This study, using ethnographically-based interviews, sought to describe how chronically ill older... more This study, using ethnographically-based interviews, sought to describe how chronically ill older adults experience a new cancer diagnosis and the effects of this on their interpretations of personal health, aging, and the future. Three semi-structured interviews were conducted with each of the fifteen informants. We asked questions that explored each individual's life history, chronic illness occurrence, and direct experiences with cancer. Interviews were structured to provide social and historical contexts to enhance our understanding of the informants' illness narratives. Interview transcripts were analyzed thematically to describe how individuals described the cancer experience, its meaning, and its consequences. One of the major findings of our study was the role of cancer in disrupting individual biography, an interruption that fragmented time into three distinct segments: the Recalled Past, the Existent Present, and the Imagined Future. We highlight three main themes around the experience of illness-related time: (1) disruption found in individual biographical accounts as a result of fragmented time dimensions; (2) altered projections of a continuous sense of self into the future; and (3) modified treatment decisions resulting from a perceived altered life course and the finitude of advancing age.We further introduce the concept of Anomalous Time as a permutation of time central to individual experiences of cancer. Implications for how older adults understood their cancer and individual reactions relevant to seeking care are discussed.
Page 1. Ageing and Society, n , 1991,417-442 Generativity in Cultural Context: The Self, Death an... more Page 1. Ageing and Society, n , 1991,417-442 Generativity in Cultural Context: The Self, Death and Immortality as Experienced by Older American Women BAINE B. ALEXANDER, ROBERT L. RUBINSTEIN, MARCENE GOODMAN and MARK LUBORSKYf ...
The dominant clinical view of dementia and its treatment are through the biomedical lens-an appro... more The dominant clinical view of dementia and its treatment are through the biomedical lens-an approach to understanding the dementias that focuses on bodily and mental pathology and symptomology. Person-centered care (PCC) represents a shift in focus away from biomedical approach in elder care. The primary objective of this research was to examine how PCC was defined, shaped, and practiced by staff members within a dementia care setting. Ethnographic data were collected over an 8-month period using participant observation (400 hr) and ethnographic interviews with 20 people with dementia and 25 staff members of Cedar Winds, a dementia-specific long-term care setting that had a strong organizational support for using a person-centered approach to dementia care. The observed cultural matrix of othering is the focus of this article and represents the cultural processes that prevented PCC from being enacted within Cedar Winds. The three main characteristics through which the residents were...
PURPOSE OF THE STUDY: We explored how generativity and well-being merged in a group of childless ... more PURPOSE OF THE STUDY: We explored how generativity and well-being merged in a group of childless older women: African and Hispanic Roman Catholic Religious Sisters, linking two minority identity characteristics. DESIGN AND METHODS: We qualitatively interviewed 8 Oblate Sisters of Providence (OSP), by providing a framework for examining the range of the women's generativity-cultural spheres in which generativity is rooted and outlets for generativity. RESULTS: Early negative experiences, such as fleeing despotism in Haiti and Cuba and racism within the Catholic Church, occurred alongside positive experiences-families who stressed education, and Caucasian Religious who taught children of color. This became a foundation for the Sister's generative commitment. IMPLICATIONS: Findings highlight that research gains from a phenomenological understanding of how religious faith promotes generative cognitions and emotions. Findings also reveal that the experiences of a subculture in society-African-American elderly women religious-add to theories and definitions of generativity.
This paper explores the role of religious belief in the experiences of dying and death in a Catho... more This paper explores the role of religious belief in the experiences of dying and death in a Catholic nursing home. The home appeals to residents and their families due to the active religious presence. Thus, religion is a salient element of the "local culture" which exists in this long-term care setting. The preeminence of faith within the organization and the personal religious convictions of staff, residents, and families may drive how death and dying are discussed and experienced in this setting, as well as the meanings that are attached to them. This paper examines the relationship between faith and the experience and meaning of death in this nursing home. We present themes that emerged from open-ended interviews with residents, family members, and staff, gathered between 1996 and 2004. The data indicate that people select the home due to their Catholic faith and the home's religious tone. Themes also show that belief in God and an afterlife helps shape the experience of dying and death for our informants. Our paper does not compare ease of dying with other nursing homes or within other belief systems.
