Contextual factors and considerations
South Africa has emerged from the HIV/AIDS denialist period, with a strong national health policy, increased access to ART, prevention of mother-to-child transmission (PMTCT), HIV counselling and testing (HCT) and other interventions which have seen HIV/AIDS become a chronic rather than a fatal disease. The recent United Nations AIDS (UNAIDS 2012) regional fact sheet reinforces this as evidenced in the following statistics:
- In 2011, there were an estimated 1.8 million new HIV infections in sub-Saharan Africa compared to 2.4 million in 2001. This is a 25% decline.
- Between 2005 and 2011, AIDS-related deaths declined by 32% to 1.2 million.
- PMTCT decreased the number of children newly affected by HIV by 24% in sub-Saharan Africa.
- There has been a significant uptake of HIV testing.
- South Africa achieved a 60% coverage for HIV treatment compared to a global figure of 54%.
An estimated 5.6 million people were living with HIV and AIDS in South Africa (UNAIDS 2012).
Being cognisant of the many continued deaths as a result of HIV infection, the ever-increasing number of people enrolled onto the ART regimen and long-term health interventions for PLWHA, their families and orphans and vulnerable children (OVC), it becomes important for occupational therapists not only in South Africa but in Africa (which is known to carry the greatest burden of the disease) (UNAIDS 2012), and other countries to grapple with intervention programmes. These look at rehabilitation, remediation, promotive and preventative strategies, palliative care as well as advocacy. This chapter attempts to specifically address the area of HIV/AIDS in mental health and psychiatry as it has been an oversight in HIV intervention programmes.
This section of the chapter will serve to put HIV in a contemporary perspective reviewing the virology, transmission, natural history of the virus as well as the how’s and why’s of the burden of the disease with relevant practice and professional issues.
Antiretrovirals
ARVs are commonly used as part of the treatment regimen for PLWHA globally. South Africa has seen a change in ARV roll-out together with a change in the government’s drug protocol as a result of the side effect profile of some drugs in the original regimen. ARV roll-out continues apace with the government announcing on the 30 November 2012 that as from April 2013, PLWHA who are on ARV treatment will no longer have to take three tablets but only need one fixed-dose combination tablet per day. This will help adherence as well as being more discrete in terms of stigma and the sick role. The combination tablet regimen has greater efficacy with a lesser side effect profile. Occupational therapists should however familiarise themselves with the adverse drug reactions likely to be experienced as well as the degree of the reaction to this medication. The degree warrants differing treatment ranging from watchful to emergency treatment of life-threatening effects. Further to these new developments being introduced to the government roll-out is a third ARV regimen to combat drug-resistant strains that have mutated (Government Communication and Information System 2012).
Immune reconstitution inflammatory syndrome
This is a paradoxical condition that occurs on initiation of ARVs when the viral load is high and the CD4 count is very low. As a result of this, the body is unable to mount an immune response to OIs that are present within the person. Thus, on the immune system becoming reconstituted, there is often a large inflammatory response which appears to worsen the condition. Without careful monitoring and follow-up, immune reconstitution inflammatory syndrome (IRIS) can be life-threatening. The person needs to be made aware of the chance that IRIS could occur so that he/she should seek help early for an inflammatory response, investigation of the OI and subsequent treatment.
Medication adherence
ARVs work well when there is medication adherence as the medication reaches suitable levels within the body to prevent replication of the virus at a high level. The expected response is that within six months of initiating ARVs, viral suppression occurs. Should there be non-adherence, then virus mutation can occur, leading to eventual drug resistance. This is important as in resource-restricted countries such as South Africa, there have only been two drug regimens on offer. Further so-called salvage therapy was only offered at tertiary hospitals often only on research grounds. To suppress the virus, an adherence rate of close to 100% is necessary. Adherence with chronically ill patients is very difficult to attain and often falls below 95%. According to Wilson et al. (2008), client-related, regimen-related and disease-related factors affect adherence negatively or positively. Disclosure to others promotes adherence as pill taking is not hidden, and non-disclosure is seen to reduce adherence. A motivated, knowledgeable person in terms of HIV will adhere, whereas a person with mental illness including depression and substance abuse will reduce adherence. If the counselling around adherence is provided to the client in his/her home language, adherence improves. A chaotic, non-structured daily routine reduces adherence levels. The simpler the regimen with a reduced side effect profile and easy free access, the greater the adherence.
