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Hospice

Strengths and Struggles for Families Involved in Hospice Care During the COVID-19 Pandemic

Background: The COVID-19 pandemic presented unique health and social challenges for hospice patients, their families, and care providers. Methods: This qualitative study explored the impact of the pandemic on this population through the experiences and perceptions of social workers in hospice care. A survey was distributed through national and local listservs to social work practitioners throughout the United States between May 15 and June 15, 2020.

Wed, 06/22/2022 - 16:54

Perceived Benefits and Burdens of Participation for Caregivers of Cancer Patients in Hospice Clinical Trials: A Pilot Study

Context: Hospice is a service for those with a life expectancy of six months or less. Family caregivers suffer from depression and anxiety as they care for their loved one until they die. Little is known about how research participants decide to consent to participate in clinical trials in the hospice setting. Objectives: This pilot study sought to answer two research questions: 1) In what way do demographic characteristics, mental health, and perceived caregiving experience impact the decision by caregivers to participate in hospice clinical trials?

Sat, 06/11/2022 - 10:29

Overcoming Challenges to Surrogate Decision Making for Young Adults at the End of Life

Surrogate decision makers (SDMs) are challenged by difficult decisions at the end of life. This becomes more complex in young adult patients when parents are frequently the SDMs. This age group (18 to 39 years old) commonly lacks advanced directives to provide guidance which results in increased moral distress during end of life decisions. Multiple factors help guide medical decision making throughout a patient's disease course and at the end of life. These include personal patient factors and SDM factors.

Fri, 06/10/2022 - 10:44

The Mutual Effects of Perceived Spiritual Needs on Quality of Life in Patients with Advanced Cancer and Family Caregivers

Background: Perceived spiritual needs may increase when patients with advanced cancer and their family caregivers are confronted with the challenges of physical and psychological distress. Given the intertwined relationships between patients and family caregivers, their interdependence should be considered to understand how perceived spiritual needs affect the quality of life of their own and of their partner.

Wed, 06/08/2022 - 21:16

Live hospice discharge: Experiences of families, and hospice staff

Objective: To examine live hospice discharge prevalence and experiences of families and hospice staff. Hospice eligibility is based on a cancer model where decline and death are predicable. Decline is less predictable for diagnoses such as dementia, frequently resulting in involuntary live hospice discharge.

Tue, 06/07/2022 - 17:12

Family perceptions of quality of end of life in LGBTQ+ individuals: a comparative study

Background: Members of the lesbian, gay, bisexual, transgender, and queer community have encountered discrimination and stigmatization related to sexual orientation and/or gender identity both within healthcare establishments and in the larger community. Despite the literature describing inequities in healthcare, very little published research exists on the experiences of lesbian, gay, bisexual, transgender, and queer patients and family members in hospice care.

Mon, 05/30/2022 - 13:50

Development of a Decision Aid for Patients and Families Considering Hospice

Background: Hospice is underutilized. Miscommunication, decisional complexity, and misunderstanding around engaging hospice may contribute. Shared decision making (SDM), aided by patient decision aids (PtDAs), can improve knowledge and decision quality. Currently, there are no freely available hospice-specific PtDA to facilitate conversions between patients and providers about hospice care. Objective: To develop a theory-based and unbiased hospice specific PtDA.

Tue, 02/08/2022 - 16:33

Comparison of Traditional Videos With Telenovelas for Hospice Family Caregivers Education

Background: While research has shown that hospice family caregivers (HFCG) seek additional information related to patient care, pain and symptom management, and self-care, it is unknown how the use of telenovela videos for education in hospice would be received by HFCG. Objective: To explore HFCG perceived benefits and challenges with the use of telenovelas as compared to traditional educational videos during online support group.

Tue, 02/01/2022 - 11:26

Associations Between Hospice Care and Scary Family Caregiver Experiences

Context: Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations. Objectives: To examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life.

Thu, 01/13/2022 - 12:31

Gaps in end-of-life care and lack of support for family carers in Poland and Central Eastern Europe

The growth of life expectancy in Central Eastern Europe and increase in the number of older people in that region are the consequences of changes in the 1990s period, connected to transition from the communism into a market economy. Central Eastern Europe is already facing consequences of fast ageing and insufficient development of state health care and social services. Those result in gaps in the provision of end-of-life care and overburden of family caregivers.

Fri, 07/23/2021 - 16:10

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