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The Reconceptualized Uncertainty in Illness Theory (RUIT) was used to investigate antecedents to, appraisals of, and ways of coping with stressful caregiving. Four focus groups with caregivers (8 males and 16 females) of relatives with dementia were conducted; 15 cared for their parents and the remainder cared for their spouses. They were recruited from an adult care center and other community settings in a metropolitan area in New England. The discussions were audiotaped and transcribed verbatim. Two researchers independently coded the transcripts. Thematic analysis was structured according to the RUIT. The study is unique in its application to caregivers as opposed to patients and to all of the elements of the RUIT. Caregivers experience uncertainty in similar ways to patients with life-altering illness. Symptom severity--lack of personal boundaries, repetitive and aggressive behaviors, and the need for constant care--was the most frequent source of stress. The appraisals were mostly negative and included feelings of resentment, a lack of support from family members, financial strains, and loss of freedom. Self-improvement and self-care were important aspects of coping. Spirituality and humor were other coping skills that respondents used. Not all respondents said they were coping and some also reported that support from health care providers was not always helpful. Nurses can help improve coping by explaining the factors that contribute to caregiver strain and uncertainty, and by assisting caregivers to anticipate the effects of the caregiving role.
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This study identified the types of caregiver stress and the caregiver and care management characteristics that are associated with this stress. 169 caregivers were recruited from a variety of community settings that cater to caregivers in a New England metropolitan area. They completed the Zarit Burden Interview (ZBI) and a questionnaire concerning their care recipient and caregiving arrangements. Principal Components Analysis on the ZBI resulted in five factors: personal strain/loss, uncertainty/inadequacy, social strain/embarrassment, anger, and dependency. The average age of the caregiver was 59.95 years (SD = 11.75) and the average age of the CR was 83.44 years (SD = 7.88). Of the 169 caregivers, 82% were women, 61.5% daughters/in-law or wives (12.9%), 34.3% were solo caregivers; 16.8% little or no burden, 39.9% reported mild to moderate burden, 35% moderate to severe burden, and 8.4% had severe burden. Dependency (22.4%) and personal strain/loss (13.7%) had the highest proportions reported as “often” to “nearly always.” The ZBI was predicted by only two caregiver characteristics, indicating that it is not sensitive to the experiences of different types of caregivers. Caregivers experience different types of burden depending on their gender, kinship roles, and levels of involvement in the care of their older relative. Solo caregiver status and age (younger) significantly predicted most if not all 5 burden types. Solo and young caregivers experienced the highest levels of caregiver burden. Social work practice must identify the caregiver’s life stage and other and self-expectations in relation to dependency, personal loss, embarrassment, anger, or uncertainty. © 2016 Taylor & Francis.
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- Journal Article (2)