Addressing myths and misconceptions
For many years, people have ridiculed misconceptions such as sexual intercourse with a virgin will cure HIV. Unfortunately, misconceptions such as these are not a thing of the past, and 15 years later, such tales are known to still cause inhumane behaviour to be perpetrated on others. Contemporary misconceptions are that sexual intercourse with a young child, old woman, goat and dog and taking a shower following unprotected sex prevent HIV transmission. Traditional medication and rituals are also thought to cure a person as the authors have encountered students at university who believe that ‘true Christians’ are cured if they pray hard enough. These misconceptions, although at times based on cultural and religious beliefs, regrettably may lead to behaviour not condoned by general society and/or criminal acts such as rape and murder.
Practitioners need to use educational sessions to clarify the nature and virology of the virus and the chance of reinfection by another strain. Increasing understanding can be through peer educators or the occupational therapist and the local ‘induna’ (chief) or community leader(s).
Targeting the youth
Prevalence rates indicate that the youth, especially young women, remain the highest at-risk population group. Women aged 15–24 show that 13.9% are living with HIV, while young men peak at ages 20–24 with 5.1% living with HIV. This translates to mean that young women between the ages of 15 and 24 years are four times more likely to have HIV than males of the same age. On average, young females become HIV positive about five years earlier than males, and both genders have increased vulnerability to HIV risk if they are non-schoolgoing. Completing secondary school protects both genders against HIV especially young women (Republic of South Africa 2012).
For occupational therapists working within schools in communities as well as with youth, preventative and promotive programmes need to be implemented. There is new research that has begun looking at cash incentive transfers to young women to remain HIV negative with some success (de Walque 2012). It is the contention of the authors that incentive programmes such as enrolment for the babies of schoolgoing mothers in crèches for the mothers to return to school, provision of milk powder and school uniforms, etc. can be part of such incentive programmes. Self-esteem, value clarification and goal setting are imperative for the youth at the 10–15 age group in order to create behavioural change and enhance wellness-based occupational choices prior to sexual debut. Occupational deprivation and alienation that are often contextual as well as historical need to be addressed through outreach programmes, after-school social clubs, role modelling, access to resources and assistance with balancing threefold workloads of childcare, schooling and household chores.
Maternal mortality
Data published by the South African Government in its Global Response report (2012) shows a reduction in HIV-related mortality particularly among women. In addition, mother-to-child transmission of HIV has declined from 8.5% in 2008 to 3.5% in 2010, a direct impact of the accelerated programme for the elimination of vertical transmission. More women are being screened and taking up treatment, and early infant diagnosis (EID) is preventing HIV progression and transmission. Maternal deaths related to childbearing/pregnancy and HIV/AIDS complications are well documented. HIV/AIDS results in 19% of all deaths in women aged 15–44 years. This resulted in an increased risk of pregnancy-related deaths (Abdool-Karim et al. 2010).
Occupational therapists therefore need to develop preventative and promotive programmes as well as be advocates for this often forgotten section of our treatment population. This could be in the form of educational groups, support groups, wellness programmes, vocational training and home industry or entrepreneurship skills. Access to health care should ensure such programmes occur at all levels of treatment from community to clinics and to hospitals and schools. It is only through adequate maternal intervention that the Millennium Development Goals 5 and 6 (WHO 2013) on maternal health will be attained, as HIV/AIDS remains the biggest stumbling block to its attainment in Africa.
Psychiatric sequelae
Much has been written about psychiatric sequelae of HIV/AIDS on neuropsychiatric systems, both as a result of the virus itself (e.g. AIDS dementia and OIs) as well as a result of ARV adverse reactions. With improved regimens and viral load suppression, such incidents will naturally become less frequent. These include depression, anxiety, learning disorders, behavioural change and dementia. Depression and low mood states are also linked to existential distress of having an incurable illness as well as the burdens of non-disclosure and grief.
