scholarly journals What do family caregivers know about palliative care? Results from a national survey

2019 ◽  
Vol 17 (6) ◽  
pp. 643-649 ◽  
Author(s):  
J. Nicholas Dionne-Odom ◽  
Katherine A. Ornstein ◽  
Erin E. Kent
Keyword(s):  
Palliative Care ◽  
Chronic Illness ◽  
Family Caregivers ◽  
Hospice Care ◽  
Care Services ◽  
Palliative Care Services ◽  
Level Of Knowledge ◽  
National Trends ◽  
Behavioral Disability ◽  
Family Centered

AbstractObjectiveDespite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S. family caregivers and describe demographic variation in awareness and perceptions of palliative care.MethodUsing the 2018 National Cancer Institute Health Information National Trends Survey, we identified unpaid family caregivers caring or making healthcare decisions for someone with a medical, behavioral, disability, or other condition. Respondents were asked about their awareness of the term “palliative care” and, if aware, how much they agreed with statements representing common (mis)perceptions about palliative care (e.g., “Palliative care is the same as hospice”).ResultMore than one-half of caregivers (55%) had “never heard” of palliative care; 19.2% knew what palliative care was and “could explain it to someone else.” In adjusted models, racial minorities (vs. whites) and those without a college degree were less likely to have heard of palliative care. Among those aware of palliative care, ~40% “strongly” or “somewhat” agreed that “Palliative care is the same as hospice”; another 10.5% “didn't know.” Similarly, 40% reported that “When I think of palliative care, I automatically think of death.”Significance of resultsOne-half of family caregivers of adults with serious chronic illness have never heard of palliative care. Even among those who had heard of palliative care, the majority do not distinguish it from hospice care and death. Given the role family caregivers may play in decisions to access palliative care, public messaging efforts are needed to clarify palliative care services in a way that is patient- and family-centered.

Understanding the needs of family caregivers of older adults dying with dementia

2013 ◽  
Vol 12 (3) ◽  
pp. 223-231 ◽  
Author(s):  
Genevieve N. Thompson ◽  
Kerstin Roger
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Terminal Illness ◽  
English Language ◽  
Psychological Needs ◽  
Support Needs ◽  
Care Services ◽  
Unique Nature ◽  
Palliative Care Services ◽  
Services And Supports

AbstractObjectives:A challenge in understanding the needs of dementia family caregivers (DFC) within the purview of dementia as a terminal illness rests on the fact that literature in this area is dispersed across disciplines and not specifically grounded within the realm of palliative care. The objective of this paper is to describe the domains of DFC needs and their impact on the delivery of palliative care services.Methods:A literature search pertaining to dementia family caregivers and palliative/end-of-life care was conducted using the databases Medline, CINHAL, Ageline, PsychInfo, and Scopus for articles published in the English language between 1997 and 2011.Results:Supporting family caregivers of individuals with dementia throughout the disease trajectory requires consideration of caregivers : (1) physical, emotional, and psychological needs; (2) information and decisional support needs; and (3) instrumental support needs. The unique nature and prolonged duration of these needs directly influences the palliative care services and supports required by these family caregivers.Significance of results:Understanding the scope of DFC needs help further our understanding of how these needs may impact the delivery of palliative care services, and assists in developing a model of care for those dying from dementia and for their family caregivers.

scholarly journals Patients' experiences of attending an adapted cardiac rehabilitation programme for heart failure in a day hospice

2020 ◽  
Vol 26 (6) ◽  
pp. 292-300
Author(s):  
Helen Walthall ◽  
Christie Roberts ◽  
Dan Butcher ◽  
Sue Schutz
Keyword(s):  
Heart Failure ◽  
Palliative Care ◽  
Hospice Care ◽  
Positive Impact ◽  
Post Intervention ◽  
Cardiac Rehabilitation Programme ◽  
Care Services ◽  
Final Sample ◽  
Palliative Care Services ◽  
Poor Outcomes

Background: Heart failure is highly prevalent with poor outcomes, yet only a small proportion of patients receive specialist palliative care services. Aim: To explore if a programme focusing on support and symptom management of people with heart failure in a hospice environment would be acceptable and of benefit to patients. Methods: A pre/post intervention study design using mixed methods was used to evaluate the programme. The programme was delivered in 2-hour time slots over a period of 8 weeks. Participants completed three questionnaires pre- and post- and were interviewed within 1 week of completion. The study was conducted between June 2014 and January 2015. Findings: A response rate of 51.7% (n=15) was narrowed to a final sample size of 12 patients. The questionnaire results showed a positive impact on participants' wellbeing and views regarding the use of a hospice, but a desire for greater focus on emotional support. Four key themes emerged from inductive qualitative analysis: demystifying perceptions about hospice care; positivity about wellbeing; learning together; and consideration of end-of-life preparation. Conclusion: This adapted programme provides a useful model for the increased integration of palliative care into provision for those living with advancing heart failure.

