Palliative care needs of people and/or their families with serious and/or chronic health conditions in low- or middle-income country (LMIC) humanitarian settings-a systematic scoping review protocol.

BACKGROUND: Palliative care in low- or middle-income country (LMIC) humanitarian settings is a new area, experiencing a degree of increased momentum over recent years. The review contributes to this growing body of knowledge, in addition to identifying gaps for future research. The overall aim is to systematically explore the evidence on palliative care needs of patients and/or their families in LMIC humanitarian settings. METHODS: Arksey and O'Malley's (Int J Soc Res Methodol. 8:19-32, 2005) scoping review framework forms the basis of the study design, following further guidance from Levac et al. (Implement Sci 5:1-9, 2010), the Joanna Briggs Institute (JBI) Peters et al. (JBI Reviewer's Manual JBI: 406-452, 2020), and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) from Tricco et al. (Ann Intern Med 169:467-73, 2018). This incorporates a five-step approach and the population, concept, and context (PCC) framework. Using already identified key words/terms, searches for both published research and gray literature from January 2012 to October 2022 will be undertaken using databases (likely to include Cumulative Index of Nursing and Allied Health (CINAHL), MEDLINE, Embase, Global Health, Scopus, Applied Social Science Index and Abstracts (ASSIA), Web of Science, Policy Commons, JSTOR, Library Network International Monetary Fund and World Bank, Google Advanced Search, and Google Scholar) in addition to selected pre-print sites and websites. Data selection will be undertaken based on the inclusion and exclusion criteria and will be reviewed at each stage by two reviewers, with a third to resolve any differences. Extracted data will be charted in a table. Ethical approval is not required for this review. DISCUSSION: Findings will be presented in tables and diagrams/charts, followed by a narrative description. The review will run from late October 2022 to early 2023. This is the first systematic scoping review specifically exploring the palliative care needs of patients and/or their family, in LMIC humanitarian settings. The paper from the review findings will be submitted for publication in 2023.

Palliative Justice Post-COP27.

The climate crisis is a planetary existential threat, disproportionately affecting the poorest populations worldwide. People in low- and middle-income countries (LMICs) experience the most detrimental consequences of climate injustice, endangering their livelihoods, safety, overall wellbeing, and survival. Although the 2022 United Nations Climate Change Conference (COP27) put forth several internationally salient recommendations, the outcomes fall short to efficiently tackle the suffering that exists at the intersection of social and climate injustice. Individuals with serious illness living in LMICs have the highest burden of health-related suffering globally. In fact, more than 61 million people experience serious health-related suffering (SHS) each year that is amenable to palliative care. Despite this well-documented burden of SHS, an estimated 88-90% of palliative care need is unmet, the majority in LMICs. To equitably address suffering at individual, population, and planetary levels in LMICs, a palliative justice approach is crucial. The interplay of human and planetary suffering requires that current planetary health recommendations be expanded to incorporate a whole-person and whole-people perspective that recognizes the need for environmentally conscious and community-based research and policy initiatives. Conversely, palliative care efforts should incorporate planetary health considerations to ensure sustainability in capacity building and service provision. In sum, the optimal health of the planet will remain elusive until we can holistically recognize the value of relieving all suffering due to life-limiting conditions, as well as the value in preserving the natural resources of countries in which all people are born, live, age, suffer, die, and grieve.

Early palliative care in newly diagnosed cancer in Ethiopia: feasibility randomised controlled trial and cost analysis.

OBJECTIVES: Globally, cancer deaths are rising. In low-and-middle-income countries, there is a gap in access to palliative care (PC). We designed a feasibility trial to study the initiation of early PC in patients with cancer in Addis Ababa, Ethiopia. METHODS: A randomised controlled trial (RCT) of standard cancer care versus standard cancer care plus in-home PC was conducted. Follow-up was at 8 and 12 weeks. Primary outcomes were: (1) feasibility, (2) patient-reported PC outcomes (African Palliative Care Association Palliative Outcome Scale (APCA POS)), and (3) costs. RESULTS: Of 95 adults randomised (mean age 49.5 years; 66% female), 27 completed 3 study visits. Of these, 89% had stage III or IV disease. Recruitment was feasible, but attrition was high. APCA POS use was feasible, with significant within-arm improvements: 24% versus 18% reduction (p<0.0002, p<0.0025) in PC versus standard care, respectively. Standard care subjects reported higher out-of-pocket payments (5810 Ethiopian birr) (ETB) and lost wages of informal caregivers (74 900 ETB), multiple times an average Ethiopian salary (3696 ETB). CONCLUSION: It is feasible to conduct an RCT of early PC for patients with cancer in Ethiopia. Retention was the biggest challenge. This study revealed opportunities to improve care, and important feasibility results to inform future, larger scale PC research in Ethiopia and beyond.

