scholarly journals Palliative care needs and preferences of female patients and their caregivers in Ethiopia: A rapid program evaluation in Addis Ababa and Sidama zone

PLoS ONE ◽  
2021 ◽  
Vol 16 (4) ◽  
pp. e0248738
Author(s):  
Mirgissa Kaba ◽  
Marlieke de Fouw ◽  
Kalkidan Solomon Deribe ◽  
Ephrem Abathun ◽  
Alexander Arnold Willem Peters ◽  
...  
Keyword(s):  
Palliative Care ◽  
Service Provision ◽  
Addis Ababa ◽  
Primary Caregivers ◽  
Care Needs ◽  
Female Patients ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services ◽  
Palliative Care Needs

Introduction In Ethiopia there is an extensive unmet need for palliative care, while the burden of non-communicable diseases and cancer is increasing. This study aimed to explore palliative care needs and preferences of patients, their caregivers, and the perspective of stakeholders on service provision in palliative programs for women, mostly affected by cervical cancer and breast cancer. Methods A rapid program evaluation using a qualitative study approach was conducted in three home-based palliative care programs in Addis Ababa and Yirgalem town, Ethiopia. Female patients enrolled in the programs, and their primary caregivers were interviewed on palliative care needs, preferences and service provision. We explored the views of purposely selected stakeholders on the organization of palliative care and its challenges. Audio-taped data was transcribed verbatim and translated into English and an inductive thematic analysis was applied. Descriptive analyses were used to label physical signs and symptoms using palliative outcome scale score. Results A total of 77 interviews (34 patients, 12 primary caregivers, 15 voluntary caregivers, 16 stakeholders) were conducted. The main physical complaints were moderate to severe pain (70.6%), followed by anorexia (50.0%), insomnia, nausea and vomiting (41.2%). Social interaction and daily activities were hampered by the patients’ condition. Both patients and caregivers reported that programs focus most on treatment of symptoms, with limited psychosocial, emotional, spiritual and economic support. Lack of organizational structures and policy directions limit the collaboration between stakeholders and the availability of holistic home-based palliative care services. Conclusions Although female patients and caregivers appreciated the palliative care and support provided, the existing services did not cover all needs. Pain management and all other needed supports were lacking. Multi-sectorial collaboration with active involvement of community-based structures is needed to improve quality of care and access to holistic palliative care services.

scholarly journals Identifying Palliative Care Needs in Assisted Living

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 788-788
Author(s):  
Daniel David ◽  
Abraham Brody ◽  
Tina Sadarangani ◽  
Bei Wu ◽  
Tara Cortez
Keyword(s):  
Palliative Care ◽  
Assisted Living ◽  
Unmet Needs ◽  
Care Needs ◽  
Code Status ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care ◽  
Palliative Care Needs

Abstract Many residents of Assisted Living (AL) confront serious illness and therefore might benefit from greater access to Palliative Care Services to improve quality of life. We surveyed resident records and AL nursing staff to identify patients in need of Palliative Care. Preliminary findings showed that nurses predicted 23% would not be alive and 49% would no longer live in AL. A majority of residents were over the age of 90, yet 30% did not have a reported code status. These findings suggest that a substantial portion of AL residents may have unmet needs with respect to palliative care. Future interventions are needed to support advance care planning conversations and make palliative care more accessible to this population.

HSR19-080: Situational Analysis and Needs Assessment Regarding the Availability and Extent of Pediatric Palliative Care Services in the Philippines

2019 ◽  
Vol 17 (3.5) ◽  
pp. HSR19-080
Author(s):  
Loyda Amor N. Cajucom ◽  
Rita C. Ramos ◽  
Raymund Kernell B. Mañago ◽  
Raya Kathreen T. Fuentes ◽  
Primo G. Garcia ◽  
...  
Keyword(s):  
Palliative Care ◽  
Pediatric Oncology ◽  
Healthcare Providers ◽  
The Philippines ◽  
Situational Analysis ◽  
Care Needs ◽  
Care Services ◽  
Palliative Care Services ◽  
The Common ◽  
Palliative Care Needs

