Abstract
The purpose of this study was to identify obstacles health care workers face in providing care for people living with HIV and AIDS (PLWHA). Based on these findings, health authorities can design interventions to support health care workers in providing better medical care for PLWHA. Thirty in-depth interviews were conducted with physicians and nurses in one 300-bed tertiary care public hospital in Giza, Egypt. Thematic analysis was conducted by 2 investigators. Five main themes were identified (1) fear of infection; (2) disbelief in effectiveness of infection control measures to protect against HIV; (3) misconceptions regarding medical care for PLWHA; (4) fear of secondary stigma; and (5) moral judgments toward PLWHA and negative connotations related to HIV. Interventions targeting health care workers should be multidimensional, including knowledge and skills building as well as value and attitude change. Reducing stigma among health care workers will improve access to care for PLWHA.
Keywords
Background
HIV continues to spread in the Middle East and North Africa (MENA) region. The number of new infections increased from 36 000 in 2001 to 75 000 in 2009. 1 Available information suggests that Egypt has a low national prevalence of just 0.1% to 0.2%. 2 However, similar to the situation in many other countries in the region, 3,4 concentrated epidemics are growing among some of the most at-risk populations in Egypt. 5
Increasing numbers of HIV-positive persons together with improved access to antiretroviral (ARV) drugs has led to improved survival rates in people living with HIV and AIDS (PLWHA). 6 Accordingly, the need for basic medical services for PLWHA is on the rise. In addition, PLWHA will also need to deal with age-related medical problems such as renal diseases, cardiovascular diseases, dyslipidemia, depression, and others that will require medical attention. 7,8 To manage these conditions, the health care system needs to adjust the services and prepare health care workers to provide medical care for an increasing number of PLWHA. 9
Previous studies indicate that PLWHA in Egypt encounter stigmatizing attitudes in the health care setting, 10,11 and denial of care is common. Specialized fever hospitals with dedicated wards for PLWHA offer services, but they are directed mainly toward opportunistic infections. Therefore, it is common that PLWHA do not find the required medical care, particularly in cases of surgical care. The Egyptian Ministry of Health National AIDS program (NAP) provides medical assistance for PLWHA on a case-by-case basis. The process of seeking surgical care is time consuming and difficult for both patients and NAP because finding physicians and hospitals that will treat PLWHA is not easy. To combat this challenge, the NAP strategized to develop a network of referral hospitals to provide stigma-free medical services for PLWHA through a pilot program focusing on anti-HIV stigma intervention. The project is conducted in collaboration with the Global Disease Detection and Response Program (GDDRP) at the US Naval Medical Research Unit No. 3 (NAMRU-3). The aim of the project is to facilitate access of PLWHA specifically for surgical care. The pilot intervention was tailored to fit the Egyptian context and was carried out in a 300-bed tertiary care public hospital in Cairo, Egypt.
To develop the intervention, it was necessary to learn about barriers health care workers perceive in the provision of medical care for PLWHA. A literature review revealed that there are numerous studies about the experiences of PLWHA in health care settings in different countries, but only a few studies explore the provision of medical care for PLWHA from the perspective of health care workers. Most of these studies examine stigmatizing attitudes and the use of infection control measures in HIV-positive patients. 12 –15 The review also revealed that no previous studies have been conducted about constraints to provide care for PLWHA in the Egyptian health care setting. This study was meant to bridge the gap. In order to build a long-term program to support health care workers caring for PLWHA, individual-, environmental-, and policy-level constraints need to be identified. This study looked at individual-based barriers. Qualitative methods were considered suitable for these purposes, as they offer a better understanding of the underlying reasons for current attitudes and behavior that make access to medical care for PLWHA difficult.
Methods
Design
The study was conducted from October 2010 to December 2010 in a 300-bed tertiary care public hospital in the governorate of Giza in Egypt. The National AIDS program selected the hospital for the pilot, because it provides a large variety of surgical specialties. The study used qualitative research methods that emphasized discovery and description. 16,17 The approach aimed to comprehend the reasons behind denial of care for PLWHA rather than explaining it and to indicate particular ways to deal with it. The data were collected through open-ended in-depth interviews to obtain information on perceptions of respondents regarding HIV and AIDS, PLWHA, and medical care for PLWHA.
