Palliative Care In sub-Saharan Africa Research Articles

Palliative Care in Sub-Saharan Africa: A Narrative Review.

Background: As a person nears the end of their life, culture and ethnicity increasingly drive preferences and priorities for care. Understanding these preferences and priorities is fundamental to health care professionals' goals to respect decision making and support the individual throughout this phase of life. Across Africa, several countries are in the initial stages of implementing palliative care services in their burgeoning health care systems. Moving forward, it is imperative to consider cultural similarities and differences when compared with the Western world, where the field of palliative care evolved, to create a tailored palliative care approach that is consistent with African culture. In palliative care, understanding cultural preferences and priorities requires communication between the patient and the provider and is a crucial step toward a successful implementation in Africa. A paternalistic patient-provider relationship is the current leading model in sub-Saharan Africa.1 Aim: This narrative review explores the prevalence of paternalism and explores its appropriateness and necessity in the current application of palliative care in sub-Saharan African countries. Methods: This narrative review was conducted using four databases as well as hand searching of relevant articles sourced from references of already selected articles. A total of 730 articles were identified. Fourteen articles met the inclusion/exclusion criteria set for this narrative review. Results: In sub-Saharan Africa, the leading patient-provider relationship was determined to be paternalistic. Reasons for this were language, education, cultural norms and expectations, lack of time, and benevolence. Conclusions: The implementation of palliative care often relies on communication of patient desires and goals. Consideration is needed to determine how a provider can appropriately know these factors in a paternalistic relationship.

Perinatal palliative care in sub-Saharan Africa: recommendations for practice, future research, and guideline development.

Worldwide, sub-Saharan Africa has the highest burden of global neonatal mortality (43%) and neonatal mortality rate (NMR): 27 deaths per 1,000 live births. The WHO recognizes palliative care (PC) as an integral, yet underutilized, component of perinatal care for pregnancies at risk of stillbirth or early neonatal death, and for neonates with severe prematurity, birth trauma or congenital anomalies. Despite bearing a disproportionate burden of neonatal mortality, many strategies to care for dying newborns and support their families employed in high-income countries (HICs) are not available in low-and-middle-income countries (LMICs). Many institutions and professional societies in LMICs lack guidelines or recommendations to standardize care, and existing guidelines may have limited adherence due to lack of space, equipment, supplies, trained professionals, and high patient load. In this narrative review, we compare perinatal/neonatal PC in HICs and LMICs in sub-Saharan Africa to identify key areas for future, research-informed, interventions that might be tailored to the local sociocultural contexts and propose actionable recommendations for these resource-deprived environments that may support clinical care and inform future professional guideline development.

"From the Time You Start With them Until the Lord Calls You": A Qualitative Study on the Experiences and Expectations of People Living with Advanced Cancer Interacting With Palliative Care Services in Uganda, Nigeria and Zimbabwe.

A challenge facing the provision of palliative care in sub-Saharan Africa is a means of increasing coverage of services whilst maintaining quality. Developing an evidence base that reflects patients' experiences and expectations of palliative care services, the context within which services are provided, and the approaches adopted by services in caring for patients, could facilitate and inform the planning and development of patient-centered and responsive services. To explore the experiences and expectations of palliative care for people living with advanced cancer in Nigeria, Uganda, and Zimbabwe. A secondary qualitative analysis of in-depth interviews with 62 people with advanced cancer in Nigeria, Uganda, and Zimbabwe. Framework approach to thematic analysis of transcripts was adopted, focusing on patients' experiences and expectations when interacting with palliative care services, aligning reporting with the COnsolidated criteria for REporting Qualitative research (COREQ). Four main themes were generated from the analysis: 1) Condition and community as drivers of a multidimensional burden when living with advanced cancer; 2) The expectations and endeavors of palliative care to ameliorate the impact of cancer on physical, psychological and basic needs; 3) Processes and preferences for interacting and communicating with palliative care services, and; 4) Restoration of hope in the context of limited resources. Wide-ranging physical, psychological, social and financial impacts on participants were outlined. These concerns were largely met with compassionate and responsive care in the context of constrained resources. Study findings can inform evolving notions of patient-centred care for serious illnesses in the participating countries.