Food shopping, preparation, and serving traditionally tend to be the domain of women. This articl... more Food shopping, preparation, and serving traditionally tend to be the domain of women. This article, however, focuses on the rarely examined world of frail old men who live in the community and on the meanings and themes that underlie their attitudes and behaviors in relation to food and eating. Based on the analyses of face-to-face qualitative interviews with 15 men,
ABSTRACT Living and dying are inextricably associated in nursing homes. It is not unusual for old... more ABSTRACT Living and dying are inextricably associated in nursing homes. It is not unusual for old nursing home residents to express a wish to die. This article examines interwoven patterns of family responses to resident's wish to die. As part of a multi-site ethnographic study of bereavement in long-term care, we analyzed themes in audio-transcribed in-depth qualitative interviews with 20 family members in two religiously and culturally diverse nursing homes. Rooted in the contexts of the nursing home, the family system, and the socio-cultural milieu, three patterns of family responses emerged: avoidance, disconfirmation, and acceptance of the wish to die. The family members' responses reflect their efforts to make meaning of the resident's wish both for the resident and for themselves. Rather than viewing the wish to die as a symptom of mental health problems, they perceive it as reflecting the existential situation of the resident.
Purpose of the study:Based on ethnographic interviews, we discuss three ideas we believe will exp... more Purpose of the study:Based on ethnographic interviews, we discuss three ideas we believe will expand knowledge of older informants' thoughts about and representations of generativity. We adapt the notion of "dividuality" as developed in cultural anthropology to reframe ideas on generativity. The term dividuality refers to a condition of interpersonal or intergenerational connectedness, as distinct from individuality. We also extend previous definitions of generativity by identifying both objects of generative action and temporal and relational frameworks for generative action.Design:We define 4 foci of generativity (people, groups, things, and activities) and 4 spheres of generativity (historical, familial, individual, and relational) based in American culture and with which older informants could easily identify. The approach outlined here also discusses a form of generativity oriented to the past in which relationships with persons in senior generations form a kind of generative action since they are involved in caring for the origins of the self and hence of future generative acts. These 3 elements of a new framework will allow researchers to pose critical questions about generativity among older adults. Such questions include (a) How is the self, as culturally constituted, involved in generative action? and (b) What are the types of generativity within the context of American culture and how are they spoken about? Each of the above points is directly addressed in the data we present below.Methods:We defined these domains through extended ethnographic interviews with 200 older women.Results and implications:The article addresses some new ways of thinking about generativity as a construct, which may be useful in understanding the cultural personhood of older Americans.
The authors explored a sample of families&amp... more The authors explored a sample of families' beliefs concerning creation of meaning in the recent death of the elderly husband and father and his existence in an afterlife. Data were collected through qualitative inquiry. Family members from 34 families were asked about their reaction to their loved one's death. Three themes emerged from participants' responses (a) the significance of context in the father and husband's life and death; (b) family members' folk beliefs; and (c) recalling the after-death ritual. The themes interpenetrate at the point where family members, although doubtful, hoped their loved one continues in an afterlife.
This qualitative research study explored the personal meaning of suffering to a group of 40 commu... more This qualitative research study explored the personal meaning of suffering to a group of 40 community-dwelling elders, stratified by gender and race. We recruited 40 informants who were 70 years old or older from the Philadelphia, PA, area for extended qualitative interviews, which elicited their life story and experiences and philosophies about suffering. Cells contained 10 African American men and women and 10 European American men and women each (N = 40). Through analysis of data, we placed elders' experiences of suffering under three general themes: suffering as lack of control, suffering as loss, and the value of suffering. Informants developed a unique definition, attribution, theory, and theodicy about suffering based on the particularity of the experience as well as how they "fit" suffering into their lives as a whole. Brief case studies illustrate how themes emerged in elders' stories of suffering. On the basis of this research, it appears that, although they have some similarities, elders' experiences of suffering are unique and incomparable. Similarities concern informants' connection of suffering with finitude. The incomparability of suffering experiences relate to informants' unique personal histories, perceptions, and "cause" of suffering. Through the process of the interview, elders connect the suffering experience to the entirety of the life lived and the story of suffering to the life story.
