Losing part of me

Stream: Living with HIV
Date: Thursday, 31 March 2016
Time: 11.15 am – 1.00 pm


Introduction: HIV associated neurocognitive disorder (HAND) can cause disability and decline in mental capacity. Fear and stigma are associated with HAND. People living with HIV who are at risk of or have HAND may be fearful of losing their cognitive abilities, of needing to rely on assisted care, and of the increase in stigma from a HAND diagnosis. Stigma may affect self-esteem, feelings of self-worth and belonging, as people living with HIV (PLHIV) may already feel they live on the margins of society. Aim: To ascertain the experience PLHIV regarding HAND. Method: A survey was distributed via the Pos Life NSW website over a three week period using Survey Monkey. Results: There were 162 responses. Seventy-three percent had heard of HAND, 52% were concerned or anxious about it and 15% were too anxious to discuss with others. Up to58% had experienced symptoms of cognitive impairment and 33% had noticed possible cognitive changes in friends. Fifty percent would like strategies to improve discussion about HAND with others. Common themes included fear of losing a part of themselves, losing independence, becoming a burden, judgement from others, memory deterioration and the unknown future. Conclusion: Many PLHIV have experienced the stigma of a HIV diagnosis. Fear of developing HAND is a concern which raises anxiety for the future. There is a need to open the dialogue to enable PLHIV to talk about their concerns and to develop resources for PLHIV, including services and how to approach the subject of HAND with others.


Denise Cummins (Presenter), Nursing School, University of Sydney; Sydney District Nursing, Community Health, Sydney Local Health District
Denise has been working in the area of HIV for over 20 years. She is a Clinical Nurse Consultant working in community setting in Sydney. Denise has experience developing and facilitating workshops for PLHIV in PNG, Thailand, Nepal and Myanmar. She has completed research projects on smoking cessation and HIV, women's needs and HIV, aging and HIV, cognitive impairment and HIV and medication adherence. Denise is currently enrolled in a PhD at the University of Sydney.

Donna Waters, Nursing School, University of Sydney
Professor Donna waters is the Dean of the Faculty of Nursing and Midwifery. She is a registered nurse with over 25 years experience in nursing education, research, teaching and the management of nursing, medical and health services research. Professor Water's research interests include paediatrics and child health, evidence implementation, evaluation research and research education.

Christina Aggar, Nusring School, University of Sydney
Christina Aggar RN Grad Cert Higher Education BN (Hons) PhD has over 30 years of nursing experience in primary health care nursing, including chronic disease management, aged care and rehabilitation. The title of her PhD is: “Reactions to caregiving in the context of community living older people and frailty”.
Christina has a broad national and international research profile. She is currently a lead investigator implementing a transition program for new graduate nurses directly into primary health care.

David Crawford, Positive Life NSW
Mr David Crawford has provided care to PLHIV as an RN at St Vincent's Hospital and Nursing Unit Manager at Albion Street Centre. He has worked on the International Unit at Ablion Street Centre visiting China on projects. He is currently the Traetments Officer at Positive Life NSW, Australia.

Catherine C O'Connor, Clinical School University of Sydney; The Kirby Institute; Sexual Health Service, Community Health, SydneyLocal Health Distrcit
Catherine is the Director Sexual Health Service, Executive Clinical Director Community Health, Community Health, Sydney Local Health District. She also does regular field trips to PNG to provide clinical care and mentorship.