PEAH is pleased to cross-post an article by AFEW partner organization. AFEW is dedicated to improving the health of key populations in society. With a focus on Eastern Europe and Central Asia, AFEW strives to promote health and increase access to prevention, treatment and care for major public health concerns such as HIV, TB, viral hepatitis, and sexual and reproductive health

First published September 4th, 2019 

By Olga Shelevakho

Communications officer, AFEW International

The Disease Bringing People Together

 

People affected with tuberculosis desperately need support and understanding of the society during this difficult period of their lives. However, often they are left alone with their problem, which leads to low adherence to treatment and high dropout rates.

Roza Idrisova, Director of the first and only patient organization in Kazakhstan, protecting the rights and interests of people affected with tuberculosis – Sanat Alemi – admits that her motivation to work in this sphere was a strong desire to improve the quality of life for people with tuberculosis while they are on treatment. In 2016, it started implementing the project “Improving TB/HIV Prevention & Care – Building Models for the Future”, which became possible thanks to the support of AFEW Kazakhstan.

When a person faces a serious disease, it may seem that the whole world is ruined. How is it possible not to break down in such a situation?

Yes, really, when people hear about their diagnosis for the first time, they are terrified and scared for their own health and the health of their loved ones. At this moment, it is very important to give such person more information about TB, explain that this disease is curable. It is also crucial to give him or her a chance to talk to people who survived TB. The fact is that lack of knowledge causes fear and fear of TB leads to stigma – and that is the main thing we need to fight to end tuberculosis. We aim a lot of our efforts at countering this problem. All our activities contribute to reduced stigma and increased adherence to treatment, better awareness of TB in society, etc. We were the first to organize support groups for patients with TB. Besides, a patient council with five members was founded. Patients are the ones who identify and approve the lists of those in difficult circumstances who most need social benefits offered by the project we currently implement. When patients take part in support groups, they want to not only solve their own issues but also help others. Communication is the biggest component of such support groups. It is vital for the participants to be heard, to share their experience, thoughts and emotions and help other members of the group to deal with their issues and find ways to resolve them. Support groups are aimed at the participants understanding and protecting their rights and interests, attracting the attention of society and government agencies to their issue and fighting for the changes in public opinion and state policies.

What is the most memorable story from your practice?

As an example, I would like to tell about one of our patients. Marzhan Seytimova, 40 years old, mother of three, working in health care area not related to TB. When she learned about her diagnosis, she was shocked and felt panicked, as she was afraid for the health of her children and husband. Fortunately, they were healthy. However, she had a strong self-stigma. Children treated her diagnosis with understanding, but the story with her husband was different. She faced a lot of misunderstanding and aggression from the side of her husband, who refused to understand and accept her with this diagnosis. When Marzhan’s doctor insisted that she came to our organization, she was very frustrated, depressed and had suicidal thoughts. After counselling sessions, she totally changed. She was interested in life again and felt positive about her treatment and cure. The most important thing was working with her husband. We managed to change his attitude to his wife. Today Marzhan is healthy, she continues to work and lives happily with her children and husband who love her. She is doing great!

Disease brings people together – is it true?

I agree with you, it really does. For instance, I would like to tell you a story of our patient, who told us how he was able to find true friends thanks to his disease. When he was 22, he was diagnosed with infiltrative tuberculosis of the superior lobe of his right lung. Once his fellow students learned about his disease, they limited their communication with him. While in hospital, he met other young people with the same diagnoses. They supported each other and met in the evening to sing songs and tell funny stories. After he was released from hospital, they continued their interaction, initiated a messenger chat and started doing sports together – they grew to become a real family.

How can we persuade the society to be more tolerant towards people with severe diseases?

This task requires a lot of effort to raise the awareness. All government and non-government stakeholders involved in TB response should conduct awareness-raising activities. For instance, contests can be initiated for the journalists to publish articles dedicated to the topic of TB. Such publications should be aimed at reducing social stigma against people with tuberculosis, fighting false stereotypes and discrimination, and forming tolerance in the society towards people affected with TB. There should be videos in mass media to inform people that tuberculosis is curable and that there is no need to be panicked about it and to call people to be tolerant to those who got sick. We do a lot in this area: our patients take part in press conferences, make videos demonstrating their own successes in fighting this disease, give interviews with open faces, etc. Every year, patients from support groups hold various campaigns dedicated to the World TB Day. In 2016, a flash mob was organized in Almaty by the patients from support groups. In 2017, we held a charitable fair “Let’s Help” to sell the things hand made by patients. In 2019, within the month dedicated to the World TB Day, Sanat Alemi organized a campaign to raise the awareness about tuberculosis “Healthy Individual – Healthy Society” in Almaty public transport. Over 800 leaflets with information on TB were distributed among the passengers. When we initiated this campaign, we could not even imagine that people in public transport would be so active and that this event turns out so great.

