THE IMPORTANCE OF DISEASE MANAGEMENT EXPERTISE IN SUPPORTING CAREGIVERS FOR HIV SURVIVORS

This article was written by Thomas O’Shaughnessey, the Caregiver Homes Assistant Branch Manager for the Southeast area in Massachusetts.

Caregiver Homes provides a unique form of long term care that we call Structured Family Caregiving (SFC). Caregiver Homes created SFC as an alternative not only to nursing facility placement but also as an additional option alongside other forms of Adult Foster Care, in which individuals live in the community, but usually with non-family care providers. To enable family caregivers in providing round-the-clock, specialized care, expertise in management of the consumer’s particular type of illness is very important. 

Unique Needs of HIV Survivors and their Caregivers 

In Massachusetts, where Caregiver Homes was founded and serves the largest number of caregivers and consumers, we have found that the needs of caregivers and consumers can vary greatly depending on the particular health issues involved, particularly regarding HIV, and our care teams have evolved unique approaches based on the medical, personal, and emotional needs of both caregiver and consumer. 

For example, one particular regional branch of Caregiver Homes in Massachusetts has several clients that are living and flourishing with the HIV disease. Our care teams have developed special relationships to those individuals and their family caregivers and understand the physical, mental, and emotional impacts of the disease can vary greatly over long periods of time and from one individual to another. One case in particular pertains to a young gentleman who was a Hemophiliac and receiving regular blood transfusion in the 80’s to treat his disease. This is the time when the blood was not being tested and as a result the client contracted the disease at the age of 9 years old. In March of 2010 the client joined CGH, assigning his mother as his primary caregiver. The client received tremendous love and support from his mother while he was in the program. Both the client and caregiver enjoyed the structure, support and advice that the care team provided to each of them, month after month. 

Stability of Structured Family Caregiving Support 

Another aspect of the program that the client and caregiver enjoyed was the stability of the care team. This stability meant that the client only had to tell his story once, versus other programs were they had to tell their stories numerous times. This was particularly important to the client as he expressed this to the care team several times at monthly home visits. The care team developed a close relationship with the client and his mother as the client was a polite, respectful and always used his best manners no matter how ill he felt on the day of the visit. At times when the client was feeling well enough he would go for a motor cycle ride but the rides became less frequent as his disease progressed. 

On July 26, 2012 the Southeast Branch lost their young, brave client to an auto accident. One of the first people that the caregiver contacted was the RN assigned to the case. The caregiver informed the RN that she felt so comfortable and knew that the RN would be there for her to listen and console her in her time of need. As a result of the relationship that was formed the care manager and nurse both received a documentary that the client had made of himself, documenting the trials and tribulations in dealing with the disease. This DVD was only given to select individuals and the client’s mother felt it was appropriate to give the care team a copy of the DVD as they had become like family. The care team has a scheduled visit with the caregiver during the first week of October to meet and reminisce about their lost son and friend. This is a great story of how compassion and professional case work can really form strong bonds with your client and caregiver.