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09 – Counseling Patients with HIV

Foundations for Counseling and Communication Those with HIV/AIDS

Through your professional experience and education, it is likely that you already know many foundational skills needed to successfully help clients. These skills are all the more important when working with HIV positive clients or their loved ones, considering all of the factors that we discussed in the previous section. This course will not spend a substantial amount of time on the basics of counseling (you probably already know most of these!) However, here are a few reminders to keep in mind:

  1. Begin by setting clear expectations. As a first step, remember to clarify with the client the counseling relationship, including the process and ultimate objectives. Don’t assume the client knows what is expected from counseling.  Assure confidentiality and provide a safe place (both emotionally and physically) for the counseling to take place.
  1. Determine the best approach to meet the counseling objectives. Many counseling situations work best when they are client centered, in which clients are provided with a safe space to resolve their own problems.  However, depending on the situation, you may decide to be more directive – in which case you are focusing on how to influence the client’s behavior (such as avoiding risky behavior or medication compliance). In this situation, you need to have a good knowledge of HIV and AIDS-related resources and statistics, so that you can use this information during the counseling.
  1. Acknowledge emotion, but maintain neutrality.  Maintain a neutral understanding of reactions to the client’s disclosure. Although HIV and AIDS counseling is likely to be emotional in nature, it is important to respond to the emotional tone without making assumptions or bringing your own emotions into the situation. Empathy is about listening to clients and understanding them, but not experiencing those same emotions yourself. Phrases such as “You feel…” demonstrates that you understand how the client is feeling and is a checkpoint to make sure that you are understanding their feelings correctly.
  1. Restate the problem in your own words. Articulate what the client has shared with you in a way that confirms their experience and conveys your understanding of the situation.
  1. Avoid judgments. Mental health professionals should be careful to not bring their own agenda or needs into the situation. Regardless of whether you approve of the client’s behavior or values, the counseling session should focus on the client and not the beliefs of the counselor.
  1. Follow the client’s lead, but don’t be afraid to challenge them. Allow the client to tell his or her story, and to explain their needs and initiatives in their own words. Meet your client at his or her current level, rather than trying to change their viewpoint. This includes asking open ended questions, allowing clients to revisit topics for as long as they need, and avoiding suggesting solutions or prescriptions – particularly before you develop a complete understanding of their situation and viewpoints. Remember that although you should be “for the client” this does not mean that you should always take the client’s side – sometimes it is necessary to challenge their viewpoint and lead them to think differently about the situation or problem. 
  1. Empower clients to take responsibility for themselves and their problems. Although a counselor should believe in the ability of clients to change, they should avoid rescuing the client and trying to fix the problem for them. The counseling process is about helping them through the problem-solving process and helping clients see how they can make change happen through becoming better problem solvers in their own lives.
  1. Note and remember the client’s needs. Nothing is more discouraging than sharing thoughts and feelings with someone, only to have them forget and ask you the exact same questions next time. Immediately after you talk with your client, make notes of what you talked about, particularly concerns that will be important to address during the next session.

Common counseling errors include:

  • Attempting to solve the problem for them
  • Being judgmental or evaluative
  • Not accepting the client’s feelings
  • Reassurance – such as telling them not to worry or that everything will be OK

Practical Solutions for Mental Health Professionals

Although a diagnosis of HIV or AIDS is overwhelming, clients and their loved ones should be encouraged to maintain their everyday lives as much as possible. Just because someone is HIV positive, they should not be treated as someone who can’t contribute to the community. Just like anyone else, they can lead productive lives and have a wide variety of opportunities to make decisions about how they want to live their lives.

As such, below are practical ways that you can encourage clients to continue living their lives to the fullest. You will notice these solutions are not relevant only to people living with HIV/AIDS, but to clients with a wide variety of challenges. This underscores that people living with HIV/AIDS have needs very similar to others going through difficulties – just more specifically tailored to their medical condition and the need to manage their condition.

  1. Work with them on listing out their current concerns/problems, and helping them to reflect on what they want and potential solutions (remember that they should come up with their own solutions and your job is to help them think through the process)
  2. Work with the client to think about and list his or her good qualities, possible limitations, and how to work through them
  3. Identify ways in which the client has successfully managed similar problems and concerns in the past
  4. Empower clients to make their own decisions and take control of their lives
  5. Encourage the client to use resources available such as peer support

Healthy Living

Just as with anyone else, people living with HIV AIDS can use healthy living strategies to help them stay as active and healthy as possible. As a mental health professional, it is helpful for us to encourage clients living with HIV/AIDS to maintain a healthy lifestyle, and to talk with their doctor about exercise or diet programs that are best for them.