Stigma
HIV-related stigma refers to the negative beliefs, feelings and attitudes and negative treatment towards people living with HIV or the families, caregivers and friends of PLWHA. Often, the stigma is unjustified and related to misconception of stereotypes, for example, ‘homosexuals’ are spreading the illness, or people that lose weight are suspected of having HIV/AIDS. Behaviours associated with the HIV-related stigma may include labelling and name-calling, abandonment, violence, alienation, embarrassing the individual, blaming, punishment, rejection and ridicule.
People who experience the stigma often report feelings of shame, depression, worthlessness and helplessness. This further implicates uptake of ART, adherence and disclosure as well as lifestyle choices where the person may refrain from occupations, thus reducing quality of life and general wellness. Stigma and discrimination also affect prevention programmes by making people afraid to seek information and decreased awareness of how to reduce HIV transmission risk.
Practice guidelines for occupational therapists in implementing intervention programmes for HIV/AIDS-related conditions
The impact of this disease upon the bio-psycho-social systems and spiritual life of each PLWHA demands an integrated and holistic approach to intervention. Apart from the extensive and ongoing medical treatment required, the disease also necessitates the involvement of all role players at all levels/stages of HIV/AIDS. This includes not only the multidisciplinary team but also the family and/or caregivers and community within which the person lives. The person’s level of immunity (whether on ARV treatment or not) and their current health status has a direct impact upon the approach to intervention at each stage of the disease process. Initially, intervention programmes may be no different from any person with, for example, a similar neurological or psychiatric problem. However, as the opportunistic conditions advance, immunity reduces and co-morbid diseases and syndromes develop, or, on a more positive note, as the person begins to respond to the ARV therapy, the intervention programmes either become more multifaceted and complex, or they become outcome based with a focus on health and occupational maintenance.
Surveys by non-governmental representatives in the UNAIDS (2012, p. 124) Programme Coordination Board indicate that PLWHA and key populations at risk ‘continue to experience high levels of HIV-related stigma and discrimination’ and that just under 50% of the survey reported that this came from family members and 30% came from employment agencies. It is estimated that there are in the region of 30 million people who are of working age living with HIV and many of them face discrimination and prejudice in their workplaces. This reinforces the need for ongoing enlightenment of all role players in the challenge to better understand the condition and to provide the necessary support for PLWHA.
Occupational therapists need to actively engage with stigma at a person’s level as well as through community and social forums, empowerment programmes, strategies as well as education campaigns. The improvement of self-esteem, self-worth and the experience of mastery and skill is beneficial to PLWHA. Self-negating talk and feelings of marginalisation need to be assessed at an individual level, and at the same time, interaction between the various stakeholders and PLWHA needs to be fostered. Practitioners should ensure that they are role models of tolerance, inclusion and justice.
Adherence to treatment regimens is critically important for longevity and quality of life and thus merits some discussion. Improving understanding of the disease, ARVs and how to live a healthy life needs to be included in the education sessions or pretreatment counselling. This not only needs to be in the patient’s first language but also expressed at an appropriate level to ensure understanding. Pamphlets and other educational material can effectively supplement the training sessions. The sessions can occur alone, with a ‘buddy’ or mentor who may also benefit from understanding the treatment and thus assist monitoring and motivation, or in a group setting. The group setting is seen to be a valuable opportunity for sharing and universality to occur as well as the promotion of hope through meeting with others who are coping and living well. This is also an economical and time-sparing technique in resource-poor countries. Groups can evolve to patient-initiated groups when the group has developed cohesion and leaders have emerged.
People who do not virally suppress are singled out for intensive further education, and at this point, it is important that the barriers to adherence need to be discussed. These could be so-called intentional (e.g. stigma) or unintentional factors (e.g. forgetting) (Gadkari & McHormey 2012). Techniques to allow the patient to discover his/her own solutions to the barriers need to be utilised, and the person can be contracted to adhere. Further to this, depression and anxiety levels need to be assessed as poor psychomotor activation and low motivation levels may be behind the poor adherence.
