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The Resource Train

The Support Needs of Caregivers

May/June 2003

Sarah Biel-Cunningham

A system of support is crucial for individuals living with HIV to strengthen their coping strategies when dealing with this disease. This support is often provided by informal caregivers who give individuals living with HIV with physical, emotional and spiritual care in dealing with the effects of HIV on their daily lives. These informal caregivers include significant others, parents, siblings, children and friends. Being a caregiver can be a most rewarding experience. There is a feeling of fulfillment; which comes from being able to support the HIV-positive person during difficult times. This shared experience makes the hardships of the process more bearable. We recognize the importance of social support system for individuals living with HIV, however there is also a necessity to understand the need for such a system for the caregiver. Providing care for someone with HIV can be a stressful experience making a network for caregivers a crucial component of buffering the process of giving care.

Social support is an important buffer for caregivers of people living with HIV/AIDS. In an article entitled "Caregivers' Experiences of Informal Support in the Context of HIV/AIDS," the research explores aspects of the caregivers' experiences and identifies that stress for caregivers is a result of not fully understanding the changes that occur with HIV. Caregivers do not necessarily understand the impact HIV can have on the body. This lack of information can create a potentially stressful situation between the person being cared for and the person giving care. The research acknowledges that this directly results in withdrawal of the caregiver from his or her social network because of what is perceived by the caregiver as a stigma surrounding HIV/AIDS and fear of discrimination and ostracism.

Unfortunately, there are only a limited number of resources specifically designed to help the caregiver deal with the effects of HIV. Many of the support systems available deal broadly with caregivers in general and are not specifically related to individuals who are caregivers for people living with HIV. According to "The Impact of HIV on Caregivers" -- an article discussing the support needs of caregivers working with individuals who are living with HIV -- often information and resources from Alzheimer's organizations were applied to caregivers of individuals who are HIV-positive. While this is important information for those who need a basic understanding of being a caregiver, the generalization from other populations to individuals living with HIV is not always appropriate. For example, there is a marked difference in age among the two groups. Individuals living with HIV/AIDS most are often younger than those who suffer from Alzheimer's. Also, medical information about HIV changes more frequently than medical information related to Alzheimer's making it difficult for a caregiver to stay abreast on the new medical information available. Another factor inhibiting generalization is HIV/AIDS also carries a stigma not attached to other diseases. There are several reasons why support networks for caregivers working with individuals who are HIV-positive must be developed to specific account for these issues specific to HIV.

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Limited choices for accessing the external support means there is no support system which addresses the needs of caregivers working with individuals who are HIV-positive. For this reason, many caregivers are turning towards an informal system made up of one or two confidants whom they feel can be trusted with the stresses happening within their lives. The need to model a community care system has become necessary. The support of a community in which a caregiver may feel accepted and comfortable will allow them to access the support needed to buffer the stresses experienced from such a role. Through the support of a community individual caregivers have the opportunity to become educated about HIV; thus helping dispel some of their fears about HIV and allowing them to become more open in other parts of their lives. Such community support has the potential to broaden the informal support network.

I would be remiss if I didn't take an opportunity to mention one resource for caregivers that is available within our community. THRIVE! Weekend is an educational weekend the goal of which is to inform to the community about HIV while providing an open and accepting environment for individuals to their informal support network. The information provided during THRIVE! Weekend is not only meant for individuals living with HIV. We encourage family, friends, caregivers and community members to experience our educational weekend to learn more about HIV/AIDS.

As mentioned above, one of the leading causes of stress for caregivers is not understanding HIV, the effects HIV has on the body and not knowing what one can do to help counteract these effects. During the weekend, there is also the opportunity to meet other individuals who may be in the same position as you. There is a breakout group called Family, Friends, and Caregivers with a underlying theme of helping caregivers care for themselves so that they can better care for other. This is a prime opportunity to help caregivers that realize there is an informal support network out there in that community which understands and works to help those who are living with HIV. I encourage you to come to THRIVE! to experience the support available to help everyone, even those caring for others!



  
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This article was provided by AIDS Survival Project. It is a part of the publication Survival News.
 
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