| Abstrakt: |
OBJECTIVE: The purpose of this study was to examine the experience of providing informal care over time to a family member or partner with HIV. DESIGN: Cross-sectional and longitudinal. SETTING: A midwestern, urban community. All but one interview was conducted in the participants' home. POPULATION: Participants were 20 persons who were providing informal care to an adult partner or family member who met the criteria for AIDS. Eight of the participants were women and 12 were men. The ages of the participants ranged from 26 to 62 years. Twelve of the participants were persons contacted through six community health care agencies. Eight participants responded to an advertisement placed in an AIDS task force bulletin. INTERVENTIONS: The interviews began with an open-ended question to encourage participants to share their experiences as caregivers. Follow-up interviews focused upon participants' perceptions of how the nature of their caregiving experience had changed since the previous interview. The tape-recorded interviews were transcribed verbatim by a professional transcriber. The data were coded using an inductive technique and thematically analysed. The first data collected were compared for similarities and differences and coded into categories that reflected participants' experiences. Relationships among categories continued to be developed until a pattern among relationships emerged. MAIN OUTCOME MEASURE(S): The informal care providers were found to engage in a variety of interacting, and often conflicting, psychosocial and instrumental processes. Although the care providers struggled with various sources of uncertainty and distress, their competence in managing the responsibilities of care improved over time. When periods of equanimity were realized, caregivers experienced a heightened sense of coherence, self-regard, and personal growth. These processes occurred over three emergent phases: (a) transitions to care, (b) living the burden, and (c) facing the void. RESULTS/CONCLUSIONS: Further study is needed to establish whether the sense of personal growth that may develop over the course of caregiving persists over time, or how development occurring with the caregiving experience affects subsequent life experiences. Additional knowledge also is needed to delineate more precisely how the HIV caregiving experience compares to caregiving for persons with other terminal chronic illnesses. Finally, additional knowledge is needed to identify intervention strategies that may effectively support HIV informal caregivers who have difficulty meeting the demands of this important and challenging role. [CINAHL abstract] [ABSTRACT FROM AUTHOR] |
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