Impact of palliative care referral on hospice enrollment: A single center analysis.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 17-17
Author(s):  
Shreya Sinha ◽  
Alina Basnet ◽  
Wajihuddin Syed ◽  
Pallavi Koparthy ◽  
Rashad Khan ◽  
...  
Keyword(s):  
Pancreatic Cancer ◽  
Palliative Care ◽  
Hospice Care ◽  
Univariate Analysis ◽  
Insurance Status ◽  
Disease Course ◽  
Advanced Directives ◽  
Early Palliative Care ◽  
Care Services ◽  
Palliative Care Services

17 Background: Despite ASCO’s recommendation to introduce palliative care services for all patients diagnosed with localized or metastatic pancreatic cancer, most patients’ care does not involve this multimodality approach. Transitioning patients to hospice at an appropriate time is essential in oncologic practice. The purpose of this study is to identify which variables affect acceptance of hospice services by patients. Methods: A retrospective chart review of patients with pancreatic cancer treated at Upstate University Hospital from 2011-2015 was performed. We studied variables including age, sex, race, stage, insurance status, advance directives, performance status and laboratory values. We analyzed patients based on acceptance or rejection of hospice care in their disease course and conducted a univariate analysis on different factors to determine predisposing variables. p-values were calculated using Chi-Square test and t-test. Results: We reviewed 325 patients charts and found statistically significant relation to acceptance of hospice and insurance status, and involvement of palliative care in their care. Patients with Medicare were more likely to decline hospice care whereas patients with Medicaid or no insurance were more likely to accept it. 36.23% of patients saw palliative care services at any point in their treatment course and these patients were more likely to accept hospice care than patients who did not (p = < 0.0001). Patients who were seen by palliative care earlier in their disease course were more likely to accept hospice care, although this did not reach statistical significance (p = 0.0731). Patients with stage IV disease were more likely to accept hospice care (p = 0.0095). Other variables like presence of advanced directives, tumor markers, age, and sex did not have a significant impact. Conclusions: Palliative care involvement is beneficial in patients with pancreatic cancer as they face a rough disease course with multiple treatment and disease related morbidities. Patients with early palliative care involvement during their illness are more likely to decide on hospice care at the end stages of their malignancies. This supports early palliative care introduction as an adjunct to oncologic care.

Hospital-based palliative care

2015 ◽  
pp. 20-57
Author(s):  
Patricia Maani-Fogelman ◽  
Marie A. Bakitas
Keyword(s):  
Palliative Care ◽  
Chronic Illness ◽  
Health System ◽  
The Elderly ◽  
Healthcare Systems ◽  
Life Care ◽  
Care Continuum ◽  
Care Services ◽  
System P ◽  
Palliative Care Services

The structure, clinical processes, and measurement of outcomes of specialized palliative and hospice services, organized as hospital-based palliative care (HBPC) programs, have grown in sophistication in response to documented, poor end-of-life care; growth of the elderly and advanced, chronic illness populations; and documented successes of pilot and maturing clinical palliative care programs. Standards, guidelines, and other resources are now available to assist health systems to develop, sustain, or expand palliative care services for persons of all ages and stages of illness, along the entire care continuum. All hospitals and healthcare systems should develop palliative care services that are consistent with these standards and the mission, size, and scope of the health system.

scholarly journals Experiencing place identity and place belongingness at a children’s hospice: Parents’ perspectives

2020 ◽  
pp. 136749352091513
Author(s):  
Helena Dunbar ◽  
Bernie Carter
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Hospice Care ◽  
Place Identity ◽  
Constructivist Grounded Theory ◽  
Care Services ◽  
Key Players ◽  
Palliative Care Services ◽  
Families With Children ◽  
Parents Experiences

Children’s hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of palliative and hospice care may contribute to the lack of uptake of hospice services by families. This article reports two elements of place bonding: parents’ experiences of place identity and place belongingness at a children’s hospice in a region in England. Underpinned by a constructivist grounded theory methodology, focus groups were undertaken with 24 parents of children with LLCs accessing a children’s hospice. Despite initial reservations associated with the identity of the hospice, parents described how and why their view changed and therefore consequently how they were able to experience the hospice differently. This article demonstrates how parents’ views of the identity of the hospice change and how the hospice becomes a place where parents experience a sense of belongingness.

