scholarly journals Family Caregivers' Feelings of Preparedness for the Transition to End-Of-Life Caregiving

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 816-817
Author(s):  
Aimee Fox ◽  
Julia Sharp ◽  
Christine Fruhauf
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Family Members ◽  
Well Being ◽  
Community Services ◽  
Self Report ◽  
Factors Associated ◽  
Perceived Burden ◽  
Advance Care ◽  
Eol Care

Abstract Family caregivers are vulnerable to emotional, psychological, physical, and financial stress during their care receiver’s end-of-life (EOL), and often do not have the knowledge or skills to provide the care needed at EOL. Yet, few studies have examined how prepared caregivers feel for making the transition to EOL care. The purpose of this exploratory study was to investigate how family caregivers perceive their preparedness for the transition to providing EOL care, and factors that may be associated with feelings of preparedness. Family caregivers (N = 252) providing care to an adult family member for more than six months were recruited to complete an online, self-report survey. An exploratory factor analysis was conducted to break down the construct of caregiver preparedness. One-way ANOVAs and a multiple regression were conducted to examine factors associated with preparedness. Most caregivers feel less prepared for the transition to EOL care (M = 2.67, SD = 1.17) than for general caregiving responsibilities (M = 3.42, SD = 0.90). Factors associated with preparedness for EOL caregiving included the familial relationship between the family caregiver and care receiver, hours per week providing care, perceived burden of caregiving, and family conversations completed about advance care planning, legal and financial matters, and EOL wishes. Future studies should explore how to help family caregivers recognize the importance of seeking support from family members and community services and discussing EOL care wishes and plans with aging family members so they can provide effective care and protect their own well-being.

scholarly journals Support for family members who are caregivers to relatives with acquired brain injury

2021 ◽  
Vol 8 (1) ◽  
pp. 76-85
Author(s):  
Janet Walker ◽  
Lourens Schlebusch ◽  
Bernhard Gaede
Keyword(s):  
Brain Injury ◽  
Suicidal Ideation ◽  
Family Caregivers ◽  
Qualitative Data ◽  
Family Members ◽  
Acquired Brain Injury ◽  
Well Being ◽  
Self Report ◽  
Cross Sectional ◽  
Significance Level

Objectives. Family members caring for a patient with acquired brain injury (ABI) are coping with inordinate levels of stress partially due to their lack of understanding of the neuropsychological effects of acquired brain injury in the patient. The objective of this research is to show that as the caregivers’ stress levels increase, there is an increase in suicidal ideation. This highlights the causal relationship between unhealthy stress and reduced psychological well-being in these caregivers. In addition, qualitative research evidence regarding the caregivers’ views of their main sources of stress are presented. Methods. The participants were a random sample of 80 family caregivers of patients with acquired brain injury, out of whom 72.5% (58) are primary caregivers and 27.5% (22) are secondary caregivers. A mixed methodology was utilized. It comprised cross-sectional descriptive and phenomenological approaches. Quantitative data were obtained from two standardized measures: The Stress Symptom Checklist (SSCL) and item 9 of the Beck Depression Inventory. The qualitative data were derived from self-report procedures that were part of a structured questionnaire administered individually during the interviews. Results. The Kruskal-Wallis test with a significance level of p = .05 was used to compare the stress and suicidal ideation scores, which revealed that increasing levels of stress led to increased suicidality. The analysis of the qualitative data revealed five themes which were identified as the triggers of the caregivers’ profound stress. Most caregivers felt that it was predominantly the patient’s neuropsychological deficits, such as emotions and/or moods, cognitive ability, behavior and personality, executive function, and social factors that caused them profound stress. Conclusions. Support and education are needed to help family caregivers understand the neuropsychological impact of acquired brain injury on the patient. Once caregivers have an improved understanding and receive better support from healthcare providers, they should experience less stress and be better prepared to provide the appropriate support to patients with acquired brain injury.

scholarly journals Caregiver perceptions of end-of-life care in patients with high-grade glioma

2020 ◽  
Vol 8 (2) ◽  
pp. 171-178
Author(s):  
John T Fortunato ◽  
Meredith Van Harn ◽  
Sameah A Haider ◽  
Joel Phillips ◽  
Tobias Walbert
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Care Planning ◽  
High Grade ◽  
Life Care ◽  
Advance Care ◽  
The Individual ◽  
Eol Care