Key steps to staying healthy while living with HIV include:

  1. Take antiretroviral medication every day, as prescribed
  2. Stay in touch with a doctor and follow their advice
  3. Eat a balanced and nutritious diet
  4. Exercise and keep fit
  5. Ask for support from friends, family, and others living with HIV

Below is an article (Lewis, 2017) written by a woman who has been living with HIV for 30 years. She explains how she has developed meaning and coping skills through her experience living with HIV and shares her experiences through 12 steps.

The Role of Mental Health Professionals in Promoting Adherence to Medication

An individual’s adherence to medication, regular medical appointments, and management of other diseases is critical for controlling HIV and reducing mortality. Patients who do not consistently take ART medication can end up with drug resistance, progression to AIDS, and overall more health problems. As discussed previously, individuals with mental illness are both more likely to be infected with HIV and also are more likely to have the HIV progress to AIDs, due to lack of adherence.

The World Health Organization (2017) outlines key lessons related to adherence (NOTE: these were created in reference to managing long-term health conditions, not only HIV).

  1. Patients need to be supported, not blamed

Despite evidence to the contrary, there continues to be a tendency to focus on patient-related factors as the causes of problems with adherence, to the relative neglect of provider and health system-related determinants. These latter factors make up the health care environment in which patients receive care and have a considerable effect on adherence. Interventions that target the relevant factors in the healthcare environment are urgently required.

Patients may also become frustrated if their preferences in treatment-related decisions are not elicited and taken into account. For example, patients who felt less empowered in relation to treatment decisions had more negative attitudes towards prescribed antiretroviral therapy and reported lower rates of adherence.

Adherence is related to the way in which individuals judge personal need for a medication relative to their concerns about its potential adverse effects. Horne et al. proposed a simple necessity-concerns framework to help clinicians elicit and address some of the key beliefs that influence patients’ adherence to medication. Necessity beliefs and concerns are evaluative summations of the personal salience of the potential costs and benefits or pros and cons of the treatment.

  1. The consequences of poor adherence to long-term therapies are poor health outcomes and increased health care costs

Adherence is a primary determinant of the effectiveness of treatment because poor adherence attenuates optimum clinical benefit. Good adherence improves the effectiveness of interventions aimed at promoting healthy lifestyles, such as diet modification, increased physical activity, non-smoking and safe sexual behavior and of the pharmacological-based risk-reduction interventions. It also affects secondary prevention and disease treatment interventions.

For example, low adherence has been identified as the primary cause of unsatisfactory control of blood pressure. Good adherence has been shown to improve blood pressure control and reduce the complications of hypertension. In Sudan, only 18% of nonadherent patients achieved good control of blood pressure compared to 96% of those who adhered to their prescribed treatment.

 In studies on the prevention of diabetes type 2, adherence to a reduced-fat diet and to regular physical exercise has been effective in reducing the onset of the disease. For those already suffering the disease, good adherence to treatment, including suggested dietary modifications, physical activity, foot care and ophthalmological check-ups, has been shown to be effective in reducing complications and disability, while improving patients’ quality of life and life expectancy. Level of adherence has been positively correlated with treatment outcomes in depressed patients, independently of the antidepressive drugs used. In communicable chronic conditions such as infection with HIV, good adherence to therapies has been correlated with slower clinical progression of the disease as well as lower virological markers.

In addition to their positive impact on the health status of patients with chronic illnesses, higher rates of adherence confer economic benefits. Examples of these mechanisms include direct savings generated by reduced use of the sophisticated and expensive health services needed in cases of disease exacerbation, crisis or relapse. Indirect savings may be attributable to enhancement of, or preservation of, quality of life and the social and vocational roles of the patients.

There is strong evidence to suggest that self-management programs offered to patients with chronic diseases improve health status and reduce utilization and costs. When self-management and adherence programs are combined with regular treatment and disease-specific education, significant improvements in health-promoting behaviors, cognitive symptom management, communication and disability management have been observed. In addition, such programs appear to result in a reduction in the numbers of patients being hospitalized, days in hospital and outpatient visits. The data suggest a cost to savings ratio of approximately 1:10 in some cases, and these results persisted over 3 years. Other studies have found similarly positive results when evaluating the same or alternative interventions. It has been suggested that good adherence to treatment with antiretroviral agents might have an important impact on public health by breaking the transmission of the virus because of the lower viral load found in highly adherent patients.

