Immigrant women living with HIV in Spain: a qualitative approach to encourage medical follow-up

BMC Public Health Immigrant women living with HIV in Spain: a qualitative approach to encourage medical follow-up Anne Guionnet 0 2 Brbara Navaza 0 2 Beln Pizarro de la Fuente 0 2 Mara Jess Prez-Elas 1 Fernando Dronda 1 Rogelio Lpez-Vlez 0 2 Jos A Prez-Molina 0 2 0 Tropical Medicine, Infectious Diseases Department, Hospital Universitario Ramon y Cajal, IRYCIS , Crta. de Colmenar Km 9,1, Madrid 2834 , Spain 1 Infectious Diseases Department, Hospital Universitario Ramon y Cajal, IRYCIS , Madrid , Spain 2 Tropical Medicine, Infectious Diseases Department, Hospital Universitario Ramon y Cajal, IRYCIS , Crta. de Colmenar Km 9,1, Madrid 2834 , Spain Background: Immigrant women living with HIV generally have worse adherence to medical treatment and follow-up when compared to native women and immigrant or native men. The general aim of this study was to improve healthcare services for HIV-positive women and to better understand why some of them discontinue treatment. The specific objectives were: (1) to explore the barriers and facilitators to medical follow-up among women and (2) to use the findings to create a guide for healthcare professionals with strategies and tools to encourage the immigrant women to continue with their healthcare treatment. Methods: We conducted a qualitative, patient-centred research based on semi-structured interviews in order to understand the drivers and barriers for HIV positive immigrant women to adhere to medical follow-up. A total of 26 women in active or discontinued treatment (from sub-Saharan Africa (10), Latin America (8) and Spain (8)) were interviewed in 2012 using a purposive sampling methodology. The semi-structured interviews were transcribed and analysed based on the grounded theory approach and the framework method. Three researchers took part in the triangulation of results. The study was approved by the Ethical Committee of the Hospital Universitario Ramn y Cajal. Results: The study revealed eight categories that impacted adherence to treatment and medical follow-up: doctor-patient relationship, relationship between body and HIV, employment, gender roles, representations of AIDS, emotional support received, trust in biomedical system, and psychological condition. Specific barriers and facilitators related to these categories were identified. In immigrant women, the influence of these barriers was greater than in Spanish women. Recommendations for healthcare professionals based on this study have been compiled in an informative brochure. Conclusions: Social, cultural, and psychological aspects as well as self-perception of body changes, gender roles, and the relationship with the healthcare system, are key elements that may affect the adherence to medical treatment of immigrant women living with HIV. Qualitative research focused on the comprehensive experience of living with HIV can be useful for creating tools that pave the way to detect barriers and facilitators to medical follow-up in specific populations. Women; HIV; Migration; Lost to follow-up; Barriers; Facilitators - Background Women are estimated to make up half of the total HIV infected population worldwide. Although the gender distribution varies depending on the location, epidemiological data demonstrate that in recent years the proportion of infected women is growing [1]. Compared to men, women represent a more vulnerable population because they are more frequently exposed to discrimination, gender violence and overall infringements of basic rights [2,3]. Furthermore, it is known that the effect of the antiretroviral treatment can vary according to gender. Although the study results obtained on women are contradictory and vary from better responses [4-6], similar [7,8] or worse [9,10] than those among men, what has been consistently demonstrated by studies is that the ratio of discontinued antiretroviral treatments is significantly higher among women [7-10], especially in the case of immigrant women [11]. HIV infected immigrants are an especially vulnerable population, particularly immigrants who are women, due to cultural barriers, social stigma associated with the disease, difficulties in accessing health care, and language barriers [12-14]. In a qualitative study focused on HIV positive Latin American immigrants living in the US, the authors identified two main barriers to obtaining the correct treatment for the disease: (1) being undocumented and (2) the stigma associated with the virus both in the family and in society at large [14]. In the United Kingdom, a study revealed that sub-Saharan patients were taking traditional medicines to treat HIV without informing their doctors, showing the influence of cultural conceptions in regards to HIV treatment [15]. Another of the investigations focusing on HIV positive immigrant women showed that religion, the migration process and the stigma associated with AIDS significantly influenced how they dealt with the infection [16]. The language gap has also been described as a factor that influences their vulnerability to the HIV [17] and campaigns aimed at preventing and treating the disease are often not adequate for immigrant women because of their language constraints. In Spain, more than half of the women diagnosed with HIV in recent years are immigrants and up to 30% of the AIDS cases among women are found among Latin American and sub-Saharan immigrants [18]. Existing data shows that the rate of medical loss to follow-up among immigrant women can be up to twice that of Spanish women [19], a situation that may worsen with the present economic crisis [20]. Nevertheless, there is lack of evidence able to explain the reasons why this population group has a worse adherence to HIV treatment and follow-up. Even if in another countries research has shown the importance of factors such as stigma, religious beliefs or migration status, in Spain no qualitative study has been developed yet to investigate the causes why immigrant women stop HIV treatment. The aim of this paper is twofold: Firstly, to describe the barriers and facilitators of social, cultural, and psychological origin that affect the medical management and follow-up treatment of HIV positive immigrant women in Spain. Secondly, to identify new strategies and tools for healthcare professionals to assist them in encouraging follow-up treatment among this population. Methods This qualitative study was developed by the Infectious Diseases Department of the Hospital Ramn y Cajal in Madrid between January and July 2012. The qualitative approach was deemed appropriate as it is well suited for the difficult task of representing groups outside the society's mainstream as well as for providing rich descriptions of complex phenomena. Sample Both immigrant and native women infected with sexuallytransmitted HIV were selected using a purposive sampling method in order to facilitate the identification and selection of information-rich cases; the blood transmission of HIV was a (...truncated)