Mortality risk following end-of-life caregiving: A population-based analysis of hospice users and their families
Experiencing the death of a family member and providing end-of-life caregiving can be stressful on families – this is well-documented in both the caregiving and bereavement literatures. Adopting a linked-lived theoretical perspective, exposure to the death and dying of one family member could be con...
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| Vydané v: | Social science & medicine (1982) Ročník 348; s. 116781 |
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| Hlavní autori: | , , , , , , , |
| Médium: | Journal Article |
| Jazyk: | English |
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England
Elsevier Ltd
01.05.2024
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| ISSN: | 0277-9536, 1873-5347, 1873-5347 |
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| Abstract | Experiencing the death of a family member and providing end-of-life caregiving can be stressful on families – this is well-documented in both the caregiving and bereavement literatures. Adopting a linked-lived theoretical perspective, exposure to the death and dying of one family member could be conceptualized as a significant life stressor that produces short and long-term health consequences for surviving family members. This study uses familial-linked administrative records from the Utah Population Database to assess how variations in family hospice experiences affect mortality risk for surviving spouses and children. A cohort of hospice decedents living in Utah between 1998 and 2016 linked to their spouses and adult children (n = 37,271 pairs) provides an ideal study population because 1) hospice typically involves family members in the planning and delivery of end-of-life care, and 2) hospice admission represents a conscious awareness and acknowledgment that the decedent is entering an end-of-life experience. Thus, hospice duration (measured as the time between admission and death) is a precise measure of the family's exposure to an end-of-life stressor. Linking medical records, vital statistics, and other administrative microdata to describe decedent-kin pairs, event-history models assessed how hospice duration and characteristics of the family, including familial network size and coresidence with the decedent, were associated with long-term mortality risk of surviving daughters, sons, wives (widows), and husbands (widowers). Longer hospice duration increased mortality risk for daughters and husbands, but not sons or wives. Having other family members in the state was protective, and living in the same household as the decedent prior to death was a risk factor for sons. We conclude that relationship type and sex likely modify the how of end-of-life stressors (i.e., potential caregiving demands and bereavement experiences) affect health because of normative gender roles. Furthermore, exposure to dementia deaths may be particularly stressful, especially for women.
•Exposure to end-of-life caregiving may increase mortality risk for surviving family.•Longer hospice duration and being the only nearby family member are risk factors.•Gender and relationship type (child or spouse) modify survivors' mortality risk.•Having more family members is protective against survivors' mortality risk.•Having a spouse with dementia is particularly risky for surviving widows' health. |
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| AbstractList | Experiencing the death of a family member and providing end-of-life caregiving can be stressful on families – this is well-documented in both the caregiving and bereavement literatures. Adopting a linked-lived theoretical perspective, exposure to the death and dying of one family member could be conceptualized as a significant life stressor that produces short and long-term health consequences for surviving family members. This study uses familial-linked administrative records from the Utah Population Database to assess how variations in family hospice experiences affect mortality risk for surviving spouses and children. A cohort of hospice decedents living in Utah between 1998 and 2016 linked to their spouses and adult children (n = 37,271 pairs) provides an ideal study population because 1) hospice typically involves family members in the planning and delivery of end-of-life care, and 2) hospice admission represents a conscious awareness and acknowledgment that the decedent is entering an end-of-life experience. Thus, hospice duration (measured as the time between admission and death) is a precise measure of the family's exposure to an end-of-life stressor. Linking medical records, vital statistics, and other administrative microdata to describe decedent-kin pairs, event-history models assessed how hospice duration and characteristics of the family, including familial network size and coresidence with the decedent, were associated with long-term mortality risk of surviving daughters, sons, wives (widows), and husbands (widowers). Longer hospice duration increased mortality risk for daughters and husbands, but not sons or wives. Having other family members in the state was protective, and living in the same household as the decedent prior to death was a risk factor for sons. We conclude that relationship type and sex likely modify the how of end-of-life stressors (i.e., potential caregiving demands and bereavement experiences) affect health because of normative gender roles. Furthermore, exposure to dementia deaths may be particularly stressful, especially for women.
