The Psychological and Social Needs of People with HIV/AIDS in Cyprus
The research on the Psychological and Social Needs of People with HIV/AIDS began in December 20005 and was completed in October 2007.
Contributors
Funding
- Research Promotion Foundation,
- Intercollege (Host Organisation)
End Users
Gregorios HIV/AIDS Clinic, Larnaca General Hospital, Ministry of Health, Cyprus
Scientific Coordinator
Dr Constantinos Phellas, Director of RUBSI and Associate Professor at School of Humanities, Social Sciences & Law, Intercollege, and Director of RUBSI
Coordinator
Mr Costas Constantinou, Sociologist – Researcher (PhD Candidate in Social Anthropology of Health, University of Bristol, UK)
Contributors:
University of Cyprus: Dr Leontios Kostrikis, Department of Biological Sciences, University of Cyprus.
Overseas Consultant: Professor Anthony Peter Macmillan Coxon, University of Edinburgh, UK.
Background Information
The impact of antί–HIV combination therapy on the needs of people with HIV has been shaped both by changes in health and changes in prospects. A gradual shift has taken place, away from short–term needs and the possίbίlίtίes of illness, to needs defined by the long–term and the possίbίlίtίes of health. But needs remain highly individual – although important for some, to others this pattern of change is minor or even irrelevant. The clinical benefits of treatment vary considerably. Many of those who have seen major improvements in their health are now able to meet their daily needs by themselves.
But for those coping with chronic disability or side effects, sustaining daily routines remains difficult.
The wider impact of combination therapy has been on perceptions of the possibilities of life. Almost everyone living with HIV now contends with an increasing range of possible futures. As horizons expand, needs almost always increase.
Those who risk change face many needs, such as needs for confidence, understanding, resources, mobility, skills and friendship.But combination therapy is only one of many things which have shaped the needs of people with HIV.
Overall, patterns of need have not changed radically, because individual needs continue to be defined by the many other demands of life. People with HIV are still coping with uncertainty, discrimination, anxiety, violence, loss and displacement.
People with HIV are still looking after children, seeking and sustaining relationships, searching for trust in friendships and satisfaction in sex.
People with HIV are still holding down jobs, fighting for basic rights and welfare, coping with inadequate living conditions, and managing dependency on drugs.
Above all, people with HIV are still coping with the reality of living with infection, with doubt, and with the legacy of the past. For any individual, need is highly subjective, rooted in personal circumstances and always open to change.
Changes in need have not always been reflected in changes in demand for services. People with HIV meet their needs by drawing on many sources of support – formal, informal and (above all) internal. Hence it is not always services which feel the impact of changes in need, especially when they play a relatively minor role in any individual’s life.
Furthermore, demand for services is not simply a reflection of need. People with HIV do not rationally select services to fulfill identified needs. Different people gain very different things from the same service, regardless of what the provider is aiming to achieve. For any individual, Service use is a process of exploration, of working out what works best in dealing with the reality of life.
Changes in need have affected service use in different ways, depending on the role of service use in any individual’s life.
People with HIV recognize that services cannot do everything for them and turn to many other sources of support to deal with changes in their lives. What matters to them is that services respect them, understand them for who they are, and attempt, as far as possible, to respond to the individuality of their needs.
The advent of anti–HIV combination therapies has irrevocably changed the lives of people with HIV in the UK. The rapid changes in HIV treatment options over the last four years have raised hopes and expectations about the impact of treatment on the lives of most people with HIV.
Even those who are not taking treatment must now assess the new possibilities which it offers, however qualified these may be.
Methodology
This research study explored the social impact of HIV and of anti–HIV combination therapies on the lives of people with HIV from a sociological and psychological perspective. The study included people who are taking combination therapy, those who had not started therapy despite being advised to do so, and those who had stopped taking therapy.
The project’s results offer an opportunity to reflect on the assumptions service–providers make about what these people’s needs are and how they have been affected by the combination therapy.
There are several steps to the analysis. Initially, every case was considered on its own terms, in order to identify the issues and problems specific to each participant. On the basis of this analysis, a broad thematic framework was developed. This was then used as the outline for a cross–case content analysis which fleshed out, challenged and modified the individual themes within the framework.
The study adopts both quantitative and qualitative research methods for the better investigation of the needs of people with HIV/AIDS.
More specifically:
(a) Interviews were carried out with key persons from relevant governmental and non–governmental organisations involved with HIV/AIDS.
(b)
Closed questionnaires were administered to around 100 persons with
HIV/AIDS treated at the Gregorios HIV/AIDS Clinic in Larnaca.
(c) Two focus groups were conducted with people living with HIV/AIDS.
(d) In–depth interviews with 30 persons living with HIV/AIDS.
The closed questionnaires covered all aspects of the HIV/AIDS people’s lives, namely:
A. Accommodation / Living Conditions
B. Food/Drink
C. Sleep
D. Housework / Self–care
E. Mobility – Commuting
F. Money – Earning enough to survive
G. Stress and Depression management
H. Problems with drugs or alcohol
I. Relationships with stable partners
J. Child care
K. Friendships
L. Love life
M. Discrimination
N. Self–confidence
O. Level of knowledge on HIV treatment
P. Capability of treatment of HIV
Q. Facing health professionals
R. Education and opportunities
S. Other needs for everyday life
Both the in–depth interviews as well as the focus groups offered the HIV people the chance to account for their experiences with the minimal intervention on behalf of the researchers. Through their personal accounts the researchers were able to shed some light into their social, psychological and sexual behaviour.
The results of the study were presented on the 3rd December 2007 (see the News)