Chairs: Tom Matthews, NLTSG and Clair Walton
Facilitator: Judy Sagar
Rapporteur: Lesley Swain, NLTSG
This workshop was attended by 50 people. The chairs welcomed everybody and highlighted the fact that this workshop was about issues that were not to do with treatment, which in fact meant ‘everything else’.
Long term survival – what does it mean to live long term with HIV? Judy Sagar
Judy is based at the University of Leeds in the Department of Sociology and Social Policy . She is at the ‘writing-up’ stage of her PhD thesis, which is based on a small-scale (32 participants) research study which has involved interviewing long-term survivors who have lived for more than 10 years with an HIV+ diagnosis across the UK . Most of the participants are on treatment, the age range is from 27 to 64 years old and reflects all groups living with HIV in the UK .
Information collected has been wide-ranging and sets out to explore:
the onset and impact of early diagnosis
biomedical concerns over time
issues concerning sex, sexuality, sexual relationships and sexual practices
friendships, personal relationships and experiences and practices of non-medical care and a sense of belonging (social inclusion/exclusion)
Judy explained that data collected over the past four years on the lived experiences of long-term survivors show a complex and diverse range of issues that have emerged. She has identified concerns, challenges and uncertainty.
The language used to describe people who have been living with HIV a long time was highlighted, as language affects what we feel/know about HIV. Different terms used are ‘Long Term Survivors’, ‘Long Term Thriver’, ‘Slow/non-progressor’. Judy decided ‘long term survivor’ was more appropriate to her research than the other terms; however, Judy now believes ‘long timers’ is perhaps less problematic.
Dominant issues from participants of the study were (in participants words):
Uncertainty, tiredness, loss of status, body image, isolation, decision making, telling people, not dying, loss of friends to AIDS, hard work!, side effects, body image, medical retirement, stress, illness, guilt.
Workshop participants were then split into four groups.
Group 1 did not wish to make their flip chart notes public. The issues raised by the other groups were as follows:
Psychological effects of living long term with HIV
People have different ways of dealing with HIV (not necessarily all positive)
The value of peer support was emphasised
It is difficult to identify what is to do with HIV and what is to do with ageing, examples given were reduction in libido and night sweats
Some people feel guilty about their lifestyle and how it affects HIV
Difficulties in accessing alternative therapies
For those people with children (positive or negative) there were issues about when to tell them.
The need for support for children of people living with HIV
Adapting to changing technology (especially using computers and the internet)
Challenging outcome (not assuming that all will be bad)
Taking responsibility for our own health
It’s important to make sure that HIV isn’t the most important thing about you
Pushing limitations to reclaim control of our own lives and health
Some long term survivors were considering starting work for the first time. How would they do this, why and when?
For those in work or changing work the importance of needing something that helps not hinders health was emphasised
Disclosure is just as difficult (it doesn’t get easier with time)
The need to educate the general public hasn’t gone away
Lack of services to Long Term Survivors
Understanding and learning about yourself and your needs because of HIV
Forming and maintaining sexual relationships and understanding risk of transmission.
The large attendance at the session demonstrates a need for issues other than treatment to be addressed.
There are differences and similarities between people
Long-term survivors can be mentors to people with HIV diagnosed recently
Organisations and decision making bodies need to learn from long term survivors who have experienced a changing landscape of attitudes and responses during the last 20 years. Particularly if important lessons are to be learnt for any newly emerging conditions
Organisations need to explore whether they are meeting the needs of long term survivors and involve them in the planning and delivery of future services
There needs to be more specific research on sexual transmission (particularly female to male)
This workshop was evaluated by 43 people between the ages of 27 and 63. The average age was 42.
Gender
31 male, 10 female, 2 not stated
Ethnicity
35 white, 5 black African, 3 not stated
Sexuality
25 gay, 14 heterosexual, 2 not stated, 1 bisexual, 1 lesbian,
Usefulness
Very useful |
Useful |
Not useful |
58%(25) |
30% (13) |
12% (5) |
11 people set themselves action points.
4 people said they would join the National Long-term Survivors Group
Some people set themselves personal goals:
Review medication with doctor
Remain positive in attitude
Be vigilant
Some people wanted to be more involved locally:
Set up long term survivors group in Scotland
Continue involvement with local support networks
Encourage conversation
See self as educator to newly diagnosed
Move on to Managing Your Life