Towards a global One Health index: a potential assessment tool for One Health performance.

BACKGROUND: A One Health approach has been increasingly mainstreamed by the international community, as it provides for holistic thinking in recognizing the close links and inter-dependence of the health of humans, animals and the environment. However, the dearth of real-world evidence has hampered application of a One Health approach in shaping policies and practice. This study proposes the development of a potential evaluation tool for One Health performance, in order to contribute to the scientific measurement of One Health approach and the identification of gaps where One Health capacity building is most urgently needed. METHODS: We describe five steps towards a global One Health index (GOHI), including (i) framework formulation; (ii) indicator selection; (iii) database building; (iv) weight determination; and (v) GOHI scores calculation. A cell-like framework for GOHI is proposed, which comprises an external drivers index (EDI), an intrinsic drivers index (IDI) and a core drivers index (CDI). We construct the indicator scheme for GOHI based on this framework after multiple rounds of panel discussions with our expert advisory committee. A fuzzy analytical hierarchy process is adopted to determine the weights for each of the indicators. RESULTS: The weighted indicator scheme of GOHI comprises three first-level indicators, 13 second-level indicators, and 57 third-level indicators. According to the pilot analysis based on the data from more than 200 countries/territories the GOHI scores overall are far from ideal (the highest score of 65.0 out of a maximum score of 100), and we found considerable variations among different countries/territories (31.8-65.0). The results from the pilot analysis are consistent with the results from a literature review, which suggests that a GOHI as a potential tool for the assessment of One Health performance might be feasible. CONCLUSIONS: GOHI-subject to rigorous validation-would represent the world's first evaluation tool that constructs the conceptual framework from a holistic perspective of One Health. Future application of GOHI might promote a common understanding of a strong One Health approach and provide reference for promoting effective measures to strengthen One Health capacity building. With further adaptations under various scenarios, GOHI, along with its technical protocols and databases, will be updated regularly to address current technical limitations, and capture new knowledge.

Illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh: A cross-sectional study.

BACKGROUND: Despite recognition that palliative care is an essential component of any humanitarian response, serious illness-related suffering continues to be pervasive in these settings. There is very limited evidence about the need for palliative care and symptom relief to guide the implementation of programs to alleviate the burden of serious illness-related suffering in these settings. A basic package of essential medications and supplies can provide pain relief and palliative care; however, the practical availability of these items has not been assessed. This study aimed to describe the illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh. METHODS AND FINDINGS: Between November 20 and 24, 2017, we conducted a cross-sectional study of individuals with serious health problems (n = 156, 53% male) and caregivers (n = 155, 69% female) living in Rohingya refugee camps in Bangladesh, using convenience sampling to recruit participants at the community level (i.e., going house to house to identify eligible individuals). The serious health problems, recent healthcare experiences, need for medications and medical supplies, and basic needs of participants were explored through interviews with trained Rohingya community members, using an interview guide that had been piloted with Rohingya individuals to ensure it reflected the specificities of their refugee experience and culture. The most common diagnoses were significant physical disabilities (n = 100, 64.1%), treatment-resistant tuberculosis (TB) (n = 32, 20.5%), cancer (n = 15, 9.6%), and HIV infection (n = 3, 1.9%). Many individuals with serious health problems were experiencing significant pain (62%, n = 96), and pain treatments were largely ineffective (70%, n = 58). The average age was 44.8 years (range 2-100 years) for those with serious health problems and 34.9 years (range 8-75 years) for caregivers. Caregivers reported providing an average of 13.8 hours of care per day. Sleep difficulties (87.1%, n = 108), lack of appetite (58.1%, n = 72), and lack of pleasure in life (53.2%, n = 66) were the most commonly reported problems related to the caregiving role. The main limitations of this study were the use of convenience sampling and closed-ended interview questioning. CONCLUSIONS: In this study we found that many individuals with serious health problems experienced significant physical, emotional, and social suffering due to a lack of access to pain and symptom relief and other essential components of palliative care. Humanitarian responses should develop and incorporate palliative care and symptom relief strategies that address the needs of all people with serious illness-related suffering and their caregivers.