Health Breaking News Links, as part of the research project PEAH (Policies for Equitable Access to Health), aim to focus on the latest challenges by trade and governments rules to equitable access to health in resource-limited settings

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Health Breaking News Links, as part of the research project PEAH (Policies for Equitable Access to Health), aim to focus on the latest challenges by trade and governments rules to equitable access to health in resource-limited settings

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There are discrepancies, on all levels, between official laws and policies and what occurs in practice in Turkey. Privatization of primary care, fee for Family Planning services have a negative impact on availability and accessibility of these services. Decreased Family Planning usage will increase unwanted pregnancies at a time when the lack of access to safe abortion services leads to unsafe abortions. Actually, while induced abortion continues to be a right protected by Law, legality does not guarantee access to safe abortion services, particularly in a climate where the most prominent politician’s discourse and rhetoric is accepted as law

By Feride Aksu Tanık M.D. Professor of Public Health 

Volunteer of Human Rights Foundation of Turkey, President of International Association for Health Policies in Europe, Consultant of Social and Medical Affairs Committee of World Medical Association                     

Debates of Reproductive Health in Turkey

 

Brief History of Population Policies and Reproductive Rights in Turkey

 

Pronatalist Approach

Turkey had a pronatalist policy starting from the establishment of the Republic, till 1965. In 1959 Dr. Fişek conducted a research on 137 villages and determined high rates of infant (165 per thousand live births) and maternal mortalities (280 per 100 thousand live births). The 53% of the maternal deaths were due to unwanted pregnancies and abortions that performed in unhealthy conditions (Akın, 2007). There were approximately 500 thousand abortions every year and nearly 10 thousand maternal deaths were occurring due to complications (Fişek, 1998). In 1963 the first Demographic Health Survey was conducted and found that only 27% of the families were using family planning methods, among them usage of modern contraceptives was only 5% (Figure 1).

First Antinatalist Regulation

In 1965 although there were opponents, first antinatalist law was passed from the Parliament. With that law, reversible contraceptive methods became available but induced abortion as well as the surgical sterilization methods became only possible when a medical indication occurred. There was unmet need in access to contraceptive methods and in 1981 number of induced abortions was 300 thousand, among them 50 thousand were self-induced abortions (Akın Dervişoğlu, 1987).

In 1980’s a series of health service researches have been carried out. There were several components of these researches in connection with the aims:

• Training of nurses and midwives for IUD insertion in order to decrease unmet need in contraceptive use.
• Legalization of induced abortions.
• Training of general practitioners on Karman Aspiration in order to increase the number of physicians who can perform induced abortions.

Legalization of Induced Abortion

In 1983 a new antinatalist law was passed from the Parliament in which induced abortion is legal through to the 10^th week of pregnancy on social and economic grounds, authorization of trained and certificated GP’s in performing induced abortion, authorization of nurses and midwives in insertion of IUD’s and legalization of surgical sterilization in men and women. The significant increase of maternal mortality in 1970’s and early 1980’s was the basis for the introduction of Law, which has since had tremendous success in drastically reducing maternal deaths (Akın, 2012). Legalization of induced abortion had a striking impact on elimination of maternal mortalities due to unsafe self-induced abortions. Contraceptive methods became available and accessible through primary health care centers. Family Planning services were free of charge in health centers.

Neoliberalism Emerging

In 2002 the current neoliberal and conservative government was elected. Neoliberalism has resulted in the commodification, marketization, and commercialization of health care, and the liquidation of public health services (Telli, Cesuroğlu, Aksu Tanık; 2019). In the field of reproductive health, one of the most critical initial change has been the introduction of user fees in family planning services, which were previously free of charge. In addition to this, transition from health centers to family medicine system destroyed the team approach in primary health care. The authorized nurses and midwives lost the ground of their work, Mother and Child Health Care Centers closed down.

Conservatism

Since its legalization in 1983, abortion had not been a serious political issue (Telli, Cesuroğlu, Aksu Tanık; 2019).

In 2007 a conservative discourse surrounding family planning services emerged. In 2008 at International Women’s Day the prime minister made a speech, claiming that families should have “at least three children in order to protect the young population structure” in Turkey (Steinvorth, 2012). This was one of the preliminary signs of the conservative rhetoric in relation to fertility.

In 2012, the prime minister made clear statements favoring pronatalism. He claimed, “every abortion is a murder” representing “a sly plan to wipe this nation off the global stage” (Radikal, 2012). With this statement an anti-abortion rhetoric emerged. Then different high-level representatives of the establishment made statements. One of them was the head of Human Rights Investigation Commission of the Parliament. He stated that abortion is a crime against humanity. Even in a situation of rape, if mother does not want to take care the baby, state can do. Also the Minister of Health made a similar statement in relation to rape. Head of Religious Affairs said that induced abortion is a murder.

