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This paper explores narrative literature as a means of inquiry into the sense of self in depression. Described as a disease, an identity and a way of life, depression is influenced by both internal and external factors. Although brain research has provided new insight into the relationship between neurotransmitter function and depression, the symptoms are experienced by individuals whose lives are intertwined with historical and sociocultural interpretations of illness and its manifestations. At the intersection of science and the humanities, narratives aid in the interpretation of lived experiences, provide a window to that experience, and a public medium that engages writers and readers as they interpret the world. Engaging narratives to interpret both experience and medical jargon may reveal for both those experiencing depression and those engaged in their care, a way of mediating that experience. Narratives can help dissect and thus illuminate the official language of medicine and psychiatry and the personal language of depression. Such a window can enhance the opportunities for empathy and care.
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The purpose of this study was to gain an understanding of the ambiguities and uncertainties experienced by a diverse group of African-American caregivers. The study applied Schlossberg's transition theory (TT) and Mishel’s revised uncertainty theory to narratives of self-identified African-American caregivers who provided care at least 5 h a week. The men (6) and women (8) were mostly unmarried, mostly caring for a parent or grandparent. The caregivers’ average age was 52 (SD = 19; ages ranged from 24 to 82 years); and the care recipients’ average age was 84 (SD = 9). Six care recipients had dementia and the remainder had multiple disease diagnoses. Narratives were obtained by in-depth interviews or focus group discussions. These were audio-recorded, transcribed verbatim professionally and analyzed independently by trained coders. Schlossberg’s TT contextualized whereas Mishel’s RUIT illuminated the characteristics of the transition, its associated uncertainty, and their relationship to the development of caregiver stress. Situational factors such as difficulties with illness symptoms of the care recipient, conflict between previous experience and current expectations and the adjustments to the new caregiving role, burdened younger caregivers more than older caregivers. Self-factors related to lack of knowledge about the illness and feelings of lack of control. Social support was predominantly provided by family members, and its absence resulted in conflict among siblings and caregiver stress. The most common coping strategies include religiosity, expectations of reciprocity, and coming to terms with the uncertainty. Understanding the feelings, perceptions and needs of caregivers in transition is tantamount to providing nursing care.
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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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