Is palliative care cost-effective in low-income and middle-income countries? A mixed-methods systematic review.

INTRODUCTION: Of the 40 million people globally in need of palliative care (PC), just 14% receive it, predominantly in high-income countries. Within fragile health systems that lack PC, incurable illness is often marked by pain and suffering, as well as burdensome costs. In high-income settings, PC decreases healthcare utilisation, thus enhancing value. Similar cost-effectiveness models are lacking in low-income and middle-income countries and with them, the impetus and funding to expand PC delivery. METHODS: We conducted a systematic search of seven databases to gather evidence of the cost-effectiveness of PC in low-income and middle-income countries. We extracted and synthesised palliative outcomes and economic data from original research studies occurring in low-income and middle-income countries. This review adheres to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and includes a quality appraisal. RESULTS: Our search identified 10 eligible papers that included palliative and economic outcomes in low-income and middle-income countries. Four provided true cost-effectiveness analyses in comparing the costs of PC versus alternative care, with PC offering cost savings, favourable palliative outcomes and positive patient-reported and family-reported outcomes. CONCLUSIONS: Despite the small number of included studies, wide variety of study types and lack of high-quality studies, several patterns emerged: (1) low-cost PC delivery in low-income and middle-income countries is possible, (2) patient-reported outcomes are favourable and (3) PC is less costly than the alternative. This review highlights the extraordinary need for robust cost-effectiveness analysis of PC in low-income and middle-income countries in order to develop health economic models for the delivery of PC, direct resource allocation and guide healthcare policy for PC delivery in low-income and middle-income countries.

2018 International Consensus Statement on Golf and Health to guide action by people, policymakers and the golf industry.

Scientific and public interest relating to golf and health has increased recently. Players, potential players, the golf industry and facilities, and decision makers will benefit from a better understanding of how to realise potential health benefits and minimise health issues related to golf. We outline an International Consensus on Golf and Health. A systematic literature review informed the development of a survey. Utilising modified Delphi methods, an expert panel of 25 persons including public health and golf industry leaders, took part in serial surveys providing feedback on suggested items, and proposing new items. Predefined criteria for agreement determined whether each item was included within each survey round and in the final consensus. The working group identified 79 scientifically supportable statement items from literature review and discussions. Twenty-five experts (100%) completed all three rounds of surveys, rating each item, and suggesting modifications and/or new items for inclusion in subsequent surveys. After three rounds, 83 items achieved consensus with each with >75% agreement and <10% disagreement. These items are included in the final International Consensus on Golf and Health. The final consensus presented here can inform scientific knowledge, and action plans for (1) golfers and potential golfers, (2) golf facilities and the golf industry, and (3) policy and decision makers external to golf. These outputs, if widely adopted, will contribute to an improved understanding of golf and health, and aid these groups in making evidence-informed decisions to improve health and well-being.

Palliative Care in Rwanda: Aiming for Universal Access.

In 2011, Rwanda's Ministry of Health set a goal of universal access to palliative care by 2020. Toward this audacious egalitarian and humanitarian goal, the Ministry of Health worked with partners to develop palliative care policies and a strategic plan, secure adequate supplies of opioid for the country, initiate palliative care training programs, and begin studying a model for integrating coordinated palliative care into the public health care system at all levels. It also initiated training of a new cadre of home-based care practitioners to provide palliative care in the home. Based on these developments, the goal appears within reach.

Improving care for people with heart failure in Uganda: serial in-depth interviews with patients' and their health care professionals.