Caregiving staff need to have a way to make sense out of the death and dying of nursing home resi... more Caregiving staff need to have a way to make sense out of the death and dying of nursing home residents. A range of cultural and institutional factors (e.g., disenfranchised grief; professional distance) thwart their expression of grief. This research examines the neglected area of staff's social construction of the meaning of their relationship with dying and deceased residents. As part of a multisite ethnographic study of bereavement in long-term care, we analyzed themes in audiotranscribed in-depth qualitative interviews with 26 hands-on caregiving staff members (over two thirds were nurse's aides) in two religiously and culturally diverse nursing homes. A theme of family metaphor emerged as staff members spoke of family-like thoughts, feelings, and behaviors toward long-term residents. Staff members spontaneously told stories of deaths in their own families, and they described how the meanings of resident deaths and family deaths were interrelated. The family metaphor provides cultural scripts that enable staff to overcome barriers to the expression of grief. The family metaphor structures the meaning for staff of death and bereavement, and it provides a bridge between their work and personal experience.
Purpose of the Study: This article presents a narrative-based case study about chronic illness an... more Purpose of the Study: This article presents a narrative-based case study about chronic illness and genetic uncertainty and their relationship to generativity throughout the life course. Our focus is a woman who experienced vision loss early in life and interpreted its impact on her generativity through present-day biographical rescripting. Design and Methods: The case we present was chosen from the study “Generativity and Lifestyles of Older Women,” which explored life history, social relations, and forms of generativity in an ethnographic interview format with 200 older women. Results: In constructing a present-day identity, the informant used shifting and conflicted self-constructions to produce a self-image as generative. Three critical themes emerged in understanding her life course: (a) retrospective interpretations of autonomy; (b) renegotiating control in the present, and (c) generativity across the life course.
Implications: This article contributes an understanding of childlessness as observed through the lenses of chronic illness, autonomy, and generativity. We conclude that a history of chronic illness, as it is co-occurring with internal debates about the meaning of key life events, may influence older adults’ present-day identity. Implications for later life care needs are discussed.
This study, using ethnographically-based interviews, sought to describe how chronically ill older... more This study, using ethnographically-based interviews, sought to describe how chronically ill older adults experience a new cancer diagnosis and the effects of this on their interpretations of personal health, aging, and the future. Three semi-structured interviews were conducted with each of the fifteen informants. We asked questions that explored each individual's life history, chronic illness occurrence, and direct experiences with cancer. Interviews were structured to provide social and historical contexts to enhance our understanding of the informants' illness narratives. Interview transcripts were analyzed thematically to describe how individuals described the cancer experience, its meaning, and its consequences. One of the major findings of our study was the role of cancer in disrupting individual biography, an interruption that fragmented time into three distinct segments: the Recalled Past, the Existent Present, and the Imagined Future. We highlight three main themes around the experience of illness-related time: (1) disruption found in individual biographical accounts as a result of fragmented time dimensions; (2) altered projections of a continuous sense of self into the future; and (3) modified treatment decisions resulting from a perceived altered life course and the finitude of advancing age.We further introduce the concept of Anomalous Time as a permutation of time central to individual experiences of cancer. Implications for how older adults understood their cancer and individual reactions relevant to seeking care are discussed.
Page 1. Ageing and Society, n , 1991,417-442 Generativity in Cultural Context: The Self, Death an... more Page 1. Ageing and Society, n , 1991,417-442 Generativity in Cultural Context: The Self, Death and Immortality as Experienced by Older American Women BAINE B. ALEXANDER, ROBERT L. RUBINSTEIN, MARCENE GOODMAN and MARK LUBORSKYf ...
The dominant clinical view of dementia and its treatment are through the biomedical lens-an appro... more The dominant clinical view of dementia and its treatment are through the biomedical lens-an approach to understanding the dementias that focuses on bodily and mental pathology and symptomology. Person-centered care (PCC) represents a shift in focus away from biomedical approach in elder care. The primary objective of this research was to examine how PCC was defined, shaped, and practiced by staff members within a dementia care setting. Ethnographic data were collected over an 8-month period using participant observation (400 hr) and ethnographic interviews with 20 people with dementia and 25 staff members of Cedar Winds, a dementia-specific long-term care setting that had a strong organizational support for using a person-centered approach to dementia care. The observed cultural matrix of othering is the focus of this article and represents the cultural processes that prevented PCC from being enacted within Cedar Winds. The three main characteristics through which the residents were...
