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.

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.

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.

Clinicians’ perceptions of opioid error–contributing factors in inpatient palliative care services: A qualitative study

2019 ◽  
Vol 33 (4) ◽  
pp. 430-444 ◽  
Author(s):  
Nicole Heneka ◽  
Priyanka Bhattarai ◽  
Tim Shaw ◽  
Debra Rowett ◽  
Samuel Lapkin ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Focus Groups ◽  
System Level ◽  
Quality And Safety ◽  
Specialist Palliative Care ◽  
Structured Interviews ◽  
Contributing Factors ◽  
Care Services ◽  
Palliative Care Services

Background: Opioid errors are a leading cause of patient harm and adversely impact palliative care inpatients’ pain and symptom management. Yet, the factors contributing to opioid errors in palliative care are poorly understood. Identifying and better understanding the individual and system factors contributing to these errors is required to inform targeted strategies. Objectives: To explore palliative care clinicians’ perceptions of the factors contributing to opioid errors in Australian inpatient palliative care services. Design: A qualitative study using focus groups or semi-structured interviews. Settings: Three specialist palliative care inpatient services in New South Wales, Australia. Participants: Inpatient palliative care clinicians who are involved with, and/or have oversight of, the services’ opioid delivery or quality and safety processes. Methods: Deductive thematic content analysis of the qualitative data. The Yorkshire Contributory Factors Framework was applied to identify error-contributing factors. Findings: A total of 58 clinicians participated in eight focus groups and 20 semi-structured interviews. Nine key error contributory factor domains were identified, including: active failures; task characteristics of opioid preparation; clinician inexperience; sub-optimal skill mix; gaps in support from central functions; the drug preparation environment; and sub-optimal clinical communication. Conclusion: This study identified multiple system-level factors contributing to opioid errors in inpatient palliative care services. Any quality and safety initiatives targeting safe opioid delivery in specialist palliative care services needs to consider the full range of contributing factors, from individual to systems/latent factors, which promote error-causing conditions.

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.

scholarly journals Challenges of paediatric palliative care in Romania: a focus groups study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Nadia Pacurari ◽  
Eva De Clercq ◽  
Monica Dragomir ◽  
Anca Colita ◽  
Tenzin Wangmo ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Healthcare Professionals ◽  
Paediatric Oncology ◽  
Pediatric Palliative Care ◽  
Charitable Organizations ◽  
Number Of Children ◽  
Care Services ◽  
Paediatric Palliative Care ◽  
Palliative Care Services

Abstract Background The availability of palliative care facilities for children vary considerably among the European member states. In Romania, a country where health expenditure is among the lowest in Europe, palliative care has been mainly provided by charitable organizations. Despite the high number of children needing palliative care, there is scant literature and research available on paediatric palliative care in Romania. The study explores the viewpoints of various paediatric oncology providers with regard to paediatric palliative care provision in Romania. Methods Four mixed focus groups were conducted at four university-affiliated paediatric oncology centres located in three distinct Romanian regions (Bucuresti-llfov, Nord-Est and Nord-Vest). The focus groups were analyzed using thematic coding. Results For many healthcare professionals, emotional burden inherent to the profession; unhealthy work-life balance and understaffing were among the biggest barriers to the successful integration of pediatric palliative care. The lack of staff was attributed to a shortage of financial resources, and to the persisting cultural stigma surrounding palliative care and oncology. Also political turmoil was identified as an important obstacle to palliative care implementation. Conclusion Significant barriers persist limiting the broader implementation of pediatric palliative care in Romania. In order to render palliative care in pediatric oncology more sustainable, more attention should be paid to the mental health care of healthcare professionals working in this field, to the development of mobile palliative care services and to the emigration of skilled medical staff.

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.

scholarly journals Prohibit, protect, or adapt? The changing role of volunteers in palliative and hospice care services during the COVID-19 pandemic. A multinational survey (CovPall).