Background: Around 200,000 pediatric clients are diagnosed with cancer each year globally. Majority (84%) of cancer cases are found in developing countries with 20% average survival rate (Ferlay et al, 2012). Two-thirds of pediatric oncology clients in the Philippines are diagnosed at advanced stages (Lecciones, 2015). Abandonment of treatment is high at 80%. Only about 10%–20% of clients attain long-term survival despite availability of multidisciplinary management. These outcomes reflect the gap in service delivery for pediatric oncology clients (Ferlay et al, 2012). Therefore, to improve accessibility to healthcare, it is necessary to determine the perceived palliative care needs of clients, their caregivers, and healthcare providers. Objective: To identify the availability of palliative care services in the country, identify barriers in service delivery, and determine the palliative care needs of pediatric oncology clients, their caregivers, and healthcare providers. Methods: The descriptive, cross-sectional study design involved a situational analysis by mapping 2 Philippine palliative centers. Focus group discussions (FGD) and interviews with healthcare professionals were conducted to determine the extent of services, geographical coverage, and perceived palliative care needs. The needs assessment tool by WHO (2004) was adopted to identify the palliative care needs of pediatric oncology clients as perceived by caregivers. Results: From a total of 181 primary caregivers, the identified main problems in caring was the economical (95.6%) aspect. Financial support (92%) was the most pressing need. Caregivers would like to learn more about general cancer care (39%) and nutrition counseling (24%). The most common palliative care needs as perceived by caregivers included accessibility to cancer facility (27%), free cancer medications (12.7%), and financial assistance (14.9%). The common barriers in rendering care were financial constraints (66%), behavioral changes (12.7%), and travel limitations (6%). The common themes found during the FGDs and interviews were: (1) inadequate human and structural health resources; (2) need to focus on psychosocial care; (3) addressing economic constraints; and (4) need to increase cancer awareness among caregivers. Conclusion: The findings of the study documented the need for the development of structured programs for pediatric palliative care in the Philippines.

53 The palliative care needs of people with motor neurone disease (MND) and their informal caregivers: a time for change

2018 ◽  
Vol 8 (3) ◽  
pp. 380.1-380
Author(s):  
Kate Flemming ◽  
Victoria Turner
Keyword(s):  
Qualitative Research ◽  
Palliative Care ◽  
Health Care Services ◽  
Informal Caregivers ◽  
Social Science Citation Index ◽  
Care Needs ◽  
Disease Trajectory ◽  
Care Services ◽  
Palliative Care Services ◽  
Palliative Care Needs

IntroductionDespite being a terminal neurodegenerative disease the role of palliative care is less recognised for MND than for conditions such as cancer. The palliative care needs of patients and carers must be understood in order to best configure policy and health care services for this population.AimTo explore the palliative care needs of adult patients and their informal carers living with MND or bereaved carers of people with MND through a systematic review of qualitative research.MethodFour electronic databases were searched (MEDLINE CINAHL PsycINFO Social Science Citation Index) using terms for MND ALS palliative care and a qualitative research filter. Included papers were data extracted and assessed for quality. The review was conducted using thematic synthesis.Results410 papers were identified and 39 included representing the experiences of 456 people with MND and 345 informal caregivers.Two sets of analytical themes were identified. The first represents the disease trajectory and specific chronological points within it. The second details three sets of influencing factors (internal external and connecting factors) that impact on people’s experiences of events along the disease trajectory. Analysing the intersections of these themes highlighted which palliative care needs are most required at each stage.ConclusionDespite being a life-limiting condition people with MND and their carers have limited awareness of or involvement with palliative care services. There are clear points in the disease trajectory where palliative care input could enhance patient and carer experience of the disease particularly at times of significant physical change.

scholarly journals Developing Palliative Care in Low-Resource Countries in Asia

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 164s-164s
Author(s):  
C. Goh
Keyword(s):  
Palliative Care ◽  
Low Income ◽  
Oral Morphine ◽  
World Health ◽  
Asia Pacific ◽  
Care Needs ◽  
Care Services ◽  
Tertiary Teaching ◽  
Palliative Care Services ◽  
Palliative Care Needs

