Thursday, October 27, 2011

Giving Back: My next step working with refugees

Shortly before I left the U.S., I had a patient from Nigeria. He was a refugee living in San Diego on his own. Maybe he lived with his sister or some relative, but I can't remember exact details. His story was super intriguing, as he described his living situation in Nigeria within the context of the sociopolitical climate at the time. He talked of warring tribes, and how he was from one tribe but the other tribe dominated the country and wreaked havoc, including horrific violence, on the people.

He was a farmer but decided to flee Nigeria after being abused by members of the tribe in command. He had lived in the U.S. for a few years and wanted to stay, but his immigration status was being contested and he was risking deportation. He was worried about returning back to Nigeria, as he felt he received better healthcare in San Diego, which was one of the reasons he was referred to me.

His story was so fascinating and enlightening that I decided right then and there who I wanted to work with when I returned to the U.S.: refugees.

I had another refugee patient from Cuba who escaped to the U.S. in the early 1980s. As a doctor, the Castro's government demanded that he swear allegiance to the Communist party. But he refused. So he was thrown in jail and tortured for a long time until he managed to escape on a boat to Miami. He described his injuries, which sounded horrific and continued to cause him a lot of pain. I was treating him for diabetes, which was actually really frustrating experience even for an open-minded medical anthropologist, because he refused to take the insulin he desperately needed, instead choosing herbal liquid remedy he got from a botanica that only seemed to make him sicker. 


This patient was so pleased I knew about Cuban culture, and since I couldn't really get him to agree to comply to his recommended regimen, (doctors know best, right?), we would sit and talk about Cuban history and food and culture. At least I was the one provider he'd have a long conversation with, as with the others he just gave short answers. I felt privileged he trusted me enough to share his life story. One evening I made him a big batch of moros y cristianos (Cuban blacks beans and rice), for his appointment the next day, but he didn't show, and shortly after I left for Peru.

I had met another patient from Laos or Cambodia, I can't remember specifically, who was really impressed that I knew about his country's sociopolitical history (ha, that's not saying much that I can't remember two years later which country he was from!) and he was eager to talk to me about his country. All of these patients instinctively understood that their country's history and current events directly correlate to the state of their health. This is an awareness that I've never come across in any of my other immigrant or American patients. What I was able to figure out was that because they fled their country in a time of horrific turmoil, they had a story to share, and that story impacted everything about them, from their health to their living situation to their financial situation to their family relationships.

I was so impressed with their self- and cultural-awareness that I decided that working with refugees would be my next step when I returned to the U.S. San Diego, according to this SignOnSanDiego.com article, has over 150,000 refugees residing in the county, making it "one of the largest refugee centers in the country." I recall that a relatively large refugee community from East Africa reside in City Heights, which is a colorful low-income neighborhood not too far from downtown. I don't quite know what prevented me from checking into volunteering or working in clinics in City Heights. I suppose working with the homeless and low-income immigrants in the East Village and Logan Heights was challenge enough for me at the time.

Now that I have a date in mind, I'm going to start researching clinics and other agencies in City Heights and start reaching out to my contacts to find out what volunteer and/or work opportunities they have there. I would have only been gone a year, so I don't think I will be that behind and can quickly regain my just burgeoning status as a healthcare professional and medical anthropologist in San Diego.

Being seen as a professional is really a satisfying feeling, I have to admit. One of my students in an advanced class loves to talk to me about healthcare, including health policy, here in Peru as compared to ones in the U.S., and I really enjoy it. I haven't given health advice or discussed healthcare in many months, and it feels like far too long. It's really my passion, and if I know anything, this is what I'm really really good at.

In another class, a student and I were discussing the right to die as one of our business conversation topics. I was describing some of the technical aspects of life support and euthanasia, and my student was a little taken aback by how much I knew. But I was like, of course I know these things, I'm a healthcare professional. But how would she recognize me as that? I'm just an English teacher to her. I feel like the taxi drivers back in the U.S., you talk to them about their life back in their home countries, and they were doctors and electrical engineers and lawyers among so many other types of professionals. But there in the U.S., they made their way simply and humbly as a taxi driver. So I understand now how that feels.

One of the reasons I want to return to the U.S., besides wanting to work with refugees, is that I want to give of myself. I'm just not in a giving place here. I beat myself up over this sometimes, but then I have to remind myself: I work six days a week with one day off, three days of which are 12.5-hour days, and I barely have enough to live on each month. So no, no wonder I don't have any desire to give. I can barely take care of myself, which means I certainly don't have enough resources, like time or energy, to give to others. 