•Exposure to end-of-life caregiving may increase mortality risk for surviving family.•Longer hospice duration and being the only nearby family member are risk factors.•Gender and relationship type (child or spouse) modify survivors' mortality risk.•Having more family members is protective against survivors' mortality risk.•Having a spouse with dementia is particularly risky for surviving widows' health. Experiencing the death of a family member and providing end-of-life caregiving can be stressful on families - this is well-documented in both the caregiving and bereavement literatures. Adopting a linked-lived theoretical perspective, exposure to the death and dying of one family member could be conceptualized as a significant life stressor that produces short and long-term health consequences for surviving family members. This study uses familial-linked administrative records from the Utah Population Database to assess how variations in family hospice experiences affect mortality risk for surviving spouses and children. A cohort of hospice decedents living in Utah between 1998 and 2016 linked to their spouses and adult children (n = 37,271 pairs) provides an ideal study population because 1) hospice typically involves family members in the planning and delivery of end-of-life care, and 2) hospice admission represents a conscious awareness and acknowledgment that the decedent is entering an end-of-life experience. Thus, hospice duration (measured as the time between admission and death) is a precise measure of the family's exposure to an end-of-life stressor. Linking medical records, vital statistics, and other administrative microdata to describe decedent-kin pairs, event-history models assessed how hospice duration and characteristics of the family, including familial network size and coresidence with the decedent, were associated with long-term mortality risk of surviving daughters, sons, wives (widows), and husbands (widowers). Longer hospice duration increased mortality risk for daughters and husbands, but not sons or wives. Having other family members in the state was protective, and living in the same household as the decedent prior to death was a risk factor for sons. We conclude that relationship type and sex likely modify the how of end-of-life stressors (i.e., potential caregiving demands and bereavement experiences) affect health because of normative gender roles. Furthermore, exposure to dementia deaths may be particularly stressful, especially for women. Experiencing the death of a family member and providing end-of-life caregiving can be stressful on families – this is well-documented in both the caregiving and bereavement literatures. Adopting a linked-lived theoretical perspective, exposure to the death and dying of one family member could be conceptualized as a significant life stressor that produces short and long-term health consequences for surviving family members. This study uses familial-linked administrative records from the Utah Population Database to assess how variations in family hospice experiences affect mortality risk for surviving spouses and children. A cohort of hospice decedents living in Utah between 1998 and 2016 linked to their spouses and adult children (n = 37,271 pairs) provides an ideal study population because 1) hospice typically involves family members in the planning and delivery of end-of-life care, and 2) hospice admission represents a conscious awareness and acknowledgment that the decedent is entering an end-of-life experience. Thus, hospice duration (measured as the time between admission and death) is a precise measure of the family’s exposure to an end-of-life stressor. Linking medical records, vital statistics, and other administrative microdata to describe decedent-kin pairs, event-history models assessed how hospice duration and characteristics of the family, including familial network size and coresidence with the decedent, were associated with long-term mortality risk of surviving daughters, sons, wives (widows), and husbands (widowers). Longer hospice duration increased mortality risk for daughters and husbands, but not sons or wives. Having other family members in the state was protective, and living in the same household as the decedent prior to death was a risk factor for sons. We conclude that relationship type and sex likely modify the how of end-of-life stressors (i.e., potential caregiving demands and bereavement experiences) affect health because of normative gender roles. Furthermore, exposure to dementia deaths may be particularly stressful, especially for women. Experiencing the death of a family member and providing end-of-life caregiving can be stressful on families - this is well-documented in both the caregiving and bereavement literatures. Adopting a linked-lived theoretical perspective, exposure to the death and dying of one family member could be conceptualized as a significant life stressor that produces short and long-term health consequences for surviving family members. This study uses familial-linked administrative records from the Utah Population Database to assess how variations in family hospice experiences affect mortality risk for surviving spouses and children. A cohort of hospice decedents living in Utah between 1998 and 2016 linked to their spouses and adult children (n = 37,271 pairs) provides an ideal study population because 1) hospice typically involves family members in the planning and delivery of end-of-life care, and 2) hospice admission represents a conscious awareness and acknowledgment that the decedent is entering an end-of-life experience. Thus, hospice duration (measured as the time between admission and death) is a precise measure of the family's exposure to an end-of-life stressor. Linking medical records, vital statistics, and other administrative microdata to describe decedent-kin pairs, event-history models assessed how hospice duration and characteristics of the family, including familial network size and coresidence with the decedent, were associated with long-term mortality risk of surviving daughters, sons, wives (widows), and husbands (widowers). Longer hospice duration increased mortality risk for daughters and husbands, but not sons or wives. Having other family members in the state was protective, and living in the same household as the decedent prior to death was a risk factor for sons. We conclude that relationship type and sex likely modify the how of end-of-life stressors (i.e., potential caregiving demands and bereavement experiences) affect health because of normative gender roles. Furthermore, exposure to dementia deaths may be particularly stressful, especially for women.Experiencing the death of a family member and providing end-of-life caregiving can be stressful on families - this is well-documented in both the caregiving