The role of digital health in palliative care for people living with HIV in sub-Saharan Africa: A systematic review.

In 2018, 26.6 million people were living with HIV in sub-Saharan Africa. Palliative care services are recommended for people living with HIV at all stages from diagnosis through to end-of-life. However, the provision of palliative care in sub-Saharan Africa is limited, leading to little or no access for the majority of patients. Digital technologies in sub-Saharan Africa present an opportunity to improve access to palliative care for people living with HIV in the region. This review synthesised literature on digital health interventions for palliative care for people living with HIV in sub-Saharan Africa and assessed their effects on patient outcomes. Literature searches were conducted in MEDLINE, Embase, PsycINFO and Global Health. Inclusion and exclusion criteria were applied. Two independent reviewers conducted study screening, data extraction and quality appraisal. A narrative synthesis was performed to draw together and report findings across heterogeneous studies. Reporting of this review follows the Preferred Reporting Items for Systematic Review and Meta-Analysis checklist. Out of 4117 records, 25 studies were included, covering 3592 people living with HIV, across 21 countries. Studies included three randomised controlled trials, three qualitative, three pre- and post-test, two observational, two case series, six cross-sectional and six mixed methods studies. Telemedicine was the most reported digital health intervention, with 12 studies demonstrating the effectiveness of digital health interventions. Emerging evidence suggests digital health interventions can be effective in facilitating patient-provider communication and health professional decision-making as a part of palliative care for people living with HIV. There is a need for further development and evaluation of digital health interventions alongside determining optimal approaches to their implementation as a part of palliative care provision in sub-Saharan Africa.

Extension for Community Healthcare Outcomes-Palliative Care in Africa Program: Improving Access to Quality Palliative Care.

PURPOSEThere is limited access to quality palliative care (PC) for patients with advanced cancer in sub-Saharan Africa. Our aim was to describe the development of the Project Extension for Community Healthcare Outcomes-Palliative Care in Africa (ECHO-PACA) program and describe a preliminary evaluation of attitudes and knowledge of participants regarding the ability of the program to deliver quality PC.METHODSAn interdisciplinary team at the MD Anderson Cancer Center, guided by experts in PC in sub-Saharan Africa, adapted a standardized curriculum based on PC needs in the region. Participants were then recruited, and monthly telementoring sessions were held for 16 months. The monthly telementoring sessions consisted of case presentations, discussions, and didactic lectures. Program participants came from 14 clinics and teaching hospitals in Ghana, Kenya, Nigeria, South Africa, and Zambia. Participants were surveyed at the beginning, midpoint, and end of the 16-month program to evaluate changes in attitudes and knowledge of PC.RESULTSThe median number of participants per session was 30. Thirty-three (83%) of 40 initial participants completed the feedback survey. Health care providers’ self-reported confidence in providing PC increased with participation in the Project ECHO-PACA clinic. There was significant improvement in the participants’ attitudes and knowledge, especially in titrating opioids for pain control (P = .042), appropriate use of non-opioid analgesics (P = .012), and identifying and addressing communication issues related to end-of-life care (P = .014).CONCLUSIONProject ECHO-PACA was a successful approach for disseminating knowledge about PC. The participants were adherent to ECHO PACA clinics and the completion of feedback surveys. Future studies should evaluate the impact of Project ECHO-PACA on changes in provider practice as well as patient outcomes.

P-136 Providing palliative care to the world’s poorest: a service review of a community palliative care programme in mulanje mission hospital, malawi

Background Despite a huge need for palliative care in Sub-Saharan Africa it is estimated that only 5% of those requiring palliative care in Sub-Saharan Africa receive it. 1 One hospital providing an outpatient palliative care service since is Mulanje Mission Hospital (MMH) in southern Malawi. The clinic currently services 462 patients between 3 nurses, with appointments offered 2–3 times per year. Due to geographical challenges one home visit can take up to 5 hours to complete. As part of Swindon Academy’s External Student Selected Component program a field trip to MMH was undertaken in 2016. Approval from the senior board of MMH this service evaluation aimed to analyse the population demographic and look for any patterns of mortality. Methods 100 outpatient palliative care records were examined from a 2 year sample to determine the last point of contact with the patient and the number of years they spent in the programme, with Chi-squared tests used to assess significance. Results Of the 100 patients 45 died within one year of first contact. 32% of these deaths were due to Kaposi Sarcoma (KS), despite KS making up 57% of the primary diagnosis. Conversely 53% of deaths within one year were due to other non-KS cancers, most commonly cervical. It was statistically significant that a patient was more likely to be alive with KS than with other type of cancer (p=0.0000162). Conclusions To correctly prioritise the needs of palliative care patients in low resource settings there needs to be identification of patients who are most likely to require intensive input. Anticipating the need for end of life care may allow increased clinic reviews and ultimately better symptom management to be prioritised. Reference 1. Harding, R Powell, RA Downing, J Connor, et al . Generating an African palliative care evidence base: the context, need, challenges, and strategies. J Pain Symptom Manage 2008;36(3):304–9.

The personal value of being part of a Tropical Health Education Trust (THET) links programme to develop a palliative care degree programme in Sub Saharan Africa: a descriptive study of the views of volunteer UK health care professionals.

BackgroundThere is a global need to expand palliative care services to reach the increasing number requiring end of life care. In developing countries where the incidences of cancer are rising there is an urgent need to develop the palliative care workforce. This paper reports on a UK Department for international development (DFID) initiative funded through the Tropical Health Education Trust (THET) where palliative care staff, both clinical and academic, volunteered to help to develop, support and deliver a degree in palliative care in sub-Saharan Africa. The objective of the study was to explore the personal impact on the health care professionals of being part of this initiative.MethodsAn evaluation approach using a confidential electronic survey containing quantitative and qualitative questions was distributed to all 17 volunteers on the programme, three months after completion of the first cohort. Data were analysed using descriptive statistics and content thematic analysis. Ethical review deemed the study to be service evaluation.Results82 % (14) responded and several themes emerged from the data including the positive impact on teaching and educational skills; clinical practice and finally personal development. Using a score of 1–10 (1-no impact, 10 maximum impact) ‘Lifestyle choices - life work balance’ (rating 7.83) had the most impact.ConclusionsThis approach to supporting the development of palliative care in Sub-Saharan Africa through skill sharing in supporting the delivery of a degree programme in palliative care was successful in terms of delivery of the degree programme, material development and mentorship of local staff. Additionally, this study shows it provided a range of positive impacts on the volunteer health care professionals from the UK. Professional impacts including increased management skills, and being better prepared to undertake a senior role. However it is the personal impact including lifestyle choices which the volunteers reported as the highest impact. Interestingly, several of the faculty have joined other volunteer programmes to continue to support the international development of palliative care.

Tumor size and stage of breast cancer in Côte d'Ivoire and Republic of Congo – Results from population-based cancer registries

PurposeBreast cancer is now the leading female cancer in sub-Saharan Africa, but there is relatively little information on breast cancer characteristics from this region. We studied, on a population basis, the size and stage of female breast cancer at diagnosis in Côte d'Ivoire and Republic of Congo. MethodsData on tumor size and stage of breast cancer at diagnosis were collected by population-based cancer registries in Abidjan (the capital of Côte d'Ivoire; 141 cases) and Brazzaville (the capital of Republic of Congo; 139 cases) from a random group of female breast cancer cases that were diagnosed in 2008–2009 using the same protocol. ResultsThe majority of breast cancers in both countries were advanced cancers. In Côte d'Ivoire, 68% of tumors were ≥5 cm in diameter and 74% of cancers were stage III or IV at diagnosis; the corresponding proportions in Republic of Congo were 63% and 81%. ConclusionThese results underscore the importance of increased awareness about early detection of breast cancer, as well as expansion of the capacity to provide appropriate diagnosis, treatment, and palliative care in sub-Saharan Africa.

A Pilot Study of Palliative Care Provider Self-competence and Priorities for Education in Kenya.

This study explored palliative care provider self-competence and priorities for future education in an inpatient hospice setting in Kenya. Self-competence scores for clinical skills and patient and family communication skills were hypothesized to differ according to provider type. A descriptive, cross-sectional study design was piloted at Kimbilio Hospice, a 26-bed rural, inpatient facility in Kenya. A quantitative survey instrument entitled, "Self assessment of clinical competency and concerns in end-of-life care," was administered to participants. Survey responses were collected from 5 clinical staff, 11 caregivers, and 8 support staff. Data were analyzed using Kruskal-Wallis test to compare between mean scores. Statistically significant differences were found in 5 self-competence variables: performing a basic pain assessment, use of oral opioid analgesics, assessment and management of nausea/vomiting and constipation, and discussing an end-of-life prognosis with a patient's family member (P < .05). Sixteen participants (66%) selected pediatric palliative care as their top priority for future education. The findings support the hypothesis that palliative care providers have varying levels of self-competence. Improving education to build palliative care competencies in adult and pediatric palliative care in sub-Saharan Africa is recommended.

An evaluation of a palliative care outreach programme for children with Burkitt lymphoma in rural Cameroon.

Palliative care (PC) is the most appropriate treatment for patients with life-limiting, incurable diseases, but it is a relatively new concept in sub-Saharan Africa (SSA). A lack of curative treatment options for some conditions creates a great need for PC, but such services are rarely provided in SSA. More research into PC in SSA is urgently needed to create an evidence base to confirm the importance of appropriate PC services. To gain a better understanding of the needs of patients and their families visited by a children's PC nurse in Cameroon and to identify aspects of the service that can be improved. A qualitative study design with semi-structured interviews was used. Tape-recorded interviews were transcribed and thematically analysed. Twelve interviews were conducted with patients, carers and nurses. Financial aid, general disease improvement and prayers were the directly expressed needs of service recipients. Specialist training in children's PC was the main need expressed by the nurses. Open communication about clinical status and treatment failure, more detailed counselling, more distraction for patients and respite for carers were identified as underlying needs. It is possible to provide an effective children's PC service that meets the most urgent needs of recipients in a rural setting in SSA. Recommendations include improved counselling, specialist education for staff, expansion of local support networks and more frequent home visits. More studies are needed to help define the need for PC in children with life-limiting diseases.

Family cancer caregiving in urban Africa: interrogating the Kenyan model

This article interrogates the complexities of the family cancer caregiver role in an urban (Nairobi) context within the framework of the model of palliative care in sub-Saharan Africa. Individual interviews and focus groups were utilized to explore the phenomenon of family cancer caregiving. Data were analysed from an interpretative phenomenological approach. Emergent themes demonstrate the ambiguities inherent in the cultural context of cosmopolitan Nairobi where, in addition to their traditional designated roles, women caregivers simultaneously took on non-traditional roles including single-parenting and full-time professions. Findings point to the need for a more nuanced understanding of the complexities of family cancer caregiving, a process which inevitably entails interrogating assumptions about the ‘African’ and, more specifically, the ‘Kenyan’ model of caring.

Stressors and Resources of Caregivers of Patients With Incurable Progressive Illness in Sub-Saharan Africa

Family caregivers are central to palliative care in sub-Saharan Africa. Yet although supporting caregivers requires a comprehensive understanding of caregiver burden, there has been little research into this topic in Africa. Using the Stress Process Model to investigate the burden experienced by caregivers in South Africa and Uganda, we interviewed 37 caregivers and analyzed the data thematically. Caregivers' primary stressors related to day-to-day patient care and emotional support; secondary stressors included financial hardship, family responsibilities, and social isolation. Caregivers' social, relational, spiritual, and psychological resources mediated the effects of these stressors. Strengthening one resource strengthened others, but the failure of one resource hindered other resources, exacerbating burden. In providing caregiver support, policymakers and service providers should focus on enhancing caregivers' resources as well as alleviating their stressors.

Novel open-source electronic medical records system for palliative care in low-resource settings.

BackgroundThe need for palliative care in sub-Saharan Africa is staggering: this region shoulders over 67% of the global burden of HIV/AIDS and cancer. However, provisions for these essential services remain limited and poorly integrated with national health systems in most nations. Moreover, the evidence base for palliative care in the region remains scarce. This study chronicles the development and evaluation of DataPall, an open-source electronic medical records system that can be used to track patients, manage data, and generate reports for palliative care providers in these settings.DataPall was developed using design criteria encompassing both functional and technical objectives articulated by hospital leaders and palliative care staff at a leading palliative care center in Malawi. The database can be used with computers that run Windows XP SP 2 or newer, and does not require an internet connection for use. Subsequent to its development and implementation in two hospitals, DataPall was tested among both trained and untrained hospital staff populations on the basis of its usability with comparison to existing paper records systems as well as on the speed at which users could perform basic database functions. Additionally, all participants evaluated this program on a standard system usability scale.ResultsIn a study of health professionals in a Malawian hospital, DataPall enabled palliative care providers to find patients’ appointments, on average, in less than half the time required to locate the same record in current paper records. Moreover, participants generated customizable reports documenting patient records and comprehensive reports on providers’ activities with little training necessary. Participants affirmed this ease of use on the system usability scale.ConclusionsDataPall is a simple, effective electronic medical records system that can assist in developing an evidence base of clinical data for palliative care in low resource settings. The system is available at no cost, is specifically designed to chronicle care in the region, and is catered to meet the technical needs and user specifications of such facilities.

Research into palliative care in sub-Saharan Africa

Roughly half a million people die of cancer in sub-Saharan Africa every year. Despite rapid expansion of palliative care for cancer, coverage remains woefully inadequate. The WHO public health strategy for palliative care aims to increase access to palliative care services through its integration into health-care systems. We present the available evidence for the four WHO strategy pillars of policy, education, drug availability, and implementation, and propose a fifth pillar of research activity to stimulate improvement of care. Increased attention to the generation of research evidence is essential to achieve quality and coverage of appropriate palliative care for patients with advanced cancer in sub-Saharan Africa. The use of locally validated, patient-reported outcome measures is an important advance in the measurement and improvement of care and patient wellbeing. Palliative care for patients with cancer in Africa currently receives far less research attention than does palliative care for patients with HIV/AIDS, but in view of projected increasing cancer incidence in the region, generation of local evidence to inform and allow assessment of palliative care for patients with cancer is urgently needed.

Pediatric Palliative Care in Sub-Saharan Africa: Understanding the Need, Approaching Solutions (TH327)

1.Describe the background of pediatric palliative care in sub-Saharan Africa, with emphasis on epidemiologic need and unique challenges to care.2.Examine a model of pediatric palliative care delivery in South Africa and achieve an understanding of the program's approach to continued growth and sustainability.3.Identify strategies for advancing pediatric palliative care clinical and research activities on the subcontinent. The case for improving access to pediatric palliative care in sub-Saharan Africa is a compelling one. It is estimated that approximately 50% of all pediatric deaths worldwide happen in sub-Saharan Africa, largely due to the burden of perinatal illness and preventable childhood illnesses. Simultaneously, the ability to manage incurable and life-limiting conditions such as HIV/AIDS, cancer, and prematurity on the subcontinent is growing. Comprehensive palliative care that addresses physical symptoms, psychosocial needs, and medical decision making can greatly impact the quality of care for African children and families facing serious illness and may also influence resource utilization within the subcontinent's growing healthcare systems. This session will provide participants with insight into the status of pediatric palliative care in sub-Saharan Africa and the unique cultural and logistical challenges that arise in this setting. The Big Shoes Foundation, a nongovernmental organization providing pediatric palliative care services throughout South Africa, will be highlighted as a model for developing pediatric palliative care services in Africa. Emphasis will be placed on examining the organization's approach to clinical care and government and community partnerships. The presentation will conclude with an exploration of how we as a global network of palliative care researchers and clinicians can help to build capacity in this vital area.

Current state of palliative and end-of-life care in home versus inpatient facilities and urban versus rural settings in Africa

Because palliative care in sub-Saharan Africa may not fit the style of delivery of palliative care in the global north, exploring the evidence can serve to reduce existing barriers and help streamline national policies that determine the optimal setting to implement formal palliative and end-of-life services. A search was conducted in Ovid MEDLINE®, PubMed, and Google Scholar databases using the search terms nursing care, terminal care, end of life care, palliative care, dying, death, hospice, opioids, morphine, Africa, sub-Saharan Africa, caregivers, and place of death. Eighty-seven relevant articles were found using the search terms. Of these, 22 matched inclusion criteria and were reviewed. Opioid availability and distribution is best accessed at the inpatient level, and hence, pain and end-of-life symptoms are best managed at the inpatient level. Despite the great need, nurses' lack of prescription power in the home-based setting is a shortcoming. Home deaths have not been adequately studied, but research suggests that palliative care generally causes economic strain, psychosocial distress on family members, and increased risk of transmission of communicable disease. Hospice is understudied but shows favorable outcomes. Funding and research need to focus on development of inpatient palliative and hospice care units in urban areas. In rural areas, the priority should be a home-based care model that involves nurses who are privileged to prescribe opioids and adjunctive medication therapies.

Intensity and correlates of multidimensional problems in HIV patients receiving integrated palliative care in sub-Saharan Africa

BackgroundDespite global clinical guidance that HIV patients should have multidimensional care integrated into their management, there has been very limited data to guide practice since the advent of treatment. This...

Prevalence, Burden, and Correlates of Physical and Psychological Symptoms Among HIV Palliative Care Patients in Sub-Saharan Africa: An International Multicenter Study

ContextDespite HIV remaining life limiting and incurable, very little clinical research focus has been given to the prevalence and related burden of physical and psychological symptoms for those accessing palliative care. Despite evidence of problems persisting throughout the trajectory and alongside treatment, scant attention has been paid to these manageable problems. ObjectivesThis study aimed to measure the seven-day period prevalence and correlates of physical and psychological symptoms, and their associated burden, in HIV-infected individuals attending palliative care centers in sub-Saharan Africa. MethodsConsecutive patients in five care centers across two countries completed the Memorial Symptom Assessment Scale-Short Form, with additional demographic and disease-oriented variables. ResultsTwo hundred twenty-four patients participated. The most common symptoms were pain in the physical dimension (82.6%) and worry in the psychological dimension (75.4%). Interestingly, 71.4% reported hunger. Women, and those with worse physical function, were more likely to experience burden. However, being on antiretroviral therapy (ART) was not associated with global, physical, or psychological symptom burden. ConclusionThis study is the first to report physical and psychological symptom burden in HIV-infected populations receiving palliative care in sub-Saharan Africa. Despite increasing access to ART, these burdensome and manageable problems persist. The assessment of these problems is essential alongside assessment of ART virological outcomes.

Hospital based palliative care in subSaharan Africa; a 6 month review from Malawi

BackgroundThe WHO recognises the importance of palliative care in an African setting. Despite this services are often patchy and inconsistent, and many operate at health centre and/or community level. Few...

Hospital based palliative care in sub-Saharan Africa; a six month review from Malawi

BackgroundThe World Health Organisation recognises the importance of palliative care in an African setting. Despite this services are often patchy and inconsistent, and many operate at health centre and/or community level. Few reports from hospital based palliative care services in sub-Saharan Africa exist in the current literature. As part of its activities Tiyanjane Clinic has been providing hospital based palliative care to patients at Queen Elizabeth Central Hospital, a large government tertiary referral institution, in the Southern region of Malawi since 2003, caring for patients with HIV, cancer and other non-malignant palliative diagnoses.MethodsA retrospective review of case notes for all in-patients seen by Tiyanjane Clinic over a six month period (April-Sept 2009) was undertaken.ResultsA total of 177 patients were seen, for whom 137 case notes were available (77%). 58% of patients were male, 42% female. The average age of patients was 39.1 years (range 15-92 years). 54% of patients were HIV positive, with 34% on ARV drugs at the time of care. 42% of patients had HIV related diagnoses, including AIDS defining malignancies, 48% had (non AIDS related) cancers and 9% had other palliative diagnoses. The mean age of patients with HIV related diagnoses was 34 years, for cancer patients it was 48 years. Pain was the most commonly reported symptom (74%), with 56% of patients requiring oral morphine. The mean daily dose of morphine was 30 mg/day (range 9-100 mg). 65% of patients were discharged home, 26% of patients died during admission.ConclusionsThe palliative care population in this setting is relatively young, especially among patients with HIV related diagnoses. HIV and cancer are the main diagnostic groups. Pain is the most commonly reported symptom, with oral morphine frequently required. Health workers require access to and knowledge of oral morphine in order to provide appropriate assistance to patients under their care.