“Social Support Issues associated with the Diagnosis of TB and TB/HIV in Lima, Peru”
By Christy Dimos, MSW
Summer Field Research Grant 2009
The Stone Center for Latin American Studies
Abstract
Forty-three in-depth interviews of adult patients with TB and TB/HIV and parents of children with TB and TB/HIV were conducted in the southern region of Lima. The interviews were conducted in various public health facilities with TB programs to explore the type of social support received and to examine the role of social support in enabling health seeking and maintenance behaviors among TB and TB/HIV patients in Lima, Peru, with a particular focus on family, partners, friends, community and health providers. The majority of participants noted that families are most significant in providing social support, including both emotional and instrumental, during TB treatment but also noted the significance of having larger social networks available, including partners, friends, health providers and community members. Programs and policies aiming to enhance TB patient experiences and to increase patient adherence to treatment for more successful outcomes must increase TB and HIV education outreach and facilitate changes in program services. TB facilities must provide health provider trainings based on basic communication skills and patient-provider interactions and provide classes and/or support groups for families, partners and parents of children with TB.
Environment
The host organization, with whom I worked, was the Tulane University Health Office for Latin America. It is located in Lima, Peru. The mission statement notes the organization’s desire “to foster and promote collaborative public health research in Latin America between Tulane faculty and their Latin American research counterparts.” I worked directly with Valerie Paz-Soldan, PhD, MPH, Research Assistant Professor in the Department of International Health and Development at the Tulane School of Public Health and Tropical Medicine. The dates of the practicum were May 23-July 26, 2009.
The initial interviews, conducted by Peruvian investigators, took place in the southern region of the city of Lima, which is part of DISA-Sur (approx population of Lima is 8 million). All adult participants were recruited from several local health centers and health posts that are part of the DISA-Sur; most of these health centers and posts are located in the peri-urban neighborhoods of Villa Maria del Triunfo (approx population of 389,419), San Juan de Miraflores (approx pop of 351,628), San Martin de Porres (578,990) and Villa El Salvador (410,909). Parents of TB and TB/HIV patients were recruited from the Children’s Hospital in Lima.
Practicum Rationale
Worldwide, tuberculosis continues to be a significant public health concern. Even though programs, such as DOTS, have dramatically increased adherence to medication and successful treatment outcomes (Guerrero, M.H., 1999), elements of poverty, such as malnutrition, overcrowding, poor ventilation, unemployment, lack of access to healthcare and co-infection with HIV (Naidoo, P., et al., 2009; Marais, B.J., et al., 2009; Myers, W.P, et al., 2006; Marais, B.J., et al., 2005; Marais, B.J, 2008) prevent greater control of the disease in many developing countries.
Peru implemented the DOTS (Directly Observed Treatment) program in 1990, along with free medication for those in treatment and experienced significant results. MINSA (the Ministry of Health of Peru) noted that the rates of incidence and mortality decreased almost 10% and coverage of treatment was greater than 70% between the years of 1993 and 1997. However, the concern for continued control was heightened and continues to present challenges by the increase in HIV/AIDS cases and the risk of co-infection with TB, along with drug resistance and MDRTB (Guerrero, M.H., 1999;Farmer, P., 1999). The World Health Organization (WHO) states that Peru, in 2007, had the largest number of new smear-positive TB cases in South America per 100,000 population and the highest reported number of new and relapse cases of TB in South America per 100,000 people, over 30,000 cases in total(WHO website, 2009).
The multifaceted complexities involved in TB treatment and patient adherence to medication include numerous factors, such as poverty, access to healthcare, depression, stigma and social support (Chalco, K., et al., 2006; Marais, B.J., et al., 2009). Despite much evidence about the importance of social support in health-seeking behaviors, treatment adherence and health outcomes (Filazoghu, G. & Griva, K., 2008;Kricker A., et al., 2009; Matthews, E.E. & Cook, P.F., 2009), there are limited studies that examine the specific elements of social support that are helpful or not helpful to patients with TB and TB/HIV globally, and less so in Peru.
Several qualitative studies based in developing countries have demonstrated a positive association between the quality of care by health providers and support of family during TB treatment, resulting in increased adherence to TB medication and an improved quality of life for the patient (Chalco, K., et al., 2006; Sagbakken, M., et al., 2008; Demissie, M., 2003; Naidoo, P., et al., 2009; 12,21). The types of social support addressed in these studies emphasized the importance of consistent emotional support from health providers, the attitudes of health providers toward patients and consistency of supporting networks, including health providers, neighbors and family, throughout the duration of TB treatment (Chalco, K., et al., 2006; Sagbakken, M., et al., 2008; Naidoo, P., et al., 2009). Furthermore, although studies in both developing and developed countries have shown that social support can act as a buffer to stress for patients and help in their recovery, these interactions can also result in negative feelings of isolation and distance within relationships (Long, N.H., et al., 2001; Marra, C.A., et al., 2004).
