Short Communication

Welfare Homes for Patients Living with HIV/AIDS in Andalusia

Journal of the International Association of Providers of AIDS Care 2014, Vol. 13(5) 393–396 ª The Author(s) 2013 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/2325957413508322 jiapac.sagepub.com

Radka Ivanova, MD, PhD1, Salvador Vergara, MD2, Manuel Milla, MSc3, Fernando Lozano, MD, PhD4, and Jesu´s Santos, MD, PhD1

Abstract Aims: To study the AIDS welfare homes (AWHs) in Andalusia, assess their resources and the services provided, and describe the characteristics of their residents. Patients and Methods: Cross-sectional, observational study; an interview questionnaire technique was used with the managers and the residents of the AWHs. Results: A total of 7 AWHs and 96 residents were included; 32% of the staff were health care workers and 45.5% volunteers. The occupancy rate was 86% (2007) and 96% (2008). Residents’ characteristics: mean age 45.6 years, 73% male, 92% with at least 1 AIDS-defining disease, median Karnofsky index 60 (50-80), and median Barthel index 80 (40-100). Half the residents had physical sequelae and 31% mental sequelae. Conclusion: The AWHs perform an important role in the care of certain types of patients with HIV infection. They require human and material resources to be able to tackle the immense difficulties associated with this group of patients. Keywords HIV/AIDS infection, welfare home, drug addiction, palliative care

The AIDS welfare homes (AWHs) were born as charitable resources to provide care to the HIV/AIDS-infected patients, as an important percentage of infected individuals could be considered to be in a state of social exclusion.1 Patients with drug addiction problems, absence of a family environment, a low cultural status, and sometimes totally abandoned were users of these institutions.1 The AWHs provided accommodation, hygiene facilities, food, and health and palliative care so that HIV/AIDS-infected patients could live and die with dignity.1 Nowadays, although the number of patients with these features has decreased, the AWHs continue to provide shelter and play their role in the care of many patients with HIV/AIDS infection, providing both social and health care benefits.2,3 The aim of this study was to analyze the characteristics, resources, and services provided by the AWHs in Andalusia and to determine the current profile of their residents.

Health and Participation of the Andalusian Health Council. The methodology involved interview questionnaires at 2 levels: 1. Level A, Profile of the AWH: Interview with the director of the AWH or his or her delegate. This first questionnaire aimed to obtain information about the AWH, its structure, resources, finance, capacity, occupation, facilities, and activities. 2. Level B, Profile of the residents: Interview with the AWH residents to obtain personal information about their medical profile such as reason for admission, subjective assessment of their health status, situation of dependence, and so on. Data were also gathered on sociodemographic information, toxic habits, biological parameters related to the HIV infection (CD4 count, viral load), therapy (treatment adherence), clinical

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Patients and Methods This cross-sectional, observational, descriptive study included 7 AWHs in the autonomous region of Andalusia, Spain. The researchers personally interviewed the managers and the residents of each home. An interview questionnaire on the different aspects of the AWH was administered. The data were validated through in situ observation in all the cases. The list of AWHs was provided by the General Secretary of Public

UGC de Enfermedades Infecciosas, Hospital Universitario Virgen de la Victoria, Ma´laga, Spain 2 Servicio de Medicina Interna, Hospital de la Merced, Osuna, Spain 3 Secretarı´a Te´cnica SAEI 4 UGC de Enfermedades Infecciosas, Hospital Universitario Nuestra Sen˜ora de Valme, Sevilla, Spain Corresponding Author: Jesu´s Santos Gonza´lez, UGC Enfermedades Infecciosas, Hospital Virgen de la Victoria, Campus Teatinos s/n, 29010 Malaga, Spain. Email: [email protected]

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Table 1. Characteristics, Resources, Health Control, and Activities of the 7 AWH Analyzed. No. of AWH Program or activity Follow-up by IDU Antiretroviral drug adherence control Antiretroviral drug register Antituberculous drug adherence control Attention for drug addictions Courses for residents Training courses for educators Leisure programs Occupational insertion programs Family reinsertion programs Performing arts, handicraft, computer workshops Dependence Private associations Religious orders Red Cross Funding Mixed Public Private Agreements with public bodies Garden Gymnasium Vegetable garden

