A04 Psychosocial needs of HIV patients
The AIDS epidemic has been with us for over three decades, during which the advancement in therapy has changed the course of the disease from an acute to a manageable chronic illness. This is witnessed in Hong Kong as much as it is in other developed countries. There is no cure for HIV yet. However, treatment can control HIV and enable people to live a long and healthy life. On the other hand, it brought about drastic changes in the nature of concerns and issues among patients and their significant others. These include prevention of HIV transmission, the challenge of drug adherence, treatment toxicity despite maximum viral suppression, reproductive and family planning decisions, ageing, co-morbidities, non-AIDS-related infections and mortalities among HIV infected individuals. 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 suggested that physical health and social discrimination were the most “difficult aspects” of the life of PLWHA (People living with HIV/AIDS). In real life, they 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.[Box 4.1] Awareness of these unique psychosocial needs is crucial in effecting timely and appropriate interventions.
Box 4.1. Spectrum of psychosocial problems faced by HIV/AIDS patients
Breaking the bad news – psychosocial impacts of an HIV diagnosis
Newly diagnosed HIV-infected patients may have inadequate knowledge or distorted picture about HIV disease. There is an apparent need to clarify the myths and misunderstanding of management of HIV infection. Foremost are 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 shortened life span. Therefore, a strong sense of foreshortened future and despair is common. Prevalence of depression and psychological distress are elevated among PLWHA.
Disclosure of HIV diagnosis is often a difficult decision. Like other patients, PLWHA has right to confidentiality. They would also need to understand their obligation to disclose to those who have had unprotected sexual contact and/or shared needle voluntarily. Disclosure of HIV diagnosis is frequently identified as a stressor by newly diagnosed patients. The sense of guilt and fear of abandonment and stigma are the common barriers to disclosures of HIV status.
From a social perspective, ill health resulting from a newly diagnosed HIV infected patient may affect the working capacity especially when they are in an advanced stage of disease. Financial difficulties are the most common concern at this stage. Some patients could be the breadwinners or the major care takers of their families. Therefore, a series of practical social issues, such as child care, family support and financial hardship have to be addressed in this initial phase.
Psychological needs of HIV/AIDS patients towards a stable physical health condition
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. 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.
Highly Active Antiretroviral Therapy (HAART) related issues
People on highly active antiretroviral therapy (HAART) are required to maintain good adherence throughout their lives. Long-term adherences to HAART is a real challenge as non-adherence would result in sub-optimal viral suppression, which may lead to treatment failure.[Chapter C12] On the other hand, patients with good drug adherence may also be challenged by adverse reactions to antiretrovirals and drug-drug interactions (DDI).
Drastic changes in physical appearance often cause despair and constant fear of exposure of their HIV status. Moreover, PLWHA are challenged with long term drug toxicities of HAART and a broad range of ageing associated co-morbidities despite achieving maximum viral suppression. These include dyslipidaemia, insulin resistance or diabetes, atherosclerotic cardiovascular and cerebrovascular diseases, hepatotoxicity, nephrotoxicity, osteoporosis, etc. [Chapter C15] To counteract the burden of these co-morbidities, health care workers (HCW) should facilitate patients to look into the efficacy of antiretroviral therapy against its toxicities; and encourage diminishing risk factors that contributes to ageing and toxicity related co-morbidities, such as smoking cessation, healthy life style including healthy eating, weight control, sleep hygiene and regular exercise.
Although HAART is effective in prolonging life, it also brings about side effects and adverse psychosocial consequences that lead to either discontinuation or poor adherence. Drug adherence is often influenced by patient-related factors. Some non-adherent patients may have misunderstanding regarding the relationship among adherence, viral load suppression and disease progression.
Mood, psychological well-being, and a person’s lifestyle are factors pertaining to adherence to HAART. Treatment interruption may be related with multiple factors which include being tired of lifelong drug treatment, adherence issue, lack of confidence towards treatment and fear of toxicities. Study has indicated a decreasing trend of adherence over time. In addition, patients with poor drug adherence were more likely to default follow-up; while stable drug adherence could partly be related to patients’ awareness of the importance of adherence to long-term treatment success. Supportive care to retain patients in care is of paramount importance in effective drug adherence programmes. Continuity of drug adherence monitoring is necessary especially when a patient’s condition becomes stable, CD4 on improving trend with undetectable viral load.
HIV related interpersonal relations
PLWHA may engage in new relationships and may have sex 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 sex which might put uninfected individuals at risk. These behaviours could be related to the lack of knowledge and skills in safer sex practice. In addition, these could be linked with anxiety arising from concern about disclosure and fear of rejection. Emotional distress, such as depression and hostility also correspond with risky sexual behaviours among PLWHA. They shall be supported by sexual health counselling according to individual need.