At the same span of time another problem occurred; when a pregnancy test is done the result was first sent to the family physician without the woman’s consent. And the result is shared with the husband or with the father of unmarried young woman by the state. This creates ethical problems and has criminal results, such as violence against the pregnant woman, especially if the woman was not married.

Conservatism has manifested in a neo-pronatalist discourse that targets women’s freedom, including their right to access safe abortion services. The discourse used by the president and other prominent politicians, portraying abortion as “murder,” “insensitive,” and “immoral,” cultivates objections to abortion on religious and moral grounds. This leaves women who want to seek abortion services feeling guilty, creating the perception that they are doing something wrong or sinful (Telli, Cesuroğlu, Aksu Tanık; 2019). Ethical debates on abortion became a hot topic on public agenda. In fact reproductive rights should be the main justification, and women should be allowed to exercise these rights by having appropriate healthcare services (Civaner, 2012).

Visualization of the Situation with Selected Data [1]

 

Family Planning Services

Figure 1 displays the usage of Family Planning methods by years in Turkey.

Figure 1 Usage of Family Planning methods by years in Turkey 

As it is shown the usage of modern methods increased while the usage of traditional methods slightly decreased. The non-users decreased dramatically between 1963 and 1983, then gradually, but still the 26,5% of the married couples do not use any contraceptive methods.

The unmet need of Family Planning services by years is given at Figure 2. As it is shown, in 1993 the unmet need was 15%, it decreased to 6% in 2013 (TDHS, 2013).

Figure 2 The Unmet Need of Family Planning Services by Years 

Figure 3 displays the data of total Family Planning users (modern + traditional methods) as % of married couples and Induced Abortions per 100 Pregnancies by years in Turkey.

Figure 3 Total Family Planning Users and Induced Abortions per 100 Pregnancies by Years in Turkey

As it is shown in Figure 3, following the 1965 and 1983 regulations the usage of Family Planning methods increased up to 73,4% of married couples in 2013. On the other hand following the legalization of induced abortion in 1983 an initial increase occurred reflecting the increase of demand. Then a gradual decrease observed. Since Family Planning services became available and accessible induced abortion started to decrease indicating that induced abortion has not been used as a contraceptive method. Induced Abortions decreased to 4,7% of the pregnancies in 2013.

Attempt to Ban Induced Abortion

A draft law was prepared in 2012 in order to reduce the legal time limit of Induced Abortion to four weeks and banning abortion completely. Feminists and women’s rights groups protested this attempt strongly. Turkish Medical Association (TMA) stated that banning abortion would lead to illegal abortions and an increase in maternal mortality (TMA, 2013). Then the government withdraws the proposed law.

In 2014 the impact of the government’s pronatalist policies was also reflected in a United Nations Population Fund (UNFPA) report.

. . . the pronatalistic view and statements of the current government and increasing conservatism among the public policy and decision makers put additional stress on continuity of sexual and reproductive health services (RHS) and creates a challenging environment for UNFPA to implement its activities (UNFPA, 2014).

Collaboration of Neoliberalism and Conservatism

Although no legal changes were made, some public hospitals started not to provide abortion services. The number of the public hospitals that provide safe abortion services diminished. Among 431 state hospitals interviewed, only 7,8% were providing induced abortion service where 78% provided only in situation of medical necessities. 11,8% of the state hospitals declared that they do not provide induced abortion service (O’Neil et all, 2016). In 53 out of 81 provinces there is not any state hospital that provides safe abortion services (O’Neil et all, 2016).

It appeared that public insurance was no longer covering induced abortion. In Turkey, the rationing of health care has been determined through the burden of disease surveys conducted, which manifested in the Health Implementation Guide (Sağlık Uygulama Tebliği), a version of the minimum health package. Every so often, the Social Security Institution updates the Health Implementation Guide and determines which procedures, medications, and interventions the Social Security Institution will cover. Consequently, this has a key role in determining which services physicians offer. Services provided by hospitals, need to comply with the stipulations of Health Implementation Guide (Aksu Tanık, 2018). Services included in Health Implementation Guide are attributed a code. Critically, without any prior warning, the medical curettage code for induced abortion was removed from the online registration and payment system in public hospitals (Telli, Cesuroğlu, Aksu Tanık 2019). This disabled doctors from offering induced abortion, because it no longer appeared as an available procedure let alone one covered by the insurance system, preventing doctors from fulfilling their professional duties (Francome, 2016).

Induced Abortion demand is headed to private clinics and hospitals. The lack of coverage of abortion services through the Social Security Institution and the exorbitant costs of induced abortion in the private sector mean that women from a certain socioeconomic background are excluded from accessing the service in the private sector. Taking into consideration the diminishing provision of induced abortion in the public sector, this will have the greatest negative impact on socioeconomically disadvantaged women’s access to safe abortion services (Telli, Cesuroğlu, Aksu Tanık 2019).