Recruitment and Sample
Study participants were selected from the surgical units of the hospital based on their interest and availability to discuss the subject matter. Study investigators visited the surgical units of the hospital, explained the study objectives, and invited health care workers to volunteer for the interview. If the individual was interested in being interviewed, the study investigator scheduled the interview accordingly.
The sample included 30 in-depth interviews with an equal number of physicians and nurses. Physicians in the sample included 2 dermatologists, 7 general surgeons, 2 anesthesiologists, 1 rheumatologist, 2 orthopedic doctors, and 3 obstetrician–gynecologists, all of whom had worked in their specialization for 10 to 24 years. Only 2 of the physicians were women. All of the nurses had a 2-year nursing school diploma with work experience of 2 to 15 years, with the exception of 1 nurse who had high institute-level nursing education of 4 years. Only 1 nurse was a man. All of the nurses worked in the surgical department. None of the nurses or doctors had received formal training on HIV. All nurses had received a number of infection control trainings organized by the hospital’s intensive care (IC) team, whereas only some of the doctors had received formal IC training. None of the respondents had provided care for PLWHA before.
Procedures
Interviews were conducted by 4 social workers experienced in conducting qualitative interviews. They were trained for 2 days on the purpose of the study, research ethics, and how to use the question guides. The social workers also piloted the question guides, and modifications were made accordingly.
All interviews were conducted in a private room to maintain confidentiality. Each interviewer conducted 2 to 3 interviews per day, each lasting for 30 to 90 minutes.
Analysis
The interviews were tape-recorded, transcribed, and translated from Arabic into English. 18 A bilingual member of the research team conducted quality checks during the translation and transcription process to ensure their accuracy. Two researchers conducted initial coding of the text independently by reading printouts of the translated transcriptions several times and by highlighting words, phrases, and sentences. The researchers then jointly reviewed the highlighted sections and developed them into codes by consensus. The data were then coded, and a chart was developed onto which relevant quotes were sorted. Through revision, the codes were grouped into larger categories. This process led to the eventual reduction in the raw data according to 5 main themes. The second author of this study identified the key characteristics and made the final interpretation of the data set as a whole.
Ethical Considerations
The study protocol (NAMRU3 2010.0011) was reviewed and approved by the Ministry of Health in Egypt and by the Naval Medical Research Unit No. 3 Institutional Review Board in compliance with all applicable federal regulations governing the protection of humans. All participants provided verbal informed consent in Egyptian Arabic. Personal identifying information was not collected from study participants, and if names or other identifying information were mentioned during interviews, they were deleted from the transcripts.
Results
Five main themes explaining barriers to care among health care workers emerged from the analysis: (1) fear of getting infected with HIV; (2) disbelief in effectiveness of infection control measures to protect against HIV; (3) misconceptions regarding medical care for PLWHA; (4) fear of being stigmatized by others; and (5) moral judgments toward PLWHA and negative connotations related to HIV. Each theme was divided into 2 to 4 subthemes (see Table 1). In general, the themes were consistent across doctors and nurses; differences between occupational groups, if present, were noted.
Identified Themes and Codes Describing Barriers to Provide Medical Care for PLWHA.
Abbreviation: PLWHA, people living with HIV and AIDS.
Theme 1: Fear of Getting Infected with HIV
Participants frequently mentioned fear of getting infected with HIV, which was used as justification for denial of care. Although the hospital had an infection control program and the majority of staff members had received some formal infection control training, respondents believed that HIV-positive patients require additional or different kinds of infection control procedures that they were not aware of. For example, one nurse worried that the typical sterilization process for medical equipment would not be sufficient. Another physician discussed efficient ways to avoid cross infection and wondered whether burning the bed sheets of HIV-positive patients would be sufficient.
