scholarly journals Perception of Reasons of Decision Making for Home Hospice, Benefits and Difficulties in Home Hospice Care by Family Caregivers

2019 ◽  
Vol 09 (10) ◽  
pp. 1013-1021
Author(s):  
Michiyo Ando ◽  
Hiroko Kukihara ◽  
Mayumi Yamamoto ◽  
Yasuyoshi Ninosaka ◽  
Naoyuki Saito
Keyword(s):  
Decision Making ◽  
Family Caregivers ◽  
Hospice Care ◽  
Home Hospice Care

scholarly journals Social support needs: Discordance between home hospice nurses and former family caregivers

2014 ◽  
Vol 13 (3) ◽  
pp. 465-472 ◽  
Author(s):  
Maija Reblin ◽  
Kristin G. Cloyes ◽  
Joan Carpenter ◽  
Patricia H. Berry ◽  
Margaret F. Clayton ◽  
...  
Keyword(s):  
Social Support ◽  
Family Caregivers ◽  
Hospice Care ◽  
Support Needs ◽  
Group Discussions ◽  
Hospice Nurses ◽  
Support Provision ◽  
Caregiver Needs ◽  
Home Hospice Care ◽  
Perception Of Support

AbstractObjective:The two goals of our study were to (1) identify which of five types of social support (Informational, Esteem, Emotional, Tangible, Belonging) are most cited by hospice nurses and family caregivers and (2) determine the match in perception of support needs.Method:As part of a larger multiphase project, focus groups were conducted with former family caregivers and hospice nurses to discuss their experiences of home hospice care and to gather their opinions on the important issues involved in that care. Transcripts of focus group discussions were coded for support type (Informational, Esteem, Emotional, Tangible, Belonging) based on definitions from the literature. Nurse and caregiver data were compared to assess for potential match.Results:Analysis of coded data suggested that nurses see different types of support to be needed in equal measure across their caseloads, while caregivers expressed priorities for some types of support. Illustrative examples of each type of support are provided and discussed.Significance of Results:Because matching support provided with the type of support desired has been linked to improved physical and psychological outcomes, it is important to focus on this match in healthcare populations particularly vulnerable to psychological stress, including family caregivers of home hospice patients. This research has implications for interventions to match support provision to caregiver needs, or for education for home hospice providers to ensure that they are not only sensitive to the possibility of a broad range of needs but also to the necessity to tailor care to those needs.

scholarly journals The Burden of Having to Wonder: Minority Stress Experiences of LGBTQ+ Hospice Family Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 357-357
Author(s):  
Kristin Cloyes ◽  
Miranda Jones ◽  
Marilisa Vega ◽  
Megan Hebdon ◽  
Casidee Thompson ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Minority Stress ◽  
Hospice Care ◽  
Background Level ◽  
Support Needs ◽  
Presentation Of Self ◽  
Home Setting ◽  
Stress Theory ◽  
Home Hospice Care

Abstract Home hospice care relies heavily on informal caregivers, often patients’ family and close others. Hospice family caregivers report stress, burden, and unmet support needs associated with poor health and bereavement outcomes. These outcomes are sensitive to the quality of interactions with professional hospice providers, especially for historically marginalized groups, yet little research examines experiences of LGBTQ+ hospice family caregivers. Informed by minority stress theory, we conducted in-depth interviews with LGBTQ+ home hospice family caregivers across the U.S. (N=20). Participants reported demographics and described their caregiving experiences including interactions with hospice providers. Interviews were audio-recorded, transcribed, and content-analyzed. Participants were mostly white (n=15, 75%), non-Hispanic (n=19, 95%), cisgender (n=19, 95%), gender binary (n=19, 95%), lesbian (n=10, 50%), women (n=12, 60%); average age was 52.3 (range 25-67, SD=13.84). Along with known end-of-life caregiving stressors, participants experienced minority stress that complicated caregiver-provider communication. Distal stressors included lack of LGBTQ+ competent resources, inadequate legal protections, providers’ assumptions about relationships, and difficult dynamics with unaccepting relatives. Proximal stressors included perceived risks of disclosure, expectation of poor treatment, feeling the need to modify presentation of self or home, and wondering whether negative provider interactions were due to being LGBTQ+. This generated a background level of uncertainty, caution, and concern that was particularly distressing in the home setting. Minority stress affects LGBTQ+ people across the lifespan and generates added burdens and support needs for hospice family caregivers. Providers who understand these effects are better positioned to deliver safe, effective care to all families at end of life.

