African-American families' experiences in living with HIV/AIDS (Immune deficiency) Stieglitz, Kimberly Anne
ISBN: 0591519380
Summary:
The incidence of HIV/AIDS is rapidly increasing among families due to
the high rates of new infections in women and children of color, and
adolescents. Families of color with HIV are usually low-income,
marginalized, and have traditionally experienced access inequities in
health care. HIV research has not focused on women until recently,
and very few studies have been done with families and children.
Nonetheless, HIV has a tremendous impact on families, but very little
is known about the meanings and implications of the family as a unit.
The purpose of this study is to reveal how families experience living
with HIV/AIDS through the perspective of participants as individuals
and as family members.
Heideggerian hermeneutic phenomenology provided the framework for
this study. Five African American families participated (n = 14
members). Inclusion criteria were the presence of a biologic mother
and child with HIV, English as the first language, full
neurocognitive functioning, and the ability to articulate
experiences. Families had 2 to 4 participants. Ages ranged from 11 to
74. Forty-two in-depth interviews and 22 Kinetic Family Drawings were
obtained.
Hermeneutic analysis (Diekelmann & Allen, 1989) yielded seven themes,
one subtheme and one constitutive pattern. The themes are: Coming
Home to AIDS, Not Telling with a subtheme of Staying Away, Caring
Matters-Supportive Relationships, Hope as a Tenet of Living,
Spiritual and Philosophical Beliefs as Sustenance, Family Caregiving
as Doing What Needs to be Done, and Planning Ahead as Being a Parent.
The constitutive pattern which describes themes' interconnectedness
is Living Toward Dying.
Findings from this study can be used to inform health care providers
of important meanings of HIV illness to African American families.
Important issues for clinical practice include initiating discussions
about dying even while clients are essentially well, providing care
which meshes with families' needs and goals, decreasing
socioemotional barriers to care, and improved policies for a
marginalized population at great risk of being neglected. The study
identifies many areas in need of further research, in that each theme
and pattern needs to be much more clearly delineated, defined, and
extended for bridging gaps in the provision of care.
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