us or what? He would turn to us as if he were bothered, or mad. I was going to say, ‘Well, Doctor, are you tired? You don’t like us? Or is it just because I don’t know your language? If you don’t feel well, if you’re tired, if you don’t like us, if you don’t like the work that you do, well send us to another doctor that has the time and likes us Mexicans so that he can treat us well…But I just held it in. –Rural Hispanic/Latino participant Specifically, focus group participants shared that hospital and clinic staff have a discriminatory attitude toward immigrants and those of other races: The doctors talk to us differently then they talk to white or black people. Discrimination-racism is alive and well in Minnesota. You would think with so many different cultures in Minnesota that things would improve and they really haven’t. –American Indian participant How the doctors treat minority children differently from non-minority kids and families when they talk to the minority family or child they are very direct and short with them, then they walk on. –American Indian participant Further, participants felt that health care providers have a discriminatory attitude toward those with public health insurance: Refugees don’t get real treatment at hospitals or clinics. Doctors study them and pretend they are treating them. But Americans get real treatment. We think it is because of the medical cards we carry. When an American is in front of you, the doctors will take as much time with them as possible. But when a refugee walks in they simply stare at you and say come back. The only thing they will do is prescribing Tylenol regardless of the condition you are suffering from. There is discrimination and I wonder why. That is why it is better to stay at home and get spiritual treatment. –Somali participant page 25 Disparities in Minnesota Health Care Programs Focus Groups with Communities There are other problems for those of us who use medical cards provided by the Government. When you get a prescription from a doctor and take it to the pharmacy, they will tell you your card doesn’t cover the medicine you ought to have. When you go to the doctor for a substitute, the doctor prescribes cheap or useless medicine. I am really surprised that in the same hospital, in the same building, in the same institution there is this lack of communication and they waste people’s time. I am even more surprised that the government card is not valued and respected by the hospital workers and that I am now convinced that government medical coverage is as good as no coverage. There is something not clear or totally wrong. –Somali participant If you are Latina or if you are something, not white but you’re Hispanic, they ask you right away, “Do you have Medical Assistance?” Why do they assume that you have Medical Assistance, that’s the thing? –Rural Hispanic/Latino participant They treat you different because of insurance…People get more respect if they’re getting it through their job. –European American participant You don’t get treated the same as someone not on [government insurance]. – African American participant Go to a clinic and you are bombarded with questions about being a welfare mother. It is so frustrating. –American Indian participant Related to discrimination and fear, as well as other barriers, all of the communities again shared their mistrust of doctors/nurses, hospitals and pharmacies: Doctors are the enemy. I’ve seen what they’ve done to my mom. –European American participant And then there’s the conspiracy theory – the Tuskegee experiment, where they injected men with syphilis. You never know what they’re doing, whether they’re doing experimental stuff. Like the flu shot. –African American participants Focus group participants shared that they could not trust the advice of providers and mistrusted providers’ knowledge and experience. Further, community members mistrusted health care providers because they felt disrespected and not listened to during their visits: How can someone treat me without even inquiring from me about my problem and a part from the ear infection if I have other problems? To me that was inappropriate and I feel discriminated and ignored as someone who needs treatment. –Somali participant page 26 Disparities in Minnesota Health Care Programs Focus Groups with Communities I don’t think doctors listen to me--they don’t give you any time anymore, they minimize your issues. –American Indian participant Community members also explicitly identified respect as a reason they do not engage with the health care system. Focus group participants shared that visiting health care providers is not an empowering experience: It feels like a disempowering experience. I feel like I hand over my power. – European American participant Community members reported that they are not treated with the respect they deserve and this prevents full participation in the health care system and its services: There’s disrespect on both sides, from the patient and the doctor. It’s more prevalent with facilities that take public programs. –African American participant Communication was also expressed as a barrier to the use of health care services. Poor communication