Respondents also indicated they lacked knowledge about HIV. One physician explained that he did not know anything about HIV, as it was not covered in the curriculum of medical school. Another physician stated not knowing how HIV is transmitted and therefore expressed strong fear of treating PLWHA. Two physicians and 1 nurse feared unknown routes of transmission yet to be discovered by scientists, which made them uncomfortable providing care for PLWHA. My knowledge is marginal, because HIV is not my specialty. (Doctor)
Theme 2: Disbelief in Effectiveness of Infection Control Measures to Protect Against HIV
Some physicians claimed to have sufficient knowledge of infection measures but expressed disbelief regarding their efficacy. One physician feared that wearing gloves might not provide enough protection in case of HIV blood spills. Some respondents did not think that it was possible to prevent needlestick injuries using infection control or other measures; they just happened. Nurses in particular feared needlestick injuries with one explaining that even skilled nurses easily prick themselves with needles and another stating that it was not possible to control everything, referring to needlestick injuries. One of the general surgeons explained that needlesticks happened frequently when surgeons are exhausted or lose concentration, especially at the end of a long surgery. Needlestick injuries just happen. There are no precautions against needlesticks. (Physician)
Theme 3: Misconceptions Regarding Medical Care for PLWHA
Participants frequently stated that HIV requires special medical care and explained not having been trained to care for PLWHA. Two nurses explained that HIV-positive patients need to be treated in isolation because the disease is dangerous and contagious. A couple of physicians also referred to the importance of isolating PLWHA to prevent cross infection. Some physicians also discussed how providing medical care for PLWHA in Europe or in the United States was easy, as there were specialized HIV hospitals for that purpose, whereas in Egypt providing medical care for PLWHA was difficult and even impossible due to lack of specialized equipment, supplies, and trained health care staff. Because respondents had only a little knowledge of antiretroviral therapy and believed that it was not available in Egypt, they assumed that PLWHA did not need any medical services, as they were dying patients. Respondents had not perceived HIV infection as a chronic condition with various ordinary medical problems but linked medical care with treatment. Some physicians mentioned that psychosocial support was the only type of medical care that could be provided to PLWHA.
There was also a deep-rooted misconception that according to a ministerial degree, PLWHA were to be treated only in specialized fever hospitals. Some respondents explained that treating PLWHA in other hospitals could lead to legal consequences. The only care we can give is psychosocial support, what other medical services would people infected with HIV need? (Nurse)
Theme 4: Fear of Being Stigmatized by Others (Secondary Stigma)
Respondents feared community stigma toward them for treating PLWHA. One doctor was worried that a hospital with HIV-positive patients would scare other patients. Another doctor believed that physicians without a strong reputation might be stigmatized by treating PLWHA which, in turn, could lead to losing patients in the public hospital as well as in the private clinic. Respondents frequently pointed out the need to reduce community stigma against PLWHA before they can provide medical services for them.
There was also fear of being stigmatized by family members. Two nurses explained that they could never tell their families that they deal with PLWHA for fear of being isolated. Fear of stigma among nurses was also grounded in the fear of changing social roles in society. One nurse believed that a nurse treating PLWHA would not get married. Another claimed that caring for PLWHA would lead her in-laws to take her children away from her. One doctor feared the reaction of his wife if she knew he was providing medical care for PLWHA. If a nurse gets infected, she will not be able to deal with her kids. (Nurse)
Theme 5: Moral Judgments Toward PLWHA and Negative Connotations Related to HIV
Respondents also described not being willing to provide care for PLWHA because it made them feel unclean and uncomfortable. The feeling was related to moral judgments and blame. Respondents believed that PLWHA only had themselves to blame for their infection due to immoral sexual behaviors. Two physicians expressed frustration with the idea of providing medical care for PLWHA because they believed it was not worth the risk to their own health. One of them explained that PLWHA need to take responsibility for acquiring the infection and avoid transferring it to others. Another physician explained that it does not feel right to provide care for someone who has done something wrong. A nurse discussed that PLWHA were not to blame if the infection came from a blood transfusion or other medical operation, but if the infection was acquired through sexual contact, the blame was on the individual. Similarly, 2 other nurses confessed that they would not sympathize with the patient who contracted the infection through sex. One nurse claimed being able to visually identify PLWHA who were infected through blood transfusion as she said these cases were in chronically bad shape, whereas those who got HIV through sexual contact looked healthy.