Spouses/Partners and family members of PLWHA often have great concerns, worries and sense of burden after learning their HIV diagnosis. It can be difficult for them to solicit social support and seek empathy from their social network or other family members. Caregivers may express their worries and hardship or even feel burnout in the course of taking care of their loved ones. Counselling and support to caregivers is an important part of the holistic care in managing HIV.
HIV and family planning
Given the prolonged life expectancy and stable health condition of HIV infected individuals, there are increasing desire for child bearing options among HIV infected and affected couples especially in recent years. The HIV transmission risk to babies could be reduced to below 1% due to the advancement of HAART in the prevention of mother-to-child transmission (PMTCT) of HIV.[Chapter F33]
HCW should provide preconception counselling for all women at child bearing age when necessary. Sexual health counselling on contraception and reproduction decisions is needed in order to facilitate decision making. In order to deal with these complex medical and psychosocial needs, a comprehensive HIV care approach for couples is essential.
HIV and palliative care
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.
The principle of palliative care should apply in advance to end-of-life care planning. Decision making regarding risk and benefit of various options, such as chemotherapy and continuity of HAART, should incorporate patients’ preferences and wishes. The goal of palliative care is the achievement of the quality of life for patients and their families. PLWHA, their families as well as friends have to face multiple losses in the course of illness. Palliative care addresses pain, symptom and includes communication about physical, emotion, psychosocial and spiritual suffering in the context of serious illness.
Support to family includes psychological preparation for possible deterioration, counselling on decision process about end-of-life issues and bereavement counselling. Nursing and palliative care are natural partners in clinical practice and that the knowledge and skills required in this area are applicable to all nurses. People die in many environments and all have a right to supportive and palliative care, regardless of diagnosis or circumstances.
Case Management and HIV
“Case management is a collaborative process that assesses, plans, implements, coordinates, monitors and evaluates the options and services required to meet the client’s health and human service needs.“ Collaboration and coordination are essential components of case management system. The objective of case management is wellness promotion and quality care.
The case manager is the facilitator of the process. A multidisciplinary team approach has been adopted to care for the various psychosocial needs of PLWHA. In Hong Kong, case managers are often HIV clinic nurses and case workers of AIDS related non-governmental organizations (NGOs).
Initial assessment of newly diagnosed HIV-infected patients
The initial counselling and intake assessment given to newly diagnosed patients is of paramount importance. The objective is to understand the needs and current functioning in each aspect of life, which includes psychological assessment, social assessment, environmental assessment, functioning and medical assessment. Referrals to other professionals, including, clinical psychologists, psychiatrists, occupational therapists, social workers and dietitians are often necessary. PLWHA should be strengthened on updated information and HIV knowledge. The case manager would develop a comprehensive individual care plan for those newly diagnosed patient.
A supportive and non-judgmental attitude of HCWs is crucial in order to build up good rapport and to establish good partnership to facilitate engagement in care. Patients are encouraged to discuss openly and frankly with the HCWs about their concerns and worries.
Psychological assessment and intervention
Research in Hong Kong has shown that depressed mood is very common among PLWHA. Although they may not be afflicted with clinical affective disorders, many do experience significant levels of distress. Some PLWHA would need psychological assessment and intervention for evaluation of mood, and management of stress. Psychological intervention helps patients to deal with various mood and anxiety problems and an adaptive coping skill is learnt. Psychological intervention can be provided in the form of individual and group treatment.
PLWHA support groups and caregivers led support groups
Patient support groups provide a platform to share feelings and experiences with each other, share information on treatment and resources, thereby lessening feelings of isolation and being neglected. PLWHA 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. NGOs are also providing services and activities regarding mutual support among patients.
Drug adherence counselling
One of the important principles in drug adherence counselling is that patients should be involved in the treatment decision process. Drug adherence counselling is covered in Chapter C12.
Risk reduction counselling on safer sex
The aim of risk reduction counselling is to empower individuals to sustain safer sex practice. Good rapport and regular contacts with HIV patients are the pre-requisites for effective safer sex promotion. Recent study suggested that antiretroviral therapy was linked with 96% reduction of sexual transmission to HIV negative partners as well as improved health outcome among HIV infected patients. HCWs need to implement effective behavioural risk reduction counselling on safer sex. Prevention targeting HIV positive is discussed in Chapter B7.