The development of resistance to therapies is another serious public health issue related to poor adherence, among other factors. In addition to years of life lost due to premature mortality and health care costs attributable to preventable morbidity, the economic consequences of poor adherence include stimulating the need for ongoing investment in research and development of new compounds to fight new resistant variants of the causative organisms.

In patients with HIV/AIDS, the resistance of the virus to antiretroviral agents has been linked to lower levels of adherence by some researchers, while others have suggested that resistant virus is more likely to emerge at higher levels of adherence. Although they appear to be contradictory, both describe the same phenomenon from a different starting point. At the lower end of the spectrum of adherence, there is insufficient antiretroviral agent to produce selective pressure, so the more adherence rates increase the higher the likelihood that resistance will appear. At the higher levels of adherence, there is not enough virus to become resistant, thus the less adherent the patient, the greater the viral load and the likelihood of resistance. Some of the published research has suggested that when adherence rates are between 50% and 85%, drug resistance is more likely to develop. Unfortunately, a significant proportion of treated patients fall within this range. The “chronic” investment in research and development could be avoided if adherence rates were higher, and the resources could be better used in the development of more effective and safer drugs, or by being directed to the treatment of neglected conditions. There is growing evidence to suggest that because of the alarmingly low rates of adherence, increasing the effectiveness of adherence interventions may have a far greater impact on the health of the population than any improvement in specific medical treatments. We strongly support the recommendations of the Commission on Macroeconomics and Health on investing in operational research “at least 5% of each country proposal for evaluating health interventions in practice, including adherence as an important factor influencing the effectiveness of interventions.

  1. Improving adherence also enhances patient safety

Because most of the care needed for chronic conditions is based on patient self-management (usually requiring complex multi-therapies, the use of medical technology for monitoring and changes in the patient’s lifestyle, patients face several potentially life-threatening risks if health recommendations are not followed as they were prescribed. Some of the risks faced by patients who adhere poorly to their therapies are listed below.

  • More intense relapses. Relapses related to poor adherence to prescribed medication can be more severe than relapses that occur while the patient is taking the medication as recommended, so persistent poor adherence can worsen the overall course of the illness and may eventually make the patients less likely to respond to treatment.
  • Increased risk of dependence. Many medications can produce severe dependence if taken inappropriately by patients. Good examples are diazepam and opioid-related medications.
  • Increased risk of abstinence and rebound effect. Adverse effects and potential harm may occur when a medication is abruptly discontinued or interrupted. Good adherence plays an important role in avoiding problems of withdrawal (e.g. as seen in thyroid hormone replacement therapy) and rebound effect (e.g. in patients being treated for hypertension and depression), and consequently decreases the likelihood that a patient will experience adverse effects of discontinuation (58,59).
  • Increased risk of developing resistance to therapies. In patients with HIV/AIDS, the resistance to antiretroviral agents has been linked to lower levels of adherence (48,60). Partial or poor adherence at levels less than 95% can lead to the resumption of rapid viral replication, reduced survival rates, and the mutation to treatment-resistant strains of HIV (61). The same happens in the treatment of tuberculosis where poor adherence is recognized as a major cause of treatment failure, relapse and drug resistance (62,63).
  • Increased risk of toxicity. In the case of over-use of medicines (a type of nonadherence), patients are at an increased risk of toxicity, especially from drugs with accumulative pharmacodynamics and/or a low toxicity threshold (e.g. lithium). This is particularly true for elderly patients (altered pharmacodynamics) and patients with mental disorders (e.g. schizophrenia).
  • Increased likelihood of accidents. Many medications need to be taken in conjunction with lifestyle changes that are a precautionary measure against the increased risk of accidents known to be a sideeffect of certain medications. Good examples are medications requiring abstinence from alcohol (metronidazole) or special precautions while driving (sedatives and hypnotics).
  1. Adherence is an important modifier of health system effectiveness

Health outcomes cannot be accurately assessed if they are measured predominantly by resource utilization indicators and efficacy of interventions.

