scholarly journals Engaging Specialist Palliative Care in the Management of Amyotrophic Lateral Sclerosis: A Patient-, Family-, and Provider-Based Approach

2020 ◽  
pp. 082585971989582
Author(s):  
Karla T. Washington ◽  
Klaudia Kukulka ◽  
Raghav Govindarjan ◽  
David R. Mehr
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Amyotrophic Lateral Sclerosis ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Care Providers ◽  
Specialist Palliative Care ◽  
Early Integration ◽  
Key Stakeholders ◽  
Lateral Sclerosis

Purpose: To describe key stakeholders’ perspectives on specialist palliative care and its integration into the management of amyotrophic lateral sclerosis (ALS). Methods: The study conducted was a qualitative, noninterventional, descriptive study. Data were collected via individual interviews of 42 stakeholders (n = 14 patients, n = 16 family caregivers, and n = 12 health-care providers). Transcribed interviews were analyzed using inductive thematic analysis techniques. Results: Stakeholders’ general impressions of specialist palliative care were highly variable. Many expressed limited or inaccurate understandings of palliative care’s definition and purpose. Perceptions of palliative care as hospice were common. Stakeholders generally supported the integration of specialist palliative care into ALS management, and many recognized the value of early integration of palliative services in both the community and the clinical setting. Conclusion: Key stakeholders readily identified a meaningful role for specialist palliative care in ALS management. Integration of specialist palliative care into existing systems of support would be facilitated by a more comprehensive understanding of the service among patients, family caregivers, and health-care providers.

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.

scholarly journals Concerns of Patients With Cancer on Accessing Cannabis Products in a State With Restrictive Medical Marijuana Laws: A Survey Study

2019 ◽  
Vol 15 (10) ◽  
pp. 531-538 ◽  
Author(s):  
Vinita Singh ◽  
Ali J. Zarrabi ◽  
Kimberly A. Curseen ◽  
Roman Sniecinski ◽  
Justine W. Welsh ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Health Care Providers ◽  
Medical Marijuana ◽  
Survey Study ◽  
Care Practice ◽  
Care Providers ◽  
Patients With Cancer ◽  
Medical Marijuana Laws ◽  
Source Of Information

PURPOSE: Several states, particularly in the Southeast, have restrictive medical marijuana laws that permit qualified patients to use specific cannabis products. The majority of these states, however, do not provide avenues for accessing cannabis products such as in-state dispensaries. METHODS: We conducted a survey of patients registered for medical marijuana (low tetrahydrocannabinol [THC] oil cards) in an ambulatory palliative care practice in Georgia (one of the states with restrictive medical marijuana laws). RESULTS: We had a total of 101 responses. Among our sample of patients who use cannabis as part of a state-approved low THC oil program, 56% were male and 64% were older than age 50 years. Advanced cancer was the most common reason (76%) for granting the patients access to a low THC oil card. Although patients reported cannabis products as being extremely helpful for reducing pain, they expressed considerable concerns about the legality issues (64%) and ability to obtain THC (68%). Several respondents were using unapproved formulations of cannabis products. For 48% of the patients, their physician was the source of information regarding marijuana-related products. Furthermore, they believed that their health care providers and family members were supportive of their use of cannabis (62% and 79%, respectively). CONCLUSION: Patients on Georgia’s medical marijuana program are most concerned about the legality of the product and their ability to obtain marijuana-related products. Therefore, we recommend that states with medical marijuana laws should provide safe and reliable access to cannabis products for qualifying patients.

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.

scholarly journals Is early integration of palliative home care in oncology treatment feasible and acceptable for advanced cancer patients and their health care providers? A phase 2 mixed-methods study.

