scholarly journals Loss of relationship: a qualitative study of families and healthcare providers after patient death and home-based palliative care ends

2019 ◽  
Vol 8 (2) ◽  
pp. 130-139 ◽  
Author(s):  
Megan Vierhout ◽  
Jaymie Varenbut ◽  
Elizabeth Amos ◽  
Sandy Buchman ◽  
Amna Husain ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Healthcare Providers ◽  
Patient Death ◽  
Home Based

scholarly journals Patient, Caregiver, and Physician Barriers to Home-Based Palliative Care: Findings From a Terminated Study

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 167-167
Author(s):  
Susan Enguidanos ◽  
Stephanie Wladkowski
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Qualitative Study ◽  
Primary Care Physicians ◽  
Controlled Trial ◽  
Healthcare Providers ◽  
Insurance Company ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Abstract Despite two decades of palliative care services, there remains numerous barriers to patient and caregiver use of palliative care. For many years, policymakers believed lack of funding for palliative care was the primary obstacle to accessing palliative care services. In 2017, we undertook a randomized controlled trial to test the effectiveness of a home-based palliative care (HBPC) program within accountable care organizations and in partnership with an insurance company that covered the cost of HBPC. After 20 months, we had recruited just 28 patients. This symposium will: (1) describe outcomes from various approaches undertaken to engage primary care physicians and recruit patients and their caregivers into this trial; (2) present barriers to HBPC referral identified from a qualitative study of primary care physicians; (3) present findings from a qualitative study of patient- and caregiver-identified barriers to HBPC; (4) describe physician and patient barriers to research participation; and (5) discuss implications of these findings for researchers and healthcare providers. Information presented in this symposium will inform researchers and policy makers about challenges and facilitators to recruiting patients, caregivers, and physicians to participate in research studies as well as inform healthcare practitioners of potential obstacles to increasing patient access to HBPC.

scholarly journals Reasons for Refusing Home-based Palliative Care: A Qualitative Study of Patients and Caregivers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 903-904
Author(s):  
Valeria Cardenas ◽  
YuJun Zhu ◽  
Anna Rahman ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Care Service ◽  
Controlled Trial ◽  
Healthcare Providers ◽  
Palliative Care Service ◽  
Health Condition ◽  
Insurance Company ◽  
Home Based ◽  
Palliative Care Services

Abstract Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that coverage for palliative care may be insufficient to expanding patient access to home-based palliative care. Research has yet to explore palliative care barriers from the perspective of palliative care-eligible patients and their caregivers. To identify patients and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers, we conducted a qualitative study using semi-structured individual interviews. Participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed via telephone. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the program explanation; and suggestions for improving messaging around home-based palliative care. Researchers used grounded theory to identify the themes within the transcripts. Two researchers independently coded the transcripts and then met to compare coding and reconciled discrepancies until 100% consensus was reached. Identified themes related to home-based palliative care referral barriers included reluctance to have home visits, timing, lack of palliative care knowledge, misconceptions of palliative care, and patients’ self-perceived health condition (not sick enough for palliative care). Themes related to recommendations for overcoming these barriers included preferring a palliative care referral from healthcare providers or from insurance company and clearer presentation of palliative care service. Findings reinforce the need for additional palliative care education among patients with serious illness and the importance of delivering the information from a trusted source.

scholarly journals Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

2021 ◽  
pp. 104990912110126
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Structured Interviews ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

scholarly journals Barriers to home‐based palliative care in people with cancer: A qualitative study of the perspective of caregivers

Nursing Open ◽  
2020 ◽  
Vol 7 (4) ◽  
pp. 1260-1268
Author(s):  
Hadi Hassankhani ◽  
Azad Rahmani ◽  
Amy Best ◽  
Fariba Taleghani ◽  
Zohreh Sanaat ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Home Based

scholarly journals Challenges of paediatric palliative care in the intensive care unit during the COVID-19 pandemic

2021 ◽  
Vol 27 (6) ◽  
pp. 303-315
Author(s):  
Marzieh Hasanpour ◽  
Mamak Tahmasebi ◽  
Masoud Mohammadpour ◽  
Batool Pouraboli ◽  
Fahimeh Sabeti
Keyword(s):  
Intensive Care Unit ◽  
Palliative Care ◽  
Intensive Care ◽  
Healthcare Providers ◽  
Clinical Team ◽  
Management Support ◽  
Breaking Bad ◽  
Paediatric Palliative Care ◽  
Home Based ◽  
Purposeful Sampling

Background: The integration of paediatric palliative care into the Iranian health system is essential. Aims: The aim of this study was to identify the challenges of palliative care in the paediatric intensive care unit during COVID-19 through the experiences of healthcare providers. Methods: A qualitative study with content analysis approach was conducted. Fifteen physicians and nurses were selected by purposeful sampling. The semi-structured, in-depth interviews were applied in the data collection. Findings: Ten main categories were extracted from data analysis, including ‘caring in COVID-19’, ‘communication and family centre care’, ‘breaking bad news’, palliative care training’, ‘pain and symptom management’, ‘support of the child, family and clinical team’, ‘physical environment’, ‘guidelines’, ‘specialised staff’ and ‘home based palliative care’. Conclusion: Palliative care in the PICU faces several challenges, especially during COVID-19, but the clinical team are making every attempt to improve the comprehensive care of children and their families. Telehealth is important in COVID-19, and education is also a key component to improve palliative care in the PICU in Iran.