by providers and lack of listening by providers was a common concern: There’s a communication problem—communicating what the problem is and physicians have an aura that they know it all. –African American participant Several communities also shared that their language difficulties and lack of English skills make involvement with the system challenging, especially when it may result in misdiagnosis because an individual is unable to communicate clearly: The most important thing is the lack of English skills. What if you mean “no” and you said “yes”, this is the biggest mistake you can make, right!? You have just unknowingly authorized doctors to amputate your arm or leg off, what will you do then?!! –Hmong participant For those communities who use interpreters during their health care visits, interpreters may not adequately convey what patients tell doctors. Further, interpreters may not be available for appointments or to assist in making appointments: That would benefit us so much! Interpreters are always busy. We have two or three interpreters and they are busy, and so one can make the appointment without having to bother several people. If only there were one person who would help us in Spanish to make the appointments. –Rural Hispanic/Latino participant When considering barriers related to providers, community members expressed concerns about provider selection as well as other provider issues. A primary concern of several communities was the inability to select and keep a consistent provider with whom they could develop a relationship: page 27 Disparities in Minnesota Health Care Programs Focus Groups with Communities [With anger in voice] I’ve been trying to find a good doctor 20 years now and still I haven’t found the right doctor. The year I had an operation, if she really wanted to help me, my operation wouldn’t have been necessary. That’s the truth. I was in so much pain; she didn’t even know or care, didn’t examine my urine, touch here and there and told me to go home. They are just there to collect a paycheck. – Hmong participant Given the intrusive nature of health care, a solid relationship was identified as critically important: I have a lot easier time going to a doctor I’ve known for my whole life— I have no problems going to him, but I would hate to go anywhere else. –European American participant Focus group participants also identified inability to select a provider of the same gender as a problem. This was especially important for women in the groups. In the area of other provider issues, focus group participants shared that they are less likely to engage with the health care system when their providers are residents or interns at a teaching hospital and not “full doctors:” I don’t trust new people. I want [a doctor with] 20-30 years experience before you touch me. –European American participant HCMC is a training facility and it makes me nervous. –European American participant I want to make sure that it is written down that I want a full-fledged doctor. Because they always send in someone who is doing their last year of residency. And then they’ll go back to whomever they are learning from, and then they go and talk to the director of nursing when they should actually be talking to the actual doctor. When I say I don’t trust the doctors they are not real doctors yet. When you’re sitting there for two to three hours I want a real doctor that will look at me for twenty minutes and say this is what is wrong with you. They don’t tell you that you’re a guinea pig. They don’t tell you that you will have to sit there for hours and hours because you are in a learning environment. What it comes down to is that student has to discover what the doctor already knows through trial and error. That’s why I never go to Hennepin County hospital because it is a learning hospital. –American Indian participant I wanted my children to see a psychiatrist or a psychologist and I made the appointment and when I got there it was a counselor with no degree. I was willing to settle for a psychologist and when we got there it was a counselor. So it’s like they minimize us on medical assistance. They treat us like we do not deserve the big doctor with the big pay. Minority and poor are treated with no respect. – American Indian participant page 28 Disparities in Minnesota Health Care Programs Focus Groups with Communities Several communities identified cost as a barrier. Specifically, participants shared that their financial worries prevented them from using health care services. The primary worry was that insurance would not cover the entire bill. Coupled with a perception that doctors perform many unnecessary examinations, the potential costs of services was a central concern: Severe illness or not, you go to the doctor/clinic/hospital—yes it does help—but you spend a lot of money. I have experienced this many times. They examine your eye, your ears, your mouth, I don’t even get any medicine, when the bill comes it’s over $100. Health insurance helps, yes, minor things they make it major. I haven’t been on Medical Assistance for 5 years now (now on MNCare), so if in a month prescription drug costs me $30, I have to pay out of pocket $15. –Hmong participant Community participants mentioned many barriers to receiving health care services related to time. Several communities mentioned that the amount of time it takes to even secure an appointment for a visit is a barrier: Many times you have to make the appointment for one month later…–Urban Hispanic/Latino participant Time is a problem, what you have to go through. I wait till the symptoms arrive, then they tell you wait a month for an appointment, so I end up not going. – African American participant A couple of community groups highlighted the issue that appointments are made too far into the future to remain relevant to people’s lives: Yes, that’s what discourages me. That they say, “Yes, there is an opening for a physical.” I say, “No, I only want a Pap Smear, just to get it checked.” “Well, no, we need to do a whole physical. But there are no openings for three months.” So I make it for three months from now and by the time, oh like, the day before yesterday, I had an appointment for the physical and I forgot. –Rural Hispanic/Latino participant Further, the time spent waiting at a clinic for the appointment was a common problem: They waste time. You come for treatment and you are forced to sit for 2- 3 or even 4 hours. They are very insensitive to sick people. What is the point of going to hospital if your problem cannot be attended to on time? –Somali participant The fact that community members have to miss work and their children have to miss school because of appointments is another key challenge. Many community members do not have jobs that allow for flexible time or scheduling: page 29 Disparities in Minnesota Health Care Programs Focus Groups with Communities I used to work and would ask for permission because I was pregnant, and then for my son, he needed vaccinations and everything. And well, yeah, the supervisors get bothered, “You’re going to leave again? You have to go again?” I know it bothers them. –Rural Hispanic/Latino participant And many times you don’t have a job that is secure. They are only jobs that are temporary and you have to be very careful because if you leave a lot your number will come up. –Rural Hispanic/Latino participant That community members were just too busy for these appointments was also shared: We have other priorities — some, yes, financial, transportation, time— they’re all issues for low income. If you’re depending on your pay, you can’t afford to take time off. –European American participant Another area of concern raised by communities was a lack of understanding of prevention and the services available from health care providers, as well not knowing what is covered by insurance plans. A few of the communities also cited difficulties understanding and navigating the American medical and insurance systems as major barriers for participation in health care services: When we were in Laos, we have no hospitals; we are used to waiting until you really are sick before you get care. In America, we don’t know how to use their system. There is no one to educate us that it’s good for us to go get preventive services…we need people to educate us.—Hmong participant A parallel concern expressed by communities was the idea that there is a lack of understanding by the health care system regarding issues important to communities. This leads to decreased use of health care services. Several participants shared that the health care system does not understand the reasons for use of traditional medicine, the importance of religious healing, or the culture, customs, or illness common within many communities. Related to this is the notion that some communities have religious beliefs influencing their participation in the health care system. In the Somali culture, individuals go to the doctor when they are sick only. Shamanistic beliefs in the Hmong culture influence whether and when individuals go to the doctor. Cultural norms of modesty and shyness also prevent some community members from regular engagement with health care services: We Hmong are very modest and shy. My doctor begged me many times to do a physical but I refused because I’m very shy about exposing myself. She said that she would be persistent until the day I give the wrong answer. Every time I see her, she asks me. I have a friend who told me about her experience. The doctor told her they want to examine her. She looked at the interpreter and replied, “tell her that if she wants to examine me, that’s fine. But the minute she is done, I will drop dead.” [laughs] –Hmong participant page 30 Disparities in Minnesota Health Care Programs Focus Groups with Communities Of the systemic barriers identified by communities, transportation was an important barrier for all communities. Focus group participants either were unaware of MCHP supports for transportation to and from appointment or had trouble ensuring reliability of this transportation. For those relying on public transportation, time was a factor. Difficulty getting childcare was also perceived to be a barrier to the use of health care services. American Indian participants indicated difficulty getting in for care because clinics were no longer accepting new clients. Interestingly, compensation