The social interface
The ultimate objective of psychosocial care is to attain quality of life and to enable PLWHA to reintegrate in the society. In the course of treatment, HCWs have to identify barriers to independent living, and offer appropriate assistance to achieve the aim. Some PLWHA may also need vocational rehabilitation in order to resume independent living. It is important to note that HIV-related social stigmas have never disappeared. Social stigma can be a form of chronic stress. In addition, fear of stigmatisation and discrimination would cause resistance in disclosing one’s HIV status to his/her significant others. HIV related stigma and discrimination refer to prejudice, negative attitudes and abuse directed at people living with HIV and AIDS. HCWs need to be prepared to deal with these barriers.
- Lau JT, Tsui HY, Li CK, Chung RW, Chan MW, Molassiotis A. Needs assessment and social environment of people living with HIV/AIDS in Hong Kong. AIDS Care 2003;15(5):699-706. link
- Au A, Chan I, Li P, Chung R, Po LM, Yu P. Stress and health-related quality of life among HIV-infected persons in Hong Kong. AIDS Behav 2004;8(2):119-29. link
- Cambiano V, Lampe FC, Rodger AJ, Smith CJ, Geretti AM, Lodwick RK, Puradiredja DI, Johnson M, Swaden L, Phillips AN. Long-term trends in adherence to antiretroviral therapy from start of HAART. AIDS 2010;24(8):1153-62. link
- Calmy A, Hirschel B, Cooper DA, Carr A. A new era of antiretroviral drug toxicity. Antivir Ther 2009;14(2):165-79. link
- Chesney MA, Morin M, Sherr L. Adherence to HIV combination therapy. Soc Sci Med 2000;50(11):1599-605. link
- Lima VD, Harrigan R, Bangsberg DR, Hogg RS, Gross R, Yip B, Montaner JS. The combined effect of modern highly active antiretroviral therapy regimes and adherence on mortality over time. J Acquir Immune Defic Syndr 2009;50(5)529-36. link
- Kalichman SC, Rompa D, Cage M, DiFonzo K, Simpson D, Austin J, Luke W, Buckles J, Kyomugisha F, Benotsch E, Pinkerton S, Graham J. Effectiveness of an intervention to reduce HIV transmission risks in HIV-positive people. Am J Prev Med 2001;21(2):84-92. link
- National Institute for Health and Care Excellence. Improving Supportive and Palliative Care for Adults with Cancer. (Cancer service guideline CSG4). United Kingdom: NICE, 2004. [Accessed 29 November 2018] Available from link
- Becker, R. Palliative care 1: principles of palliative care nursing and end-of-life care. Nursing Times 2009;105:13. link
- Commission for Case Manager Certification (CCMC). Definition of case management. [Accessed 28 November 2018] Available from link
- Chan I, Kong P, Leung P, Au A, Li P, Chung R, Lee MP, Yu P. Cognitive-behavioral group program for Chinese heterosexual HIV-infected men in Hong Kong. Patient Educ Couns 2005;56(1):78-84. link
- Cohen MS, Chen YQ, McCauley M, Gamble T, Hosseinipour MC, Kumarasamy N, Hakim JG, Kumwenda J, Grinsztejn B, Pilotto JH, Godbole SV, Mehendale S, Chariyalertsak S, Santos BR, Mayer KH, Hoffman IF, Eshleman SH, Piwowar-Manning E, Wang L, Makhema J, Mills LA, de Bruyn G, Sanne I, Eron J, Gallant J, Havlir D, Swindells S, Ribaudo H, Elharrar V, Burns D, Taha TE, Nielsen-Saines K, Celentano D, Essex M, Fleming TR; HPTN 052 Study Team. Prevention of HIV-1 infection with early antiretroviral therapy. N Engl J Med 2011;365(6):493-505. link
- Centers for Disease Control and Prevention. HIV Infection: Detection, Counseling, and Referral. In: 2015 Sexually Transmitted Diseases Treatment Guidelines. Atlanta: CDC, 2015. [accessed 29 November 2018] Available from link
- Gardner LI, Marks G, O’Daniels CM, Wilson TE, Golin C, Wright J, Quinlivan EB, Bradley-Springer L, Thompson M, Raffanti S, Thrun M. Implementation and Evaluation of a Clinic − Based Behavioral Intervention: Positive Steps for patients with HIV. AIDS Patient Care STDS 2008;22(8):627-35. link
- Godin G, Côté J, Naccache H, Lambert LD, Trottier S. Prediction of adherence to anti-retroviral therapy: a one year longitudinal study. AIDS Care 2005;17(4):493-504. link