and bereavement literatures. Adopting a linked-lived theoretical perspective, exposure to the death and dying of one family member could be conceptualized as a significant life stressor that produces short and long-term health consequences for surviving family members. This study uses familial-linked administrative records from the Utah Population Database to assess how variations in family hospice experiences affect mortality risk for surviving spouses and children. A cohort of hospice decedents living in Utah between 1998 and 2016 linked to their spouses and adult children (n = 37,271 pairs) provides an ideal study population because 1) hospice typically involves family members in the planning and delivery of end-of-life care, and 2) hospice admission represents a conscious awareness and acknowledgment that the decedent is entering an end-of-life experience. Thus, hospice duration (measured as the time between admission and death) is a precise measure of the family's exposure to an end-of-life stressor. Linking medical records, vital statistics, and other administrative microdata to describe decedent-kin pairs, event-history models assessed how hospice duration and characteristics of the family, including familial network size and coresidence with the decedent, were associated with long-term mortality risk of surviving daughters, sons, wives (widows), and husbands (widowers). Longer hospice duration increased mortality risk for daughters and husbands, but not sons or wives. Having other family members in the state was protective, and living in the same household as the decedent prior to death was a risk factor for sons. We conclude that relationship type and sex likely modify the how of end-of-life stressors (i.e., potential caregiving demands and bereavement experiences) affect health because of normative gender roles. Furthermore, exposure to dementia deaths may be particularly stressful, especially for women. |
| ArticleNumber | 116781 |
| Author | Utz, Rebecca L. Hollingshaus, Mike Smith, Ken R. Tay, Djin Meeks, Huong Iacob, Eli Stephens, Caroline Ornstein, Katherine |
| AuthorAffiliation | g Associate Professor, College of Nursing, University of Utah, United States a Senior Demographer, Kem C. Gardner Policy Institute, David Eccles School of Business, University of Utah, United States b Distinguished Professor Emeritus, Department of Family and Consumer Studies, University of Utah, United States h Professor, Sociology Department, University of Utah, United States f Assistant Professor, College of Nursing, University of Utah, United States c Assistant Professor, Pediatrics, University of Utah, United States d Professor, School of Nursing, Johns Hopkins University, United States e Assistant Research Professor, College of Nursing, University of Utah, United States |
| AuthorAffiliation_xml | – name: f Assistant Professor, College of Nursing, University of Utah, United States – name: g Associate Professor, College of Nursing, University of Utah, United States – name: c Assistant Professor, Pediatrics, University of Utah, United States – name: d Professor, School of Nursing, Johns Hopkins University, United States – name: h Professor, Sociology Department, University of Utah, United States – name: a Senior Demographer, Kem C. Gardner Policy Institute, David Eccles School of Business, University of Utah, United States – name: b Distinguished Professor Emeritus, Department of Family and Consumer Studies, University of Utah, United States – name: e Assistant Research Professor, College of Nursing, University of Utah, United States |
| Author_xml | – sequence: 1 givenname: Mike orcidid: 0000-0002-1682-9150 surname: Hollingshaus fullname: Hollingshaus, Mike email: mike.hollingshaus@utah.edu organization: Senior Demographer, Kem C. Gardner Policy Institute, David Eccles School of Business, University of Utah, United States – sequence: 2 givenname: Ken R. surname: Smith fullname: Smith, Ken R. email: ken.smith@fcs.utah.edu organization: Distinguished Professor Emeritus, Department of Family and Consumer Studies, University of Utah, United States – sequence: 3 givenname: Huong orcidid: 0000-0001-8712-4679 surname: Meeks fullname: Meeks, Huong email: huong.meeks@hsc.utah.edu organization: Assistant Professor, Pediatrics, University of Utah, United States – sequence: 4 givenname: Katherine orcidid: 0000-0001-6270-4423 surname: Ornstein fullname: Ornstein, Katherine email: ornstein@jhu.edu organization: Professor, School of Nursing, Johns Hopkins University, United States – sequence: 5 givenname: Eli orcidid: 0000-0003-1617-0314 surname: Iacob fullname: Iacob, Eli email: eli.iacob@nurs.utah.edu organization: Assistant Research Professor, College of Nursing, University of Utah, United States – sequence: 6 givenname: Djin orcidid: 0000-0001-5247-0010 surname: Tay fullname: Tay, Djin email: djin.tay@nurs.utah.edu organization: Assistant Professor, College of Nursing, University of Utah, United States – sequence: 7 givenname: Caroline surname: Stephens fullname: Stephens, Caroline email: Caroline.Stephens@nurs.utah.edu organization: Associate Professor, College of Nursing, University of Utah, United States – sequence: 8 givenname: Rebecca L. surname: Utz fullname: Utz, Rebecca L. email: Rebecca.Utz@csbs.utah.edu organization: Professor, Sociology Department, University of Utah, United States |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/38547806$$D View this record in MEDLINE/PubMed |
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| Snippet | Experiencing the death of a family member and providing end-of-life caregiving can be stressful on families – this is well-documented in both the caregiving... Experiencing the death of a family member and providing end-of-life caregiving can be stressful on families - this is well-documented in both the caregiving... |
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| SubjectTerms | Adult Adult Children - statistics & numerical data Aged Aged, 80 and over Bereavement Caregivers - statistics & numerical data Caregiving Death Dementia Family Family Health - statistics & numerical data Female Gender Role Grief Health Records, Personal Hospice Hospice Care - statistics & numerical data Humans Male Middle Aged Mortality Proportional Hazards Models Risk Factors Sex Factors Social support Spouses - statistics & numerical data Survivorship Terminal Care Time Factors Utah - epidemiology Vital Statistics Widowhood - statistics & numerical data |
| Title | Mortality risk following end-of-life caregiving: A population-based analysis of hospice users and their families |
| URI | https://dx.doi.org/10.1016/j.socscimed.2024.116781 https://www.ncbi.nlm.nih.gov/pubmed/38547806 https://www.proquest.com/docview/3022572169 https://pubmed.ncbi.nlm.nih.gov/PMC12357765 |
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