Project

Understanding data and information needs for palliative cancer care to target mobile phone-based intervention development in Uganda and Zimbabwe

Goal: This project, funded by the UK Medical Research Council, will support engagement with key stakeholders in Uganda and Zimbabwe to define optimal mechanisms through which patient-level data, captured via mHealth (i.e. the practice of medicine and public health supported by mobile devices), can be used in the development of palliative cancer care in sub-Saharan Africa. This project will provide essential preliminary data to guide the development of mHealth approaches which can be piloted and evaluated through future substantive grant applications.

The objectives of the project are to:

1. Establish a consortium of academic researchers (from Uganda, the UK and Zimbabwe), non-governmental organisations, palliative care providers, policymakers and mHealth development and implementation expertise, to catalyse mHealth research and generate evidence that can guide palliative cancer care development across sub-Saharan Africa
2. Understand the acceptability and optimal implementation of patient-level data collection (e.g. patient-reported outcome measures and patient-reported experience measures) using mHealth approaches in Uganda and Zimbabwe through patient and caregiver engagement
3. Determine information needs and pathways for leveraging evidence generated from mHealth approaches in service development in Uganda and Zimbabwe through health professional and service manager engagement
4. Determine information needs and pathways for leveraging evidence generated from mHealth approaches in policymaking in Uganda and Zimbabwe through policymaker engagement
5. Define the mechanisms for implementation of mHealth approaches to support development of palliative cancer care in SSA

These activities will provide the preliminary data needed to develop mHealth approaches and build the evidence base underpinning current palliative care provision for patients with cancer and their caregivers in Uganda and Zimbabwe initially. At a service delivery level, mHealth approaches can support extension of limited palliative care provision, particularly for patients based in remote regions where mobile networks are available, enabling greater access to palliative care services for patients with cancer currently experiencing advanced disease without any intervention. Alongside increasing access to the many people with cancer requiring palliative care, mHealth approaches present opportunities to augment existing palliative care provision across hospital and community settings. For example, routine monitoring and assessment of patients supported by mHealth approaches can reduce the cost and time burden of travel to health facilities for patients and increase information available to health professionals to inform their clinical decision making. Whilst the primary focus of the proposal is the development of data and information sharing mediated by mHealth approaches, we will also discuss alternative approaches to gathering patient-level data with patients and caregivers that do not involve mobile phones. This will support a broader understanding of the parameters of mobile phones as tools for developing the evidence base for palliative cancer care and follow-on funding will explore multiple modes of gathering and sharing patient-level data to ensure wide representation of service users across sub-Saharan Africa.