Conclusive Remarks

There are discrepancies, on all levels, between official laws and policies and what occurs in practice. Therefore, while induced abortion continues to be a right protected by Law, legality does not guarantee access to safe abortion services, particularly in a climate where the most prominent politician’s discourse and rhetoric is accepted as law (Telli, Cesuroğlu, Aksu Tanık 2019).

Demographic Health Surveys are the main reliable source of information on reproductive health issues. There is not any preliminary information about the last Demographic Health Survey, which should be carried out in 2018. Normally in the first half of the following year at least preliminary results should be publicized. But as of August 2019 the results have not been published. When 2018 Demographic Health Survey’s report is published we will more precisely be able to evaluate the impact of neoliberal and conservative policies on women’s health.

Privatization of primary care, fee for Family Planning services has a negative impact on availability and accessibility of these services. Decreased Family Planning usage will increase unwanted pregnancies, lack of access to safe abortion services leads to unsafe abortions. The most severe consequence of unsafe abortion is maternal death. It should not be forgotten that this was the reality in Turkey prior to the legalization of abortion in 1983, where women would seek back-alley abortions or attempt to terminate the pregnancy themselves using clandestine methods. According to the data gathered from Ministry of Health in 2016, 6% of maternal deaths occurred following an abortion (Karabacak, 2016). This data might be the first alarming sign of maternal mortality due to unwanted pregnancies.

Turkey has a very impressive history of improvement of reproductive health services; it is not acceptable to go backwards at the expense of women’s lives.

References

Akın Dervişoğlu, A. (1987) Türkiye’de anne ölümleri. Toplum ve Hekim, 42 (6/B): 5-15.

Akın, A. (2007) Emergence of the Family Planning Program in Turkey, The Global Family Planning Revolution, Three Decades of Population Policies and Programs in W C. Robinson and] A. Ross (Eds.), The World Bank, Washington DC: 85-102.

Akın A. (2012) Future perspectives on induced abortion and reproductive health services in 
light of the changing population and health policies in Turkey. Turk J Public Health. 10 (1):43–60.

Aksu Tanık F. (2018) Chapter 3: Temel Teminat Paketinden Sağlık Uygulama Tebliğine Sağlık Güvencesinin Tahribatı. In: Karadoğan E, Yaşar GY, Dertli N, Millioğulları Kaya Ö, Kablay S & Akpınar T, eds. Gürhan Fişek’in İzinde Ortak Emek ve Ortak Eylem. Siyasal Kitabevi; 323–348.

Civaner M (2012) Gebeliğin İsteğe Bağlı Sonlandırılması ve “Vicdani Ret” Toplum ve Hekim, 27 (6): 418-421.

Fişek, N. (1998) Türkiye’de doğurganlık, çocuk düşürme ve gebeliği önleyici yöntem kullanma arasındaki ilişkiler

Francome C. Asia. (2016) In: C Francome, ed. Unsafe Abortion and Women’s Health: Change and Liberalisation. New York, NY: Routledge; 86–88.

Letsch C. (2015) Istanbul hospitals refuse abortions as government’s attitude hardens. The Guardian. https://www.theguardian.com/world/2015/feb/04/istanbul-hospitals-refuse-abortions-government-attitude.

Mor Çatı Kadın Sığınağı Vakfı. (2015) Kürtaj yapıyor musunuz? “Hayır yapmıyoruz!” https://www.morcati.org.tr/tr/ana-sayfa/290-kurtaj-yapiyor-musunuz-hayir-yapmiyoruz. Accessed May 27, 2019.

International Women’s Health Coalition. (2015) Access to abortion in Turkey: no laughing 
matter. https://iwhc.org/2015/02/access-abortion-turkey-no-laughing-matter/. Accessed May 27, 2019.

Mıhçıokur S, Akın A, Doğan BG, Özvarış SB (2015) The unmet need for safe abortion in Turkey: a role for medical abortion and training of medical students. Reprod Health Matters.  44: 26–35. (2016)

Karabacak, Y (2016) Anne Ölümleri İzleme Programı, https://www.tuseb.gov.tr/enstitu/tacese/yuklemeler/ekitap/anne_olumleri_izleme_programi.pdf

O’Neil, ML, Aldanmaz, B, Quirant Quiles, RM, Kılınç, FR (2016) Yasal Ancak Ulaşılabilir Değil: Türkiye’deki Devlet Hastanelerinde Kürtaj Hizmetleri, Kadir Has Üniversitesi.

Radikal (2012) Başbakan: her kürtaj bir Uludere’dir. Radikal. http://www.radikal.com.tr/ turkiye/basbakan-her-kurtaj-bir-uluderedir-1089235/ Accessed May 27, 2019.

Steinvorth, D. (2012) Turkish Prime Minister Assaults Women’s Rights. Spiegel. https://www.spiegel.de/international/europe/turkish-prime-minister-erdogan-targets-women-s-rights-a-839568.html

Turkey Demographic and Health Surveys (1963-2013)

Turkish Medical Association. Kadınların sağlıklı ve güvenli koşullarda kürtaj hakları kısıtlanamaz; karar kadınlarındır. https://ttb.org.tr/haberarsiv_goster.php?Guid=6702500c-9232-11e7-b66d-1540034f819c&1534-D83A_1933715A=227f04f9eb83322bd9734332b1be2ed579778de2. Published 2013. Accessed May 27, 2019.

