Iris WS CHAN, Rita WY CHUNG
Twenty-five years into the AIDS epidemic, revolutionary improvement in medical treatment of HIV/AIDS has converted the once life-threatening terminal illness into a manageable chronic disease. This is witnessed in Hong Kong as much as it is in other developed countries. Medical advances have not only prolonged life of HIV-infected individuals, but have brought about drastic changes in the nature of concerns and issues among patients and their significant others. HIV/AIDS is often associated with a range of psychosocial sequelae that must be addressed throughout all stages of the infection. Psychological support is therefore critical for helping individuals, couples, and families affected by HIV to cope with their emotions and psychosocial needs.
Research in Hong Kong had previously reported that physical health and social discrimination were the most "difficult aspects" of the life of HIV-infected individuals.1 In fact, HIV-infected individuals have to tackle a broad spectrum of challenges which vary with different stages and time points of the disease, many of which with a locally specific context. Awareness of theses unique psychosocial needs is crucial in effecting timely and appropriate interventions.
Newly diagnosed HIV-infected patients may have little knowledge or distorted picture about HIV disease. A commonly held belief, especially in the pre-HAART era, is that one would have to give up any plan for the future and live in ill health for the rest of the days to come. A strong belief that HIV infection is fatal and terminal may result in the loss of hope in life and living. There is an apparent need to clarify the myths and misunderstanding of management of HIV infection. The foremost important need at this stage is naturally accurate facts and knowledge about HIV and its available treatment.
Patients may show a variety of reactions upon receiving the bad news. The most common responses include shock, disbelief, denial, fear and anxiety, depression and guilt. In addition, some may express a sense of uncertainty. They worry about health deterioration and a shortened life span. Therefore, a strong sense of foreshortened future and despair is common. Prevalence of depression and psychological distressed are found to be elevated among HIV-infected individuals. Health care workers need to explore the emotional response of newly diagnosed patients and acknowledge the feelings of patients.
Disclosure of HIV diagnosis is often a difficult decision. Like other patients, people living with HIV/AIDS (PLWHA) have right to confidentiality. They would also need to understand that they have the obligation to disclose their HIV diagnosis to those with whom they have had unprotected sexual contact and /or shared needle voluntarily. Disclosure of HIV diagnosis is frequently identified as a stressor by newly diagnosed patients.2 The sense of guilt and fear of abandonment and stigma are the most common barriers to disclosures of HIV status. Health care workers shall be prepared to equip patients with the skills of disclosure and offer assistance in the process as necessary.
From a social angle, ill health resulting from HIV-infection is likely to affect the working capacity of newly diagnosed patients especially when they are already in an advanced stage of disease. Financial concerns and difficulties are often brought up at this stage. Moreover, HIV-infected patients could be the breadwinners or the major care takers of their families. Therefore, a series of practical social issues, such as children care and financial needs have to be addressed in the initial phase in managing HIV-infected individuals.
In order to live an adaptive life despite HIV infection, patients need to negotiate between the demands of chronic illness and their goals of living a "normal" life. In order to enjoy sustainable physical health, social support and financial independence, patients have to work on a number of areas that require persistent efforts. These are treatment-related stress as well as relationships with significant others.
With the advent of HAART, HIV infection becomes a manageable disease that requires near perfect drug adherence, i.e. 95% or above for maximum viral suppression.3 Long-term adherence to HAART is a real challenge as non-adherence would result in sub-optimal viral suppression, which may lead to treatment failure. On the other hand, patients with good drug adherence may also be challenged by either transient (diarrhoea and nausea) or longer lasting (lipodystrophy, dyslipidaemia, neuropathy) side effects. Some of these, though distressing, can be treated and are reversible, for example, fatigue, insomnia, diarrhoea, nausea and stomach upset.4 Other side effects, for example, lipodystrophy, often cannot be completely removed. Physical manifestations vary, which typically include fat accumulation on the upper back and neck (buffalo hump) and under the muscles of the abdomen. There may also be lipomass, breast enlargement, and peripheral fat wasting in face, legs, arms and buttock.5 Drastic changes in physical appearance often cause patients to be in despair and constant fear of exposure of their HIV status.
