Insights into Advance Care Planning in Africa.

Advance Care Planning is an important element of palliative care whose relevance has over the years shifted from focusing on patients at end of life to being applicable at any stage of an individual's health. It is said to be beneficial not only to the patient but also to the general health care system. It may facilitate a peaceful death in addition to minimizing unnecessary costs and the use of resources yet its use among health care workers in Africa is not well researched. This study therefore aimed to explore the use of Advance Care Planning among health care providers in sub-Saharan Africa. It was a survey that targeted health care professionals across Sub-Saharan Africa who were either current staff or alumni of Hospice Africa Uganda (HAU) between 2012 and 2023. These were conveniently sampled from HAU data base. An electronic survey was sent out, data was collected into an excel sheet and it was analysed descriptively. Responses to the survey came from nine out of 37 countries with PC services across Africa and there was a 14% response rate. 83% of the respondents had insight into Advance Care Planning and a surprise finding was that 40% had cared for patients with ACP. The majority (96%) would respect Advance Care Plans of their patients. These findings gave some insights into the use of ACP although the results cannot be generalised to a wider demography of healthcare providers.

The socioeconomic burden of a diagnosis of cervical cancer in women in rural Uganda: findings from a descriptive qualitative study.

AIM: The aim of the study was to diagnose the socioeconomic burden and impact of a diagnosis of cervical cancer in rural women in the context of a low-resourced country, Uganda, through a descriptive qualitative enquiry. METHODS: This was a multi-site descriptive qualitative inquiry, conducted at three hospice settings; Mobile Hospice Mbarara in the Southwest, Little Hospice Hoima in Midwest, and Hospice Africa Uganda Kampala in Central Uganda. A purposive sample of women with a histologically confirmed diagnosis of cervical cancer were recruited. Data were collected using open-ended audio-recorded interviews conducted in the native languages of the participants. Interviews were transcribed verbatim in English. Braun and Clarke's (2019) framework of thematic analysis was used. RESULTS: A total of 13 women, with mean age 49.2 years (range 29-71), participated in the study. All participants were of low socioeconomic status. The majority (84.6%) had advanced disease at diagnosis. A detailed reading of transcripts produced three major themes: (1) the impact of cervical cancer on women's relationships (2) the disrupted and impaired activities of daily living (ADLs), and (3) economic disruptions. CONCLUSIONS: A diagnosis of cervical cancer introduces significant socioeconomic disruptions in a woman's and her family's life. Cervical cancer causes disability, impairs the woman and her family's productivity and exacerbates levels of poverty in the home. High and expensive out-of-pocket expenditure on investigations, treatments and transport costs further compound the socioeconomic burden.

Clinicians' and nurses' documentation practices in palliative and hospice care.

BACKGROUND: Health workers are likely to document patients' care inaccurately, especially when using new and revised case tools, and this could negatively impact patient care. AIM: To assess nurses' and clinicians' documentation practices when using a new patients' continuation case sheet (PCCS) and explore nurses' and clinicians' experiences regarding the documentation of patients' information in the new PCCS. The purpose of introducing the PCCS was to improve the continuity of care for patients attending clinics at which they were unlikely to consistently see the same clinician or nurse. METHOD: This was a mixed-methods study. The cross-sectional inquiry retrospectively reviewed 100 case notes of active patients in a hospice and palliative care programme. Data were collected using a structured questionnaire with constructs formulated from the new PCCS under study. The qualitative element was face-to-face, audio-recorded, open-ended interviews with a purposive sample of one palliative care clinician and four palliative care nurse specialists. Thematic analysis was used. RESULTS: Patients' biogeographic information was missing in 5% to 10% case notes. Spiritual and psychosocial issues were not documented in 42.6% of patients' case notes and vital signs, in 49.2%. The poorest documentation practices were observed in the past medical history part of the PCCS, noted in 40%-63% of the 100 case notes included in this study. Four themes emerged from interviews with clinicians and nurses: (1) what remains unclear and challenges; (2) comparing the past with the present; (3) experiential thoughts, and; (4) transition and adapting to change. CONCLUSION: The PCCS seems to be a comprehensive and simple tool that can be used to document patients' information at subsequent visits. To increase its reliability and validity, clinicians and nurses need training on how to use it. Clinicians and nurses need to prioritise accurate and complete documentation of patient care in the PCCS to ensure quality care provision. This study should be extended to other sites using similar tools to ensure representative and generalisable findings.

The intersection of food insecurity and health for rural Malawian women at the end of life.

BACKGROUND: One of the poorest countries in the world, Malawi's palliative care system is under-resourced, and one-third of the population is food-insecure. AIMS: This study describes the lived experience of female palliative care patients, and their caregivers, and aimed to: (1) analyse their physical, spiritual and mental health needs; and (2) analyse best palliative nursing practice for patients at the end of life. An unexpected finding was the impact of food insecurity on the women and their caregivers. METHODS: We conducted interviews with 26 women who at the end of life and 14 of their caregivers. All were participating in a community palliative care programme offered by an AIDS support organisation in Kasungu, Malawi. We used deductive qualitative analysis to organise identified themes using the four pillars of food security: availability, access, utilisation and stability. FINDINGS: All study participants experienced challenges with food security. CONCLUSIONS: We offer policy recommendations for palliative care nurses, and other allied health professionals.