The primary objectives of this study are to: 1) explore the type of social support that TB and TB/HIV patients experience, with a particular focus on family, partners, friends, community and health providers; 2) examine the role of social support in enabling health seeking and maintenance behaviors among TB and TB/HIV patients; and 3) explore, from the patients’ perspective, ways in which this support could be improved. These findings will provide specific direction with regards to specific interventions that could be implemented focusing on families and caregivers of TB and TB/HIV patients, which ultimately can assist in affording more successful treatment outcomes.
Goals and objectives:
Objective: Assess the social support that exists or does not exist for patients with TB and TB/HIV through the coding of data, interviews and observations.
1. Examine the interview data collected from 19 adults with TB and 8 adults with TB/HIV, 13 parents of children with TB and 3 parents of children with TB/HIV, with special focus on social support from health providers, family, friends and community.
-The tasks involved for this activity included learning how to use Atlas.ti, contacting the IRB and obtaining approval for coding the data, analyzing the data and coding the data using Atlas.ti (specifically focused on social support) and meeting once a week with Valerie Paz-Soldan.
2. Conduct five in-depth interviews with family members of patients and five interviews with health personnel working in the TB program.
-The tasks for this activity were to construct questions for the interviews with health providers and family members, obtain approval from IRB to interview, set up appointments with health providers and conduct in-depth interviews, ask TB and TB/HIV patients for permission to meet with family members, set up appointments with the family members, document data from the interviews, send the data to be transcribed and code the data using Atlas.ti.
3. Observations of shantytowns: Villa Maria del Triunfo, San Juan de Miraflores and Villa El Salvador
-The tasks included were to make informal visits to the shantytowns where the initial research was conducted, meet with community leaders to build relationships and visit homes to observe hygiene, access to clean water and healthy food and access to health clinics.
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Activities and outcomes:
I completed most of the first activity before leaving for Peru, after obtaining approval from the IRB at Tulane University. I learned how to use Atlas.ti and coded all of the data from the forty-three interviews. After arriving in Lima, I began to analyze the data in regard to social support. I specifically looked at support from families, partners, friends, health providers and communities.
I also successfully completed the third activity. I went on several visits to the peri-urban area in the southern region of Lima (San Juan de Miraflores), where the majority of the interviews had been conducted. During the first visit, I assisted a health worker from PRISMA, an organization working in public health research in the area, in order to get a better feel of the community, its environment and its people. We went door-to-door, which the health worker does on a specific schedule, to approximately forty families in the neighborhood. The health worker interviewed an adult from each participating family about the child’s health (who is under 3 years old and in the research study). From this experience, I observed the lifestyles of the families in the area, the overall environment of the area, the hygiene of the families, the types of illnesses that exist within the community and the different structures of the homes.
The community began as a shantytown approximately twenty years ago. The evolution of the town is apparent in the structures of the homes and development of the area. For example, the area of the community closer to the center of Lima was more developed, including brick homes, electronic stores, concrete buildings for schools and daycares, whereas the areas further up the mountains, were less developed with basic structures as homes, made of tin and cardboard. The homes closer to the top of the mountain had just recently received water.
I returned to the community several more times and attended various health facilities. First, I went to the hospital Maria Auxiliadora, which is where many of the participants had initially been diagnosed with TB. There, I informally interviewed several professionals. The head nurse in the TB program spoke with me about the TB program and emotional support provided by the nurses. I also interviewed one of the principal doctors who treats TB patients. These patients come to the hospital because they have additional problems that involve hospital care. She commented on her main concern with hospital policies, which allows the TB patients to wait for care with all other patients, possibly exposing numerous people with weakened immune systems to TB.
I then visited a local clinic, where TB patients, after being diagnosed, get their medication daily. This size clinic is called a “posta.” It is the smallest form of healthcare facilities in the country. The nurse there talked with me about the current number of patients in the program and some of the problems that the patients face regarding barriers to successful treatment, such as alcohol and drug use. Additionally, I visited the next level of health clinic, called “el centro de salud.” This size clinic had more health personnel, more specialized doctors, more equipment and a larger facility, in comparison with the smaller clinics.
Finally, I visited a children’s hospital, where many of the parents of children with TB and TB/HIV had been interviewed,“Hospital Materna Infantil” en Villa Maria de Triunfo. This facility allowed me to see where patients take their medication. I could see that there was little to no privacy. The patients sat in a chair, behind a small curtain that did not completely close them off from view. Anyone that entered the large room could see who was taking their medication. Several participants in the study expressed concern in the lack of confidentiality in the facilities, such as this, as part of the problem in beginning or continuing medication. Many people fear that someone they know will see them and realize that they have TB.
Additionally, I was able to assist another researcher on her project. She is a recent graduate of San Diego State with her MPH and was also working with Valerie, but on the topic of knowledge and attitudes of women regarding cervical cancer in Chincha, Peru. I traveled with her to Chincha, an area South from Lima, and worked with her there for three days. I helped to recruit participants for five focus groups. I took notes during the groups for the researcher, along with a Peruvian psychologist. A Peruvian doctor facilitated the focus groups. This was an excellent learning experience in qualitative research.