Apparently though HAART is potent in prolonging the life of infected individuals, it also brings about side effects and adverse psychosocial consequences that lead to either discontinuation or poor adherence. Drug adherence is also influenced by patient-related factors as well. Research has shown that some non-adherent patients understand poorly the relationship between adherence, viral load, and disease progression.6 Mood, psychological well-being, and a person's lifestyle are also factors pertaining to adherence to HAART. Patients often have perfect drug adherence at initial stage of starting HAART, especially when they are in advanced stage of HIV disease. However some patients tend to become lax when their physical condition become stable. Drug adherence monitoring effort should be consistent even when the condition of patients is stable, CD4 on rising trend and viral load undetectable.
PLWHA may start to reengage in romantic relationships and sexual activities when their physical conditions become stable. Sexuality becomes an important issue of concern. Studies in western countries revealed that around one third of PLWHA continue to practise unprotected high-risk sexual behaviours which might put uninfected individuals at risk.7 These behaviours could be related to the lack of knowledge and skills to practise safer sex. In addition, these could be linked with anxiety arising from concern about disclosure and fear of rejection, false interpretation of "undetectable viral load" as nonexistent transmission risk, irrational association of condom use with HIV and sexually transmitted diseases as well as the lack of negotiation power. Emotional distress, such as depression and hostility also correspond with risky sexual behaviours among people with HIV/AIDS. Thus, PLWHAs shall be supported with counselling tailored to their needs in safer sex practice and sexual relationships.
Spouses/Partners and family members of PLWHAs often have great concerns, worries and a sense of burden after learning the HIV diagnosis of their beloved ones. It can be difficult for them to solicit social support and seek empathy from their social network or other family members. Caregivers, who are mainly spouses/partners, may have reduced life satisfaction or even feel burnout in the course of taking care of their loved ones.8 Support and counselling to spouses/partners and family members is an important part of the holistic care in management of HIV disease.
Although AIDS specific mortality has declined, serious co-morbidity has continued to occur in relation to poor drug adherence, progressive viral resistance and unmanageable drug toxicities. In addition, other chronic diseases will increase as life expectancy increases, and thus a fluctuating yet ultimately downward course of HIV disease is expected. The principle of palliative care should apply at the last stage of illness. Decision making about risk and benefit of various therapies, such as chemotherapy; withdrawal of HAART after evident treatment failure and the decision on the use of artificial feeding are scenarios that involve assessment of patients' preferences and wishes. The objective of palliative care is to focus attention on comfort, relief of suffering, and quality of life through the end of illness.
PLWHAs and their families as well as friends have to face many losses in the course of illness. They have to deal with the loss of job, the threat of health and life insurance, the change in close interpersonal relationships and the fear of rejection of friends, and the partners/spouses. In face of multiple losses, one may develop feelings of helplessness, anger and guilt. The most devastating loss is the death of spouses/partners or friends to AIDS. PLWHAs may even have to face multiple losses because the death of friends and co-patients to AIDS would bring traumatic impact to them and even reduce their confidence and hope for successful treatment. Support to family includes psychological preparation for possible deterioration, counselling on decision process about "end of life" issues and bereavement counselling.
Since the stressors faced by PLWHAs are multiple and chronic in nature, a multidisciplinary team approach has to be adopted in order to cater for the various psychosocial needs of PLWHAs. Case management is a client centered form of care that connects clients with medical, psychosocial and supportive service. This form of service is an effective model that promotes adaptive coping of patients suffering from chronic diseases and HIV infection, in which a case manager takes up a facilitative role in case management.
The initial counselling and assessment given to newly diagnosed patients is of paramount importance. The objective of the intake assessment is to understand the needs and current functioning in each aspect of life, such as occupational functioning, social functioning, and source of supports. After this initial assessment, an agenda is set up to prioritise areas of needs and services required. Referrals to other professionals, including, clinical psychologist, social worker and dietitian may be necessary, when needs are identified in the interview. Knowledge about HIV infection and their current health status is reinforced, myths and misunderstandings are clarified, and realistic expectations are set with patients. Other relevant information, such as that on mental health, substance use, skills in independent living, are also provided. A supportive and nonjudgemental attitude of the health care workers during the first encounter with the newly diagnosed HIV positive patients is crucial in order to build rapport and establish partnership of care between each other. Patients are encouraged to discuss openly and frankly with the health care workers about their concerns and worries.