7 7 7 7 6 6 7 7 6 7 7 3 2 2 4 2 1 6 4 4 3

Abbreviations: AWH, AIDS welfare homes; IDU, infectious disease unit.

status, quality of life (Barthel and Karnofsky indexes), and course of the HIV infection. Medical data were contrasted in the hospitals attending the patients. The study was approved by the Ethics and Research Committee of Virgen de la Victoria Hospital, Malaga, and Nuestra Sen˜ora de Valme Hospital, Seville. The AWH manager was asked to provide written informed consent for use of the data collected in the interview. All the AWH residents were invited to participate; they were informed about the nature of the study and their written informed consent was requested. The confidentiality of the participants’ data was respected at all times in accordance with Spanish law (Ley Orga´nica 15/1999 de Datos de Cara´cter Personal). The data were included in a database for further statistical analysis. Continuous variables are expressed as means (interquartile range) and the categorical variables as number of cases (percentage). Data were analyzed using the statistical software SPSS version 17.0 (SPSS, Chicago, Illinois).

Results From January 2009 to June 2009, seven AWHs were analyzed. All of them belonged to nongovernmental organizations, with a predominance of mixed funding (Table 1). All except one had agreements with some public sector organization. The occupancy rate during the previous 2 years was 86% in 2007 and 96% in 2008. The AWHs staff comprised 167 persons, of which

Table 2. Tasks of the Staff Working at the AWH.a Health care Nursing assistants Registered nurses Physicians Psychologists Physiotherapists Social assistants Educators/monitors Companions Kitchen staff Administrative staff Other Working relationship Full-time contract Part-time contract Practice contract Volunteerb

53 (32) 19 (11.3) 10 (6) 9 (5.5) 6 (3.6) 2 (1.2) 7 (4.2) 53 (32) 18 (10.8) 15 (9) 4 (2.4) 24 (14) 81 (48.5) 8 (4.8) 2 (1.2) 76 (45.5)

Abbreviation: AWH, AIDS welfare homes. a N ¼ 167. Variables are expressed in n (%). b With no economic remuneration.

almost one-third were health care workers, with the instructor monitor being the most frequent. Almost half of the staff were employed full time, and 45.5% were volunteers (Tables 2 and 3). All the AWHs are associated with a Health Center and Mental Health Center as well as a Hospital Unit or Service with specialized care for HIV/AIDS and other frequent diseases such as chronic hepatopathies. All the AWHs control and record adherence to tuberculostatic therapy and antiretroviral therapy (ART). In addition, there are projects dealing with drug addiction, occupational insertion programs, courses for the residents, family insertion programs, training courses for educators, leisure programs, handicraft workshops, performing arts workshops, computer workshops, and so on (Table 1).

Profile of the Residents Of the 103 residents present during the study period, 96 (93.2%) agreed to participate in the study. Their sociodemographic and clinical features are shown in Table 3. Before their arrival at the AWH, 69% of the patients had abandoned ART. However, at the time of the interview, 85% were following ART, with the therapeutic adherence being 90% of the doses in 97% of the patients. The median Karnofsky index was 60 (50-80), and the Barthel index was 80 (40-100). In all, 88 (92%) patients had or previously had at least 1 opportunistic AIDS-defining disease (Table 4). Besides the HIV infection, at the time of the study 86 (90%) patients had some disease or sequelae with neurological symptoms (66%), mainly motor and speech disturbances (64%), psychiatric symptoms (46%; psychotic in 41%, anxiety in 31%, depression in 27%), and respiratory symptoms (45%; dyspnea 86%). These diseases and the state of dependence are shown in Table 5. Psychotropic drug use and methadone substitution treatment were very frequent (Table 6).

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Table 3. Sociodemographic Characteristics and Immunovirologic Status of the AWH Residents.a Variable Mean age Male Smokingb Alcoholismb Illegal drugs parenterallyb Illegal drugs by inhalationb Scarce family relation No education Elemental education No profession or trade BMI, kg/m2 CD4 cells/mm3 VL < 50 copies/mL

45.6 years (42-49) 70 (73) 91 (95) 36 (38) 31 (32) 46 (48) 47 (49) 57 (59) 30 (31) 52 (54) 20.5 (18.3-24) 233 (90-392) 44 (46)

Abbreviations: AWH, AIDS welfare homes; BMI, body mass index; IQR, interquartile range; VL, HIV viral load. a N ¼ 96. b Addictions at AWH admission. Quantitative variables expressed in mean (IQR) and qualitative variables in n (%).

