Are informal caregivers important in AIDS care?
Decarlo, P.; Folkman, S.
Positive Outlook the Newsletter of the Aids Alternative Health Project 4(2): 26-27
1997
PMID: 12293155 Document Number: 271286
Informal caregivers of people with AIDS provide practical help and nursing care at home. They are often the lovers, spouses, friends, or family of someone with AIDS and are not professional care providers. They provide essential care, saving society considerable expense. Caregivers provide practical support such as shopping, housekeeping, and transportation to clinics, as well as basic assistance such as help with bathing, going to the bathroom, and feeding. As symptoms worsen, caregivers are also likely to adopt the more clinical roles of keeping track of medications, giving injections, inserting catheters, and cleaning wounds. Caregivers also often assess medical and mental conditions, being the first to notice changes in health and to decide when to seek help. Caregivers, however, can suffer considerable care-related stress, leading to numbness, compassion fatigue, or burnout. Caregivers may also fear social rejection, loss of job and/or housing and may therefore hide their caregiving status from family, friends, and co-workers. For women with HIV, being responsible for children at home may make it difficult or impossible to obtain caregiving support for themselves. Helping caregivers benefits both the caregiver and the patient. Professional clinicians can include the caregiver in the triad of care comprised of the doctor, caregiver, and patient. Participating in support groups can also help caregivers.