This wasn't really in my plan when I first arrived, because I really had planned all the time I was in San Diego preparing for this trip (and it was just supposed to be a trip at first), I was researching volunteer opportunities in Buenos Aires and Colombia. But arriving here while seriously ill with 6-8 weeks left to recover totally threw a wrench in my best laid plans. 

But that's life, yeah? Now I know what it's like to live paycheck to paycheck, to live off bread for a days at a time, to count literally cents to make it last for the rest of the week, to try to take care of my health with limited to resources, to shuffle from place to place to live, to have a small social support network, to live as an immigrant in a developing country. These experiences are only going to add to my abilities as a healthcare provider and anthropologist, and for that, I can only be grateful. Through struggling, we can learn so many life lessons and become better for it.

Tuesday, October 18, 2011

When the body fails

In my room on a better health day, better being relative...
I'm having a hard time right now.

My body's failing me, and I don't know what to do about it except just rest.

I've been struggling with my health since March when I got seriously ill with a flare (relapse) of my chronic liver disorder. It took me several weeks to recover, but I've never been entirely sure I've recovered completely.

I didn't take such great care of myself those last couple months in San Diego. Although I was overjoyed to move to Peru and was so incredibly in love, I was also very stressed and exhausted from tying up loose ends at work, selling all my things, and saying goodbye to my friends and family.

I really accomplished a lot in the 2.5 months I gave myself to get this all done. And that's great. But unfortunately, what I hadn't anticipated was just how my body would react when I pushed it to the limit.

It ended up falling apart on me in the most serious of ways. I spent two weeks straight in bed, only able to get out of bed for an hour or two at a time to get things done. I would make myself walk to the store or little juice place for food just so I could have something healthy and get out of the house. It took all my energy to walk those few blocks. Looking back now, I'm astonished I made it through as well as I did. Talk about willpower and blind dedication to one cause. I was determined to leave by the time I said I would, and come hell or high water, I did it. With help from my friends and family, of course. I would have never made it without their support.

And then my first month here in Lima, I pretty much slept the entire time. The boyfriend I moved to Lima to live with would call me from work to see how I was doing, and I would be sleeping. Maybe I'd have the energy to walk to Parque Kennedy to meet him after work, and we would walk around some more. But that would be it, and the next day I'd have to sleep even more. I was just so fatigued all the time, and when we would venture out, it took all I had to make it for a couple hours before fatigue would set in again. I so loved going to the beach with him because all we would do is sit and eat seafood and drink beer and talk and kiss, and it was such a lovely way to just do nothing together without taking too much of my energy. Those were lovely days.

I'm not really sure how I made it through that time, but I did, like I always do. I think some level of healthy denial has to happen or else I'd sink into a deep depression facing the true state of my health.

I've been struggling every since to get back to normal, but every couple weeks something comes up and I feel so tired and drained of energy. I know a lot has to do with transitioning living here. I think it would be difficult process for anyone, and I see how difficult it is for all my ex-pat friends, but I have to say with all honesty that having four chronic illnesses adds a whole other level of challenge.

And now my body is falling apart again, and all I can do is lay in bed and rest. My stomach (well, really, intestines, but that's not really sexy to admit, now is it?) has been upset for three weeks straight now, ever since I moved into my new apartment, actually. These days I have no energy.  I try to go out for a run but can only walk for a mile or two until I feel tired. I feel nauseous most of the day and can't eat very much. I want to eat fruits and vegetables, but I don't have much money and am so worried because I have little to live on for the rest of the month. I have to pay for my daily medication, which will take up a lot of the money I have left, leaving me with even less to pay for food.

Yesterday I spent several hours in bed, trying to rest, but my liver was so painfully swollen that it hurt to breathe as it pressed up against my ribcage. My friends are calling me to do things with them, but I keep canceling or not responding because I have such little energy and can't deal with the outside world right now.

I know a lot of this feeling ill has to be an accumulation of all the stresses over the past several months. And now they're all catching up with me, and my body's demanding that I just rest. Because that's literally all I can do.

I'm very fortunate that my boss only lives a few blocks away. She's promised to come over this morning to see how I'm doing and bring an anti-nausea pill. Thank goodness for good people who want to help. I really need to eat something healthy but I have no idea where to go or how much it would cost. There's a vegetarian restaurant a few blocks away, maybe they have a cheap salad or something. I hope so. The thought of just eating bread again for what feels like the 100th day in a row doesn't appeal to me in the least.