scholarly journals Australian GPs’ perceptions of barriers and enablers to best practice palliative care: a qualitative study

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Anne Herrmann ◽  
Mariko L. Carey ◽  
Alison C. Zucca ◽  
Lucy A. P. Boyd ◽  
Bernadette J. Roberts
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Best Practice ◽  
Healthcare Providers ◽  
Multidisciplinary Teams ◽  
Healthcare Team ◽  
Care Provision ◽  
Roles And Responsibilities ◽  
Barriers And Enablers

Abstract Background General Practitioners (GPs) often play an important role in caring for people at the end of life. While some international studies suggest that GPs experience a number of barriers to providing palliative care, little is known about views and experiences of GPs in Australia. This study explored Australian GPs’ perceptions of barriers and enablers to the provision of palliative care and provides new insights into how to implement best practice care at the end of life. Methods This was a qualitative study using 25 semi-structured phone interviews conducted with GPs practising in metropolitan and non-metropolitan New South Wales, Australia. Data were analysed using qualitative content analysis. Results GPs reported difficulties with palliative care provision due to i) the complex and often emotional nature of doctor-family-interaction; ii) a lack of evidence to guide care; and iii) the need to negotiate roles and responsibilities within the healthcare team. GPs listed a number of strategies to help deal with their workload and to improve communication processes between healthcare providers. These included appropriate scheduling of appointments, locally tailored mentoring and further education, and palliative care guidelines which more clearly outline the roles and responsibilities within multidisciplinary teams. GPs also noted the importance of online platforms to facilitate their communication with patients, their families and other healthcare providers, and to provide centralised access to locally tailored information on palliative care services. GPs suggested that non-government organisations could play an important role by raising awareness of the key role of GPs in palliative care provision and implementing an “official visitor” program, i.e. supporting volunteers to provide peer support or respite to people with palliative care needs and their families. Conclusions This study offers new insights into strategies to overcome well documented barriers to palliative care provision in general practice and help implement optimal care at the end of life. The results suggest that researchers and policy makers should adopt a comprehensive approach to improving the provision of palliative care which tackles the array of barriers and enablers identified in this study.

Abstract 13221: Family Caregivers’ Perceptions of Illness Severity in Heart Failure Patients with Limited Life Expectancy

Circulation ◽  
2014 ◽  
Vol 130 (suppl_2) ◽  
Author(s):  
Lisa Kitko ◽  
Judith Hupcey ◽  
Maureen Palese
Keyword(s):  
Heart Failure ◽  
Palliative Care ◽  
Quality Care ◽  
Healthcare Providers ◽  
Illness Severity ◽  
Patient Death ◽  
Disease Trajectory ◽  
Advance Care ◽  
Hospice And Palliative Care ◽  
Perceived Illness

Introduction: End-of-life (EOL) services, such as hospice and palliative care are often lacking even for the sickest heart failure (HF) patients. Use of these services have been hampered by the lack of availability, lack of referrals due to the unpredictable course in HF, and refusal of services by patients and caregivers due to a lack of understanding of the terminality of HF. The purpose of this study was to determine whether caregivers of HF patients with a predicted survival of less than 2 years, understood disease terminality prior to and after the patient’s death. Methods: As part of a longitudinal study of 100 patient-caregiver dyads, caregivers were interviewed monthly until the patient’s death and then twice post-death. Caregiver interviews immediately preceding and post-patient death were analyzed to determine caregivers’ perceptions of the terminality of heart failure. Results: There were 49 caregivers of patients who died. Patients died an average of 8 months after study enrollment. Most caregivers did not understand the severity of the patient’s disease and 51% (25/49) viewed the death as unexpected. When caregivers retrospectively reflected on the patient’s illness trajectory, they recounted downward trends in patient’s health, but were not aware of the terminality of the patient until after death occurred. Those few caregivers who perceived the illness severity prior to death came to this realization late in the disease trajectory. At the point of recognition, advanced treatments were limited or withdrawn and the short-term use of EOL services such as palliative care or hospice was instituted. Conclusions: The lack of perceived illness severity/terminality has profound implications for patients, caregivers, and healthcare providers. Patients and caregivers who do not understand the seriousness of the illness are less likely to accept EOL services, if offered. Clinicians need to understand the HF EOL trajectory and that EOL discussions and advance care planning help patients and caregivers make informed choices and receive quality care at EOL. We also need to educate all healthcare providers about having these discussions, so palliative care becomes a philosophy of care not merely a referral service immediately preceding death.

scholarly journals 1 Loss of relationship: a qualitative study of families and caregivers after home-based palliative care ends

2018 ◽  
Author(s):  
Megan Vierhout ◽  
Jaymie Varenbut ◽  
Elizabeth Amos ◽  
Sandy Buchman ◽  
Russell Goldman ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Home Based
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