The Experience of Living‐Dying in a Nursing Home: Self‐Reports of Black and White Older Adults

Guided by concepts from the living-dying interval ( Pattison, 1977 ) this study sought to explore family members' experiences with a dying nursing home resident. In-depth interviews were conducted with 31 caregivers of residents who had died. Interviews were audiotaped and transcribed. Themes that illuminated families' experiences on the living-dying interval were: an acute medical crisis (trigger events, accumulation of stressors, level of care crisis); the living-dying phase (advance care planning, hospitalization, end-stage decisions); and the terminal phase (beginning of the end, awareness of dying). The results illustrate critical periods for social work intervention with families of dying nursing home residents.

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“…Nursing prior the active dying process (Engle, 1998;Engle, Fox-Hill & Graney, 1998;McCormick & Conley, 1995).…”

mentioning

confidence: 98%

The Living–Dying Interval in Nursing Home-Based End-of-Life Care: Family Caregivers' Experiences

Waldrop

Kusmaul

2011

Journal of Gerontological Social Work

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“…Three distinct trajectories of dying have been identified and described: (1) sudden death from an unexpected cause, (2) steady decline from a progressive disease with a terminal phase, and (3) an advanced illness marked by slow decline and periodic crises, but ending in a seemingly "sudden" death (IOM, 1997). Longer periods of living with a terminal illness have Handbook of Psychosocial Interventions with Older Adults increased the importance of developing evidence-based treatments that can alleviate suffering (Engle, Fox-Hill, & Graney, 1998). Psychosocial issues at the end of life include caregiving needs, financial burden, transportation, the existence of anxiety and depression, and the need for social support and communication within the family as well as with providers (Morrison & Meier, 2003).…”

Section: Demographics and Prevalencementioning

confidence: 98%

Chapter 11; Treatment at the End of Life

Waldrop

2008

Journal of Gerontological Social Work

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End-of-life care has gained recognition as an important interdisciplinary clinical domain during the past three decades largely because scientific and medical advances have changed the nature of dying in the US. Advances in the treatment of life-limiting ilness have typically focused on medical issues and on treating the physical symptoms that accompany the final stage of a terminal illness. However, because the lengthening life span has made more choices available at the end of life, there is also greater need for evidence-based psychosocial treatment to diminish some of the prolonged emotional, psychological treatment to diminish some of the prolonged emotional, psychological, social, and spiritual distress that accompanies dying. Both terminally ill older adults and their caregivers can be helped by interventions that address the need for information, education, preparation, communication, emotional support, and advocacy. This paper preents a review of evidence-based psychosocial treatments at the end of life for both older adults and their caregivers.

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“…The few studies that have been conducted described (a) what contributed to thriving in a nursing home (Bergland & Kirkevold, 2006), (b) the living-dying experiences of Black and White nursing home residents with terminal cancer (Engle et al, 1998), and (c) how the nursing home environment shaped their experiences when dying (Kayser-Jones, 2002).…”

Section: Background and Significancementioning

confidence: 99%

“…First person accounts of persons receiving care in a nursing home are sparse, typically focusing on the elderly; the scarcity of qualitative research is in part due to the frailty and cognitive impairment of many nursing home residents who are unable to give informed consent (Bergland & Kirkevold, 2006;Engle, Fox-Hill, & Graney, 1998;Kayser-Jones, 2002). The few studies that have been conducted described (a) what contributed to thriving in a nursing home (Bergland & Kirkevold, 2006), (b) the living-dying experiences of Black and White nursing home residents with terminal cancer (Engle et al, 1998), and (c) how the nursing home environment shaped their experiences when dying (Kayser-Jones, 2002).…”

Section: Background and Significancementioning

confidence: 99%

“Can You Give Me Respect?” Experiences of the Urban Poor on a Dedicated AIDS Nursing Home Unit

Hughes

Davies²,

Guðmundsdóttir³

2008

Journal of the Association of Nurses in AIDS Care

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In this interpretive phenomenology study, 10 impoverished adults with advanced HIV disease, ages 35 to 58 years, described their understanding of dignity and their everyday experiences in an urban AIDS-dedicated nursing home unit. Three group interviews, along with field notes, were audiotaped, transcribed, and analyzed. For most, dignity meant respect received by others and respect for oneself; some did not understand the word dignity. Receiving respectful care enhanced a sense of dignity for some, and for others, difficulties with caregivers led to feeling unrecognized or disrespected. Everyday experiences of living on the unit included narratives about how they got there, taking antiretrovirals, escaping, the unit as a community of caring, witnessing deaths, relationships with nurses, the unit as a place of safety, and knowing when to leave. This study contributes to knowledge of marginalized minority groups with advanced HIV disease whose experiences often remain silenced.

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The Experience of Living‐Dying in a Nursing Home: Self‐Reports of Black and White Older Adults

Cited by 68 publications

References 18 publications

The Living–Dying Interval in Nursing Home-Based End-of-Life Care: Family Caregivers' Experiences

The Living–Dying Interval in Nursing Home-Based End-of-Life Care: Family Caregivers' Experiences

Chapter 11; Treatment at the End of Life

“Can You Give Me Respect?” Experiences of the Urban Poor on a Dedicated AIDS Nursing Home Unit

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