What Questions do Family Caregivers want to Discuss with Health Care Providers in Order to Prepare for the Death of a Loved One? An Ethnographic Study of Caregivers of Patients at End of Life

2008 ◽  
Vol 11 (3) ◽  
pp. 476-483 ◽  
Author(s):  
Randy Scott Hebert ◽  
Richard Schulz ◽  
Valire Copeland ◽  
Robert M. Arnold
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Ethnographic Study ◽  
Care Providers ◽  
Loved One

Clarifying the information and support needs of family caregivers of nursing home residents with advancing dementia

Dementia ◽  
2020 ◽  
pp. 147130122092761
Author(s):  
Genevieve Thompson ◽  
Thomas Hack ◽  
Kerstin Rodger ◽  
Phil St. John ◽  
Harvey Chochinov ◽  
...  
Keyword(s):  
Health Care ◽  
Nursing Home ◽  
End Of Life ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Nursing Home Residents ◽  
Emotional Impact ◽  
Support Needs ◽  
Care Providers ◽  
Structured Interviews

Background Research has identified inadequacies in the quality and quantity of dementia-related information, particularly end-of-life information provided to those living with dementia and their family caregivers. The purpose of this study was to identify what types of information family caregivers of persons living with dementia in nursing homes would deem useful in preparing them for their relative’s end-of-life and assist them to make decisions about care along the dementia trajectory. Methods The qualitative methodology of interpretive description was used to guide the study in which semi-structured interviews were conducted with nursing home staff in clinical roles (e.g., nurses, health care aides, social workers, speech language pathologists; N = 26), palliative care clinicians ( N = 7), and bereaved family caregivers of persons with dementia ( N = 17). Data were analyzed using thematic analysis. Findings Eight substantive categories essential to meeting family members’ needs for information and preparing them for the future were identified including: (i) dementia in general, (ii) dementia toward the end-of-life, (iii) care of persons dying with dementia, (iv) the role of family caregiver as decision maker, (v) sustaining connection, (vi) emotional impact of dementia on caregivers, (vii) relationships with staff, and (viii) general questions about life in a NH. Conclusion Our findings suggest that family caregivers of nursing home residents with dementia have unique information and support needs, some disease specific, others more related to life in a nursing home in general. Health care providers need to support and encourage dementia literacy for family caregivers. A key strategy is to proactively broach these topic areas, as too often family caregivers may not recognize or value their need for information.

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.

Reclaiming and Reshaping Life: Patterns of Reconstruction After the Suicide of a Loved One

2016 ◽  
Vol 27 (7) ◽  
pp. 994-1005 ◽  
Author(s):  
Dolores Angela Castelli Dransart
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Care Providers ◽  
Suicide Survivors ◽  
Loved One ◽  
Life Patterns ◽  
Survivors Of Suicide ◽  
And Coping ◽  
The Impact ◽  
Depth Interviews

The objective of this study is to identify patterns (components and processes) of reconstruction of suicide survivors. In-depth interviews were conducted with 50 survivors of suicide in Switzerland. Data were analyzed using ATLAS.ti and according to the Grounded Theory principles. Survivors of suicide face four major challenges: dealing with the impact of suicide, searching for meaning, clarifying responsibility, and finding a personal style of reaction and coping. The various ways in which survivors fare through the specific processes of the challenges result in various patterns of reconstruction: the vulnerability, transformation, commitment, and hard blow. The unique characteristics and dynamics of each of them are highlighted. Health care providers would benefit from an approach based on the dynamics of the various patterns of reconstruction in providing appropriate support to survivors of suicide.

Pandemic Visitation Restrictions at the End of Life

2021 ◽  
Vol 46 (11) ◽  
pp. 3-4
Author(s):  
Molly Antone ◽  
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Treatment Options ◽  
Care Providers ◽  
Medical Practices ◽  
Whole Person ◽  
Catholic Health Care

Dying today looks dramatically different than it did a century ago, largely due to wider treatment options and more specialized medical practices. Often missing from these advancements is the focus on factors relative to a patient’s total circumstances. Especially in light of the recent pandemic, it is incumbent upon Catholic health care providers to treat who whole person rather than simply focus on more utilitarian philosophies of care.

On the Margins of Death: A Scoping Review on Palliative Care and Schizophrenia

2018 ◽  
Vol 34 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Erin Relyea ◽  
Brooke MacDonald ◽  
Christina Cattaruzza ◽  
Denise Marshall
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Access To Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Scoping Review ◽  
End Of Life Care ◽  
Psychosocial Interventions ◽  
Life Care ◽  
Care Providers

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.

scholarly journals Understanding How to Support Family Caregivers of Seniors with Complex Needs

2017 ◽  
Vol 20 (2) ◽  
pp. 75-84 ◽  
Author(s):  
Lesley Charles ◽  
Suzette Brémault-Phillips ◽  
Jasneet Parmar ◽  
Melissa Johnson ◽  
Lori-Ann Sacrey
Keyword(s):  
Health Care ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Research Priorities ◽  
Care Providers ◽  
Community Based ◽  
Caregiver Support ◽  
Complex Needs ◽  
Participant Engagement

Purpose of the StudyThe purpose of this study was to describe the experiences and challenges of supporting family caregivers of seniors with complex needs and to outline support strategies and research priorities aimed at supporting them.Design and MethodsA CIHR-funded, two-day conference entitled “Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes” was held. An integrated knowledge translation approach guided this planning conference. Day 1 included presentations of research evidence, followed by participant engagement Qualitative data was collected regarding facilitators, barriers/gaps, and recommendations for the provisionof caregiver supports. Day 2 focused on determination of research priorities.ResultsIdentified facilitators to the provision of caregiver support included accessibility of health-care and community-based resources, availability of well-intended health-care providers, and recognition of caregivers by the system. Barriers/gaps related to challenges with communication, access to information, knowledge of what is needed, system navigation, access to financial resources, and current policies. Recommendations regarding caregiver services and research revolved around assisting caregivers to self-identify and seek support, formalizing caregiver supports, centralizing resources, making system navigation available, and preparing the next generation for caregiving.Implication A better understanding of the needs of family caregivers and ways to support them is critical to seniors’ health services redesign.

Sign in / Sign up

Export Citation Format

Share Document