Supporting Patients in Care

* Based on Sheffield and Casale, see "References."

Background

Patients infected with HIV face a complex array of medical, psychological, and social challenges. A strong provider-patient relationship, the assistance of a multidisciplinary care team, and frequent office visits are key aspects of care. Through both the specific services they provide and their overall approach to patients, clinics can have a substantial impact on the quality of care for HIV-infected persons. For example, a patient-centered clinic environment in which education and supportive interventions are emphasized will greatly enhance patients' knowledge about HIV infection. Improving patients' skills in self-management will increase their participation in making health care decisions and provide a stimulus for more active involvement in their own care.

Special Challenges of Caring for HIV-Infected Patients

Providers need to be mindful of several special issues, including the following:

  • Many medical, psychological, and social challenges confront persons living with HIV. The delivery of effective care usually requires a strong provider-patient relationship, a multidisciplinary approach, and frequent office visits.
  • The stigma associated with HIV places a major psychosocial burden on patients. Stigma and discrimination must be addressed through strong confidentiality protections, emotional support, and cultural sensitivity. It is important to inform all patients of their rights and responsibilities in a language or manner that is respectful and understandable.
  • Underserved racial and ethnic groups are overrepresented among people with HIV. Efforts to understand and acknowledge the beliefs of patients from a variety of cultural backgrounds are necessary to establish trust between providers and patients. Cultural competency is imperative in the field of HIV care.
  • Providers play a key role in the public health system's HIV prevention strategy. Disease reporting, partner notification, and risk assessment are important aspects of care. Patients may see this as threatening and may need education and emotional support in order to participate in this process. Patients need to be informed of their rights under the Health Insurance Portability and Accountability Act (HIPAA) and understand the public health implications of HIV.
  • Many patients have inaccurate information about HIV infection that can heighten their anxiety, sabotage treatment adherence, and interfere with prevention behaviors. Patients need assurance that HIV is a treatable disease and that, with successful treatment, they can experience a normal life expectancy. They also need to hear explicitly that HIV may be transmitted through sexual contact, injection drug use and other blood contact, and perinatal exposure, and that they can take specific measures to prevent transmission to others.
  • Many patients need the support that only a peer can provide. Peer educators should be available to help patients navigate difficult health care systems, medication regimens, and lifestyle changes.
  • HIV-infected patients need to have an active voice in their health care. Patient advisory groups can provide valuable program evaluation, which can be used to promote the patient-centered focus of the health care system.

These issues are discussed further in the sections that follow.

Components of HIV Care and Ways to Enhance Care

Important Components of HIV Care

A first step in ensuring that patients are "engaged in care" is the establishment of systems that include mechanisms for coordination and communication of care.

  • Clinics must offer a nonjudgmental and supportive environment, because of the sensitive nature of issues that must be discussed.
  • A multidisciplinary approach, utilizing the special skills of nurses, pharmacists, nutritionists, social workers, case managers, patient navigators, and others is highly desirable to help address patient needs regarding housing, medical insurance, emotional support, financial benefits, mental health and substance abuse counseling, and legal issues.
  • Providers and other clinic staff members should be prepared to conduct appropriate interventions and make timely referrals to community resources and institutions.
  • The primary provider should coordinate the various aspects of health care, with close communication among providers across disciplines.
  • Individual office visits should be long enough to allow time for thorough evaluation.
  • Providers must be able to see patients as frequently as their medical and psychosocial needs require, and clinic scheduling should be flexible so that patients with acute problems can be seen quickly and new patients can receive and access care in a timely manner.
  • A range of medical resources, including providers with subspecialty and laboratory expertise, needs to be established. Co-locating services within testing and counseling sites or within HIV clinics is an excellent way to enhance patient compliance (see chapter Clinic Management).
  • Patient education is a vital aspect of care that begins during the initial evaluation and continues throughout the course of care (see chapter Patient Education).