rates to providers were listed as a barrier to care among European American participants. Unique to the Hispanic/Latino community was the concern that health care services are promoted very differently in the United States than they are in Mexico. Focus group participants shared that in Mexico, public health workers go door-to-door through villages to ensure all children have their immunizations. Several participants expressed concern that the strategy in the United States puts much more effort on the parents to keep immunizations updated and less emphasis on public health workers. In the remaining barriers categories, a few of the responses were common across more than one community. All but the Somali focus group shared that if they felt healthy and did not have physical symptoms, they would not seek any health care services: If it ain’t broke, don’t fix it. –European American participant In two of the communities, pain associated with preventive health care services (e.g., mammograms) was a barrier to use of these services. Other communities shared that providers often seem uninterested in really helping individuals and this prevents participation in health care services. Finally, two of the communities explicitly stated that the Western notions of preventive services were not what they wanted and this kept individuals from using services: I want to make a distinction —I don’t see screening tests as preventative care. – European American participant Clinics that I can go to don’t often offer the kinds of preventative care I need -- like herbal, and a chiropractor. –European American participant It segregates mind and body and spirit. –European American participant The health care system that is supposed to benefit us isn’t really there, or as fair, to our community. It’s not there to back us as a community, so we have to live off our knowledge. –African American participant page 31 Disparities in Minnesota Health Care Programs Focus Groups with Communities Table 6. Reasons Individuals, Families, and Communities Do Not Receive Services European American African American American Indian Hispanic/Latino Reason Hmong Somali FEAR Fear of medical establishment (arising from past X X experiences) Fear (arising from friends and family members’ X X X experiences) Fear of bad news X X X X General fear of misdiagnosis X X X Fear of poor care X X Children are afraid to go X Loss of files, mix up of files, will get wrong X treatment DISCRIMINATION Discriminatory attitude by health care staff toward X X X X X X immigrants, those of other races Discriminatory attitude by health care staff toward X X X X those with public health insurance Discrimination in how providers interact with older X individuals Discrimination by providers based on gender X MISTRUST Mistrust of doctors/nurses, hospitals and X X X X X X pharmacies (cannot trust advice of providers) Mistrust in doctors’ experiences and knowledge X X Mistrust based on a lack of respect, lack of listening X X X X by providers Mistrust based on past history (Tuskegee X experiment) page 32 Disparities in Minnesota Health Care Programs Focus Groups with Communities European American African American American Indian Hispanic/Latino Reason Hmong Somali LACK OF RESPECT Visiting providers is a disempowering experience, and community members are not treated with X X X respect) COMMUNICATION PROBLEMS Communication (health care providers do not listen) X X X X Language difficulties (leading to misdiagnosis, X X X X wrong prescriptions), lack of English skills Interpreters do not adequately convey what patients X X are telling doctors (lack of quality interpretation) Interpreters not available to make appointments X Materials/information not offered in native language X PROVIDER OPTIONS DO NOT MEET NEEDS Inability to select providers of same gender X X X Inability to select providers of same ethnicity X (leading to trust issues) Inability to select provider, keep consistent provider, X X X X X develop relationship with provider OTHER PROVIDER ISSUES Doctors too thorough, want to check everything X X when patient concerned with specific visit reason Not enough providers, especially at an emergency X room Doctors not thorough enough (and do not try to X determine what is really wrong) Providers are not full doctors, but are residents or X X interns Lack of bedside manner (customer service) X Providers uninterested in helping X X Dislike doctors X page 33 Disparities in Minnesota Health Care Programs Focus Groups with Communities European American African American American Indian Hispanic/Latino Reason Hmong Somali COST/LACK OF INSURANCE COVERAGE Inadequate insurance coverage for essential services (e.g., emergency visits, contraceptives, X some prescriptions) Financial worries (insurance may not cover entire X X X X X bill) ISSUES OF TIME Time spent waiting at the clinic (for the X X X X X appointment) Time to secure an appointment for a visit X X X X X Have to miss work, school X X X Cannot afford to leave work X X X X Time to schedule an interpreter X Time spent waiting during the appointment X Appointments made too far into the future X X Being placed on hold for extensive periods of