Caregiving for Older Latinos at End of Life

Carrion, Iraida V.; Nedjat-Haiem, Frances R.

doi:10.1177/1049909112448227

Cited by 21 publications

(16 citation statements)

References 46 publications

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“…These findings are consistent with observations in non–dialysis populations describing more intensive patterns of end-of-life care among Hispanics as compared with other racial/ethnic groups that have been variously attributed to differences in preferences, knowledge, language, acculturation and immigration status. 36–42 …”

Section: Discussionmentioning

confidence: 99%

Trends in Receipt of Intensive Procedures at the End of Life Among Patients Treated With Maintenance Dialysis

Eneanya

Hailpern

O’Hare

et al. 2017

American Journal of Kidney Diseases

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Background Many dialysis patients receive intensive procedures intended to prolong life at the very end of life. However, little is known about trends over time in use of these procedures. We describe temporal trends in receipt of inpatient intensive procedures during the last six months of life among patients treated with maintenance dialysis. Study Design Mortality follow-back study. Setting & Participants 649,607 adult Medicare beneficiaries on maintenance dialysis who died in 2000–2012. Predictors Time period of death (2000–2003, 2004–2008, or 2009–2012), age at the time of death (18–59, 60–64, 65–69, 70–74, 75–79, 80–84 and ≥ 85 years) and race/ethnicity (Hispanic, non-Hispanic Black, or non-Hispanic White). Outcome Receipt of an inpatient intensive procedure (defined as invasive mechanical ventilation/intubation, tracheostomy, gastrostomy/jejunostomy tube insertion, enteral or parenteral nutrition, or cardiopulmonary resuscitation) during the last six months of life. Results Overall, 34% of cohort patients received an intensive procedure in the last six months of life, increasing from 29% in 2000 to 36% in 2012 (with 2000–2003 as the referent category, adjusted risk ratios [RRs] were 1.06 [95% CI, 1.05–1.07] and 1.10 [95% CI, 1.09–1.12] for 2004–2008 and 2009–2012, respectively). Use of intensive procedures increased more markedly over time in younger versus older patients (comparing 2009–2012 to 2000–2003, the adjusted RR was 1.18 [95% CI, 1.15–1.20] for the youngest age group, as opposed to 1.00 [95% CI, 0.96–1.04] for the oldest age group). Comparing 2009–2012 to 2000–2003, the use of intensive procedures increased more dramatically for Hispanic patients than for non-Hispanic Black or non-Hispanic White patients (adjusted RRs of 1.18 [95% CI, 1.14–1.22], 1.09 [95% CI, 1.07–1.11], and 1.10 [95% CI, 1.08–1.12], respectively). Limitations Data sources do not provide insight into reasons for observed trends in use of intensive procedures. Conclusions Among patients treated with maintenance dialysis, there is a trend toward more frequent use of intensive procedures at the end of life, especially in younger patients and those of Hispanic ethnicity.

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Section: Discussionmentioning

confidence: 99%

Trends in Receipt of Intensive Procedures at the End of Life Among Patients Treated With Maintenance Dialysis

Eneanya

Hailpern

O’Hare

et al. 2017

American Journal of Kidney Diseases

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“…In one case of placement, the 24-hour complete care became physically impossible and in the other, the caregiver suffered an incapacitating stroke. Essentially, these MA caregivers provided assistance across the continuum of care including palliative and end-of-life care, a phenomenon about which little is known in this population (Carrion & Nedjat-Haiem, 2012; Cruz-Oliver, Talamantes, & Sanchez-Reilly, 2013; NIH, NINR, 2013). Given the sparse literature addressing MA caregiving families and, in particular, their involvement in palliative and end-of-life care, a significant knowledge gap stymies interventionists in conceptualizing effective strategies for family support during this time.…”

Section: What Does Worry Look Like?mentioning

confidence: 99%

Worry Among Mexican American Caregivers of Community-Dwelling Elders

Evans

Coon

Belyea

2014

Hispanic Journal of Behavioral Sciences

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This mixed methods, multi-site, National Institute of Nursing Research (NINR)-funded, interdisciplinary, descriptive study aimed to identify expressions of worry in qualitative data obtained from caregiving Mexican American (MA) families assisting older adults. The purpose of this portion of the inquiry was to determine how worry is expressed, what happens to caregivers when they worry, and what adaptive strategies they used. We examined semi-structured interviews completed during six in-home visits with 116 caregivers. We identified 366 worry quotations from 639 primary documents in ATLAS.ti, entered them into matrices, and organized findings under thematic statements. Caregivers expressed cultural and contextual worries, worried about transitions and turning points in care, and identified adaptive strategies. Despite these strategies, worry persisted. Constant worry may be an allied, important aspect of caregiver burden. We need additional longitudinal research to better understand the experience of MA caregivers for older adults and to provide empirically supported interventions, programs, and services that reduce worry.

