Stigma and its impact on the quality of life in people living with HIV/AIDS in Albania

Besjan XhaniMA/PHD CandidateSocial WorkerUHC “Mother Theresa” Tirana, Hospital of Infection Disease.

May, 2015

Quality of life (QOL) is the general well-being of individuals and societies.

Quality of life should not be confused with the concept of standard of living, which is based primarily on income.

Instead, standard indicators of the quality of life include not only wealth and employment but also the built environment, physical and mental health, education, recreation and leisure time, and social belonging.

Stigma is the phenomenon where by an individual with an attribute which is deeply discredited by his/her society is rejected as a result of the attribute. Stigma is a process by which the reaction of others spoils normal identity. Ervin Gofman

First case of AIDS in Albania is diagnosed in 1993.

782 is the total number of PLWHA in Albania, (until December 2014.)

325 of them are under ARV treatment.

555 of them are patient in outpatient clinic, UHC

There is no documented research on the qualitative life of PLWHA in Albania.

To understand how the HIV infection has affected the quality of life of people that are living with AIDS.

To identify the factors that affected the QOL of PLWHA in Albania.

To analyze the connections that exist between stigma and indicators of quality of life among people infected with HIV/AIDS.

WHOQOL-HIV, Instrument

The WHOQOL-HIV-BREF is based on the WHOQOL-100

These questions respond to the definition of Quality of Life as individuals' perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.

Domain I: Physical

Pain and discomfortEnergy and fatigueSleep and rest50 Symptoms of PLWHA*

Domain II: Psychological

Positive feelingsThinking, learning, memory and concentrationSelf-esteemBody- image and appearanceNegative feelings

Domain III: Level of Independence

MobilityActivities of daily livingDependence on medication or treatmentsWork capacity

Domain IV Social Relationships

Personal relationshipsSocial supportSexual activity51 Social Inclusion

Domain V Environment

Physical safety and securityHome environmentFinancial resourcesHealth and social care (accessibility and quality)Opportunities for acquiring new information and skillsParticipation and opportunities for recreation/ leisure activitiesPhysical environment (pollution/noise/traffic/climate)Transportation

Domain VI Spirituality/Religion/ Personal Beliefs

General information

199 subject (71women /128 man)

The average age is 39.5

50.3 % have primary education

88.9% are under therapy

Results of domain Results of domain Summary descriptive of domain parameters

Physical Physiological

Level ofIndipendence

Social relationships

Environment

Spirituality/Religion/Personal beliefs

Total

Mesatarja 14.5 12.0 13.3 12.6 11.3 15.9 63.7

Mediana 15.0 12.0 13.0 13.0 11.0 16.0 63.0Moda 17 12.0 13a 14 11.0 19 63.5

Dev. Stand. 3.3 2.8 3.1 3.2 2.7 3.0 11.8

Rangu 15 15.2 15 16 16.0 13 63.9

Minimum 5 4.8 5 4 4.0 7 28.4

Maksimum 20 20.0 20 20 20.0 20 92.3

Why we have this results of domain? 100% of them at the moment of diagnosis

shows that the first thought was “it will be better if I have cancer".

Most of subject living with HIV/AIDS hide their HIV status by the fear of prejudice and discrimination .

This study revealed that the threat of social stigma prevents people living with HIV from revealing their status to others (causing obvious health concerns for society).

This is because by the fear of the stigma they decide not to share, discuss or address their problems.

By the fear of stigma they hesitate to bring partners / in for testing or therapy begins and choose to remain silent and to suffer ....

80% of PLWHA in the current study refuse to take social assistance (KEMP) by the fear of stigma.

Living with this “fear” causes social isolation, anxiety and depression.

Social stigma “ kills” more than HIV virus and 100% of subject in this study thinks like that.

Clinical care directed to individuals living with HIV, researchers believed, should include consideration of patient sensitivity to social stigma.

It must speak more from the social media, NGOs, care providers about HIV / AIDS as a common disease, on purpose to reduce the negative impact on society.

HIV / AIDS is not equal shame or immorality.

 Is necessity to implement Social Policy with a long-term plan to improve the quality of life of PWHA.

Thank you !