Relationship issues such as non-disclosure and poor support need to be addressed as well as establishing habits, routine, structure and a specific time and place for the ARVs. Reminder mechanisms such as a medication log, cell phone alarm and pillbox can be utilised to good effect. Finally, the clinician should ensure correct dosage and whether there has been poor absorption as a result of other factors such as contraindicated medications, traditional medications, emetics and so forth.
Practitioners should be aware of the dilemmas caused by the receipt of ‘grants’ (i.e. monthly payments) and their discontinuation should the condition of the patient improve. Anecdotal evidence suggests that non-adherence may happen in an attempt to retain such a grant.
Occupational therapy intervention settings
Current anecdotal and practice experience of the authors suggests that there are three broad categories of PLWHA most frequently encountered by occupational therapists either in the hospital/institutional, community and/or hospice settings.
The acutely ill patient (stage 2/3)
This patient is usually hospitalised and may have several OIs. These patients may or may not have started on ARV therapy and may be experiencing IRIS, failure to respond to ARVs or OI sequelae. They are extremely ill and very physically, mentally and spiritually vulnerable coupled with an inability to manage activities of daily living (WHO 2006).
Occupational therapy intervention at this stage and the approach and attitude of the occupational therapist is crucial in facilitating the PLWHA transition to the next phase of recovery. A gently coaxing and encouraging approach at this stage is required. Patients should be exposed to carefully structured situations in which they may renew their efforts at being independent in self-care. They should be exposed to enjoyable, carefully selected and meaningful occupations, which may coax them into experiencing hope that all is not lost and that there is a possibility of survival and quality of life. This in turn may well positively influence their immune system and assist in starting the ARV action (Joubert et al. 2008). It is imperative at this stage that health professionals maintain a positive and encouraging approach to their intervention programmes.
The well person
Once the ARVs are adhered to, the person should achieve viral load suppression. Experience shows that such persons often make astounding recoveries and are able to return to most of their previous occupations over time. This is thus a phase where intervention should focus on improving general self-confidence, endurance and muscle strength and implementing a holistic rehabilitation programme. Occupational therapists, dieticians, psychologists, bio-kineticists, physiotherapists, social workers, medical practitioners and primary health care nurses need to work as a team to provide maximal support regarding correct diet, lifestyle changes, health maintenance and exercise programmes. These are needed to ensure that the person maintains himself/herself at optimal levels of health.
Vocational assessment and work hardening programmes can be implemented where necessary to prepare the PLWHA for re-entry into the workforce again.
The terminally ill person
This is the stage of the disease where the PLWHA is succumbing to it. At this stage, palliative care programmes should be implemented by the occupational therapist.
The moribund patient who has symptoms that form a clinical picture of a terminal phase of life retains the potential to respond to intervention. The occupational therapist needs to negotiate this terrain carefully as the intervention must be seen to increase the patient’s quality of life from this subjective standpoint. Interventions that focus on leaving a legacy, soothing existential distress and reliving or re-experiencing roles through alternative methods seem to work well. Memory boxes, reminiscence therapy or simple but meaningful activities of daily life and social contact form part of the toolkit of the occupational therapist.
The fundamental principles of occupational therapy intervention of persons with HIV/AIDS
- The facilitation of personal empowerment, autonomy and control over their lives, which will include pain and stress management (Gutterman in Pedretti & Early 2001).
- Restoration and maintenance of occupational roles and relationships, which contribute towards maintenance of dignity and quality of life.
- Acknowledgement and accommodation of the need for mourning and of emotional and behavioural responses such as depression, anxiety, anger and guilt, which occur due to the diagnosis.
- Maintenance of physical strength, endurance and mobility (Gutterman in Pedretti & Early 2001).
- Promotion of knowledge of a healthy lifestyle including good nutrition, exercise, medical adherence and risk factors.
- Referral to appropriate resources and support systems to reinforce maintenance of optimal occupational functioning.
Forensic Psychiatry and Occupational Therapy
Sensory Integration in Mental Health