Research in Hong Kong shows similar findings as the West that depressed mood is very common among PLWHAs.2 Although they may not be afflicted with clinical affective disorders, many of them experience significant levels of distress. Some PLWHAs would need psychological assessment and intervention for evaluation of mood, and management of stress. Psychological intervention helps patients deal with various mood and anxiety problems and learn adaptive coping skills. Psychological intervention can be in the form of individual treatment and group treatment. Individual treatment involves individualised treatment plan for the issue a person and the psychologist identified during assessment. On the other hand, group treatment delivers intervention in the form of group with a specific topic and theme.
Patient support groups serve important functions for medically ill patients. These groups provide a forum to share feelings and experiences with each other, share information on treatment and resources, thereby lessening feelings of isolation and being neglected.9 PLWHAs are given an opportunity to discuss HIV-related issues openly within the support groups, which may otherwise not be available in other contexts of daily life. In Hong Kong, patient support groups are formed at specialist clinics where patients receive medical treatment. Various non-governmental organizations (NGOs) also form groups and provide mutual support among patients.
Cognitive-behavioural group treatment is widely applied to patients of various mental and medical problems. It has been reported10 that cognitive-behavioural group could be effective in improving the quality of life and mood in HIV-infected patients in Hong Kong. Typically, these interventions involve groups of 6-8 participants which are led by one or two psychotherapist. These groups usually meet weekly for 2-3 months. Most cognitive behavioural groups involve cognitive restructuring of maladaptive thoughts, provision of knowledge on stress responses, relaxation exercises, health behaviour change, and discussion on constructive coping skills. The aims are to reduce distress of participants and to promote their efficacy in dealing with stress related to HIV illness.
There are various forms of intervention on HIV medication based on different models and theories of health behaviours.11-13 One of the important principles in drug adherence counselling is that patients should be involved in treatment decision process. They need information and explanation on the pros and cons of the medications prescribed to them. HAART should not be prescribed without the commitment from patients. Besides, strategies for enhancing drug adherence should be discussed before commencement of treatment. Such strategies include setting alarm via mobile phone or watch to ensure accurate drug taking time, proper drug storage, and forming habit of stock taking of drugs. Integration of medication schedule into life routine is the key to success in treatment adherence.
The development of rapport and regular contacts with HIV patients are the pre-requisites for effective safer sex promotion in HIV patients. Health care workers need to prepare themselves to discuss the topic of sex and master the skills in addressing sexual need of patients. The dimensions of safer sex education in clinical settings include: (a) risk behaviour assessment, STDs screening and counselling at individual level, (b) education on proper use of condom and (c) counselling on the importance of safer sex practice. Spouses/partners shall be invited to join the session to understand the couples' difficulties and barriers in sexual relationships and offer counselling accordingly.
The ultimate objective of psychosocial care is not only for prolonging survival of patients, but to assist them to attain quality of life and to enable them to reintegrate back to society. Enhancing self-care ability is crucial to facilitate normal living. In the course of treatment, health care workers have to identify barriers to independent living, and offer appropriate assistance to achieve the aim. For example, PLWHAs may also need vocational rehabilitation in order to resume independent living. Moreover, they can be empowered by full understanding of their own health progress and treatment updates.
It is important to note that HIV-related social stigmas have never disappeared.14 Social stigma can be a form of chronic stress for HIV/AIDS patients. In addition, fear of stigmatisation and discrimination would stop people from disclosing their diagnosis to friends and family members, while the burden and stressors of HIV are all kept to the infected individuals. Some people develop internal stigmas. They believe that their disease is a form of punishment and the disease constrains every aspect of their lives. Some patients may avoid social contacts and do not seek their much needed social support since they believe that they are not worth of respect and care from anyone. As a result, people living with HIV/AIDS may live in despair and a constant fear of rejection, and yet lack social support that they need.
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