United Nations Population Fund. (2014) Independent country program evaluation annexes Turkey. https://www.unfpa.org/admin-resource/turkey-country-programme-evaluation Accessed May 27, 2019.

 

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[1] Data collected by Turkish Demographic and Health Surveys, which are carried out every five years.

 

Stigma and discrimination related to HIV status are the major barriers for people living with HIV (PLWH) to access prevention, care and support services. The first step in overcoming stigma is to break the wall of silence. Approval of regulations at the country level is a real victory. One year ago, the National Plan to Fight Stigma and Discrimination against People Living with HIV was approved in Kazakhstan

By Marina Maximova

 Regional communications specialist of the Central Asian Association of People Living with HIV. Press secretary of the Kazakh Scientific Center of Dermatology and Infectious Diseases of the Ministry of Health of the Republic of Kazakhstan

Olga Shelevakho

Communications officer, AFEW International

 Stigma Affects the Motivation for HIV Testing

  

First published 17th July 2018. Updated 13th August 2019 as part of AFEW’s Mission. AFEW is dedicated to improving the health of key populations in society. With a focus on Eastern Europe and Central Asia, AFEW strives to promote health and increase access to prevention, treatment and care for major public health concerns such as HIV, TB, viral hepatitis, and sexual and reproductive health.

 

As estimated by UNAIDS, 35 million people globally died of AIDS-associated diseases since the onset of the epidemic. People living with HIV die of tuberculosis, cancers, hepatitis… Meanwhile, there is no data on how many lives are lost to stigma. Today stigma is the strongest barrier for testing among those who are not aware of their status and for receiving services among people living with HIV (PLWH).

Migrant with HIV – double stigma

Salavat Kabjalelov is an outreach worker and a peer consultant in the Zabota (‘Care’) Charitable Foundation (Almaty, Kazakhstan). He helps labour migrants: offers consultations on HIV, tells about the need to get tested, navigates clients for diagnostics to the AIDS Centre and to the tuberculosis clinic. Salavat can find the right words for every client. He used to be a migrant as well. He had no citizenship or registration, no access to antiretroviral treatment (ART) and he wanted to hide not only from his problems but also from hostile stares and rough remarks of people around him.

He and his wife lived a quiet life, not seeking medical care. For migrants, the main thing is their job, not their health. Then, 4 years ago something tragic happened. Salavat lost his wife. The young woman died of cancer.

“I tried to arrange hospice care for my wife. I was even ready to pay for it, but it was not possible. They refused me. She was living with HIV. It appeared that it was more important to be a citizen. If you had a severe disease, it was not an argument. The good news is that now the situation in Kazakhstan is improving and migrants with HIV are provided with ART. However, it will not bring my wife back,” complains Salavat.

Everyone goes through self-stigma

Lyubov Vorontzova works in the Kazakhstan Union of People Living with HIV and Central Asia Association of People Living with HIV. She is a delicate woman of strong character, who can convince people both from the tribunes of international forums and in one-on-one arguments. Thirteen years of living with HIV made her a leader. She experienced stigma in a private health centre where she came when she got pregnant – young and confused. An older woman gave her an advice – to seek health services only in the AIDS Centre. However, Lyubov says that her self-stigma was even stronger. Every person who learns about having HIV faces this problem.

“I no longer consider myself a victim as it makes it impossible for me to live and grow. Good support in fighting self-stigma is trusting people and knowing your rights. You have to live on, not restricting yourself, and overcome your fears. Otherwise, you may reach the worst point,” says Lyubov.

Lyubov does not hide her status. Vice versa, she often takes part in TV shows and open discussions as an expert. She is convinced that stigma affects the motivation for HIV testing. People are afraid to get tested for HIV as they are worried that their test may come back positive. At the same time, if a person living with HIV starts the therapy too late, the probability of treatment success is much lower and it can even lead to death of the patient.

Every tenth person living with HIV had suicidal thoughts

Four years ago, the Central Asian Association of People Living with HIV within the Leader of People Living with HIV Project funded by USAID for the first time in the region carried out a survey to assess the index of stigma in three Central Asian countries – Kazakhstan, Kyrgyzstan and Tajikistan.

Results of the study in Kazakhstan showed that every tenth person living with HIV had suicidal thoughts. PLWH aged 30 and above suffer most from self-stigma as well as people with small (one to nine years) history of living with HIV. Self-discrimination mainly leads to the decision not to have any more children. Every third person living with HIV in the country makes such a decision.

