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 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.

scholarly journals The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review

2020 ◽  
Vol 34 (6) ◽  
pp. 708-730 ◽  
Author(s):  
Kate Flemming ◽  
Victoria Turner ◽  
Samantha Bolsher ◽  
Bill Hulme ◽  
Elizabeth McHugh ◽  
...  
Keyword(s):  
Systematic Review ◽  
Qualitative Research ◽  
Palliative Care ◽  
Social Science Citation Index ◽  
Healthcare Services ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Care Needs ◽  
Disease Trajectory ◽  
Informal Carers

Background: Despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services. Aim: To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory. Design: A systematic review of qualitative research conducted using Thematic Synthesis – PROSPERO registration CRD42017075311. Data Sources: Four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality. Results: A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients’ and carers’ experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement. Conclusion: The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified 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 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 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.

Rural Palliative Care

2019 ◽  
pp. 670-681
Author(s):  
Richard A. Taylor ◽  
J. Nicholas Dionne-Odom ◽  
Erin R. Currie ◽  
Macy Stockdill ◽  
Marie A. Bakitas
Keyword(s):  
Palliative Care ◽  
Nurse Practitioners ◽  
Rural Areas ◽  
Health Workers ◽  
Symptom Control ◽  
Care Needs ◽  
Web Based ◽  
Care Services ◽  
Palliative Care Services ◽  
Care Training

Access to palliative care remains challenging to those living in rural areas across the globe. This disparity of care leaves many without critically important palliative care services across their illness trajectory, especially in its final stages. Creative strategies to meet the palliative care needs of rural patients such as telehealth, videoconferencing specialists’ consultation, and web-based resources exist. Using these strategies where available can address some palliative care disparities and access to care in rural areas that were previously absent. Developing clinical capacity of rural clinicians through enhanced education in primary palliative care in training programs, expanding services with the use of nurse practitioners, and using palliative care–trained community lay health workers are also strategies to improve access. Additionally, by developing rural hospital providers’ knowledge and skills to provide primary palliative care in tasks such as establishing care goals, communication, and basic symptom control may prevent many transfers to academic centers miles away. Through ongoing education and primary palliative care training and innovations in bringing specialty care to rural areas, “palliative care everywhere” will soon be a reality.

Mortality among referrals to a community-based intermediate care team

2017 ◽  
Vol 9 (3) ◽  
pp. 263-266
Author(s):  
Bharath Lakkappa ◽  
Sanjay Shah ◽  
Stephen Rogers ◽  
Leanne Helen Holman
Keyword(s):  
Palliative Care ◽  
Care Team ◽  
Intermediate Care ◽  
Care Needs ◽  
Community Based ◽  
Care Services ◽  
Palliative Care Teams ◽  
Care Models ◽  
End Stage ◽  
Palliative Care Needs

ObjectivesIntermediate care services have been introduced to help mitigate unnecessary hospital demand and premature placement in long-term residential care. Many patients are elderly and/or with complex comorbidities, but little consideration has been given to the palliative care needs of patients referred to intermediate care services. The objective of this study is to determine the proportion of patients referred to a community-based intermediate care team who died during care and up to 24 months after discharge and so to help inform the development of supportive and palliative care in this setting.MethodsA retrospective cohort study of all 4770 adult patients referred to Northamptonshire Intermediate Care Team (ICT) between 11 April 2010 and 10 April 2011.ResultsOf 4770 patients referred, 60% were 75 years or older and 32% were 85 years of age or older. 4.0% of patients died during their ICT stay and 11% within 30 days of discharge. At the end of 12 months, 25% of the patients had died, increasing to 32% before the end of the second year. About 34% of all deaths occurred during the ICT stay or within 30 days of discharge, and a further 46% by the end of the first year. Male gender and higher age were associated with greater likelihood of death.ConclusionsIt is important for ICT clinicians to consider immediate and longer-term palliative care needs among patients referred to ICTs. Care models involving ICTs and palliative care teams working together could enable more people with end-stage non-cancer illnesses to die at home.

scholarly journals Whose Business is Dying? Death, the Home and Palliative Care

2011 ◽  
Vol 17 (1) ◽  
Author(s):  
John Rosenberg
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Services ◽  
Death Scene ◽  
Care Services ◽  
Life Issues ◽  
Palliative Care Services ◽  
End Of Life Issues ◽  
Dying At Home ◽  
Communal Responsibility

The process of dying at home brings the nexus between the paternalism of conventional palliative care and a social understanding of end of life care into sharp focus. Away from institutional places of care, issues of ownership, compliance and communal responsibility are heightened. At this interface, palliative care services are confronted with the irony of relinquishing their 'ownership' of dying whilst leading communities to reclaim their principal role in the business of dying. This benign – but enduring – paternalism remains a barrier to a paradigmatic shift towards a more complete understanding of the business of dying. Whilst nascent attempts to promote community engagement in end of life issues are evident in the interface between palliative care and public health, dying remains, for the most part, the remit of health care services. In this article, I contend that the business of dying is incompletely attended. This lack of attention will be partially redressed here by considering the home as a fitting death scene.

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