Abstract Background Patients dying from high-grade gliomas (HGG) suffer from high symptom burden in the end-of-life (EoL) phase. Family caregivers are most informed about the patient’s symptoms and disease course. The aim of this study is to assess caregiver perception on quality of EoL care of HGG patients. Methods Caregivers prospectively participated in the Toolkit After-Death Bereaved Family Member Interview, part of the Toolkit of Instruments to Measure End-of-Life Care (TIME survey). This validated survey assesses EoL care in areas such as physical comfort and emotional support, advance care planning, focus on the individual, attention to family, and coordination of care. The quality of EoL care was measured by domain scores (0 = care was always optimal, 1 = care was always suboptimal) or with a 0-10 scale. Results Of the 55 enrolled family caregivers, 44 completed the interview and rated the overall care high (8.90 ± 1.36/10), perceived that patients’ wishes were respected (9.46 ± 0.95) and that they died in dignity (9.65 ± 0.98). Caregivers perceived high satisfaction with information and decision-making (0.18), advance care planning (0.19), focus on the individual (0.16), and care coordination (0.11). Attention to family (0.25) needed improvement. Only 41% of caregivers were confident that they knew what to do at the time of death and 46% felt that the healthcare team did not provide them with someone to turn to in distress. Conclusions Caregivers reported high overall satisfaction with EoL HGG care, though attention to family and communication needed improvement. Focus should therefore be on improved caregiver communication to improve EoL care, caregiver burnout, and bereavement in HGG populations.

scholarly journals Knowledge of end-of-life wishes by physicians and family caregivers in cancer patients

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Jose A Calvache ◽  
Socorro Moreno ◽  
Gillian Prue ◽  
Joanne Reid ◽  
Sam H Ahmedzai ◽  
...  
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Teaching Hospitals ◽  
Medical Team ◽  
Online Questionnaire ◽  
Advance Care ◽  
Absolute Agreement ◽  
Advance Care Directive ◽  
Eol Care

Abstract Objectives To describe communication regarding cancer patient’s end-of-life (EoL) wishes by physicians and family caregivers. Methods An online questionnaire and telephone-based surveys were performed with physicians and family caregivers respectively in three teaching hospitals in Colombia which had been involved in the EoL care of cancer patients. Results For 138 deceased patients we obtained responses from physicians and family caregivers. In 32 % physicians reported they spoke to the caregiver and in 17 % with the patient regarding EoL decisions. In most cases lacking a conversation, physicians indicated the treatment option was “clearly the best for the patient” or that it was “not necessary to discuss treatment with the patient”. Twenty-six percent of the caregivers indicated that someone from the medical team spoke with the patient about treatment, and in 67% who had a conversation, caregivers felt that the provided information was unclear or incomplete. Physicians and family caregivers were aware if the patient had any advance care directive in 6% and 26% of cases, respectively, with low absolute agreement (34%). Conclusions There is a lack of open conversation regarding EoL in patients with advanced cancer with their physicians and family caregivers in Colombia. Communication strategies are urgently needed.

scholarly journals QOLP-14. CAREGIVER PERCEPTIONS OF END OF LIFE CARE IN PATIENTS WITH HIGH GRADE GLIOMA

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi200-vi200
Author(s):  
John Fortunato ◽  
Lonni Schultz ◽  
Joel Phillips ◽  
Tobias Walbert
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
High Grade ◽  
Life Care ◽  
Coordination Of Care ◽  
Advance Care ◽  
The Individual ◽  
Eol Care