PURPOSE OF THE STUDY: We explored how generativity and well-being merged in a group of childless ... more PURPOSE OF THE STUDY: We explored how generativity and well-being merged in a group of childless older women: African and Hispanic Roman Catholic Religious Sisters, linking two minority identity characteristics. DESIGN AND METHODS: We qualitatively interviewed 8 Oblate Sisters of Providence (OSP), by providing a framework for examining the range of the women's generativity-cultural spheres in which generativity is rooted and outlets for generativity. RESULTS: Early negative experiences, such as fleeing despotism in Haiti and Cuba and racism within the Catholic Church, occurred alongside positive experiences-families who stressed education, and Caucasian Religious who taught children of color. This became a foundation for the Sister's generative commitment. IMPLICATIONS: Findings highlight that research gains from a phenomenological understanding of how religious faith promotes generative cognitions and emotions. Findings also reveal that the experiences of a subculture in society-African-American elderly women religious-add to theories and definitions of generativity.
This paper explores the role of religious belief in the experiences of dying and death in a Catho... more This paper explores the role of religious belief in the experiences of dying and death in a Catholic nursing home. The home appeals to residents and their families due to the active religious presence. Thus, religion is a salient element of the "local culture" which exists in this long-term care setting. The preeminence of faith within the organization and the personal religious convictions of staff, residents, and families may drive how death and dying are discussed and experienced in this setting, as well as the meanings that are attached to them. This paper examines the relationship between faith and the experience and meaning of death in this nursing home. We present themes that emerged from open-ended interviews with residents, family members, and staff, gathered between 1996 and 2004. The data indicate that people select the home due to their Catholic faith and the home's religious tone. Themes also show that belief in God and an afterlife helps shape the experience of dying and death for our informants. Our paper does not compare ease of dying with other nursing homes or within other belief systems.
Food shopping, preparation, and serving traditionally tend to be the domain of women. This articl... more Food shopping, preparation, and serving traditionally tend to be the domain of women. This article, however, focuses on the rarely examined world of frail old men who live in the community and on the meanings and themes that underlie their attitudes and behaviors in relation to food and eating. Based on the analyses of face-to-face qualitative interviews with 15 men,
ABSTRACT Living and dying are inextricably associated in nursing homes. It is not unusual for old... more ABSTRACT Living and dying are inextricably associated in nursing homes. It is not unusual for old nursing home residents to express a wish to die. This article examines interwoven patterns of family responses to resident's wish to die. As part of a multi-site ethnographic study of bereavement in long-term care, we analyzed themes in audio-transcribed in-depth qualitative interviews with 20 family members in two religiously and culturally diverse nursing homes. Rooted in the contexts of the nursing home, the family system, and the socio-cultural milieu, three patterns of family responses emerged: avoidance, disconfirmation, and acceptance of the wish to die. The family members' responses reflect their efforts to make meaning of the resident's wish both for the resident and for themselves. Rather than viewing the wish to die as a symptom of mental health problems, they perceive it as reflecting the existential situation of the resident.
Purpose of the study:Based on ethnographic interviews, we discuss three ideas we believe will exp... more Purpose of the study:Based on ethnographic interviews, we discuss three ideas we believe will expand knowledge of older informants' thoughts about and representations of generativity. We adapt the notion of "dividuality" as developed in cultural anthropology to reframe ideas on generativity. The term dividuality refers to a condition of interpersonal or intergenerational connectedness, as distinct from individuality. We also extend previous definitions of generativity by identifying both objects of generative action and temporal and relational frameworks for generative action.Design:We define 4 foci of generativity (people, groups, things, and activities) and 4 spheres of generativity (historical, familial, individual, and relational) based in American culture and with which older informants could easily identify. The approach outlined here also discusses a form of generativity oriented to the past in which relationships with persons in senior generations form a kind of generative action since they are involved in caring for the origins of the self and hence of future generative acts. These 3 elements of a new framework will allow researchers to pose critical questions about generativity among older adults. Such questions include (a) How is the self, as culturally constituted, involved in generative action? and (b) What are the types of generativity within the context of American culture and how are they spoken about? Each of the above points is directly addressed in the data we present below.Methods:We defined these domains through extended ethnographic interviews with 200 older women.Results and implications:The article addresses some new ways of thinking about generativity as a construct, which may be useful in understanding the cultural personhood of older Americans.
The authors explored a sample of families&amp... more The authors explored a sample of families' beliefs concerning creation of meaning in the recent death of the elderly husband and father and his existence in an afterlife. Data were collected through qualitative inquiry. Family members from 34 families were asked about their reaction to their loved one's death. Three themes emerged from participants' responses (a) the significance of context in the father and husband's life and death; (b) family members' folk beliefs; and (c) recalling the after-death ritual. The themes interpenetrate at the point where family members, although doubtful, hoped their loved one continues in an afterlife.
