Caregivers

Folkman S; Chesney MA; Christopher-Richards A. Stress and coping in caregiving partners of men with AIDS. Psychiatric Clinics of North America, 1994 Mar, 17(1):35-53.

Abstract:

HIV disease presents profound challenges to primary caregivers including adjusting to the care recipient's disease progression, having increasing responsibilities for decision making as the disease progresses, responding to unexpected improvement, having to deal with a virtually uncontrollable disease, and managing role conflict and fatigue. Caregivers who are themselves infected with HIV face additional challenges. Caregiving partners of men with AIDS have high levels of dysphoric mood but, at the same time, they report levels of positive morale that are comparable to community norms. Caregivers sustain positive morale by deriving meaning from their caregiving. Health professionals are in a good position to support caregivers and, thereby, help their patients.

The role of informal carers in supporting gay men who have HIV related illness: what do they do and what are their needs?

Reference:

McCann K; Wadsworth E. The role of informal carers in supporting gay men who have HIV related illness: what do they do and what are their needs? AIDS Care, 1992, 4(1):25-34

Abstract:

Despite calls for a shift from hospital to community based care for people with HIV infection there has been some speculation about whether the facilities will actually be available. One central element of community care is informal care. Structured interviews with 125 people who were supporting gay men with HIV related illness including AIDS (hereafter PWA) provide information about the characteristics of people who were helping on an informal basis, what they did, and what support they needed for themselves. It was mostly male friends and partners who were offering support. Half the carers were carrying out specific physical tasks, though much of the support was more general, particularly emotional support. Where both people had experienced symptoms some reciprocity of caring was taking place. Resistance to being labelled a 'carer' was evident. Carers felt themselves inadequately supported both practically and emotionally and were specific about what could be done to change this.

The impact of care giving on informal or familial care givers.

Reference:

Raveis VH, Siegel K. The impact of care giving on informal or familial care givers. AIDS Patient Care. 1991; 39-43.

Abstract:

Traditionally family members (spouse, adult children, parents) are the main providers of emotional support and practical assistance to seriously ill persons. However, for those groups most affected by AIDS -- homosexuals, IVDUs, and infants born to high-risk group members -- traditional sources of social support may be weak or nonexistent and alternative sources of support are needed. For the care giver -- family member, spouse, lover or partner, friend, or volunteer buddy -- providing informal support and assistance to an AIDS patient throughout the course of the illness can be particularly stressful. Care giving involves a restructuring of care givers' personal and social lives, adversely affecting their outside employment, leading to feelings of fatigue, emotional and physical exhaustion, and imposing severe financial burdens. When an illness is long and extended, such as AIDS, care givers are at risk for becoming over-extended and depleting their physical, emotional, and financial resources. Consequently, AIDS patients may find that when their needs are greatest, they may have exhausted their informal resources for assistance, placing themselves at high risk for unmet needs.

Who are the primary caretakers of children born to HIV-infected mothers? Results from a multistate surveillance project.

Reference:

Schable B; Diaz T; et al. Who are the primary caretakers of children born to HIV-infected mothers? Results from a multistate surveillance project. Pediatrics, 1995 Apr, 95(4):511-5

Abstract:

Objective: To determine the primary caretakers of children born to women with human immunodeficiency virus (HIV) infection.

Methods: We interviewed women at least 18 years of age who have been reported with HIV infection or acquired immunodeficiency syndrome to local health departments in 10 cities and states regarding the primary caretaker of their children born since 1977.

Results: Of 541 HIV-infected women who had been pregnant since 1977, 88% had living children. These women comprised 478 family units (mother and children); 234 (49%) of these units consisted of two or more children. The most common primary caretakers for all children within a family unit were the mother alone (46%), grandparents (16%), and both mother and father (15%). When the mother used injection drugs or lived alone, in a shelter, or with friends, almost one quarter of all children were cared for by their grandparents. Only 30% of the mothers knew about child care assistance services, and only 8% had contacted or used these services.

Conclusions: Mothers with HIV, often alone, are the primary caretakers of their children. Increased provisions for child care assistance and planning for future permanent placement of orphaned children are urgently needed.

Identifying helpful and unhelpful behaviours of loved ones: the PWA's perspective.

Reference:

Hays RB; Magee RH; Chauncey S. Identifying helpful and unhelpful behaviours of loved ones: the PWA's perspective. AIDS Care, 1994, 6(4):379-92

Abstract:

Twenty-five gay men with AIDS were interviewed about their social support networks and asked to describe specific interpersonal exchanges with network members which they perceived to be helpful and unhelpful. Content-analysis of responses revealed 12 main categories of helpful behaviours (providing encouragement, companionship, information, practical assistance, material aid, philosophical perspective, support for other network members, expressing concern, sharing feelings, acting as role model, allowing reciprocity, interacting naturally) and 11 categories of unhelpful behaviours (pessimism, physical avoidance, criticizing one's response to AIDS or medical treatment, making unreasonable demands, patronizing attitude, rude comments, insincerity, breaking confidentiality, acting judgmental or ashamed). The perceived helpfulness of particular behaviours varied depending on which network member performed them and the timing of the support attempt. Implications for increasing the effectiveness of support attempts by network members are discussed.

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