BACKGROUND: The short prognosis of patients with advanced heart failure (HF) and the associated multidimensional distress as illustrated in literature from high income countries necessitates the integration of palliative care into the care of advanced HF patients to address these needs and improve their quality of life. These needs, which are subjective, have not been described from the patients' and health care professionals'(HPs) view point in the Ugandan setting, a low income country with a different socio-cultural context. This study aimed at bridging this gap in knowledge by eliciting patients' and HPs' views of HF patients' needs over the course of their illness to enable generalists, cardiologists and palliative care clinicians to develop guidelines to provide patient-centred realistic care in Uganda. METHODS: Serial qualitative in-depth interviews were conducted with HF patients who were purposively sampled and recruited in Mulago National Referral Hospital (MNRH) until thematic saturation. In-depth interviews were conducted at three time points with intervals of 3 month between interviews over the course of their illness in the hospital and their home context. One-off interviews were conducted with HPs that manage HF in MNRH. We used a grounded theory approach in data analysis. The Uganda National Council of science and technology approved the research. RESULTS: Forty-eight interviews were conducted with 21 patients and their carers and eight interviews with their HPs. Multidimensional needs including physical, psychological, social, spiritual and information needs were identified. These highlighted the underpinning need to have normal functioning, control, to cope and adapt to a changed life and to find meaning. Spiritual needs were less recognised by HPs than the other multidimensional needs. Information needs were commonly unmet. Patients and HPs suggested improvements in care that were congruent with the recommendations in chronic disease care and the six pillars of the WHO health systems strengthening approach. CONCLUSION: Management of HF in Uganda requires an approach that targets multidimensional needs, embraces multidisciplinary care and strengthens health systems which are all important tenets of palliative care.

A palliative care link nurse programme in Mulago Hospital, Uganda: an evaluation using mixed methods.

BACKGROUND: Integrating palliative care (PC) and empowering the health care workforce is essential to achieve universal access to PC services. In 2010, 46% of patients in Mulago Hospital, Uganda had a life limiting illness, of whom 96% had PC needs. The university/hospital specialist PC unit (Makerere/Mulago Palliative Care Unit -MPCU) implemented a link-nurse model to empower hospital nurses to provide generalist PC. Over two years, 27 link nurses were trained and mentored and 11 clinical protocols developed. The aim of the study was to evaluate the impact of the palliative care link nurse programme at Mulago Hospital METHODS: An evaluation approach utilising mixed methods was used integrating qualitative and quantitative data including: pre and post course assessment confidence ratings; course evaluation forms; audit of clinical guidelines availability; review of link-nurse activity sheets/action plans; review of MPCU patient documentation; Most Significant Change (MSC); individual and focus group interviews. RESULTS: A significant difference was seen in nurses' confidence after the training (p < 0.001). From July 2012 to December 2013, link nurses identified 2447 patients needing PC, of whom they cared for 2113 (86%) and referred 334 (14%) to MPCU. Clinical guidelines/protocols were utilised in 50% of wards. Main themes identified include: change in attitude; developing new skills and knowledge; change in relationships; improved outcomes of care, along with the challenges that they experienced in integrating PC. Since the start of the programme there has been an increase in PC patients seen at the hospital (611 in 2011 to 1788 in 2013). CONCLUSION: The link-nurse programme is a practical model for integrating PC into generalist services. Recommendations have been made for ongoing development and expansion of the programme as an effective health systems strengthening approach in similar healthcare contexts, as well as the improvement in medical and nursing education.

Implementing a Palliative Care Nurse Leadership Fellowship Program in Uganda.

Global oncology and palliative care needs are increasing faster than the available capacity to meet these needs. This is particularly marked in sub-Saharan Africa, where healthcare capacity and systems are limited and resources are stretched. Uganda, a country of 35.6 million people in eastern Africa, faces the challenges of a high burden of communicable disease and a rising number of cases of non-communicable disease, including cancer. The vast majority of patients in Uganda are diagnosed with cancer too late for curative treatment to be an option because of factors like poor access to healthcare facilities, a lack of health education, poverty, and delays resulting from seeking local herbal or other traditional remedies. This article describes an innovative model of nurse leadership training in Uganda to improve the delivery of palliative care. The authors believe this model can be applicable to other low- and middle-income countries, where health resources are constrained and care needs are great.
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The effectiveness of mHealth interventions for maternal, newborn and child health in low- and middle-income countries: Protocol for a systematic review and meta-analysis.

INTRODUCTION: Rates of maternal, newborn and child (MNCH) mortality and morbidity are vastly greater in low- than in high-income countries and represent a major source of global health inequity. A host of systemic, economic, geopolitical and sociocultural factors have been implicated. Mobile information and communication technologies hold potential to ameliorate several of these challenges by supporting coordinated and evidence-based care, facilitating community based health services and enabling citizens to access health information and support. mHealth has attracted considerable attention as a means of supporting maternal, newborn and child health in developing countries and research to assess the impacts of mHealth interventions is increasing. While a number of expert reviews have attempted to summarise this literature, there remains a need for a fully systematic review employing gold standard methods of evidence capture, critical appraisal and meta-analysis, in order to comprehensively map, quality assess and synthesise this body of knowledge. OBJECTIVES: To undertake a systematic review and meta-analysis of studies evaluating the impacts of mobile technology-enabled interventions designed to support maternal, newborn and child health in low- and middle-income countries. METHODS: 16 online international electronic databases of published scientific abstracts and citations will be interrogated for the period 1990 to 2014 (no language restrictions) in order to identify relevant studies. Ongoing/unpublished studies will be identified through searching international trial repositories and consulting experts in the field. Study quality will be assessed using appropriate critical appraisal tools; including the Cochrane Handbook's 7 evaluation domains for randomised and clinical trials, the Cochrane Effective Practice and Organisation of Care (EPOC) guidelines for other comparative study types, and the Effective Public Health Practice Project (EPHPP) quality assessment tools for observational studies. Blinded assessment by at least two reviewers, with arbitration by a third if necessary, will ensure rigour. Meta-analysis will be undertaken, where possible, using a random-effects model. Sensitivity and subgroup analyses will be reported. Publication bias will be assessed. ETHICS AND DISSEMINATION: Ethical approval is not required. RESULTS: These will be presented in one manuscript. The review protocol is registered with the International Prospective Register for Systematic Reviews (PROSPERO) CRD42014008939.

The cessation in pregnancy incentives trial (CPIT): study protocol for a randomized controlled trial.

BACKGROUND: Seventy percent of women in Scotland have at least one baby, making pregnancy an opportunity to help most young women quit smoking before their own health is irreparably compromised. By quitting during pregnancy their infants will be protected from miscarriage and still birth as well as low birth weight, asthma, attention deficit disorder and adult cardiovascular disease. In the UK, the NICE guidelines: 'How to stop smoking in pregnancy and following childbirth' (June 2010) highlighted that little evidence exists in the literature to confirm the efficacy of financial incentives to help pregnant smokers to quit. Its first research recommendation was to determine: Within a UK context, are incentives an acceptable, effective and cost-effective way to help pregnant women who smoke to quit? DESIGN AND METHODS: This study is a phase II exploratory individually randomized controlled trial comparing standard care for pregnant smokers with standard care plus the additional offer of financial voucher incentives to engage with specialist cessation services and/or to quit smoking during pregnancy.Participants (n = 600) will be pregnant smokers identified at maternity booking who, when contacted by specialist cessation services, agree to having their details passed to the NHS Smokefree Pregnancy Study Helpline to discuss the trial. The NHS Smokefree Pregnancy Study Helpline will be responsible for telephone consent and follow-up in late pregnancy. The primary outcome will be self reported smoking in late pregnancy verified by cotinine measurement. An economic evaluation will refine cost data collection and assess potential cost-effectiveness while qualitative research interviews with clients and health professionals will assess the level of acceptance of this form of incentive payment. The research questions are: What is the likely therapeutic efficacy? Are incentives potentially cost-effective? Is individual randomization an efficient trial design without introducing outcome bias? Can incentives be introduced in a way that is feasible and acceptable? DISCUSSION: This phase II trial will establish a workable design to reduce the risks associated with a future definitive phase III multicenter randomized controlled trial and establish a framework to assess the costs and benefits of financial incentives to help pregnant smokers to quit. TRIAL REGISTRATION: Current Controlled Trials ISRCTN87508788.

Palliative care in Africa since 2005: good progress, but much further to go.

There has been rapid progress in palliative care in Africa since the World Health Assembly in 2005 which identified palliative care as an urgent humanitarian need. Palliative care is now recognised as a basic human right, and momentum has gathered to translate this into action. From being significantly present in only five countries in 2004, palliative care is now delivered in nearly 50% of African countries. Even so, still less than 5% of people in need currently receive it, and with an estimated 300% increase in the need for palliative care for people with non-communicable diseases over the next 20 years, and with those living with HIV needing more prolonged support, the demand for palliative care will continue to outpace supply. African countries adopting a public health approach and networking together through palliative care associations are beginning to embed and integrate palliative care into health systems and communities. Current challenges are to increase coverage while maintaining quality, to develop dynamic and flexible responses to the changing illness patterns in Africa, and to counter false beliefs. Resourcefulness and harnessing new technologies such as mobile phones while respecting cultural traditions, may be the way forward. The authors review recent progress in policy, service provision and training initiatives in Africa, illustrate the current situation at grass roots level from a recent evaluation of programmes in Kenya, Malawi and Uganda, analyse the current urgent challenges and suggest some ways ahead.