The study demonstrated that the experience of injecting drug use as well as the experience of imprisonment were the drivers of stigma towards people living with HIV. Most often, PLWH faced discrimination from the side of health workers (first of all, refusal to provide health care) and public officials, while discrimination from the side of their immediate social environment was far less common. Moreover, the cases of discrimination were accumulated in the first ten years of a person living with HIV.

Has the situation changed today? The Central Asian Association of PLWH plans to make a new research soon.

No silence about stigma

The first step in overcoming stigma is to break the wall of silence. Approval of regulations at the country level is a real victory. One year ago, the National Plan to Fight Stigma and Discrimination against People Living with HIV was approved in Kazakhstan.

“Stigma and discrimination related to HIV status are the major barriers for PLWH to access prevention, care and support services. To end the spread of HIV, a focus should be made on the complete eradication of discrimination, first of all in health institutions. It will allow achieving a significant reduction in the growth of HIV epidemic,” says Baurzhan Bayserkin, Director of the Kazakh Scientific Center of Dermatology and Infectious Diseases of the Ministry of Health of the Republic of Kazakhstan.

Health Breaking News Links, as part of the research project PEAH (Policies for Equitable Access to Health), aim to focus on the latest challenges by trade and governments rules to equitable access to health in resource-limited settings

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Some thoughts here how deep-rooted familism behavior can impact on health care decision-making in Latinx culture

By Karen Mancera Cuevas MS, MPH, CHES

Associate Director, Research Projects at Northwestern University, Feinberg School of Medicine, Chicago USA

 

The Role of Familism in Latinx Communities and Impact on Health Care Decision-Making

 

Familism is one of the central elements of Latinx culture and has been argued to be one of the most important factors impacting health care decision-making in Latino families (Penwell & Larkin, 2010). The term familism describes kinship relationships inclusive of immediate and extensive family members such as grandparents, aunts, uncles and others such as close friends, neighbors and fellow church members (Galanti, 2003). Many of these individuals within the familism extended network are relied upon particularly in periods of emotional turmoil that includes interconnections beyond the single household structure (Katiria Perez & Cruess, 2014). Authors such as Keefe (1984), explain that familism is the desire to visit, share meals and converse on aspects of daily life. In more recent time, it has been further expanded to define that familism is the belief that relatives are role models and that adherence to familism produces reduction of intra-family conflict (Rodriguez, et al., 2007).

The relationship with how Latinx individuals relate to familism constructs have direct and indirect effects on quality of life, symptom management and distress (Urizar & Sears, 2006; Segerstrom & Miller, 2004). Additionally, protective behaviors such as familial support determines better disease management behaviors (Hsin et al., 2010). Negative effects of familism can include a sense of forced compliance to adopt unhealthy dietary patterns (Adams, 2003) or following certain demands with public behavior (i.e. withholding of HIV positive status) because of fear of alienation with immediate family and community (Roldan, 2007). Positive aspects of familism have been reported with breast cancer where relatives serve as caregivers and encourage treatment compliance (Gonzalez, Gallardo & Bastani, 2005).

Challenges by healthcare workers include dealing with the degree of cohesiveness of Latinx family systems to not follow recommendations (Crist, 2002). The dilemma of working with cultural norms that differ from provider views potentially cause opposition and disconnect in the provider relationship with Latinx patients. Because of the variety of encountered issues, culturally sensitive interventions are necessary to keep Latinx patients engaged. This can be achieved by creating an environment that encourages personal interactions which helps remove perceived treatment barriers (La Roche, 2002) and integrates the family network (Antshel, 2002) in decision-making practices that further trust and compliance.

 

References

1. Penwell, M., & Larkin, K.T. (2010). Social support and risk for cardiovascular disease and cancer: A qualitative review examining the role of inflammatory processes. Health Psychology Review, 4, 42–55.
2. Galanti, (2003). The Hispanic family and male-female relationships: An overview. Journal of Transcultural Nursing, 14, 180–185.
3. Katiria Perez, G., & Cruess, D. (2014). The impact of familism on physical and mental health among Hispanics in the United States. Health Psychology Review. 8(1):95-127.
4. Keefe, E. (1984). Real and ideal extended familism among Mexican Americans and Anglo Americans: On the meaning of close family ties. Human Organization, 43, 65–70.
5. Rodriguez, , Mira, C.B., Paez, N.D., & Myers, H.F. (2007). Exploring the complexities of familism and acculturation: Central constructs for people of Mexican origin. American Journal of Community Psychology, 39, 61–77.
6. Urizar, G. Jr, & Sears, S.F. Jr (2006). Psychosocial and cultural influences on cardiovascular health and quality of life among Hispanic cardiac patients in South Florida. Journal of Behavioral Medicine, 29, 255–268.
7. Segerstrom, C., & Miller, G.E. (2004). Psychological stress and the human immune system: A meta-analytic study of 30 years of inquiry. Psychological Bulletin, 130, 601–630.
8. Hsin, , La Greca, A.M., Valenzuela, J., Taylor Moine, C., & Delamater, A. (2010). Adherence and glycemic control among Hispanic youth with type 1 diabetes: Role of family involvement and acculturation. Journal of Pediatric Psychology, 35, 156–166.
9. Adams, R. (2003). Lessons learned from urban Latinas with type 2 diabetes mellitus. Journal of Transcultural Nursing, 14, 255.
10. Roldán, (2007). AIDS stigma in the Puerto Rican community: An expression of other stigma phenomenon in Puerto Rican culture. Revista InterAmericana De Psicología, 41, 41–48.
11. Gonzalez, , Gallardo, N., & Bastani, R. (2005). A pilot study to define social support among Spanish-speaking women diagnosed with a breast abnormality suspicious for cancer: A brief research report. Journal of Psychosocial Oncology, 23, 109–120.
12. Crist, D. (2002). Mexican American elders’ use of skilled home care nursing services. Public Health Nursing, 19, 366–376.
13. La Roche, J. (2002). Psychotherapeutic considerations in treating Latinos. Cross-Cultural Psychiatry, 10, 115–122.
14. Antshel, M. (2002). Integrating culture as a means of improving treatment adherence in the Latino population. Psychology. Health and Medicine, 7, 435–449.