Taking Steps to Enhance Care

Providing comprehensive care for HIV-infected patients requires a patient-centered focus, a multidisciplinary team, and a willingness to spend time on building relationships with patients. Providers should do the following:

  • With the help of case management agencies, counseling and testing centers, and patient-care navigators, provide quick and easy access to care to those newly diagnosed and entering into treatment.
  • Front-end staff members need to be knowledgeable, compassionate and efficient with the initial patient contact in order to establish a warm and welcoming environment of care for the new patient.
  • Make available self-management education to help patients identify problems, teach decision making techniques, and support patients to take appropriate actions to make necessary changes in their lives.
  • Offer care in a patient-centered environment that allows the patient to actively participate in care decisions and provides patient-specific education.
  • Encourage patients to learn all they can about their condition.
  • Give accurate information regarding prognosis and antiretroviral therapy.
  • Foster an atmosphere of nonjudgment, trust, and openness.
  • Anticipate that significant time will be required for patient education.
  • Outline the range of clinic operations and state the expectations for provider-patient communication. Outline how appointments are scheduled and how prescription refill requests are managed.
  • Arrange to see patients with acute problems quickly. Establish a triage system to provide efficient service delivery.
  • Ensure that there are open lines of communication with all patients to receive and answer questions, assess treatment effectiveness, and manage side effects.
  • Provide safe and secure access for patients to communicate with staff. Patient portals can provide quick and direct access to nonemergent information and can provide accurate answers to questions that arise between visits.

Helping Patients Cope with Emotional Issues

Patients coming to terms with HIV infection often experience a range of emotions, including anger, fear, shock, disbelief, sadness, and depression. Loss is a major issue for patients with HIV because health, employment, income, relationships with friends, lovers, and family, and hope all may be threatened. Many patients feel overwhelmed, and even patients who seem to be adjusting reasonably well can find it difficult to keep all of the many appointments that may be scheduled as they initiate care. Providers need to recognize that patients' emotional states affect their ability to solve problems and attend to important medical or social issues. Providers can do the following:

  • Assess each patient's emotional state and the availability of friends and family for emotional support. Some patients will need counseling to help them decide whether to disclose their diagnosis to friends, family, or employers as well as support in dealing with HIV infection. Patients often feel hesitant about seeking emotional and practical support.
  • Deliver important information in easily understood terms and in small amounts. Reassess patient understanding of crucial information at subsequent visits, and repeat important information as necessary. Realize that many visits may be required before patients are comfortable with their care and the navigation of the health care system.
  • Screen for anxiety, depression (including suicidal ideation), and substance use.
  • Refer patients to community resources for crisis counseling, support groups, and, if appropriate, psychiatric treatment to help them achieve emotional stability.
  • Assist patients in finding a case manager or patient navigator who can help them learn to navigate the health care system and reduce anxiety about keeping their lives in order.
  • Assist patients in linking to social work services to assist with enrollment into medical insurance and to meet other social service needs, such as housing, food, child care, and substance abuse treatment.

Helping Patients Develop Self-Management Skills

Self-management support is defined by the Institute of Medicine as the systematic provision of education and supportive interventions by health care staff to increase patients' skills and confidence in managing their health problems, including regular assessment of progress and setbacks, goal setting, and problem solving.

It can be viewed as a portfolio of techniques and tools to help patients choose healthy behaviors, and as a fundamental shift of the provider-patient relationship toward a collaborative partnership.

After patients have come to terms with their HIV infection, they are ready to embark upon the lifelong process of caring for themselves. Patient self-management involves adopting new health behaviors and requires changes that will occur as a progression of motivational skills. Motivation is defined as the "probability" that a person will enter into, continue, and adhere to a specific change strategy. Patients will feel empowered as they gain the skills and confidence to be active participants in their care.

The following practices should be adopted to foster patient self-management:

  • Train staff at all levels on patient self-management concepts and how to incorporate them into care.
  • Create an atmosphere conducive to learning these self-management skills, including but not limited to the following areas:
  • Problem solving
  • Medication issues
  • Working with the health care team
  • Planning for the future
  • Goal setting
  • Dealing with difficult emotions
  • Healthy eating
  • Advance directives
  • Sex, intimacy, and disclosure
  • Adopt a team approach to health care with the patient as the central team player (patient-centered care).
  • Incorporate problem-solving skills into all education efforts.
  • Allow the patient time to set small obtainable goals as "first steps" in self-management.
  • Realize that many appointments with multiple members of the health care team may be necessary before a patient has all the necessary skills.