2020 ◽  
Author(s):  
Naomi Dhollander ◽  
Tinne Smets ◽  
Aline De Vleminck ◽  
Lore Lapeire ◽  
Koen Pardon ◽  
...  
Keyword(s):  
Home Care ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Health Care Providers ◽  
Control Group ◽  
Care Providers ◽  
Advanced Cancer Patients ◽  
Palliative Home Care ◽  
Early Integration

Abstract Background: To support the early integration of palliative home care (PHC) in cancer treatment, we developed the EPHECT intervention and pilot tested it with 30 advanced cancer patients in Belgium using a pre post design with no control group. We aim to determine the feasibility, acceptability and perceived effectiveness of the EPHECT intervention.Methods: Interviews with patients (n=16 of which 11 dyadic with family caregivers), oncologists and GPs (n=11) and a focus group with the PHC team. We further analyzed the study materials and logbooks of the PHC team (n=8). Preliminary effectiveness was assessed with questionnaires EORTC QLQ C-30, HADS and FAMCARE and were filled in at baseline and 12, 18 and 24 weeks.Results: In the interviews after the intervention period, patients reported feelings of safety and control and an optimized quality of life. The PHC team could focus on more than symptom management because they were introduced earlier in the trajectory of the patient. Telephone-based contact appeared to be insufficient to support interprofessional collaboration. Furthermore, some family caregivers reported that the nurse of the PHC team was focused little on them.Conclusion: Nurses of PHC teams are able to deliver early palliative care to advanced cancer patients. However, more attention needs to be given to family caregivers as caregiver and client. Furthermore, the home visits by the PHC team have to be further evaluated and adapted. Lastly, professionals have to find a more efficient way to discuss future care.

The epidemiology of death and symptoms: planning for population-based palliative care

2015 ◽  
Author(s):  
Megan B. Sands ◽  
Dianne L. O’Connell ◽  
Michael Piza ◽  
Jane M. Ingham
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Health Care Providers ◽  
Neurological Disorders ◽  
Population Based ◽  
Modern Medicine ◽  
Care Providers ◽  
Incurable Illness ◽  
Relief Of Suffering ◽  
Nuanced Understanding

Despite the advances of modern medicine, many illnesses continue to evade cure. Chronic, progressive, incurable illness is a major cause of disability, distress, suffering, and, ultimately, death. This is true for many causes of cancer, progressive neurological disorders, AIDS, and other disorders of vital organs. Progressive chronic diseases of this ilk are most common in late adulthood and old age, but they occur in all ages. When cure is not possible, as often it is not, the relief of suffering is the cardinal goal of medicine. The clinical imperative to relive suffering requires a nuanced understanding of the factors that contribute to suffering and the interaction between the distress of the patient, family members, and health-care providers. This chapter reviews those concepts and offers an approach to the evaluation of suffering for patients requiring palliative care.

Provisional Educational Needs of Health Care Providers in Palliative Care in Three Nursing Homes in Ontario

1997 ◽  
Vol 13 (3) ◽  
pp. 13-17 ◽  
Author(s):  
Chris Patterson ◽  
William Molloy ◽  
Rosalie Jubelius ◽  
G.H. Guyatt ◽  
M. Bédard
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Nursing Homes ◽  
Health Care Providers ◽  
Educational Needs ◽  
Physical Symptoms ◽  
Spiritual Needs ◽  
Care Providers ◽  
Pharmacological Management ◽  
Traditional Lectures

Health care providers in three nursing homes in Ontario were surveyed to determine educational needs, barriers to meeting these needs, and the preferred format for education. Of the 415 health care providers asked to participate, 225 completed the questionnaire. Need was expressed for the majority of the 35 educational topics identified, including the role of the palliative care team, management of physical symptoms, pharmacological and non-pharmacological management of pain, stress management, spiritual needs, culture and death, and counseling. Group discussions and seminars were favored over traditional lectures. The primary factors influencing attendance at a palliative care workshop were loss of pay and time and location of the workshop.

scholarly journals Perinatal depression in Nigeria: perspectives of women, family caregivers and health care providers

2017 ◽  
Vol 11 (1) ◽  
Author(s):  
Ademola Adeponle ◽  
Danielle Groleau ◽  
Lola Kola ◽  
Laurence J. Kirmayer ◽  
Oye Gureje
Keyword(s):  
Health Care ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Perinatal Depression ◽  
Care Providers
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