time, X told to call back for no reason Too busy X X X Not enough time to ask questions in appointment X Clinic hours do not fit schedule X X LACK OF UNDERSTANDING WITHIN COMMUNITY Lack of understanding of prevention, lack of awareness of all available services, what covered X X X X by insurance Lack of understanding of American medical system X X X and insurance system, inability to navigate system Lack of education, not prevention oriented X X Lack of understanding of American culture/system X page 34 Disparities in Minnesota Health Care Programs Focus Groups with Communities European American African American American Indian Hispanic/Latino Reason Hmong Somali LACK OF UNDERSTANDING BY THE HEALTH CARE SYSTEM System does not understand traditional medicine, religious healing, culture, customs or illnesses X X X X common in certain cultures System separates mind, body and spirit X Refugees’ lack of medical history (leading to the X wrong treatment) RELIGIOUS OR CULTURAL BELIEFS Religious beliefs (e.g., only go to doctor when sick, X X Shamanistic beliefs) Cultural perspectives on time, keeping X appointments Modesty and shyness X X SYSTEMIC BARRIERS Transportation X X X X X X Childcare X X X Forms (on first visit) X Preventive services promoted differently (e.g., Mexico and Latin American countries have different X orientation toward public health) Government programs do not compensate X providers enough Clinics are not taking new patients X FEELING HEALTHY SO NO NEED PERCEIVED Lack of physical symptoms X X X X X Medical services are just for when you’re sick X Men generally do not feel the need to go X PAIN ASSOCIATED WITH PROCEDURES Pain (e.g., mammograms) X X page 35 Disparities in Minnesota Health Care Programs Focus Groups with Communities European American African American American Indian Hispanic/Latino Reason Hmong Somali MISCELLANEOUS BARRIERS Burdensome to others (family, employers, X interpreters) for one appointment Burdensome to clinics seeing a lot of X Hispanics/Latinos Being sent to providers in a larger city X Lack of family support (machismo) X Physical environment of health care facilities X Screening tests are not preventive, do not fit with philosophies of health and healing (these activities X are not health promoting) Low income communities are smarter than other communities (and therefore do not use these X services) Lack of clear evidence demonstrating that these X services prevent illness Services are not what clients want X X Lack of access in past (short term and historically) X set up practice pattern of non-use Stubbornness, laziness X Mental health issues X How does your Minnesota health insurance plan influence whether you get preventive care? Although two of the community groups did not address this issue (i.e., Somali and Hmong), the other four communities had generally consistent responses. Most participants stated that their participation in a Minnesota insurance plan did not make them likely to seek more services, but that it did often facilitate their use of health care services generally: If I decide I need it, I’d be more likely to get it if I have coverage. –European American participant page 36 Disparities in Minnesota Health Care Programs Focus Groups with Communities Some of the participants affirmed that they use the covered preventive services because they are on a Minnesota plan: It matters for dental and eye care. –European American participant I’m more likely to get annual exams and pap smears. –European American participant Participants did express some specific concerns related to their use of Minnesota insurance plans. Some communities expressed concerns about finding clinics that will still take their Minnesota insurance plan, given that the number of clinics accepting these programs seems to be decreasing: It’s getting harder and harder to find people who take MA. The few places that take it aren’t that great. Still there’s some good places. But the best are getting few and far. –European American participant Other participants expressed a concern that dental services are too minimal and that individuals have to sacrifice because of a lack of coverage for certain services. Finally, many participants in the Hispanic/Latino focus groups wondered why this group is doing a study about people who already have insurance when the focus should be on those individuals without insurance or those who cannot afford insurance but are ineligible for state programs. page 37 Disparities in Minnesota Health Care Programs Focus Groups with Communities Across the communities involved in the focus groups, there was a strong sense of the importance of taking care of oneself and one’s children. Two important themes arose related to this issue. First, it became clear from focus group participants that how each community defines and describes “preventive care” differs from traditional Western medical definitions. When asked what participants do to keep from getting sick, most indicated activities outside the health care system, such as eating well, keeping clean, getting exercise, and sleep. By contrast, services defined by the health care system as “prevention” were often viewed as “detection.” As one focus