Abstract INTRODUCTION Patients dying from high-grade gliomas (HGG) often suffer from a high symptom burden in the end-of-life (EoL) phase. Since patients with HGG typically do not follow up with providers in the EoL phase, information about quality of life and symptom management is sparse. Family caregivers are most informed about the patient’s symptoms and disease course. The aim of this study is to assess the quality of EoL care of HGG patients from the caregiver perspective. METHODS Caregivers participated in the Toolkit After-Death Bereaved Family Member Interview (TIME survey). This validated survey assesses EoL care by calculating “domain scores” (DS) in five different areas: 1) physical comfort and emotional support, 2) advance care planning, 3) focus on the individual, 4) attention to family, and 5) coordination of care. Caregivers also rated aspects of care using a 10 point Likert scale. RESULTS In a prospective study, 40 of 55 enrolled family caregivers completed the interview a median of 26 days after death. 68% of caregivers were female. DS indicate the quality of care. (0 = no opportunity to improve care, 1 = care was always sub-optimal). Caregivers perceived high satisfaction with information and decision-making (0.18), advance care planning (0.19), focus on the individual (0.16) and coordination of care (0.11). Attention to family (0.25) was not as well rated. Caregivers rated the overall care 8.90 ±1.36/10 on a 0–10 scale. CONCLUSIONS Caregivers reported a high overall satisfaction with EoL care provided, though attention to family could be improved. While previous research suggests the importance of good physician communication in allowing patients to die with dignity, more focus should be on the caregiver in the EoL phase to improve end of life care, caregiver burnout and bereavement.

Nursing Home Resident, Family, and Staff Perspectives on Hospital Transfers for End-of-Life Care

2021 ◽  
pp. 003022282199770
Author(s):  
Janet Sopcheck ◽  
Ruth M. Tappen
Keyword(s):  
Emergency Department ◽  
Nursing Home ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Terminally Ill ◽  
South Florida ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Residents who are terminally ill often experience transfers to the emergency department resulting in hospitalizations, which may be potentially avoidable with treatment in the nursing home. This qualitative study explored the perspectives of 15 residents, 10 family members, and 20 nursing home staff regarding end-of-life care and the circumstances prompting resident transfers. Data analysis of participant interviews conducted January to May 2019 in a South Florida nursing home identified four themes related to transfer to the hospital: time left to live, when aggressive treatments would be unavailing, not knowing what the nursing home can do, and transfer decisions are situation-dependent. Study findings underscore the importance of increasing resident and family awareness of treatments available in the nursing home and person-centered advance care planning discussions. Further research should explore the reasons for residents’ and family members’ choice of aggressive therapies and their goals for care at the end of life.

scholarly journals The Experience of Do-Not-Resuscitate Orders and End-of-Life Care Discussions among Physicians

2020 ◽  
Vol 17 (18) ◽  
pp. 6869
Author(s):  
Sheng-Yu Fan ◽  
Jyh-Gang Hsieh
Keyword(s):  
End Of Life ◽  
Hospice Care ◽  
Family Members ◽  
Multiple Roles ◽  
Best Interests ◽  
Do Not Resuscitate ◽  
Time Urgency ◽  
Care Surgery ◽  
Eol Care ◽  
Analyze Data

Physicians have a responsibility to discuss do-not-resuscitate (DNR) decisions and end-of-life (EOL) care with patients and family members. The aim of this study was to explore the DNR and EOL care discussion experience among physicians in Taiwan. A qualitative study was conducted with 16 physicians recruited from the departments of hospice care, surgery, internal medicine, emergency, and the intensive care unit. The interview guidelines included their DNR experience and process and EOL care discussions, as well as their concerns, difficulties, or worries in discussions. Thematic analysis was used to analyze data. Four themes were identified. First, family members had multiple roles in the decision process. Second, the characteristics of the units, including time urgency and relationships with patients and family members, influenced physicians’ work. Third, the process included preparation, exploration, information delivery, barrier solution, and execution. Fourth, physicians shared reflections on their ability and the conflicts between law, medical professionals, and the best interests of patients. Physicians must consider not only patients’ but also family members’ opinions and surmount several barriers in decision-making. They also experienced negative and positive impacts from these discussions.

scholarly journals Which moral barriers and facilitators do physicians encounter in advance care planning conversations about the end of life of persons with dementia? A meta-review of systematic reviews and primary studies

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e038528
Author(s):  
Angela JJM Keijzer-van Laarhoven ◽  
Dorothea P Touwen ◽  
Bram Tilburgs ◽  
Madelon van Tilborg-den Boeft ◽  
Claudia Pees ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Systematic Reviews ◽  
Moral Dilemmas ◽  
Barriers And Facilitators ◽  
Care Planning ◽  
People With Dementia ◽  
Meta Review ◽  
Advance Care

