Caregivers
Stress and coping in caregiving partners of men with
AIDS.
Reference:
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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