Women's work at end of life: The intersecting gendered vulnerabilities of patients and caregivers in rural Malawi.

Gender inequality in the form of gender-based violence manifests throughout the course of women's lives but has a particularly unique impact at end of life. We sampled 26 patients and 14 caregivers for this qualitative critical ethnographic study. The study purpose was to describe the lived experience of female palliative care patients in rural Malawi and their caregivers. The specific aims were to (i) analyse physical, spiritual and mental health needs and (ii) guide best healthcare practice. The study was informed by feminist epistemology, which drew us to an analysis focused on how gender inequality and gender-based violence affect the care of those with terminal illness. In this article, based on our findings, we demonstrate how gender inequality manifests through the intersecting gendered vulnerabilities of patients and their caregivers in rural Malawi. The findings specifically provide insight into the gendered nature of care work and how the gendered life trajectories of both patients and caregivers intersect to impact the health and well-being of both groups. Our findings have implications on how palliative care can be scaled up in rural Malawi in support of women who are experiencing intimate partner violence at end of life, and the caregivers responsible for their well-being.

Improving access to palliative care for patients with cancer in Africa: 25 years of Hospice Africa.

All cancer care must target the needs of the whole population, not just the few who reach curative services. This paper will refer to palliative care in Uganda and in the countries now aware of the need for palliative care. Human Rights Watch has declared that doctors who are aware that we can control cancer pain and are not doing it or taking steps to make it happen, are considered to be torturers (Human Rights Watch (2009) Please, do not make us suffer any more... Accessed 11 July 2019). As Uganda celebrates 25 years since the introduction of palliative care, is it now time to harvest the principles that have been applied in policies and services from the Government of Uganda? This has brought Uganda to the same level as the developed world as stage 4b palliative care (PC) services [1]. These policies and services need to be promoted to caring governments in Africa, and suitably adapted to the needs of each African country, with a plan for them to progress over the next 5 years. These steps will ensure standards, economic viability and cultural appropriateness. Let palliative care reach at least 50% of cancer patients in need in Africa by 2023.

Palliative care-related self-report problems among cancer patients in East Africa: a two-country study.

PURPOSE: Palliative care-related problems have not been measured in Africa in line with the WHO definition. This study aimed to measure the three-day period intensity of multidimensional problems (physical, psychological, social, and spiritual) among advanced cancer patients in Kenya and Uganda. METHODS: Adults with advanced malignant disease gave self-report data to the African Palliative Outcome Scale (POS). RESULTS: Among 210 respondents, more than half had an underlying HIV diagnosis (51.9 %). The worst ranked POS items were pain and information. In three multivariable ordinal logistic regression models with the 3 POS factors as dependent variables, for the first model (factor 1 physical and psychological well-being), as age increased, the well-being also improved (B = 0.022, p = 0.037), and as physical function score worsened, factor score also worsened (B = -0.685, p < 0.001). In the second model (factor 2 interpersonal well-being), a trend toward significance was found for gender, with being male predicting a higher (better) factor score (B = 0.502, p = 0.067). For the third model (factor 3 existential and spiritual), increasing age was predictive of higher (better) factor score (B = 0.023, p = 0.032), and worsening function was predictive of lower (worse) factor score (B = -0.543, p < 0.001). CONCLUSIONS: This novel data revealed pain and information to plan for the future to affect patients most severely, underlining the importance of analgesia and social support. HIV infection did not affect the level of need. Our data suggest increasing need as function declines; therefore, home-based models with adequate family support are essential.

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.

Improving access to analgesic drugs for patients with cancer in sub-Saharan Africa.

WHO expects the burden of cancer in sub-Saharan Africa to grow rapidly in coming years and for incidence to exceed 1 million per year by 2030. As a result of late presentation to health facilities and little access to diagnostic technology, roughly 80% of cases are in terminal stages at the time of diagnosis, and a large proportion of patients have moderate to severe pain that needs treatment with opioid analgesics. However, consumption of opioid analgesics in the region is low and data suggest that at least 88% of cancer deaths with moderate to severe pain are untreated. Access to essential drugs for pain relief is limited by legal and regulatory restrictions, cultural misperceptions about pain, inadequate training of health-care providers, procurement difficulties, weak health systems, and concerns about diversion, addiction, and misuse. However, recent initiatives characterised by cooperation between national governments and local and international non-governmental organisations are improving access to pain relief. Efforts underway in Uganda, Kenya, and Nigeria provide examples of challenges faced and innovative approaches adopted and form the basis of a proposed framework to improve access to pain relief for patients with cancer across the region.

The personal value of being a palliative care Community Volunteer Worker in Uganda: a qualitative study.