Conclusion:
The positive aspects of my experience far outweigh the negative ones. I was able to meet with professionals, both in TB work and in other areas of public health. I met the majority of my goals and learned new skills that will benefit me tremendously in a future career in public health. I was also able to learn about the Peruvian culture, experience several areas of the country and live with two amazing Peruvian women. We often discussed Peruvian politics, the Shining Path’s terror on the country over the years and the recent indigenous’ fights for their land from the oil industry/government. The few negative aspects of my experience include the limited amount of time in Peru and not completely finishing the formal research paper during my time in Peru.
I learned a tremendous amount about qualitative research, learning how to use Atlas.ti and understanding the details of the process involved in such a project. As a bonus, I found myself assisting another professional in her qualitative research and learning how to recruit for a study and then observing a focus group. I was able to utilize my Spanish in the public health field, analyzing interviews, conducting informal interviews with health professionals regarding TB programs and observing the life conditions of those who participated in the study. I was disappointed in not being able to conduct formal interviews with family members of the participants and health providers; however, I feel it is an essential piece of the learning process in doing qualitative research. I am very satisfied in what I accomplished during my time in Peru.
I want to especially thank the Stone Center for giving me the opportunity for such a research experience and Valerie Paz-Soldan, for her time, wisdom and guidance in the research paper. I also want to thank the professionals of Peru, who met with me, who guided me through the clinics, neighborhoods and communities and who connected me with various contacts in the field.
REFERENCES
Chalco, K., Wu, D.Y., Mestanza, L., Muñoz, M., Llaro, K., Guerra D., Palacios, E., Furin, J.,
Shin, S. & Sapag, R. (2006). Nurses as providers of emotional support to patients with MDR-TB. International Nursing Review, 53, 253-260.
Demissie, M., Getahun, H. & Lindtjorn, B. (2003). Community tuberculosis care through "TB
clubs" in rural North Ethiopia. Social Science & Medicine, 56, 2009-2018.
Farmer, P. (1999). Infections and Inequalities. Berkley: University of CA Press.
Filazoghu, G. & Griva, K. (2008, October). Coping and social support and health related quality
of life in women with breast cancer in Turkey. Psychol Health Med., 13 (5), 559-73.
Guerrero, M.H. (1999). Evolución de la tuberculosis en el Perú. Revista de la Facultad de
MedicinaHumana de la Universidad Ricardo Palma, 1 (1), 17-19.
Kricker A., Price M., Butow P., Gomas C., Armes J.E. & Armstrong, B.K.(2009, May). Effects
of life event stress and social support on the odds of a >/=2 cm breast cancer. Cancer Causes Control, 20 (4), 437-47.
Long, N.H., Johansson, E., Diwan, V.K., & Winkvist, A. (2001). Fear and isolation as
consequences of tuberculosis in Vietnam: a gender analysis. Health Policy, 58, 69-81.
Marais, B.J., Esser, M., Goodwin, S., Rabie, H. & Cotton, M.F. (2008). Poverty and human
immunodeficiency virus in children; a view from the Western Cape, South Africa. Ann NY Academic Sci., 1136, 21-27.
Marais, B.J., Hessling, A.C., Cotton, M.F. (2009, April.). Poverty and tuberculosis: is it truly a
simple inverse linear correlation?European Respiratory Journal, 33, (4), 943-944.
Marais, B.J., Obihara, C.C., Waren, R.W., Schaaff, H.S., Gie, R.P. & Donald, P.R. (2005). The
burden of childhood tuberculosis; a public health perspective. International J Tuberculosis & LungDisease, 9, 1305-1313.
Marra, C.A., Marra, F., Cox, V.C., Palepu, A. & Fitzgerald, M. (2004, October20). Factors
influencing quality of life in patients with active tuberculosis. Health & Quality of Life Outcomes, 2, 58.
Matthews, E.E. & Cook, P.F. (2009, July). Relationships among optimism, well-being, self-
transcendence, coping and social support in women during treatment for breast
cancer. Pscyhooncology, 18 (7), 716-26.
Myers, W.P., Westenhouse, J.L., Flood, J. & Riley, L.W. (2006, April). An ecological study of
tuberculosis transmission in California. American Journal of Public Health, 96 (4), 685-690.
Naidoo, P., Dick, J., & Cooper, D. (2009, January). Exploring tuberculosis patients' adherence
to treatment regimens & prevention programs at a public health site. Qualitative Health Research, 19, (1), 55-77.
Sagbakken, M., Frich, J.C. & Bjune, G. (2008). Barriers and enablers in the management of
tuberculosis treatment in Addis Ababa, Ethiopia: a qualitative study. BMC Public Health, 8 (11).
Sumartojo, E. (1993). When tuberculosis treatment fails: a social behavioral account of patient
adherence. American Review of Respiratory Disease, 147, 1311-20.
World Health Organization. Global Tuberculosis Database. Retrieved July 12, 2009, from the
World Health Organization’s website: