Developing Community-Based Palliative Care Services for People Living with HIV in Africa

Abstract BackgroundGlobally COVID-19 has had a profound impact on the provision of healthcare, including palliative care. However, there is little evidence about the impact of COVID-19 on delivery of out-of-hours specialist palliative care services in the United Kingdom. The aim of the study is to investigate the impact of the COVID-19 pandemic on the delivery of out-of-hours community-based palliative care services.Methods A national online census survey of managers of adult hospices in the United Kingdom was undertaken. Survey were emailed to managers of adult hospices (n=150) who provided out-of-hours community palliative care services. Fifteen questions related specifically to the impact of COVID-19 and data were analysed thematically.ResultsEighty-one responses to the survey were returned (54% response rate); 59 were complete of which 47 contained COVID-19 data. Findings indicated that COVID-19 impacted on out-of-hours community-based palliative care. To meet increased patient need, hospices reconfigured services; redeployed staff; and introduced new policies and procedures to minimize virus transmission. Lack of integration between charitably and state funded palliative care providers was reported. The interconnected issues of the use and availability of Personal Protective Equipment (n=21) and infection control screening (n=12) resulted in changes in nursing practices due to fear of contagion for patients, carers and staff. Conclusions Survey findings suggest that due to increased demand for community palliative care services, hospices had to rapidly adapt and reconfigure services. Even though this response to the pandemic led to some service improvements, in the main, out-of-hours service reconfiguration resulted in challenges for hospices, including workforce issues, and availability of resources such as Personal Protective Equipment. These challenges were exacerbated by lack of integration with wider healthcare services. More research is required to fully understand the implications of such changes on the quality of care provided.

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Evaluation of community-based palliative care services: Perspectives from various stakeholders

Indian Journal of Palliative Care ◽

10.4103/ijpc.ijpc_80_17 ◽

2017 ◽

Vol 23 (4) ◽

pp. 425 ◽

Cited By ~ 1

Author(s):

Venugopal Vinayagamoorthy ◽

Elayaperumal Suguna ◽

AmolR Dongre

Keyword(s):

Palliative Care ◽

Community Based ◽

Care Services ◽

Palliative Care Services

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Economic and clinical outcomes of the nurse practitioner-led Sydney Adventist Hospital Community Palliative Care Service

Australian Health Review ◽

10.1071/ah19247 ◽

2020 ◽

Vol 44 (5) ◽

pp. 791

Author(s):

Sam G. Moreton ◽

Emily Saurman ◽

Glenn Salkeld ◽

Julie Edwards ◽

Dawn Hooper ◽

...

Keyword(s):

Palliative Care ◽

Nurse Practitioner ◽

Hospital Admissions ◽

Care Service ◽

Palliative Care Service ◽

Hospitalisation Cost ◽

Community Based ◽

Care Services ◽

Palliative Care Services ◽

At Home

ObjectiveThe aim of this study was to assess the clinical, economic and personal impacts of the nurse practitioner-led Sydney Adventist Hospital Community Palliative Care Service (SanCPCS) MethodsParallel economic analysis of usual care was conducted prospectively with patients from the enhanced SanCPCS. A convenient retrospective sample from the initial service was used to determine the impact of the enhanced service on patient care. A time series survey was used with patients and carers from within the expanded service group in order to measure patient outcomes and values as they approached death. ResultsPatients of the SanCPCS were less likely to die in hospital and had fewer hospital admissions. In addition, the service halved the estimated hospitalisation cost per patient, but the length of hospital stay was not affected by the service. The SanCPCS was more beneficial for women in terms of fewer hospital admissions and lower costs. Patients’ choices regarding place of care and death and what was ‘important’ to them changed over time. For instance, patients tended to prefer being at home as they approached death, and being pain free doubled in importance. ConclusionsNurse practitioner-led community palliative care services have the potential to result in significant economic and personal benefits for patients and their families in need of such care. What is known about the topic?National trends show an emphasis on community services with the aim of promoting and supporting the choice of dying at home, and this coincides with drives to reduce hospital costs and length of stay. Community-based palliative care services may offer substantial economic and clinical benefits. What does this paper add?The SanCPCS was the first nurse practitioner-led community-based palliative care service in Australia. The expansion of this service led to significantly fewer admissions and deaths in hospital, and halved the estimated hospitalisation cost per patient. What are implications for practitioners?Nurse practitioner-led models for care in the out-patient or community setting are a logical direction for palliative services through the engagement of specialised providers uniquely trained to support, nurture, guide and educate patients and their carers.

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Challenges of implementing voluntary assisted dying in Victoria, Australia

International Journal of Palliative Nursing ◽

10.12968/ijpn.2020.26.8.425 ◽

2020 ◽

Vol 26 (8) ◽

pp. 425-430

Author(s):

Margaret O'Connor ◽

Janet Philips

Keyword(s):

Palliative Care ◽

Care Service ◽

Palliative Care Service ◽

Safe Space ◽

Assisted Dying ◽

Community Based ◽

Care Services ◽

Palliative Care Services ◽

Hastened Death ◽

At Home

Background: Staff working in community palliative care services are accustomed to the intimate conversations that a patient being at home can engender. Being at home can provide a safe space for a patient to express difficulties, including expressing a desire for hastened death. With the implementation of voluntary assisted dying in Victoria in mid-2019, palliative care services have needed to review and adapt policies and practices to incorporate this new procedure. While it was anticipated that a small percentage of people would request access to voluntary assisted dying, in the wake of such significant change, there were numerous implications for palliative care services to consider. This paper describes both the organisational and individual changes undertaken by one community-based palliative care service, in anticipation of legalised assistance in dying. The range of responses to the issues raised are discussed, in preparation for, and in the early days of, voluntary assisted dying.

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A Systematized Approach to Advancing the Quality of Community-Based Palliative Care

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211065173 ◽

2021 ◽

pp. 104990912110651

Author(s):

Terri L. Maxwell ◽

Alexandra L. Hanlon ◽

Mary D. Naylor

Keyword(s):

Palliative Care ◽

Lessons Learned ◽

Organizational Leaders ◽

Community Based ◽

Care Services ◽

Use Of Services ◽

Core Concepts ◽

Palliative Care Services ◽

Ill Adults ◽

Selection Of

Despite growing recognition of the importance of community-based palliative care, optimizing the use of services continues to be a challenge. Until recently, key barriers were reimbursement and limited access. As services have become increasingly available, engagement of patients and their caregivers has emerged as a major obstacle. The Palliative Activation SystemTM (PAS) is a comprehensive, quality improvement methodology designed to promote enhanced engagement of seriously ill adults and their caregivers in optimizing the use of community-based palliative care services and accelerate clinicians’ progress in meeting patients’ and caregivers’ care goals. This paper describes the design of the PAS. Experts in patient engagement and the development and evaluation of palliative care programs advised organizational leaders in the development of this methodology. The “Patient and Family Engagement” framework proposed by Carman and colleagues (2013) guided this work. The framework informed the selection of three core concepts—care alignment, illness trajectory, and social determinants of health—as foundational to the goals of the PAS. Additionally, this framework guided the selection of measures that will be used to assess progress in achieving enhanced engagement. This background work, coupled with findings from interviews with patients and caregivers who are current recipients of palliative care services, resulted in the implementation and ongoing testing of strategies targeting clinicians and organizational leaders and designed to enhance engagement. Lessons learned from the design phase of the PAS will advance the efforts of other organizations committed to increasing patient and caregiver engagement and enhancing attainment of their goals.

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Physiotherapy Intervention in Palliative Care for HIV Comorbidities: Can it be a Best Practice for Public Policy for Palliative Care in Zambia?

Journal of Preventive and Rehabilitative Medicine ◽

10.21617/jprm2020.224 ◽

2020 ◽

Vol 2 (1) ◽

pp. 92-104

Author(s):

Esther Munalula Nkandu ◽

◽

Micah Mutuna Simpamba ◽

Hastings Kachingwe Shula ◽

Theresa Lesa Chisoso ◽

...

Keyword(s):

Palliative Care ◽

Community Health ◽

Community Health Workers ◽

Quantitative Data ◽

Health Workers ◽

Rehabilitation Services ◽

People Living With Hiv ◽

Community Based ◽

Physiotherapy Intervention ◽

Living With Hiv

Introduction:The prolonged life expectancy for people living with HIV has led to an increase in the prevalence of people living with HIV and AIDS.Most of these patients are experiencing episodes of wellness and illness with related disability. In Zambia, many HIV patients who required rehabilitation services were not able to access these services.A community based physiotherapy intervention programme using Community Health Workers who were equipped with basic physiotherapy skills was set up in Mtendere and Chawama Townships of Lusaka, Zambia from 2008 to 2015.This study set out to assess the intervention output in relation to patients’ trends, process of the intervention and challenges experienced for the period October, 2012 to September, 2014.Methods: This evaluation reviewed monthly and annual reports of the programme from October, 2012 to September, 2014.A desk review of palliative care related reports and policy was also reviewed. Both qualitative and quantitative data was extracted from these reports, with quantitative data being analyzed using excel while qualitative data was analysed usingQSR NVIVO 10 after being transcribed and translated from texts.Results: The patients’ trends during this period showed a steady increase in the proportion of new patients being enrolled onto the programme compared to those who were being lost to follow up, death, discharge or other loss such as transfers and many others. Themes under qualitative analysis were Community Health Workers, procurements, service delivery programme challenges and palliative care policy.The programme planned to conduct two trainings for each of the years under review but only managed one in each year. There were many challenges identified under this programme and all of them bordered on inconsistencies in the release of funds.Conclusion: This evaluation shows that the prevalence of HIV patients presenting with disabling conditions has been increasing and there is need to provide the needed rehabilitation services through the community based programme. Using Community Health Workers to provide physiotherapy services in the community enables many patients to access these services and hence a policy that supports this would be ideal. Keywords:palliative care; physiotherapy; HIV comorbidity; public policy

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