This qualitative research study explored the personal meaning of suffering to a group of 40 commu... more This qualitative research study explored the personal meaning of suffering to a group of 40 community-dwelling elders, stratified by gender and race. We recruited 40 informants who were 70 years old or older from the Philadelphia, PA, area for extended qualitative interviews, which elicited their life story and experiences and philosophies about suffering. Cells contained 10 African American men and women and 10 European American men and women each (N = 40). Through analysis of data, we placed elders' experiences of suffering under three general themes: suffering as lack of control, suffering as loss, and the value of suffering. Informants developed a unique definition, attribution, theory, and theodicy about suffering based on the particularity of the experience as well as how they "fit" suffering into their lives as a whole. Brief case studies illustrate how themes emerged in elders' stories of suffering. On the basis of this research, it appears that, although they have some similarities, elders' experiences of suffering are unique and incomparable. Similarities concern informants' connection of suffering with finitude. The incomparability of suffering experiences relate to informants' unique personal histories, perceptions, and "cause" of suffering. Through the process of the interview, elders connect the suffering experience to the entirety of the life lived and the story of suffering to the life story.
Caregiving staff need to have a way to make sense out of the death and dying of nursing home resi... more Caregiving staff need to have a way to make sense out of the death and dying of nursing home residents. A range of cultural and institutional factors (e.g., disenfranchised grief; professional distance) thwart their expression of grief. This research examines the neglected area of staff's social construction of the meaning of their relationship with dying and deceased residents. As part of a multisite ethnographic study of bereavement in long-term care, we analyzed themes in audiotranscribed in-depth qualitative interviews with 26 hands-on caregiving staff members (over two thirds were nurse's aides) in two religiously and culturally diverse nursing homes. A theme of family metaphor emerged as staff members spoke of family-like thoughts, feelings, and behaviors toward long-term residents. Staff members spontaneously told stories of deaths in their own families, and they described how the meanings of resident deaths and family deaths were interrelated. The family metaphor provides cultural scripts that enable staff to overcome barriers to the expression of grief. The family metaphor structures the meaning for staff of death and bereavement, and it provides a bridge between their work and personal experience.
Purpose of the Study: This article presents a narrative-based case study about chronic illness an... more Purpose of the Study: This article presents a narrative-based case study about chronic illness and genetic uncertainty and their relationship to generativity throughout the life course. Our focus is a woman who experienced vision loss early in life and interpreted its impact on her generativity through present-day biographical rescripting. Design and Methods: The case we present was chosen from the study “Generativity and Lifestyles of Older Women,” which explored life history, social relations, and forms of generativity in an ethnographic interview format with 200 older women. Results: In constructing a present-day identity, the informant used shifting and conflicted self-constructions to produce a self-image as generative. Three critical themes emerged in understanding her life course: (a) retrospective interpretations of autonomy; (b) renegotiating control in the present, and (c) generativity across the life course.
Implications: This article contributes an understanding of childlessness as observed through the lenses of chronic illness, autonomy, and generativity. We conclude that a history of chronic illness, as it is co-occurring with internal debates about the meaning of key life events, may influence older adults’ present-day identity. Implications for later life care needs are discussed.
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Papers by Robert Rubinstein
course and the finitude of advancing age.We further introduce the concept of Anomalous Time as a permutation of time central to individual experiences of cancer. Implications for how older adults understood their cancer and individual reactions relevant to seeking care are discussed.
Implications: This article contributes an understanding of childlessness as observed through the lenses of chronic illness, autonomy, and generativity. We conclude that a history of chronic illness, as it is co-occurring with internal debates about the meaning of key life events, may influence older adults’ present-day identity. Implications for later life care needs are discussed.
course and the finitude of advancing age.We further introduce the concept of Anomalous Time as a permutation of time central to individual experiences of cancer. Implications for how older adults understood their cancer and individual reactions relevant to seeking care are discussed.
Implications: This article contributes an understanding of childlessness as observed through the lenses of chronic illness, autonomy, and generativity. We conclude that a history of chronic illness, as it is co-occurring with internal debates about the meaning of key life events, may influence older adults’ present-day identity. Implications for later life care needs are discussed.