group member shared: What I’m hearing, is that everyone is making conscious choices about health care, whereas the assumption of this study, is that we’re not accessing it. We’re not blowing off health care, but we’re all doing it. Second, when members of these communities do attempt to access and use the traditional Western health care system, they confront a wide variety of barriers. Another participant shared: This system doesn’t work for most of us and for those it does, not well. The system of payment doesn’t pay for what we need, and it doesn’t pay for what we don’t need. In terms of defining health and prevention, focus group participants included a broad range of activities and services beyond those offered through the health care system: hygiene, diet, exercise, religious and spiritual practices, cultural practices, and alternative therapies. In these communities, in order to stay healthy, individuals turn to family and friends (mothers and grandmothers in particular), religious and community leaders, alternative providers, and places such as health clubs, natural food stores, and community groups. Focus group participants go to a Western doctor or clinic for specific services (e.g., prenatal care and childhood immunizations), when their children are sick, and when they are sick and feel they have no other recourse. The wide variety of barriers that keep members of these communities from going to a doctor or clinic for “preventive services” include: fear, discrimination, mistrust, lack of respect, communication problems, provider options do not meet needs, other provider issues, cost/lack of insurance coverage, issues of time, lack of understanding within community, lack of understanding by the health care system, religious or cultural beliefs, systemic barriers, feeling healthy so no need perceived, and pain associated with procedures. Of these barriers, a few appear to be the most pervasive across all of the focus group participants: page 38 Disparities in Minnesota Health Care Programs Focus Groups with Communities · discriminatory attitude by health care providers toward immigrants or those of other races; · mistrust of doctors/nurses, hospitals, and pharmacies; · inability to select provider and/or keep consistent and develop relationship with provider; · financial concern that insurance will not cover the entire bill; · time it takes to secure an appointment and time spent waiting at the clinic; · transportation issues; and · lack of physical symptoms (feeling healthy) means no perceived need for care or prevention. The experiences and feelings shared during these focus groups provided us with a wealth of information to use in meeting the two research goals of this project--to add to the general knowledge about barriers to preventive care among the participating communities and to inform the development of a survey instrument. Further, this focus group report will be of interest to various communities as people and organizations continue to work to improve health care and access. However, our work with these communities through the focus group method is not without limitations. Our sample of participants cannot be considered representative of these communities. Further, we were constrained to only two focus groups with each community. Although these caveats are important, they do not diminish the value of the information gathered through this method. The knowledge shared by communities through these focus groups is important on its own as well as in its ability to influence future research and advocacy activities. page 39 Disparities in Minnesota Health Care Programs Focus Groups with Communities Date _________________________ Location ___________________ Facilitator _____________________ Number of participants ________ 1. Opening Remarks and Introductions [Sample notes to assist Focus Group Facilitator] Thanks so much for coming today. I am _________ and with me is __________. We have been asked by the University of Minnesota to help get some information about what people in the ____________ (e.g., Somali) community do to stay healthy. Discussions like this are also being held in African American, American Indian, Caucasian, Hispanic/Latino, Hmong, and Somali communities. In all these discussions we are only inviting people who are enrolled in one of the Minnesota health care programs, like Medical Assistance, MinnesotaCare or General Assistance Medical Care. What we learn tonight will help people at the University develop a statewide survey looking at when and how people use these services. When you came in we talked about the consent form, so you know we are taping this but we won’t start until after the introductions. We tape because we don’t want to miss anything and sometimes it is hard to remember all the good points people make if we don’t record. But don’t worry. We don’t use your names in the report that we give to the University, so what you say is confidential. My job here tonight is to ask some questions and listen. It will be more interesting for everyone if we just have a conversation. So don’t feel you have to respond to me all the time. Please feel free to follow-up on something someone else said. Or