Helping Patients Make Positive Changes in Health Care Behaviors

Regardless of whether a patient is new to care or has been in care for many years, the burden of a chronic disease is wearing. Positive change in behavior needs to be an ongoing focus of patient-centered care. After patients have self-management skills, they still need help setting action plans for their health care. The provider needs to help patients adopt realistic action plans by:

  • Realizing that new health behaviors require motivation and occur as a progression of learned skills
  • Bolstering patients' self-confidence by adopting action plans that:
  • Are realistic
  • Are something that patients find of value (i.e., something they want to do)
  • Are reasonable (it is better to under-estimate and exceed the goal than to overestimate and fail)
  • Are action-specific, with small, obtainable goals

Peer Educators and Patient Advisory Groups

Patients need to be active participants in making decisions regarding their health care. Peer educators and patient advisory groups can help patients become more involved in their care.

In order to best support patients, it is helpful to have peer educators available for them during initial and subsequent visits. This helps to decrease patient anxiety and promotes a patient-centered atmosphere. Providers need to realize that peer educators are HIV-infected individuals who:

  • Provide a unique approach to client-centered care
  • May attend clinical sessions with patients and provide them with referrals for one-on-one counseling and support
  • Are "seasoned clients" who have a desire to help patients in their care
  • Work under the same confidentiality guidelines as all other staff members

Another valuable tool for patient-centered care is the use of a patient advisory group (PAG). The PAG is the voice of the people that the clinic serves. The HIV program will listen to this group's suggestions and use them to improve patient satisfaction and clinic functionality. The PAG's role could involve identifying clinic problems, recommending changes in the care delivery system, and discussing new treatment approaches. A successful PAG does the following:

  • Provides comprehensive, individualized client-based education to all active patients
  • Encourages clients to actively participate in treatment decisions and to involve family members and others who comprise their support system
  • Designates members who facilitate meetings, promote upcoming meetings, coordinate speakers, and provide feedback to clinic staff and management
  • Allows members to serve as cofacilitators, choose topics of discussion, set meeting guidelines, and invite new members
  • Fulfills requirements of grants and other funding streams to have enhanced patient involvement

Stigma and Discrimination

Stigma is founded on fear and misinformation. Theodore de Bruyn observed that stigma is associated with HIV because, "It is a life-threatening disease; people are afraid of contracting HIV; it is associated with behaviors that are considered deviant; a belief that HIV has been contracted due to unacceptable lifestyle choices; and, some believe it is the result of a moral fault which deserves punishment."

Stigma can adversely affect how patients are perceived by others and how they view themselves. The stigma associated with HIV/AIDS is such that individuals known to be or suspected of being infected with HIV may be excluded from community activities and suffer isolation or abandonment. Some patients may feel ambivalent about seeking medical care if, by doing so, they risk disclosing their condition. Others may have learned from experience to expect rejection and therefore may not trust care providers. It is essential for providers to be supportive of patients who are dealing with the burden of stigma.

Stigma of Fear of Contagion

Unfortunately, patients and their families are often unaware that routine household contact with a person with HIV poses no risk of contagion. They should be educated about that, and also taught what to do in situations that do pose risk, such as when bleeding occurs. Clinic staff members must model behavior in this area. For example, gloves should be worn only as appropriate during physical examinations and as consistent with universal precautions. There should not be separate facilities or special procedures for HIV-infected patients.

Stigma Associated with Being Gay, Lesbian, Bisexual, or Transgender

Demonstrating respect and providing excellent care to patients with various cultural backgrounds, beliefs, and sexual orientations are central to medical professionalism. Providers should approach patients in an open and nonjudgmental fashion and be familiar with medical management issues unique to these populations, such as appropriate screening for sexually transmitted diseases for men who have sex with men (MSM) and hormonal treatment for transgender patients. Clinic staff members also must be respectful and supportive; having a staff that is familiar with lesbian, gay, bisexual, and transgender (LGBT) cultures is a natural way to create a welcoming environment. Providers and social workers should be aware of community agencies with resources available to people who are lesbian, gay, or transgender. In addition, providers and clinic staff members should be aware of special legal issues that affect these populations. For example, designating a durable power of attorney for medical decision making can be particularly important in states that do not recognize same-sex partners or spouses as legal next of kin.