Background and context: According to the World Health Organization (WHO) global atlas which maps palliative care needs worldwide, just over 50% of the palliative care needs reside in Asia. Development of palliative care services in Asia is patchy, with a few high income countries, such as Singapore and Japan, with palliative care services integrated into the health system. In the vast majority of countries, particularly low-income and middle-income countries (LMICs), such services are lacking or only available in a few centers. Aim: To develop palliative care services in countries with no services. Strategy/Tactics: The Asia Pacific Hospice Palliative Care Network (APHN) is a nongovernmental organization which supports the development of palliative care in the Asia Pacific region. Since 2012 , it has developed a comprehensive program to build capacity for palliative care in several countries in the region, including Myanmar, Sri Lanka and Bangladesh. Program/Policy process: Coconceptualized and funded by the Lien Foundation, the APHN sends interdisciplinary teams of volunteer faculty to these countries to run a training of trainers program over a period of three years. Major tertiary institutions were chosen as partners, with the understanding that palliative care services would be set up once a team had been trained. An interdisciplinary team of doctors, nurses, social workers and pharmacists from each institution went through the training program together. Individuals with potential to become champions for palliative care in these countries were given further training through a clinical fellowship program at established institutions in the region. During the training participants would be expected to start palliative care services in their institutions, which will become training centers for palliative care in the future. Concomitantly, a program of advocacy for medications essential for palliative care, such as oral morphine, was also undertaken. Outcomes: Six modules of the training course were completed in each of the three countries. A corps of 20 to 30 master trainers completed the training. In each of those countries, one or more palliative care services were started in major tertiary teaching hospitals. Oral morphine availability was greatly enhanced. The master trainers organized training within their hospitals, and also for the public. Other outcomes include the recognition of palliative care as a specialty, the introduction of palliative care into undergraduate medical and nursing curricula, and development of postgraduate courses in palliative care. What was learned: It was important to target institutions which were willing establish palliative care services. An interdisciplinary group of faculty was able to teach and inspire the trainees to take up the discipline. A drug availability program was essential to provide the tools to work with.

scholarly journals Comparison of characteristics and management of emergency department presentations between patients with met and unmet palliative care needs

PLoS ONE ◽  
2021 ◽  
Vol 16 (9) ◽  
pp. e0257501
Author(s):  
Scott W. Kirkland ◽  
Miriam Garrido Clua ◽  
Maureen Kruhlak ◽  
Cristina Villa-Roel ◽  
Stephanie Couperthwaite ◽  
...  
Keyword(s):  
Emergency Department ◽  
Palliative Care ◽  
Continuous Variables ◽  
Care Needs ◽  
Multivariable Logistic Regression Model ◽  
Care Services ◽  
Chi Squared ◽  
Palliative Care Services ◽  
Ed Visits ◽  
Palliative Care Needs

Introduction This study examined emergency department (ED) presentations of patients with end of life (EOL) conditions and patients having met and unmet palliative care needs were compared. Methods Presentations for EOL conditions were prospectively identified and screened for palliative care needs. Descriptive data were reported as proportions, means or medians. Bi-variable analysis for dichotomous and continuous variables were performed by chi-squared and T-tests (p≤0.01), respectively. A multivariable logistic regression model identified factors associated with having unmet palliative needs and reported adjusted odds ratios (aOR) with 95% confidence intervals (CI). Results Overall, 663 presentations for EOL conditions were identified; 518 (78%) involved patients with unmet palliative care needs. Presentations by patients with unmet palliative needs were more likely to involve consultations (80% vs. 67%, p = 0.001) and result in hospitalization (69% vs. 51%, p<0.001) compared to patients whose palliative needs were met. Patients with unmet palliative care needs were more likely to have previous ED visits (73% unmet vs. 48% met; p<0.001). While medication, procedures, investigations and imaging ordering were high across all patients with EOL conditions, there were no significant differences between the groups. Consultations with palliative specialists in the ED (6% unmet vs. 1% met) and following discharge (29% unmet vs. 18% met) were similarly uncommon. Patients having two or more EOL conditions (aOR = 2.41; 95% CI: 1.16, 5.00), requiring hospitalization (aOR = 1.93; 95% CI: 1.30, 2.87), and dying during the ED visit (aOR = 2.15; 95% CI: 1.02, 4.53) were strongly associated with having unmet palliative care needs. Conclusions Most ED presentations for EOL conditions were made by patients with unmet palliative care needs, who were significantly more likely to require consultation, hospitalization, and to die. Referrals to palliative care services during and after the ED visit were infrequent, indicating important opportunities to promote these services.