The economic evaluation of nonadherence requires the identification of the associated costs and outcomes. It is logical that nonadherence entails a cost due to the occurrence of the undesired effects that the recommended regimen tries to minimize. In terms of outcomes, nonadherence results in increased clinical risk and therefore in increased morbidity and mortality.

For health professionals, policy-makers and donors, measuring the performance of their health programs and systems using resource utilization endpoints and the efficacy of interventions is easier than measuring the desired health outcomes. While such indicators are important, over-reliance on them can bias evaluation towards the process of health care provision, missing indicators of health care uptake which would make accurate estimates of health outcomes possible (64). The population-health outcomes predicted by treatment efficacy data will not be achieved unless adherence rates are used to inform planning and project evaluation.

  1. Improving adherence might be the best investment for tackling chronic conditions effectively

Studies consistently find significant cost-savings and increases in the effectiveness of health interventions that are attributable to low-cost interventions for improving adherence. In many cases investments in improving adherence are fully repaid with savings in health care utilization (33) and, in other instances, the improvement in health outcomes fully justifies the investment. The time is ripe for large scale, multidisciplinary field studies aimed at testing behaviorally sound, multi-focal interventions, across diseases and in different service-delivery environments.

Interventions for removing barriers to adherence must become a central component of efforts to improve population health worldwide. Decision-makers need not be concerned that an undesired increase in health budget will occur due to increasing consumption of medications, because adherence to those medicines already prescribed will result in a significant decrease in the overall health budget due to the reduction in the need for other more costly interventions. Rational use of medicines means good prescribing and full adherence to the prescriptions.

Interventions that promote adherence can help close the gap between the clinical efficacy of interventions and their effectiveness when used in the field, and thus increase the overall effectiveness and efficiency of the health system. For outcomes to be improved, changes to health policy and health systems are essential. Effective treatment for chronic conditions requires a transfer of health care away from a system that is focused on episodic care in response to acute illness towards a system that is proactive and emphasizes health throughout a lifetime. Without a system that addresses the determinants of adherence, advances in biomedical technology will fail to realize their potential to reduce the burden of chronic illness. Access to medications is necessary, but insufficient in itself to solve the problem (12). Increasing the effectiveness of adherence interventions might have a far greater impact on the health of the population than any improvement in specific medical treatments (65).

  1. Health systems must evolve to meet new challenges

In developed countries, the epidemiological shift in disease burden from acute to chronic diseases over the past 50 years has rendered acute care models of health service delivery inadequate to address the health needs of the population. In developing countries this shift is occurring at a much faster rate. The health care delivery system has the potential to affect patients’ adherence behavior. Health care systems control access to care. For example, health systems control providers’ schedules, length of appointments, allocation of resources, fee structures, communication and information systems, and organizational priorities.

The following are examples of the ways in which systems influence patients’ behavior:

  • Systems direct appointment length, and providers report that their schedules do not allow time to adequately address adherence behavior (66).
  • Systems determine fee structures, and in many systems (e.g. fee-for-service) the lack of financial reimbursement for patient counselling and education seriously threatens adherence-focused interventions.
  • Systems allocate resources in a way that may result in high stress and increased demands upon providers which, in turn, have been associated with decreased adherence in their patients (67).
  • Systems determine continuity of care. Patients demonstrate better adherence behavior when they receive care from the same provider over time (68).
  • Systems direct information sharing. The ability of clinics and pharmacies to share information on patients’ behavior regarding prescription refills has the potential to improve adherence. • Systems determine the level of communication with patients. Ongoing communication efforts (e.g. telephone contacts) that keep the patient engaged in health care may be the simplest and most cost-effective strategy for improving adherence.

Few studies have evaluated programs that have used such interventions, and this is a serious gap in the applied knowledge base. For an intervention to be truly multi-level, systemic barriers must be included. Unless variables such as these are addressed, it would be expected that the impact of the efforts of providers and patients would be limited by the external constraints.

  1. A multidisciplinary approach towards adherence is needed. The problem of nonadherence has been much discussed, but has been relatively neglected in the mainstream delivery of primary care health services. Despite an extensive knowledge base, efforts to address the problem have been fragmented, and with few exceptions have failed to harness the potential contributions of the diverse health disciplines. A stronger commitment to a multidisciplinary approach is needed in order to make progress in this area. This will require coordinated action from health professionals, researchers, health planners and policy-makers.