Human Immunodeficiency Virus (HIV) infection is now a chronic disease. As people living with HIV (PLHIV) age they are at risk of a neurological co-morbid disease called HIV associated Neurocognitive Disorder (HAND), which causes varied levels of disability affecting quality of life. Early identification and diagnosis is important, as HAND is potentially treatable. Informal and professional caregivers may assist in identification of HAND.
To explore the complexities of identifying HAND by PLHIV, their informal or professional caregivers.
• Explore whether PLHIV and their informal caregivers can identify HAND.
• Explore the experience of HAND in PLHIV.
• Explore whether community based health care professionals can identify HAND.
A pragmatic explanatory sequential design.
A mixed method approach explored the complexities of identifying HAND through a preliminary observational multisite pilot study followed by three subsequent study phases, an online survey, a cross sectional file audit of two community based HIV teams and a modified Delphi study.
The pilot study noted that both PLHIV and informal caregivers can identify signs and symptoms of HAND leading to diagnosis of HAND. The online survey noted PLHIV were concerned about HAND; were experiencing signs and symptoms of HAND and additionally wanted support in discussing HAND with others. The file audit noted that community based professionals were not collecting the appropriate information to identify HAND. The modified Delphi method lead to development of an initial and monitoring tool for community-based professionals to use to identify those PLHIV at risk of HAND who should be referred for formal assessment.
HAND is a potentially treatable condition. Early recognition can have a positive impact on health and quality of life of PLHIV as they age. Diagnosis of HAND is complex, but the observational and other experiences of PLHIV and their caregivers, can offer unique insights into cognitive changes in PLHIV.
For those PLHIV without the support of an informal caregiver and/or who live alone, professional caregivers can act as an alternative to an informal caregiver, being well placed to observe changes in cognitive behaviour over time.