Addressing psychosocial issues among PLWHIV

Salmiah Md Sharif

Outlines
Evolution of HIV care Psychosocial issues and its impact to individual and family How to help PLHIV to address this issues.

Evolution of HIV Care

1980 2010

Disease Care Acute Reactive Focus on dx/rx Customized care Spiritual MD role central

Health Care Chronic Proactive Focus on behavior Standardized care Practical Pt role central

Kathleen Clanon, MD 2007

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Evolution of HIV Care

RX of OI Palliative care Treatment Adherence / side-efects Co Infection / Co morbidity Reproductive health / parenthood Social Relationship Employment / education

PRE HAART: short Term care

HAART: Long Term Care

STIGMA & DISCRIMINACY

HIV CARE LINKAGE

STIGMA, DISCRMINATION AND HIV

Stigma : attitude (labeling) Discrimination: act (harassment, scapegoating Self - stigma , social stigma People with HIV/AIDS are stigmatized and discriminated against for many reasons :

HIV = bad lifestyles disease HIV = incurable = death sentences HIV = transmissible public fear

IMPACT OF STIGMA ON PLWHIV Stigma Fear of disclosure Fear of loss Fear of harassment Fear of rejection Fear of disfiguremen t
Health

behaviour

outcomes Poor QOL Poor prognosis Psychosocial issues not resolved Spread of infection

Preventive measures Condom use Breast feeding Delay in seeking treatment Poor treatment adherence Substance use No social support

HCP should aware of stigma a/w HIV and protect patients confidentiality and potray Emphaty and non judgemental Attitude.

Psychological aspects of HIV

In order to provide holistic and comprehensive care of HIV, HCP need to understand :
Psychological response of individual to diagnosis disclosure Impact of HIV on individual Impact of HIV on families Psychological issues associated with progression of the disease Reproductive health needs Issues related to treatment

Developmental stages of HIV disease in adulthood (Ross, Tebble, and Viliunas, 1977)
Reaction Stages 1 and 2: Shock, denial, anger Stage 3: Withdrawal Psychological process Guilt, powerlessness, anger Recognition of stigma, isolation

Stage 4: Bargaining 4a: Coming out to significant others 4b: Looking for otherHIV positives 4c: Special status 4d: Altruistic behavior

Testing others reactions and bargaining, stress displacement, need to be loved Sharing, recognition, trust, positive reinforcement, social support Turning alienation into a unique advantage, difference becomes special, needed by others Group commitment and cohesiveness, feeling of community
Integrated HIV status into self-identity, balance between altruism and self, coming to terms with condition

Stage 5: Acceptance

Psychosocial effects of HIV on the individual

HIV threatens a persons life, goals, expectance and significant relationships. Requires enormous psychosocial adjustments. To battle HIV successfully, PLWHV must have some level of acceptance of the disease, so that they can seek counseling, social support and medical care.

Individual Reactions to Disclosure of HIV Disease

The level of distress; depend on the following:

Mode of acquiring the infection Personality characteristics and lifestyle Degree of support system available Knowledge of and experience with AIDSrelated issues Accessibility to HAART (highly active antiretroviral therapy)

Psychosocial reaction of diagnosis disclosure

Psychosocial reactions :
anxiety Depression guilt social isolation

The nature and quality of disclosure are critical to preventing emotional trauma. If the disclosure is blunt and aggressive (ineffective pre test counselling), it can become a traumatic event that will affect the long-term psychological balance

Reactions to stress and trauma

Normal (fear, anger denial, depression, withdrawal) Neurotic (exaggerated reactions) Panic / anxiety extreme avoidance behaviors impairment of ability to love and work Psychotic; most common is depressive disorders. Psychosomatic

Psychological Issues through Progression of HIV/AIDS

Early stage : being persecuted by the virus. Later stage: physical and psychological anxiety, fear of death As the disease progresses, control (or power) issues emerge as patients face increasing loss of physical control. Self-efficacy and active involvement in their health can increase peoples sense of being in control and reduce their risk of feeling helpless.