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“…Family caregivers experienced changes to normative behaviors and relationships with the ill person as children became caregivers to parents (Duggleby et al, 2010;Phillips, 2009), or family members had to assume roles and responsibilities that were previously fulfilled by the ill person (Edwards et al, 2012;Waldrop et al, 2005). As illnesses progressed to latter stages, increased responsibilities of caring for the ill person often led to decreased time available for work, school, (Carrion & Nedjat-Haiem, 2013), social, and family activities (Lockie et al, 2010). Many family caregivers also experienced financial strain due to lost work time or loss of income by either the ill person or the family member acting in the primary care giver role (Carrion & Nedjat-Haiem, 2013;Waldrop et al, 2005).…”

Section: Family Transitions In Advanced Serious Illnessmentioning

confidence: 99%

“…As illnesses progressed to latter stages, increased responsibilities of caring for the ill person often led to decreased time available for work, school, (Carrion & Nedjat-Haiem, 2013), social, and family activities (Lockie et al, 2010). Many family caregivers also experienced financial strain due to lost work time or loss of income by either the ill person or the family member acting in the primary care giver role (Carrion & Nedjat-Haiem, 2013;Waldrop et al, 2005).…”

Section: Family Transitions In Advanced Serious Illnessmentioning

confidence: 99%

“…This complicated transitions and created strain and discord within the family. Findings revealed that family discord and caregiver strain are not limited to the EOL phase of illness (Carrion & Nedjat-Haiem, 2013;Lockie et al, 2010;Waldrop et al, 2005;Winter& Parks, 2008), but span across the illness trajectory and affect multiple family members as they navigate and negotiate care for their relative. Furthermore, the ill person was often privy to complicating circumstances and tried to spare their family additional stress and worry when possible by not sharing critical information or choosing care to in order to avoid burdening family members.…”

Section: Family/kinshipmentioning

confidence: 99%

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Family Descriptions of the Influence of Cultural Factors on Transitions in Serious Illness

Gallo¹

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Nearly 65 million Americans served as care provider to an ill or disabled adult, and over 1.6 million Americans participated in the care of a family member in hospice. Families experience transitions, or changes, throughout the serious illness trajectory. Throughout transitions in serious illness, families participate in the care, support, and decision-making for their ill family member. Families' lives are often disrupted during this time and families experience emotional, physical and psychological distress during transitions. In spite of this, families are rarely included in care, and little is known about how families make sense of transitions. Culture, and the factors that shape it, can impact family interpretations of illness and meanings of illness transitions. This qualitative study explored family descriptions of the influence of four cultural factors (kinship/family, knowledge systems, community/social systems, and faith/religion) on transitions in serious illness during an understudied transitional time span, from the point of diagnosis up to the EOL phase. Eleven participant interviews were gathered from twelve family members of persons recently deceased due to serious illness. Data collection and analysis were guided by the concepts of culture and transitions in illness and conventional content analysis methods. Seven themes emerged from the data that described the influence of cultural factors on family transitions in serious illness: (1) family takes care of family; (2) we're "going to fight this;" (3) "seeing" and experience were believing; (4) families "figured it out;" (5) community eased the family burden; (6) health professionals both eased and hindered family transitions; and (7) "God was always in the background." Findings support the need for provision of patientcentered, family-focused, culturally congruent nursing care to seriously ill persons and their families across the illness continuum. Implications for nursing education and research are also discussed.

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Caregiving for Older Latinos at End of Life

Cited by 21 publications

References 46 publications

Trends in Receipt of Intensive Procedures at the End of Life Among Patients Treated With Maintenance Dialysis

Trends in Receipt of Intensive Procedures at the End of Life Among Patients Treated With Maintenance Dialysis

Worry Among Mexican American Caregivers of Community-Dwelling Elders

Family Descriptions of the Influence of Cultural Factors on Transitions in Serious Illness

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