The intent of this interpretive phenomenological study was to increase understanding of the experience of spouses and adult daughters who place their family member with probable Alzheimer's disease in the nursing home. In total, 44 interview sessions were conducted with 9 spouses and 6 adult daughters who had placed their spouse or parent with dementia in the nursing home within the previous 12 months. In addition to the articulated accounts of their experiences, study participants completed measures of stress and depression. Through listening, coding, writing, and analysis of the data for paradigm cases, exemplars, and themes, the family caregivers' experiences of nursing home placement and care were partially disclosed.
The study participants reported loss and suffering. Themes related to loss and suffering included: collapse of a shared world, being rest-broken, experiencing protracted sorrow and yearning for their family member, being at the mercy of the institution, witnessing anguish and despair, and witnessing a creeping death. Patterns of involvement in their family member's care included being there, doing for, maintaining personhood, and being watchful. Some study participants witnessed a fifth pattern of under or no involvement by other residents' families and this was of concern to them. In addition, the caregivers described factors that supported or undermined their decision to place their family member. Identified factors included the response of their family member to placement, the caregiver's ability to let go of the care and to accept placement, and whether or not they found a nursing home they liked and where the staff were responsive to the care needs of their family member. Other factors that were supportive of the decision to place included positive interactions with nursing home staff, other professionals and paraprofessionals, family, and friends.
Increased understanding of the caregiver's experience with nursing home placement is relevant to nursing practice and has implications for future research, particularly related to communication with the caregiver and maintenance of the personhood of the individual with dementia. Furthermore, findings of this work are relevant to nursing home culture change initiatives and related policies.
|School:||Saint Louis University|
|School Location:||United States -- Missouri|
|Source:||DAI-B 70/10, Dissertation Abstracts International|
|Subjects:||Gerontology, Aging, Nursing|
|Keywords:||Aging, Alzheimer's disease, Dementia|
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