 

The Global Health Centre - GHC, a founding component of the new MACH (MultidisciplinAry ResearCh in Health Science) of the University of Milan established with the support of the Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, is the first of its kind in Italy as it merges didactics and research towards “ensuring healthy lives and promoting well-being for all at all ages” (the United Nations’ Sustainable Development Goal 3 target). It aims at becoming a comprehensive and impactful contributor to the global health discussion internationally.


The GHC is directed by Professor Mario Raviglione. Find here a PEAH interview to him.

 Professor Mario Raviglione*

It is through the education of future decision-makers and leaders that health and access to it will be prioritized in every sector when choices are made. To put it in simple words, we aim at building ‘health-sensitive’ young generations of professionals

Interview

 

Professor Raviglione, the Global Health Centre – GHC is a founding component of the new Centre for MultidisciplinAry ResearCh in Health Science (MACH) and inspires its visionary aims. In this connection, can you tell us more about the MACH?

The new Centre for MultidisciplinAry ResearCh in Health Science (MACH), devoted to the sciences related to the health of populations, established in 2019 at the University of Milan, aims at becoming an international landmark and leading centre for health research. The special interest in infectious diseases, given the background of most of his founders, is complemented by that towards emerging global health threats, including non-communicable diseases, all seen through a global, equitable and multi-disciplinary perspective.

The Institute researchers tackle global health challenges, such as those determining illness and suffering among the poorest and marginalised populations, as well as those that can be faced through innovative biomedical solutions from research in immunology and microbiology. The MACH is truly a brand-new model of collaborative research in our country created with the support of the Fondazione IRCSS Ca’ Granda Ospedale Maggiore Policlinico that will offer its premises to host it.

Back now to GHC and its broad vision

GHC is engaged in addressing the principles and scope of global health, facing inequities and aiming at improving access to “health for all” through didactic and research activities conducted in partnership with experts from other national and international centres and institutes, nationally and internationally, sharing similar.

As for GHC’s ultimate goal?

GHC’s ultimate goal is to contribute to the development and implementation across disciplines, in full alignment with the United Nations Sustainable Development Goals (SDGs) 2016-2030, of sound health policies and practices that ensure universal access to care and prevention for the most vulnerable people in Italy and the world. To achieve this, multidisciplinary research and education engaging young generations of students that will become future leaders and decision-makers are essential. The GHC has therefore some basic functions.

Which are these functions?

The GHC has two clear-cut and well-defined functions. The first is Training and Education in global health: to create a cadre of future passionate leaders capable of being “global health-sensitive” among committed students from different backgrounds, including biomedical sciences, economics, law, international relations, sociology, ecology,  agronomy and all other related fields. As part of this programme, at University of Milan teaching on the essentials of global health is now integrated as a module into the regular medical student curriculum, a unique situation in Europe. In 2019-20, we will also begin teaching the principles of global health to students of other non-medical faculties.  The other real innovation is a new 1-year post-graduate Master Specialty Course in Global Health tht will start in late 2019 in collaboration with experts from prestigious academic institutions nationally and abroad. This is the very first in Italy and one of the few available in Europe. The second is Research to contribute to identification of innovative ways of handling complex public health problems looking at research as a continuum from the laboratory and fundamental research to operational and policy-related investigations.

In addition, two other functions derived from the main two include (i) contribution to making health policies focusing on that evidence generation that influences policy making by health authorities; and (ii) health promotion and advocacy to pursue public awareness and understanding of global health values and healthy behaviours through students towards civil society.