Participants also mentioned multiple negative connotations toward HIV as a dangerous, serious, or bad disease. One physician explained that HIV was something bad and sad. The concept of death was also closely linked to HIV. One nurse compared PLWHA to patients with cancer, saying that both types of patients will never recover. Some physicians also believed that PLWHA had a desire to infect others. One of them explained that dealing with needles among such dangerous patients was a great risk for health care workers. I think HIV is something bad. It gives me a feeling that something is wrong. I just don’t like the word HIV or AIDS. AIDS is surely not a word I like to repeat. It is sad and bad. (Physician) It does not feel right to put health providers at risk, when the patient has done something wrong and is infected with HIV (Physician)
Discussion
The findings of this study provided valuable information about the constraints of providing care for PLWHA in the Egyptian health care setting but are also likely to be relevant for settings with low HIV prevalence and limited resources. These findings can assist health authorities in establishing PLWHA-friendly hospitals by addressing the problems health care workers have in caring for PLWHA.
Fear of infection was obvious among the participants, which seems to stem from misconceptions and lack of knowledge of modes of HIV transmission and infection control skills. Although many respondents had received basic infection control training at their hospital, they had not made the link between standard precautions and care of PLWHA, instead believing that providing medical care for patients with HIV infection required other, stronger precautions. Studies from India, China, Puerto Rico, and Jordan have likewise identified fear of infection among health care workers when dealing with PLWHA and concluded that it was a result of lack of knowledge and transmission misconceptions. The studies also reported discriminatory behaviors such as denial of care and linked them to fear of infection too. 12,14,15,19,20
Without doubt, fear is an important obstacle in health care workers, and health authorities need to find ways to address it. Improved infection control knowledge and skills have the potential to increase the confidence of health care workers to deal with patients having blood-borne pathogens, including HIV, and therefore lessen the concerns about HIV transmission. However, compliance with standard precautions remains a challenge in the Egyptian setting, as quality of care is often not in a list of priorities, and standards for quality of care and systems vary throughout the country. Some health facilities have already received international accreditation certificates, but the vast majority of the health facilities still require targeted efforts to improve the quality of care. 21 –25
A sustainable country-wide system for infection control trainings should be institutionalized, and specific HIV-related exercises could be integrated into it, such as risk assessment exercises or case studies in PLWHA. This would help health care workers make the missing link between standard infection control measures and HIV as well as help mitigate the fear of infection. Equally important would also be to develop hospital-based policies for postexposure prophylaxis and to ensure availability of personal protective equipment at all times for all health care workers.
Moreover, respondents who understood that standard precautions protect from blood-borne pathogens, including HIV, did not always believe that they were effective enough to protect them from actual HIV transmission. Similar findings were recorded among the health care workers in Botswana. 19 As such, it is important that infection control training and related information is made credible and relevant for the health care workers. Health authorities should consider presenting scientific evidence on the effectiveness of infection control measures and minimal risk of infection in the health care setting, such as the overall rate of nosocomial transmission of HIV after needle prick injuries from HIV sero-positive patients, which is estimated to be only 0.3%. 26
Claims of limited HIV knowledge among health care workers may come as a surprise after more than 2 decades of HIV prevention and awareness increasing in Egypt; however, channels for distributing HIV-related information remain rare, even for health care workers. Various studies demonstrate low general knowledge of HIV in Egypt and in the surrounding regions. 10,27,28
An attempt to institutionalize HIV-related curriculum for Egyptian secondary schools was approved some years ago by the Ministry of Education in Egypt but removed again only after a few years. In medical schools, HIV and sexually transmitted diseases are usually not discussed during lectures, and examinations rarely include questions about them. Continuing education among medical staff in Egypt does not follow a clear system, and most opportunities to learn or update any medical knowledge and skills, including HIV, depend on project-based funding sources, leaving very few chances to receive HIV-related trainings. As such, it is essential that health authorities provide opportunities for health care workers to learn basic information about HIV and AIDS.