I used to imagine being sick in another country would be a horrible experience. I was really ill due to my liver disorder for a few days when I traveled to Europe for the first time back in 1997, and I spent at least one day in bed to the disappointment of my German friend who I was visiting. But I just couldn't do anything else but rest. But after crying a bit and resting a lot, I made it through and had a lovely experience the rest of the trip. 

Now that Lima is my home, being sick here feels just the same as being sick at home in the U.S. It's really no different. I have access to the same medications, which are actually much easier to get at the pharmacy here than in the U.S. I have a good job that allows some flexibility in taking days off, and I'm fortunate to have easy-going students who are okay with rescheduling classes when need be. I have a home I feel safe and comfortable in that's quiet most of the day. 

And I have lovely friends here who want to help me and check in with me, and that helps stave off the loneliness. I don't feel in despair, though I must admit depression is something I have to fight whenever I feel ill. It seems like a waste of time to give into depression when I know I have so much to enjoy living for, you know?

The first line on the first page / To the end of the last page / From the start in your own way / You just want somebody listening to what you say / It doesn't matter who you are
--Coldplay's "Square One"

I will get better. I just need to rest more. The (now ex-)boyfriend says it's the weather making me feel ill, and it's true, I do feel happier when the sun is out. But that's not really it. It's being here in Lima and trying to make my home in this new country. With four chronic illnesses. Yes, that would do it.

Here's to a better life...

 

Saturday, October 15, 2011

Epidemiology of Autoimmune Liver Diseases

A Proposal to Study Concurrent Autoimmune Diseases for Patient Education 

Background. Approximately 38 percent of people with an autoimmune liver disease have at least one other concurrent autoimmune disease, and research shows that the most prevalent concurrent autoimmune diseases are irritable bowel disease, Sjögren’s syndrome, thyroiditis, rheumatoid arthritis, Celiac disease, ulcerative colitis, and diabetes type 1. 

Objectives. Researchers of autoimmune liver disease epidemiology call for more rigorous studies to determine the prevalence of concurrent autoimmune diseases. Although narrowing down prevalence rates will help health care providers in the long run, patients still need education on the chances of developing a concurrent autoimmune disease, including possible warning signs of symptoms, to lessen the severity of the autoimmune disease by receiving treatment as soon as possible. And helping patients to recognize symptoms of concurrent autoimmune diseases may help determine prevalence rates.

Methods. Through a five-year three-phase epidemiological and anthropological study, the project team plans to develop the study protocol for the collaborative studies, implement the retrospective and prospective prevalence, incidence, risk factor and patient education studies, analyze the data and report the findings. Data collection instruments will include a modified version of the US National Health and Nutrition Examination Study (NHANES IV) questionnaire, and data analysis software includes SAS and Atlas.ti. 

Note: This is not a "real" research proposal in that I am not, at this time, submitting it to a funding agency. It is simply a school assignment for an Epidemiology of Chronic Disease class. The literature review, however, will be helpful as a resource for those of us with autoimmune liver disorders.

Papers
Jackie Donaldson-Lopez
2008 Epidemiology of Autoimmune Liver Diseases: A Proposal to Study Concurrent Autoimmune Diseases for Patient Education. College Park, MD: University of Maryland.

Profile of Prince George's County, Maryland

I compiled and analyzed data on Prince George's County, Maryland, including sociocultural demographics, education patterns, county government resources, health services, environmental issues, and crime and violence.


Papers
Jackie Donaldson-Lopez
2008 Profile of Prince George's County, Maryland. College Park, MD: University of Maryland.


---
2008 The Students of Prince George's County Maryland. Fact Sheet. College Park, MD: University of Maryland.


Freidenberg, Judith, Gail Thakur, Jackie Donaldson-Lopez, and Jenna Hall
2008 Perceived Inclusion of Contemporary Immigrants to Suburban U.S.: The Immigrant Life History Project. Paper presented at the Society for the Anthropology of North America/American Ethnological Society Conference, Wrightsville Beach, NC, April 3.

The Community Health Clinic Experience: How Staff Deal with Daily Pressures

When I began this qualitative methods project in Fall 2006, I anticipated being able to speak directly to patients in community health clinics to understand whether or not patients’ cultural beliefs and behaviors influenced their care and treatment. From the literature and from personal experience overhearing patient-provider exchanges in an emergency waiting room, I had a preconceived notion that Latina/o patients and their providers experienced challenges in communicating with each other. Despite several attempts to strike up conversations in community health clinics with the women waiting to be taken to exam rooms, I was only able to informally interview one teen-aged patient who has only visited a community health clinic once since emigrating to the U.S. a year ago. Instead, I focused on learning more about community health clinic staff experiences.