Psychosocial effects of HIV on the family

You dont have to be infected to be affected by HIV/AIDS:

Parent partner Sibling Children relatives

Psychosocial impact on the family

Stigma Fear of transmission Double disclosures Dealing with loss Fear of illness and death Feeling helpless, sad, angry Financial worries Relationship conflicts Uncertainty about the future Dealing with the medical system.
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How families cope with illness depends on their ...

Belief systems Ethnicity Religion Social class Relationship to treatment providers.

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Serodiscordant couples face many challenges:

Safer sex Survivor guilt Envy of the healthy Lack of empathy

Fear of abandonment Fear of transmission Fear of illness/death Trust/betrayal.

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Concordant couple
Safer sex is still an issue Financial problems Projection, identification with lovers health status What if were both sick at the same time? Who will die first?

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Reproductive health issues

Sexual relationships
prevention of transmission and re-infection, negotiation of safer sex ; condom use disclosure of HIV status, dealing with sexual dysfunction

Contraception
Prevent unplanned pregnancy

Desire for parenthood

Pre and post conception counseling

What happened if we do not addrress reproductive health issues

Review PMTCT reports in Selangor 39.1% of cases are a known case, about 40% of them booked late, even 29.3% of them came at delivery.( ?? Achieve 0 vertical transmission by 2015) 70% are married, about 48% of known HIV status of partner was serodiscordant ( issue of condom use and disease transmission)

Issues related to living with chronic illness

when to start treatment Treatment adherence Fear of side effects especially lipodystropy Treatment fatigue Treatment failure survivor guilt Employment finance and benefits. education

Psychosocial Decision needs for PLHIV

Stigma Discrimination

Isolation
Whether or not to disclose

PLHIV
Sexual /parenthood
Having or not treatment

Behavioral mediation of psychosocial factors and HIV disease progression : (Psycosomatic Medicine 70: 569-574 (2008)
Psychosocial Factors Depression Stress Coping Social support HIV progresion CD4 decline AIDS AIDS related death

Behavioral Mechanism Treatment non adherent Substance use Sexual risk behaviour Lack of exercise

Factors influencing the quality of life in patients with HIV in Malaysia C. I. Hasanah A. R. Zaliha Maheran : 2010

A cross sectional study, 271 PLHIV, out patient Hospital Kota Baharu To detemine factors influence QOL PLHIVMalay version of the Functional Assessment of HIV Infection (FAHI) and Malay Hospital Anxiety Depression Scale (HADS).

Factors influencing the quality of life in patients with HIV in Malaysia C. I. Hasanah A. R. Zaliha Maheran : 2010

Overall FAHI scores : better in non malays, employed, CD4 > 200, no psychological disturbances. Poor social wellbeing in Heterosexual vs IDU; non- closure and, mental illness (38% possible anxiety, depression or both) Anxiety and depression impaired overall QOL Psychological and social well-beings were more affected than physical well-being in out-patients. Recommended that PLHIV should received better psycho-education and psychological intervention.

Psychosocial intervention
Psychosocial support Counseling education Psychotherapy Cognitive behaviour therapy Stress management Pre & post conception care Medications Positive behaviour Good adherence Full use of health care service High condom use Positive living Good mental health

Good outcome Prevent spread Delay disease Good QOL

How to help PLHIV .

Self awareness
? Judgemental

Reduce stigma and discrimination Update knowledge Strengthened communication skills Widened network Provide good delivery system

How to help them .

Be able to recognize patients emotional reactions . Help them overcome denial Help them improve self-esteem Assist them to recognize the unpleasant reality of the disease while keeping hope and goals in life,

How to help them ..

Identify patients need and help them meet the needs The needs could be Information of the disease and treatment options. legal support Access to services developing practical skills to improve adherence disclose diagnosis to other parties,

How to help them

Give support to patients through;

Counselling Education Practical support and assistance Psychotherapy and psychiatric support

Health care delivery

Patient involvement and self- care Shared care ; patients preferences are considered Pt has adequate and accurate information Decision support aids / intervention Information on risk and benefits of each alternatives.

Take home message

Psychological and social factors influence the ability to cope with HIV/AIDS more than the severity of the disease. Stigma and discrimination are critical factors to be considered. HIV has profound psychosocial effects on the HIV-infected person, the family, the community Our duty to assist PLHIV address psychosocial issues by empowering them to make informed decision.