scholarly journals Improving Communications With Patients and Families in Geriatric Care. The How, When, and What

2021 ◽  
Vol 8 ◽  
pp. 237437352110340
Author(s):  
Shirley Chien-Chieh Huang ◽  
Alden Morgan ◽  
Vanessa Peck ◽  
Lara Khoury
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Tertiary Care ◽  
Care Providers ◽  
Telephone Interviews ◽  
Written Information ◽  
Geriatric Unit ◽  
Patient Health

There has been little published literature examining the unique communication challenges older adults pose for health care providers. Using an explanatory mixed-methods design, this study explored patients’ and their family/caregivers’ experiences communicating with health care providers on a Canadian tertiary care, inpatient Geriatric unit between March and September 2018. In part 1, the modified patient–health care provider communication scale was used and responses scored using a 5-point scale. In part 2, one-on-one telephone interviews were conducted and responses transcribed, coded, and thematically analyzed. Thirteen patients and 7 family/caregivers completed part 1. Both groups scored items pertaining to adequacy of information sharing and involvement in decision-making in the lowest 25th percentile. Two patients and 4 family/caregivers participated in telephone interviews in part 2. Interview transcript analysis resulted in key themes that fit into the “How, When, and What” framework outlining the aspects of communication most important to the participants. Patients and family/caregivers identified strategic use of written information and predischarge family meetings as potentially valuable tools to improve communication and shared decision-making.

scholarly journals SHARED DECISION MAKING IN DEMENTIA CARE PLANNING: INVOLVING FAMILY CAREGIVERS

2017 ◽  
Vol 1 (suppl_1) ◽  
pp. 667-667
Author(s):  
M. Vernooij-Dassen ◽  
E. Mariani ◽  
Y. Engels ◽  
R. Chattat
Keyword(s):  
Decision Making ◽  
Family Caregivers ◽  
Shared Decision Making ◽  
Dementia Care ◽  
Care Planning ◽  
Shared Decision

scholarly journals Supporting home hospice family caregivers: Insights from different perspectives

2017 ◽  
Vol 16 (2) ◽  
pp. 209-219 ◽  
Author(s):  
Lee Ellington ◽  
Kristin G. Cloyes ◽  
Jiayun Xu ◽  
Lanell Bellury ◽  
Patricia H. Berry ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Hospice Care ◽  
Critical Role ◽  
Further Education ◽  
Hospice Nurses ◽  
Caregiver Support ◽  
Team Members ◽  
Expert Teaching ◽  
Family Centered ◽  
Thought Leaders

ABSTRACTObjective:Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support.Method:Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups.Results:Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p < 0.05).Significance of Results:Our findings suggest differences in priorities for caregiver support across family caregivers, hospice nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.

Exploring stress, coping, and decision-making considerations of Alzheimer’s family caregivers

Dementia ◽  
2018 ◽  
Vol 19 (6) ◽  
pp. 1907-1926 ◽  
Author(s):  
Carla J Thompson ◽  
Nancy Bridier ◽  
Lesley Leonard ◽  
Steve Morse
Keyword(s):  
Decision Making ◽  
Family Caregivers ◽  
Coping Skills ◽  
Rank Order ◽  
Stress And Coping ◽  
Stress Coping ◽  
Informed Decision Making ◽  
Stressful Experiences ◽  
And Coping ◽  
Disease Family

More than 15 million Americans are providing care for a family member with Alzheimer’s disease. Family caregivers are faced with highly stressful experiences, using strong coping skills, and implementing critical decisions with little or no knowledge or information and with virtually no preparation or assistance. The need for research efforts to focus on caregiver stress, coping mechanisms, and informed decision-making skills spearheaded a theoretical framework to study the potential relationships between family caregivers’ types of stress, coping skills, and their decision-making efforts. Constructs of life event stress, role strain, self-concept stress, and coping stress were examined relative to 10 priority areas of decision-making identified by the national Alzheimer’s Association. A relational non-experimental research design was utilized. Caregivers completed four Likert-scale instruments with data analyzed using descriptive statistics and rank-order correlation procedures. Findings indicated varying levels of stress, strong family self-efficacy and high levels of coping skills contribute to critical decision-making.

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