Reluctance to treat PLWHA can largely be explained also by lack of knowledge about treatment and the medical needs of PLWHA. Respondents believed that PLWHA will die soon and have no need for medical services. They also thought that PLWHA require specialist services, equipment, and facilities. Additionally, respondents also worried about the legal consequences of dealing with PLWHA as patients. As a result, it is not surprising that so many health care workers had a rather negative view regarding care for PLWHA. It is important to raise awareness and knowledge of the medical needs of PLWHA and other options such as home-based care and the importance of palliative care. In addition, it is important to shed light on the advancement of ARV medications and their availability in Egypt. Testimonials of PLWHA could be used to diminish the fear of death associated with HIV and to help health care workers realize that anyone can be infected and in need of basic medical services. Legal advice surrounding the provision of medical care for PLWHA would also be beneficial.
Respondents also feared being stigmatized by family, colleagues, and clients and by the community at large, which has been identified as a common fear among health care workers worldwide. 29 As the respondents of this study had no experience treating PLWHA, it is not possible to determine whether the community members and clients would actually stigmatize them. Interestingly, none of the respondents thought of mitigating the possibility of secondary stigma by applying for strict confidentiality in patient care. Health authorities should consider adding training sessions on medical ethics that emphasize issues important to health care workers and PLWHA such as confidentiality and the process of consent, as ethical considerations are not emphasized in the medical school curricula in Egypt.
Discussions with respondents also highlighted strong value-driven stigma. Their stereotypes and prejudice toward PLWHA are likely to influence the quality of provided care. It is common that health care workers blame PLWHA for the infection, assume that PLWHA have engaged in immoral sexual behaviors, and think that being HIV positive is shameful. 12,14,15,30,31 Changing value-based stigmatizing attitudes of health care workers toward PLWHA might be one of the most challenging tasks for the health authorities, as many of the values have religious roots. This would also increase the need to bring up medical ethics, as health care workers should know that there are rules that regulate their profession, regardless of their judgments.
Based on the lessons learned from stigma intervention studies, it is suggested that participatory methods such as games, role-play, exercises, and group discussions would be useful to reduce value-based stigma, as they can create a nonjudgmental environment that allows participants to explore personal values and behaviors. It also creates a sense of ownership in the process of developing stigma-reduction strategies in the health care setting. 32
This study makes recommendations to build effective interventions targeting health care workers to reduce the fear of infections, and to increase the understanding of medical needs of PLWHA, values and judgments against PLWHA, and fear of being stigmatized as a caregiver for PLWHA through a multifaceted approach.
Limitations of this study include the small sample size with volunteer participants recruited from 1 single hospital, which limits the generalizability of the findings. In addition, social desirability may have influenced interviews due to the sensitivity of the topics discussed. However, our findings are consistent with the existing international literature discussing barriers to providing care to PLWHA.
The study showed a complex contextual perspective of service providers in a low HIV prevalence setting related to barriers in provision of health care services for PLWHA. These barriers must be considered when aiming to increase access and quality of care provided to PLWHA.
Footnotes
Acknowledgments
The authors would like to thank the support of National AIDS program at the Ministry of Health in Egypt for their support with this research. The authors are grateful to Dr Abdelrahman Mahdy, the director of Oum El Masreyn hospital, and to the hospital administration, department managers, and other hospital staff who supported the study by assisting in the recruitment of the study participants. The authors also wish to thank Dr Montasser Kamal, MD, PhD, Acting Representative of Ford Foundation in Egypt, and Dr Susan Watts, World Health Organization of Eastern Mediterranean Region, for reviewing and providing valuable suggestions for earlier versions of this manuscript. The study is supported by Ford Foundation.
Authors’ Note
The views expressed in this article are those of the authors and do not necessarily reflect the official policy or position of the United States Navy, US Department of Defense, the US Government, or the Egyptian Ministry of Health. The study protocol was approved by the US Naval Medical Research Unit No. 3 Institutional Review Board (IRB) in compliance with all federal regulations governing the protection of human subjects.
Declaration of Conflicting Interests
The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Authors are contractors supported by military funding at the US Naval Medical Research Unit No.3. This work was prepared as part of their official duties. Title 17 U.S.C. § 105 provides that “Copyright protection under this title is not available for any work of the United sates Government.” Title 17 U.S.C. § 101 defines a US Government work as a work prepared by a military service member or employee of the US Government as part of that person’s official duties.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Supported by