BACKGROUND: Volunteers in palliative care play a key role, particularly in the hospice setting. The expansion of palliative care into developing countries has been accompanied by the emergence of volunteer workers, who are providing a main source of support and care for patients, many of whom never see a health professional. AIM: The aim of this study was to evaluate the motivation for becoming a volunteer and the personal impact of being a palliative care Community Volunteer Worker in Uganda. DESIGN: A qualitative methodology using semi-structured individual and group digitally recorded interviews was adopted for the study. Data were analysed for emerging themes using thematic analysis. SETTING/PARTICIPANTS: Forty-three interviews were undertaken, 32 with Community Volunteer Workers and 11 with the Hospice clinical teams, using semi-structured digitally recorded individual, group and focus group interviews at the Hospice Africa sites in Uganda. RESULTS: The results identified the cultural wish to help people as a key motivator in becoming a volunteer. Additionally, the volunteers reported having a sense of pride in their volunteering role, and this role had a positive impact on their perceived status in their local community. CONCLUSION: This model of volunteering is clearly having an impact on the volunteers, both personally and also in terms of how they are treated in their communities. Further research to explore the long-term personal benefits of being a palliative care volunteer is recommended.

Pain control in the African context: the Ugandan introduction of affordable morphine to relieve suffering at the end of life.

Dr Anne Merriman is the founder of Hospice Africa and Hospice Africa Uganda. She is presently Director of Policy and International Programmes. Here she tells the story of how HAU was founded. Dr Richard Harding is an academic researcher working on palliative care in Sub-Saharan Africa. This paper described Dr Merriman's experience in pioneering palliative care provision. In particular it examines the steps to achieving wider availability of opioids for pain management for those with far advanced disease. Hospice Africa Uganda has been a model facility in achieving high quality clinical care embedded in a strategy of advocacy and education, using a multifaceted approach that has addressed logistical, policy and legislative barriers. Until 1990 control of severe pain in Sub-Saharan Africa was non-existent except in Zimbabwe and S Africa. Oral affordable morphine was brought to Kenya through Nairobi Hospice that year, and to Uganda through Hospice Africa Uganda in 1993. This paper offers an example of a highly effective and cost efficient model of care that has transformed the ability to humanely manage the problems of those with terminal illness, and to offer a culturally appropriate "good death". Thus it is now possible to complete the ethical circle of care in resource poor circumstances.

Challenges faced by informal caregivers of hospice patients in Uganda.

BACKGROUND: Serious illness can cause economic devastation for families. Locally run patient day care programs, or programs for training caregivers for future caregiving employment, could provide a measure of economic resilience. We sought to gather pilot data on the circumstances of informal caregivers and the desirability of such programs. METHODS: In a convenience sample of patients' informal caregivers (ICs) visiting Hospice Africa Uganda in January 2006, face-to-face, survey interviews in local languages were conducted by hospice volunteers. RESULTS: Sixty-two surveys were completed. Eighty-seven percent of ICs were family members. Frequent needs reported by ICs were financial assistance (89%), free medications (77%), opportunities for income (52%), and caregiver training (44%). Caring for a terminally ill family member pressured ICs to stop attending school (51%), marry (32%), take embarrassing jobs (47%), or take jobs with health risks (42%). If a local day care center existed, 94% of respondents stated they would use it; 80% reported they would consider hiring a caregiver. Barriers to hiring a caregiver included costs (98%), patient preference (54%), and discomfort with a nonrelative caregiver (42%). Importantly, 96% reported interest in becoming a trained and certified caregiver. A minority of respondents felt that paid caregiving would go against their cultural traditions. CONCLUSION: Most ICs in this survey faced financial and personal hardships. A large majority reported that they would use day care or hired home care for their patients if it existed, and also reported interest in becoming certified, paid caregivers. These data suggest that an economic resilience option for families based on IC training in palliative care might work at Hospice Africa Uganda.

Uganda: delivering analgesia in rural Africa: opioid availability and nurse prescribing.

Hospice Africa Uganda introduced palliative medicine to Uganda in 1993 with enough funds to support a team of three clinicians for three months. Training in the medical and nursing schools was introduced in 1994. Since then, Uganda has achieved the three essential components of an effective public health strategy. It has also been the first country to have palliative care described as an essential clinical service and included in both the government's Strategic Health Plan and its HIV/AIDS National Strategic Framework (in 2000 and 2004), and to change the law to allow nurses and clinical officers who complete special training in palliative medicine at Hospice Uganda to prescribe morphine. Palliative care is spreading throughout the districts of Uganda, ensuring that morphine will be available to everyone who needs it. This is being done in collaboration with the Ministry of Health (MOH) and other organizations that collaborate in two umbrella organizations: the Palliative Care Association of Uganda and the Uganda Palliative Care Country Team. The former works "on the ground" in each district, establishing standards, collaborating, and carrying out continuing medical education in palliative care for all. The latter, chaired by the MOH, operates with the government to implement an integrated, coordinated, affordable, and culturally acceptable palliative care service throughout the country.

International aspects of palliative care in the elderly.

This article reviews the analogies between geriatrics and palliative care with practical guidance for setting up programs.