2021 ◽  
Author(s):  
Catherine Walshe ◽  
Ian Garner ◽  
Lesley Dunleavy ◽  
Nancy Preston ◽  
Andy Bradshaw ◽  
...  
Keyword(s):  
Palliative Care ◽  
Online Survey ◽  
Hospice Care ◽  
Care Quality ◽  
Free Text ◽  
Role Changes ◽  
Care Services ◽  
Key Stakeholders ◽  
Palliative Care Services ◽  
Virtual Support

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the COVID-19 pandemic are unknown. Aims: To understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in volunteer service provision, during the COVID-19 pandemic. Methods: Multi-national online survey disseminated via key stakeholders to specialist palliative care services, completed by lead clinicians. Data collected on volunteer roles, deployment, and changes in volunteer engagement. Analysis included descriptive statistics, a multivariable logistic regression, and analysis of free-text comments using a content analysis approach. Results: 458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19. These were across a number of roles (from 458): direct patient/family facing support (58.7%), indirect support (e.g. driving) (52.0%), back office (48.5%) and fundraising (45.6%). 11% had volunteers with COVID-19. Of those responding to a question on change in volunteer deployment (328 of 458) most (256/328, 78%) indicated less or much less use of volunteers. Less use of volunteers was associated with being an in-patient hospice, (OR=0.15, 95%CI = 0.07-0.3 p<.001). This reduction in volunteers was felt to protect potentially vulnerable volunteers and with policy changes preventing volunteers from supporting services. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support. Discussion and conclusion: Volunteers were mostly prevented from supporting many forms of palliative care, particularly in in-patient hospices, which may have quality and safety implications given their previously central roles. Volunteer re-deployment plans are needed that take a more considered approach, using volunteers more flexibly to enhance care while ensuring safe working practices. Consideration needs to be given to widening the volunteer base away from those who may be considered to be most vulnerable to COVID-19

scholarly journals Prohibit, Protect, Or Adapt? The Changing Role of Volunteers in Palliative and Hospice Care Services during the COVID-19 Pandemic. A Multinational Survey (Covpall)

2021 ◽  
Author(s):  
Catherine Walshe ◽  
Ian Garner ◽  
Lesley Dunleavy ◽  
Nancy Preston ◽  
Andy Bradshaw ◽  
...  
Keyword(s):  
Palliative Care ◽  
Online Survey ◽  
Hospice Care ◽  
Care Quality ◽  
Free Text ◽  
Role Changes ◽  
Care Services ◽  
Key Stakeholders ◽  
Palliative Care Services ◽  
Virtual Support

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the COVID-19 pandemic are unknown. The aim of this study is to understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in volunteer service provision, during the COVID-19 pandemic. Methods: Multi-national online survey disseminated via key stakeholders to specialist palliative care services, completed by lead clinicians. Data collected on volunteer roles, deployment, and changes in volunteer engagement. Analysis included descriptive statistics, a multivariable logistic regression, and analysis of free-text comments using a content analysis approach. Results: 458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19 across a number of roles (from 458): direct patient facing support (58.7%), indirect support (52.0%), back office (48.5%) and fundraising (45.6%). 11% had volunteers with COVID-19. Of those responding to a question on change in volunteer deployment (328 of 458) most (256/328, 78%) indicated less or much less use of volunteers. Less use of volunteers was associated with being an in-patient hospice, (OR=0.15, 95% CI = 0.07-0.3 p<.001). This reduction in volunteers was felt to protect potentially vulnerable volunteers, with policy changes preventing volunteer support. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support. Conclusion: Volunteers were mostly prevented from supporting many forms of palliative care which may have quality and safety implications given their previously central roles. Volunteer re-deployment plans are needed that take a more considered approach, using volunteers more flexibly to enhance care while ensuring safe working practices. Consideration needs to be given to widening the volunteer base away from those who may be considered to be most vulnerable to COVID-19.

Marketing Palliative Care

2015 ◽  
Author(s):  
Rolfe Sean Morrison ◽  
Bridget Tracy
Keyword(s):  
Palliative Care ◽  
Social Marketing ◽  
Health Care Professionals ◽  
Hospice Care ◽  
Public Support ◽  
The United States ◽  
Historical Background ◽  
Audience Research ◽  
Care Services ◽  
Palliative Care Services

This article examines why palliative care remains inaccessible to most persons with serious illness, citing the lack of a successful social marketing platform directed to consumers as a primary reason. It argues that the growth of palliative care has been hindered by the failure of palliative care professionals to consider the basic principles of social marketing in early language and messaging. The article first provides a historical background on the development of modern hospice care and of palliative care before turning to a discussion of how palliative care has failed to generate widespread public support and engagement. It then considers how early messaging by palliative care professionals hindered referrals to palliative care by other health-care professionals and concludes by explaining how recent attempts to use principles of audience research and targeted social marketing have led to the rapid spread and uptake of palliative care services in the United States.

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