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 Harnessing New and Existing Virtual Platforms to Meet the Demand for Increased Inpatient Palliative Care Services During the COVID-19 Pandemic: A 5 Key Themes Literature Review of the Characteristics and Barriers of These Evolving Technologies

2021 ◽  
pp. 104990912110366
Author(s):  
Holly R. Cherniwchan
Keyword(s):  
Palliative Care ◽  
Control Measures ◽  
Inpatient Setting ◽  
Overall Acceptability ◽  
Care Services ◽  
Infection Control Measures ◽  
Home Based ◽  
Palliative Care Services ◽  
Virtual Services ◽  
Case Basis

The COVID-19 pandemic has increased the demand for end-of-life services and bereavement support, and in many areas of the world, in-person palliative care is struggling to meet these needs. Local infection control measures result in limited visitation rights in hospital and patients are often dying alone. For many years, virtual platforms have been used as a validated alternative to in-person consults for outpatient and home-based palliative care; however, the feasibility and acceptability of a virtual inpatient equivalent is less studied. Virtual inpatient palliative care may offer a unique opportunity for patients to have meaningful interactions with their care team and family while isolated in hospital or in hospice. This narrative review examines strategies employed during the COVID-19 pandemic to implement virtual palliative care services in the inpatient setting. Five key themes were identified in the literature between January 2020-March 2021 in the LitCovid NCBI database: 1) overall acceptability of virtual inpatient palliative care during the pandemic, 2) important logistical considerations when developing a virtual inpatient palliative care platform, 3) commonly used technologies for delivering virtual services, 4) strategies for harnessing human resources to meet increased patient volume, and 5) challenges of virtual inpatient palliative care implementation. Upon review, telepalliative care can meet the increased demand for safe and accessible inpatient palliative care during a pandemic; however, in some circumstances in-person services should still be considered. The decision for which patients receive what format of care—in-person or virtual—should be decided on a case-by-case basis.

scholarly journals Advantages and challenges in using telehealth for home-based palliative care: A systematic mixed studies review protocol (Preprint)

2020 ◽  
Author(s):  
Simen A Steindal ◽  
Andréa Aparecida Goncalves Nes ◽  
Tove E. Godskesen ◽  
Susanne Lind ◽  
Alfhild Dhle ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Delivery ◽  
Patient Centered ◽  
Care Services ◽  
Home Based ◽  
Mixed Studies Review ◽  
Palliative Care Services ◽  
Meta Analyses ◽  
Systematic Mixed Studies Review ◽  
At Home

BACKGROUND Due to the increasing number of people in need of palliative care services and the current health care professional workforce strain, providing equitable, quality palliative care has become a challenge. Telehealth could be an innovative approach to palliative care delivery, enabling patients to spend more time or even remain at home, if they wish, throughout the illness trajectory. However, no previous systematic mixed studies reviews have synthesized evidence on patients’ experiences of the advantages and challenges of telehealth for home-based palliative care. OBJECTIVE The aim of this systematic mixed studies review is to critically appraise and synthesize findings from studies that investigated patients’ use of telehealth in home-based palliative care with a focus on the advantages and challenges experienced by the patients. METHODS This article describes the protocol for a systematic mixed studies review with a convergent design. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. A systematic search was performed in eight databases for studies published from January 2010 to June 2020. The search will be updated in 2021. Pairs of authors will independently assess eligibility, extract data and assess methodological quality. The data will then be analyzed using thematic synthesis. RESULTS We described the rationale and design of a systematic mixed studies review. The database searches were performed on June 25, 2020. Assessment of eligibility and further steps have not yet been performed. Results are anticipated by August 2021. CONCLUSIONS Following the ethos of patient-centered palliative care, this systematic mixed studies review could contribute recommendations for practice and policy enabling the development of telehealth applications and services that align with patients’ preferences and needs when using telehealth applications and services at home.

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