Kindly, add details relevant to the under-graduate module in Global Health and the coming post-graduate Master Course in Global Health

As mentioned above, the GHC staff has introduced teaching in global health for under-graduate students at University of Milan by integrating it into the regular medical student curriculum; second, the new Master Course in Global Health has been established for those who want to pursue a career in global health. Both are coordinated by myself in close collaboration with the team of Professor Andrea Gori. The under-graduate teaching – the first of its kind in Italy and an innovation in Europe – consists of a module, that is adapted to the level of students, focused on the essential knowledge of the big themes of global health as part of the mandatory courses of Public Health and of Introduction to Medicine in the Medical School curriculum. In essence, we teach to first-year medical school students as well as to those in their 2^nd, 4^th and 5^th year enrolled in the course of Public Health (and Hygiene, as it is often still called in Italy). As of  2019-20, we will also start teaching the principles of global health to economics and management students, as I do already at the health management course at Bocconi University. This is an attempt to make other future professionals more “health-sensitive”, so that one can count on their understanding of the concepts of universal access, vulnerability, social and economic determinants, etc when making general policies in the future. It intends to address the fact that health is the result of choices made in many other sectors beside the biomedical one.

As for the Master Course in Global Health (MGH), organised by us at GHC through a joint initiative with colleagues at MACH led by Prof. Gori and with the precious collaboration of Giulia Rolla, and financially supported also by Intesa SanPaolo, it is a professional, specialty master of 1-year duration offered by the University of Milan in close collaboration with experts from major institutions world-wide, including University of Geneva, Karolinska Instituten, Columbia University, Graduate Institute Geneva, Swiss Tropical Medicine Institute, World Health Organization and others such as San Raffaele Hospital, Niguarda Hospital, University of Brescia, University of Sassari, Bocconi University, CUAMM etc. The first year will begin in early November 2019 and end a year later. In a few words, the new master course aims to deepen knowledge and study contemporary global health issues from an interdisciplinary and inter-sectorial perspective. The MGH, conducted in English language, is open to post-graduate students from Italy and abroad coming from a variety of different backgrounds: from health and biomedical sciences to economics, sociology, anthropology, international relations, law, ecology, agronomy, diplomacy, political sciences, management etc. The MGH mission is to provide students the toolbox to understand and analyse health issues with a focus on both their broader determinants and direct causes, while looking for innovative solutions that transcend sectors. The Master aims to prepare students and future leaders to work in different settings that include the public sector at national (e.g. ministries of health, foreign affairs, development cooperation, etc.) or local level (e.g. regional or district public health authorities), international organizations, nongovernmental and faith-based organizations active in health and development, public private partnerships, and the private sector engaged in health.

Will students have the opportunity to go outside of the school class and see the realities of the world today when it comes to the way of managing global health issues?

Certainly! The Master Course will include a week of simulations of monitoring and support visits to high-disease burden countries, led by the team of Prof. G.B Migliori of the WHO Collaborating Centre based at Fondazione Maugeri, Tradate, Italy, and conducted in the peaceful Valtellina mountains, in a sort of retreat format. Further, the master course will allow students to rotate through major institutions in Milan, such as Niguarda and San Raffaele Hospitals, and learn the significance and applications of modern “omics”, so that they are ready to face ethical and technological issues. And, very importantly, the master course includes a rotation of one month for all students to low-income settings of Africa such as Cameroun, thanks to a collaboration with the national government through the University of Geneva, and Pemba, in the U.R. of Tanzania, also thanks to the collaboration with the local government through the Fondazione Ivo De Carneri, Milan, Italy.

Eventually, what about global health research at the GHC?

Global health research is an ongoing programme that explores innovative ways of handling complex public health problems, embracing innovations in technology and epidemiological understanding, and exploring implementation challenges. The programme works with experts from partner institutions in Italy and world-wide and focuses on priority conditions in infectious diseases and beyond, determinants of health, and innovations in delivery of care and prevention. GHC priorities in global health research include:

• Innovations and new technologies in the response to major killers like tuberculosis and HIV
• Poverty, migration and vulnerability as socio-economic determinants of access to health
• Translation of technological advances into policy and practice

In concrete terms, I am working now on projects related to migrant health issues, the definition of “precision global health “, which is a new concept under development by important global health experts in Europe, policies for new drug development for which we have a grant from the European Union, and some specific challenges in the global fight against tuberculosis, that is my old passion and area of expertise.

Thank you Professor Raviglione for your enlightening answers and highly commendable engagement

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* About Professor Mario Raviglione

Mario Raviglione graduated from the University of Turin and specialised in the USA (Cabrini Medical Centre, NY, and Beth Israel Hospital at Harvard Medical School, Boston) in internal medicine, infectious diseases and AIDS. He was director of the Global Tuberculosis Programme at the World Health Organization, Geneva, between 2003 and 2017. He is Full Professor in Global Health and Director, Global Health Centre, at the University of Milan and holds the appointment of Professeur Titulaire at the Global Studies Institute of the University of Geneva, Switzerland.

Contact: mario.raviglione@unimi.it