Other Special Cultural Issues

African-Americans, Hispanics, and some immigrant groups are disproportionately affected by HIV, and many people of color with HIV infection have major socioeconomic problems such as poverty, homelessness, lack of medical insurance, lack of acculturation, and undocumented immigration status. Many young people with HIV face similar issues. All these obstacles can make accessing health care difficult and attending to health problems less of a priority for the individual. A patient's cultural background influences health-related beliefs and behaviors, and personal or historical adverse experiences may make some patients distrustful of medical care. In addition, some patients' distrust of medical research can impede their willingness to access new drug therapies. Culturally competent communication between provider and patient may substantially affect adherence with therapies. For all these reasons, providers should do the following:

  • Carefully explore what each patient believes about his or her health, what would be appropriate treatment, and who should be involved in medical decision making.
  • Use professional interpreters to help overcome language barriers.
  • Use case managers and peer educators to help bridge social barriers. The team of peer educators should be culturally diverse in order to be effective with all minority groups.

Confidentiality and Disclosure

Confidentiality of medical information is always mandatory, but the stakes are particularly high for patients infected with HIV, who risk losing medical insurance, employment, and the support of friends or family if their diagnosis is disclosed inappropriately. Although people with HIV infection are protected against discrimination under provisions of the Americans with Disabilities Act, discrimination can be difficult to prove, and there are strict time limits after which charges of discrimination can no longer be made.

Protecting Patient Confidentiality

Adherence to the HIPAA regulations is an important aspect of protecting patient confidentiality. Personnel policies should reinforce measures such as requirements that papers and computer screens containing patient-identifying information not be left unattended and should include provisions for documenting whether phone messages can be left for the patient, and if so, with whom.

Helping Patients Disclose Their HIV Status

Patients who have a support network function better than those who are isolated. However, patients' fears of disclosure are often well founded, and providers must find a balance between accepting patients' unwillingness to disclose their HIV status and the need to develop support networks. Patients may find support groups or individual psychotherapy sessions beneficial in deciding when to disclose, and to whom.

The sex and needle-sharing partners of people with HIV need to be informed about their possible exposure to HIV. Local health departments can either assist patients in making these disclosures or provide anonymous partner notification for them.

A patient-centered clinic staff can help patients with disclosure. For example, staff members could encourage patients to bring their partners to one of their clinic or counselor appointments in order to disclose their HIV serostatus in the context of the clinic visit. This could allow the health care professional to answer the partners' questions and would provide a neutral environment for the disclosure discussion. Risk of intimate-partner violence should be assessed.

Public Health Role of Providers in the HIV Epidemic

Primary care providers must consider their public health role in curbing the spread of HIV. The incidence of HIV remains unacceptably high, and may be increasing in some populations, especially in communities with relaxed adherence to safer sex recommendations.

All AIDS diagnoses and, in some states, all positive HIV test results must be reported to the state health department. State laws vary in reporting requirements and subsequent notification of potentially exposed individuals (see the Clinician Consultation Center Compendium of State HIV Testing Laws), but the name of the source contact is never divulged to the person being notified. Providers should become familiar with the laws of their jurisdiction by contacting their health department. (The Association of State and Territorial Health Officers provides links to all state health departments.) Providers are required to do the following:

  • Inform patients that their AIDS diagnosis or positive HIV status (depending on individual state requirements) must be reported to the state health department, tell them whether partner notification is required, and explain what they should expect regarding efforts that must be made by the patient, provider, or health department to notify sex partners or individuals who may have been exposed to HIV through their needle sharing. Assure them that their names are always kept confidential and are never given to potentially exposed individuals by the health department.
  • Carefully assess patients' risk-taking behaviors, educate them regarding HIV transmission, and perform screening for sexually transmitted diseases. (See chapters Preventing HIV Transmission/Prevention with Positives, Initial History, Initial Physical Examination, and Initial and Interim Laboratory and Other Tests.)
  • Provide counseling to encourage safer sexual practices and make referrals to drug rehabilitation or needle exchange centers as indicated. (See chapter Preventing HIV Transmission/Prevention with Positives.)
  • Provide information about the role of antiretroviral therapy in reducing the risk of HIV transmission.

References

  • de Bruyn T. HIV/AIDS and Discrimination: A Discussion Paper. Montreal: Canadian HIV/AIDS Legal Network and Canadian AIDS Society; 1998. Accessed December 1, 2013.
  • Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press; 2001. Accessed December 1, 2013.
  • Rollnick S, Miller WR. What is motivational interviewing? Behav Cogn Psychother. 1995;23:325-334.
  • Sheffield JVL, Casale GA. Approach to the Patient. In: A Guide to Primary Care of People with HIV/AIDS, 2004 Edition. Bartlett JG, Cheever LW, Johnson MP, et al., eds. Rockville, MD: U.S. Department of Health and Human Services; 2004:5-11.