Importance and objectiveConducting advance care planning (ACP) conversations with people with dementia and their relatives contributes to providing care according to their preferences. In this review, we identify moral considerations which may hinder or facilitate physicians in conducting ACP in dementia.DesignFor this meta-review of systematic reviews and primary studies, we searched the PubMed, Web of Science and PsycINFO databases between 2005 and 30 August 2019. We included empirical studies concerning physicians’ moral barriers and facilitators of conversations about end-of-life preferences in dementia care. The protocol was registered at Prospero (CRD42019123308).Setting and participantsPhysicians and nurse practitioners providing medical care to people with dementia in long-term and primary care settings. We also include observations from patients or family caregivers witnessing physicians’ moral considerations.Main outcomesPhysicians’ moral considerations involving ethical dilemmas for ACP. We define moral considerations as the weighing by the professional caregiver of values and norms aimed at providing good care that promotes the fundamental interests of the people involved and which possibly ensues dilemmas.ResultsOf 1347 studies, we assessed 22 systematic reviews and 51 primary studies as full texts. We included 11 systematic reviews and 13 primary studies. Themes included: (1) beneficence and non-maleficence; (2) respecting dignity; (3) responsibility and ownership; (4) relationship and (5) courage. Moral dilemmas related to the physician as a professional and as a person. For most themes, there were considerations that either facilitated or hindered ACP, depending on physician’s interpretation or the context.ConclusionsPhysicians feel a responsibility to provide high-quality end-of-life care to patients with dementia. However, the moral dilemmas this may involve, can lead to avoidant behaviour concerning ACP. If these dilemmas are not recognised, discussed and taken into account, implementation of ACP as a process between physicians, persons with dementia and their family caregivers may fail.

Helping cancer-family caregivers with end-of-life home symptom management: Initial evaluation of an automated symptom monitoring and coaching system.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 85-85 ◽  
Author(s):  
Kathi Mooney ◽  
Patricia Berry ◽  
Bob Wong ◽  
Gary Donaldson
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Monitoring System ◽  
Symptom Severity ◽  
Preliminary Evidence ◽  
Symptom Monitoring ◽  
Cancer Family ◽  
Symptom Profile ◽  
Eol Care

85 Background: Family caregivers face the task of providing end of life care (EOL) in the home setting and need effective caregiving support. Although not previously tested in EOL care, automated symptom monitoring has shown promise for cancer patients on active treatment. This study tests an automated monitoring and coaching system for family caregivers during home hospice. Methods: Family Caregivers (FC) of hospice cancer patients (PT) (N=243 dyads) were monitored daily using an automated telephone symptom monitoring system, and randomly assigned to receive the symptom care intervention (SC) (N=119) or usual care (UC) (N=124). All FCs called the monitoring system daily, reporting by proxy, past 24 hour presence, severity and FC distress on 11 common PT symptoms (0–10 scale). In addition, FCs reported their own fatigue, sleep, mood and anxiety severity (0-10 scale). The SC intervention FCs received automated tailored symptom care coaching based on reported patterns; in addition symptoms moderate or greater generated alerts to their hospice nurse. Results: Most FCs and PTs were White (95; 94%), 66% of FCs and 48% of PTs were female with the Mean age for FCs 60 and 73 for PTs. Most frequent PT symptoms were fatigue (70%), pain (64%), poor appetite (54%), anxiety (39%), and change in thinking (38%). PT symptom severity levels were highly related to FC distress. Preliminary analyses indicates that FC vitality (FC combined symptoms) improved more in the SC group (p=.003, mixed effects model). Furthermore PT symptom severity, categorized as Mild (<=3), Moderate (4-6), or Severe (>=7), provided strong preliminary evidence of SC intervention benefit in each of the first four weeks in hospice care and overall (p=.003). Rapid onset of the SC benefit was suggested by Kaplan-Meier analysis of time to first all-zero symptom profile (p=.06 log-rank). The benefit of the SC intervention continued throughout the hospice stay until the last several days of life when there was no difference with UC. Conclusions: This is the first reported evaluation of automated symptom monitoring in home EOL care and provides strong preliminary evidence of benefit for cancer family caregivers and patients. Clinical trial information: NCT02112461.

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