Family caregivers voice their needs: A photovoice study

2014 ◽  
Vol 13 (3) ◽  
pp. 701-712 ◽  
Author(s):  
Jennifer Angelo ◽  
Richard Egan
Keyword(s):  
Palliative Care ◽  
Family Member ◽  
Family Caregivers ◽  
Health Professionals ◽  
Medication Management ◽  
Physical Demands ◽  
Care Services ◽  
Palliative Care Services ◽  
Care Health ◽  
Photovoice Methodology

AbstractObjective:Caregivers often are unprepared for their role yet serve as the frontline in the provision of palliative care services. The aim of our study was to explore family caregivers' experiences from their perspective as they cared for dying relatives.Method:Using the Photovoice methodology, ten unpaid family caregivers took photographs depicting issues they experienced as informal caregivers of an ill family member who had less than a year to live. Each participant met with the first author individually four to six times and explained their role as caregiver through photographs and stories.Results:The results were clustered into seven themes: physical demands, emotional/spiritual stress, preparing for the future, securing help, medication management, navigating the agencies, and relationships.Significance of results:Caregivers perform a variety of tasks, often under stress. This study highlights the main areas where problems lie and the areas that palliative care health professionals need to be aware of so they can assist and educate caregivers, with the goal of finding solutions to the burdens of care. The themes were found to be intertwined, showing the complexity of the caregiving role.

scholarly journals The meaning and experience of bereavement support: A qualitative interview study of bereaved family caregivers

2017 ◽  
Vol 16 (4) ◽  
pp. 396-405 ◽  
Author(s):  
Emma Kirby ◽  
Katherine Kenny ◽  
Alex Broom ◽  
John MacArtney ◽  
Phillip Good
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Bereavement Support ◽  
Care Services ◽  
Qualitative Interview Study ◽  
Framework Approach ◽  
Metropolitan Hospital ◽  
Palliative Care Services ◽  
Socially Isolated ◽  
Bereaved Family

ABSTRACTObjective:Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some—though not all—caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced. This study examined the experiences of bereaved family caregivers and their impressions of and interactions with bereavement support.Method:This paper reports on one aspect of a broader study designed to explore a range of experiences of patients and caregivers to and through palliative care. Focusing on experiences of bereavement, it draws on qualitative semistructured interviews with 15 family caregivers of palliative care patients within a specialist palliative care unit of an Australian metropolitan hospital. The interviews for this stage of the study were initiated 3–9 months after an initial interview with a family caregiver, during which time the palliative patient had died, and they covered family caregivers' experiences of bereavement and bereavement support. Interviews were digitally audiotaped and transcribed in full. A thematic analysis was conducted utilizing the framework approach wherein interview transcripts were reviewed, key themes identified, and explanations developed.Results:The research identified four prevalent themes: (1) sociocultural constructions of bereavement support as for the incapable or socially isolated; (2) perceptions of bereavement support services as narrow in scope; (3) the “personal” character of bereavement and subsequent incompatibility with formalized support, and (4) issues around the timing and style of approaches to being offered support.Significance of results:Systematic pre-bereavement planning and careful communication about the services offered by palliative care bereavement support centers may improve receipt of support among bereaved family caregivers in need.

Does Palliative Care Utilization Facilitate Conversion to Hospice Care? A Qualitative Study of the “Soft No”

2020 ◽  
Vol 37 (9) ◽  
pp. 701-706 ◽  
Author(s):  
Karen Lutfey Spencer ◽  
Emily Hammad Mrig ◽  
Ariana Kobra Talaie
Keyword(s):  
Palliative Care ◽  
Hospice Care ◽  
Comparative Method ◽  
Value Added ◽  
Medical Decision ◽  
Care Utilization ◽  
Care Services ◽  
Health Related ◽  
Palliative Care Services ◽  
Depth Interviews

Background: Facilitating patient conversion to hospice at end of life is a prominent clinical concern. Enrollment in outpatient palliative care services is often assumed to encourage seamless transition to hospice care, but this has not been demonstrated. Moreover, decisions to convert from palliative care to hospice are generally treated as dichotomous, thus hampering our ability to understand decision processes. Objective: To examine medical decision-making among patients who are prospectively evaluating whether to convert from palliative care to hospice. Design: Qualitative case study, using in-depth interviews and constant comparative method. Setting/Patients: Terminally ill patients currently enrolled in outpatient palliative care services (N = 26) and their caregivers (N = 16), selected purposely for maximum variation in condition and personal background. Measurements: Themes identified in qualitative in-depth interviews. Results: Patients rarely refused hospice outright but more often postponed using a “soft no,” in which they neither accepted nor overtly refused hospice. Justifications patients and caregivers offered for why hospice was not needed (yet) appeared in these themes: (1) not seeing the value added of hospice, (2) assuming the timing is premature, and (3) relying on extensive health-related support networks that justify or endorse continuation of active care. Conclusions: Despite assumptions to the contrary, benefits associated with utilization of outpatient palliative care services have the potential to incentivize the delay of hospice in some cases. Clinical interactions with outpatient palliative care patients should consider the influence of these broad social support systems when discussing hospice options.

Sign in / Sign up

Export Citation Format

Share Document