Observing and interviewing patients without an introduction or common ground proved challenging. Conversely, speaking with and observing community health clinic staff, especially at the Spanish Catholic Center in Langley Park, MD, proved an eye-opening experience. From discussions in semi-structured and formal interviews, staff members find working at a community health clinic to be challenging but immensely fulfilling. They consider themselves to be dedicated and caring people who, despite funding issues, lack of resources, and low salaries, provide quality health care and treatment for their community members who are uninsured and underserved. For most people I interviewed, working at a community health clinic fulfilled their personal mission. They felt they provided quality health care, although two providers, including a physician assistant and nurse disagreed. 

I’d like to conduct more semi-structured interviews with community health clinic staff. I have more questions about the challenges of working in and I’d like to learn more about working with and serving patients and their needs. And I’d like to observe patients in exam rooms and interview them about their health care experiences. Ultimately, I believe my research can be used to help develop “best practices" for community health educators. This is still very much a new idea for me, but one I plan on testing out through the next year and a half.

If I had the time and capability, or worked on a team project, I would be very interested in comparing the experience patients have in community health clinics and private practices or hospitals. I did get a taste of the differences two health professionals had in working at both levels, and from their discussion, it appeared as though the differences were striking, with quality of health care and treatment being a primary division, and funding and resources being contributing factors. Although ethnicity was not discussed, these two health professionals were white, middle-class educated women who do not live in the same community where they practiced at their community health clinics. I am interested in exploring this disparity more, as well as interviewing patients who have also had experiences in the community and private sectors.

Health Education Intervention for Latinas with Gestational Diabetes and Their Families

I developed a health education intervention for Latinas with gestational diabetes in a culturally-diverse, low income area of Prince George's County, MD. The intervention not only focused on education the women, but also involved their families to strengthen support for the women, as well as provide prevention education, since children of Latina gestational diabetics are 50 to 70 percent more likely to develop diabetes themselves.

Papers
Donaldson, Jackie
2007 Health Education Intervention for Latinas with Gestational Diabetes and Their Families in Langley Park, Prince George's County, MD. (Unpublished). Washington, DC: George Washington University.

The Anthropology of Health Education: Developing, Implementing, and Evaluating an Intervention

From 2006 to 2007, I developed, implemented, and evaluated a culturally-appropriate pilot health education intervention at a community health clinic for an ethnically diverse low-income population of Prince George's County, MD. My methods included identifying potential clients with indicators of high cholesterol, hypertension, and/or diabetes, developing curricula and offering both individual counseling sessions and group workshops.  

Through eliciting the clients’ explanatory models of their chronic diseases and their typical diet and physical activity behaviors, the individual counseling sessions and workshops aimed to improve participants’ dietary, physical activity, and cardiovascular and/or diabetes self-care behaviors.

A very small percentage of targeted clients attended the workshops, so the process evaluation aimed to assess clients’ actual and providers’ perceived barriers to accessing the workshops. Clients reported that structural barriers prevented them from attending, while providers reported that they perceived clients’ barriers as sociocultural.

The evaluation provides evidence supporting the continuation of the workshops, as well as several recommendations for removing barriers to accessing the workshops. 

Papers
Donaldson-Lopez, Jackie
2008 The Anthropology of Health: Developing, Implementing, and Evaluating a Culturally-Appropriate Health Education Intervention. Master of Applied Anthropology thesis, Department of Anthropology, University of Maryland. 
2008 Lack of Client-Provider Consensus as a Barrier to Accessing Health Care: Bibliographic Essay and Fieldwork Analysis. (Unpublished). College Park, MD: University of Maryland. 
---
2007 Evaluation Report on Barriers to Accessing Health Education Workshops: Client and Provider Perceptions. (Unpublished). College Park, MD: University of Maryland.
---
2007 Developing an Intervention at a Community Clinic: How Latinas View Their Gestational Diabetes Care and Treatment. (Unpublished). College Park, MD: University of Maryland.

My work on medical anthropology

Since I had to delete my website last year due to lack of funds, I thought maybe I should utilize this free blog service to share my research. It's so neat finding out how people have used my research. A friend of mine in nursing school just asked about my work on explanatory models, so I figured what better way to share than post here. 

And earlier this year someone from the University of Maryland contacted me about my research on Prince George's County, Maryland, sharing that she had cited my work but needed the research. I was in the midst of leaving my job so never got around to sending it to her, but maybe, if she still needs it, she'll find it here. I hope so. 

I really enjoy helping people! And reviewing my work will surely inspire me to get back to what I'm best at...being a medical anthropologist! 

Just do it!!