if you have had a different experience from what others have said, it will be really helpful to hear that. To get started, please tell us your name and, just for fun, what is your favorite thing about Minnesota winters. (Feel free to ask a different opening question if you like.) REMEMBER TO TURN ON THE TAPE page 40 Disparities in Minnesota Health Care Programs Focus Groups with Communities Great. We aren’t going to go around the table for these questions, so feel free to just jump into the conversation when you want. 1. What do you and your family do to avoid getting sick? Probes (if necessary) about what is done to keep children from getting sick. 2. Where do you and your family go to help you to keep from getting sick? 3. When do you or your family go to a doctor or clinic? 4. Doctors and clinics provide services that they believe help people stay healthy. Sometimes these are called preventative care. (Put these on a flip chart to refer to…) a. For example, women can get prenatal care when pregnant, annual exams, cholesterol checks, mammograms, and pap smears. b. Men can get annual exams, cholesterol checks, and prostate screens. c. Children can get well-baby exams and childhood shots. What are some more of these types of services? (add to list if they make suggestions) In the past year, how many of you or your family members have gone in for any of these services? It is all right to say if you haven’t, lots of people don’t. That is what we want to learn more about. (have them raise hands and then count and say the number out loud so it will be on the tape) For those of you who got some of these services in the last year, (write down) what got you to go. For those of you who haven’t used any of these services in the last year, write down why you don’t go. OK. Let’s share what you wrote down. Let’s start with what gets you go to. (Write these on a flip chart with the heading “gets you to go”) OK. Now, for those who didn’t go, why didn’t you go? (Write these down on a different page of the flip chart with the heading “keeps you from going”) Let’s talk about these (refer back to the “keeps you from going” list). We are most interested in what keeps people from using these services. Tell me more about these. Have others of you felt this way or faced these problems? page 41 Disparities in Minnesota Health Care Programs Focus Groups with Communities 5. When researchers look at who gets these services (point back to your flip chart with the mammograms, etc.), they have found that ________ (e.g. Somalis) don’t get these services as often as other groups. Why do you think we might use these services less than others? (Add any additional reason to your list.) 6. I am going to look at a list here that other people came up with and see if we missed anything. [Add anything from the list below that is not already on your list.] Are any of these important to you and your family? Tell me which of these is important to you and why. · Feel fine so isn’t a priority · Communication problems o We don’t understand each other o I don’t think doctors listen to me · Language difficulties; don’t speak the same language · Don’t trust doctors/nurses · Don’t feel I am treated with respect · Can’t see the kind of doctors/nurses I want to see · Modesty—I don’t like being seen/touched by medical people · Fear o My children are afraid to go o I am afraid to go, might get bad news · Financial worries--Not sure my insurance will pay or how much it will pay · Transportation issues · Time issues o I’m too busy o Hard to get off work o Takes a long time to get an appointment o Have to wait a long time once I get there o Clinic hours don’t fit my schedule · No childcare 7. Looking at all of the things that may make it difficult to get these types of services, we want to know which of these is most important to you. a. What are the three biggest reasons that you or people you know don’t get these types of services? I want you to write down the three things that keep you or your family members from getting these types of services (point to the preventive care list). [Read the entire list of reasons to not page 42 Disparities in Minnesota Health Care Programs Focus Groups with Communities going again to everyone. Give people time to write them down. Then have people share and circle their answers.] 8. How does your Minnesota insurance plan (MA, MinnesotaCare, or GAMC) influence whether you get preventative care? Are you more likely to go for preventative care because you are in a state program, less likely to go for preventative care, or doesn’t it make any difference? 9. Is there anything we’ve missed that may be important for why some people get preventive services like immunizations, annual exams, flu shots. 10. What is the most important thing you heard here tonight? Thank participants. Make sure that they have an opportunity to indicate that they want to receive a copy of reports. IF they do, please gather name, address information. The Urban Coalition can send out the reports or provide you with copies to mail out. We will also provide some pamphlets/information about suggested use of preventive services. Participants should have the opportunity to take copies. page 43