Table 4. Opportunistic AIDS-Defining Diseases in the Residents.a

Table 5. Pathologies and Dependence Status at the Time of the Study. Pathology and Dependence Status Chronic hepatopathy due to virus C Neurologic disorder Chronic bronchopulmonary disease Major psychiatric disorder Limiting physical sequelae Limiting psychic sequelae Wheelchair needed Walking frame needed Crutches needed Bed restriction Diaper needed due to urinary incontinence

25 (26) 23 (24) 8 (8) 8 (8) 48 (50) 30 (31) 15 (16) 4 (4) 6 (6) 2 (2) 24 (25)

a

N ¼ 96. Variables are expressed in n (%).

Table 6. Type of Treatment Followed by the Residents.a Treatments Antiretroviral drugs Psychotropic drugs Methadone Opportunistic infection prophylaxis Other drugs

82 75 50 43 49

(85) (78) (52) (45) (51)

a

Tuberculosis Esophageal candidiasis Pneumonia due to Pneumocystis jirovenci PML Encephalopathy due to HIV Cerebral toxoplasmosis Neoplasms

29 (30) 14 (15) 11 (11) 9 (9) 9 (9) 6 (6) 5 (5)

Abbreviation: PML, progressive multifocal leukoencephalopathy. a N ¼ 96. Variables are expressed in n (%).

Discussion This study shows that AWHs are still necessary. Their occupancy rate is very high, and the profile of the residents shows great physical, psychic, and social dependency, resulting in independence being impossible, at least for some of the time. Currently, 10% of the patients with HIV infection are estimated to have important problems of social marginalization with scarce economic resources and little or no family support,4 in addition to the physical and psychic sequelae of both the HIV infection itself and the toxic habits. A multidisciplinary approach to all these aspects is therefore necessary.5 The AWH fulfills this task. They all have fluent contact with the medical services, both primary care and the infectious diseases units, control treatment adherence and care of drug abusers, and hold courses and workshops. Some of the residents can even be discharged after a more or less continuous stay. Although almost all the AWHs have agreements with some public body, the dependence and finance fall on private organizations, whether or not charitable. Almost 50% of the staff are volunteers. The typical profile of a resident is a middle-aged man with low quality-of-life indicators, problems derived from drug abuse,

N ¼ 96. Variables are expressed in n (%).

and advanced HIV infection with opportunistic events that often have very limiting physical and psychic sequelae. Thus, a considerable proportion of the residents also require special care and prolonged AWH stays. HIV-infected persons experiencing social exclusion have a worse evolution than those who do not have problems of marginality, usually due to the difficulty in maintaining adequate adherence to ART and other treatments. However, the response to antiretroviral drugs in these particular persons, when adequate adherence is maintained, is as good as in other HIV-infected patients.6-8 The delay in starting ART is related to higher mortality, and this frequently occurs in those persons with the previously mentioned problems.9 Given that the management of these patients is often complex, a global intervention is advisable to treat the HIV infection together with the other disorders and social problems.10-13 Although the study has a few limitations, mainly the crosssectional design, it includes all AWHs from our geographic area and presents very detailed features about the characteristics, resources, health control and activities of these homes, the staff working at them, and their residents. So, the results contribute relevant information on the typical profile of patients who benefit from AWHs. In summary, from the health perspective, the AWHs continue to play an important role in the care of certain types of patients with HIV infection: those with problems of social marginality and severe physical or psychic sequelae. Given the complex clinical situation and dependency of the residents, the AWHs require human and material resources to be able to tackle the immense difficulties of this group of patients.

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Acknowledgments We thank the members of the Board of Directors of the Andalusian Society of Infectious Diseases for their trust in us for this study; all the AIDS welfare homes staff for their dedication and enthusiasm and for facilitating our work; and all the residents for their desire to live and their strength and courage facing the disease.

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Authors’ Note All the authors are associated with the Andalusian Society of Infectious Diseases (Sociedad Andaluza de Enfermedades Infecciosas, SAEI). 7.

Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

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The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: The present study was financed by a scholarship from the Secretarı´a General de Salud Pu´blica y Participacio´n, Consejerı´a de Salud, Junta de Andalucı´a.

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