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Project log

Matthew Allsop
added a research item
PURPOSE: The ability to develop and evaluate approaches to the management of advanced cancer in sub-Saharan Africa is limited by the lack of local, reliable and valid data to ensure that practice is evidence-based, replicable and reflects the needs of the population served. METHODS: A secondary qualitative analysis of in-depth interviews with 59 health professionals delivering palliative cancer care in Nigeria, Uganda and Zimbabwe were conducted to determine the use and needs for data and information for patient care and service delivery. Framework analysis was used, informed by a conceptual model for data use in low and middle-income countries. RESULTS: Three meta-themes include: i) Current practice in data gathering and use; ii) Gaps for capturing, storing information and supporting communication, and; (3) Needs and opportunities for data use. Deficits in current data access and use were identified, alongside targets for improving the quality, accessibility and utility of data to inform the development of palliative cancer care. CONCLUSIONS: The availability and use of relevant and reliable data relating to the current provision of palliative care are requisite for the contextually appropriate and effective development of health services. The requirements and constraints articulated by participants can guide future development and optimisation of digital health approaches for palliative cancer care in the participating countries, with relevance to the wider sub-Saharan Africa region.
Matthew Allsop
added a research item
CONTEXT: A challenge facing the provision of palliative care in sub-Saharan Africa (sSA) 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-centred and responsive services. Objectives: To explore the experiences and expectations of palliative care for people living with advanced cancer in Nigeria, Uganda, and Zimbabwe. METHODS: A secondary qualitative analysis of in-depth interviews with 62 people with advanced cancer in Nigeria, Uganda, and Zimbabwe. A 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). RESULTS: 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 endeavours 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. CONCLUSION: 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 and findings can inform evolving notions of patient-centred care for serious illnesses in the participating countries.
Matthew Allsop
added a research item
PURPOSE: Cancer patients in Zimbabwe typically access health services with advanced disease, limiting treatment choices and lessening the likelihood of positive treatment outcomes. We outline experiences of patients with advanced cancer prior to interaction with palliative care services to identify targets for future intervention development to enhance care delivery in Zimbabwe. PATIENT AND METHODS: Participants were purposively sampled adult patients with advanced cancer. We adopted a thematic approach to guide a qualitative secondary data analysis exploring factors influencing support sought by participants, external factors influencing decision making across the disease trajectory, and the process for seeking and accessing palliative care. RESULTS: Participants reported fragmented and uncoordinated care, from initial symptom experience and throughout disease progression. A recurring notion of disjuncture was present through participants’ experiences of gaps, breaks and discontinuity across the disease trajectory. Each step had a beginning and end without clear routes for transition with movement between steps as a result of happenstance or informal encounters. CONCLUSION: Targets for intervention development at the patient and family level exist that may reduce the disjuncture currently experienced between need and care provision. A holistic response that incorporates engagement with policy actors is critical to addressing prominent financial constraints for patients.
Matthew Allsop
added a research item
INTRODUCTION: In sub-Saharan Africa (SSA) cancer care is characterised by limited funding, restricted access to curative therapies and 80% of cancers advanced at the time of detection and diagnosis. Palliative care need in SSA is significant, however, most countries in the region have limited provision. mHealth (i.e. medical and public health practice supported by mobile devices) is an approach that may support increased access and communication with palliative care services. However, there is a limited understanding of health professionals’ views and perceptions on its use in the delivery of cancer care. METHODS: To understand health professionals’ views and perceptions of the use of mHealth as part of palliative care delivery. Transcripts from interviews of health professionals in Uganda (n=20) were analysed thematically. RESULTS: The majority of participants were female (75%, n=15). Average years of experience was 15.8 as healthcare providers and 8.2 years as palliative care providers. Four overarching themes were derived from the analysis: i) current use of mHealth in palliative cancer care provision; ii) advantages of using mHealth in palliative cancer care; iii) challenges to providing palliative cancer care using mHealth, and; iv) preferences for mHealth use in palliative cancer care. CONCLUSIONS: mHealth is considered advantageous for the provision of palliative cancer care. There is a need to adapt training to improve the competencies of palliative care professionals in the delivery of care that leverages digital technologies. The development of mHealth initiatives needs to consider how best to maintain patient privacy and ensure inequities in access to care are not worsened.
Matthew Allsop
added a research item
BACKGROUND: Despite regional efforts to address concerns, the burden of advanced cancer in Africa needs urgent attention. Widespread issues include late symptom presentation, inaccessibility of palliative care services, limited resources, poor data quality, the disparity in data availability, and lack of stakeholder engagement. One way of helping to address these issues is by meeting the data and information needs of policymakers in palliative cancer care. AIMS: To explore the views of policymakers regarding data availability, data gaps and preferred data formats to support policy and decision making for palliative cancer care in Nigeria, Uganda and Zimbabwe. METHODS: A secondary analysis of interview data collected as part of a cross-sectional qualitative study that aimed to explore the data and information needs of patients, policymakers and caregivers in Nigeria, Uganda and Zimbabwe. Framework analysis, guided by the MEASURE evaluation framework, was used to qualitatively analyse the data. RESULTS: Twenty-six policymakers were recruited. The policymakers data and information concerns are aligned to the MEASURE evaluation framework of data and information use and include; assessing and improving data use (e.g. low prioritisation of cancer); identifying and engaging the data user (e.g. data processes); improving data quality (e.g. manual data collection processes); improving data availability (e.g. data accessibility); identifying information needs (e.g. what is ‘need to know’?); capacity building in core competencies (e.g. skills gaps); strengthening organisational data demand and use (e.g. policy frameworks); monitoring, evaluating and communication of data demand and use (e.g. trustworthiness of data). CONCLUSIONS: We present evidence of data sources, challenges to their access and use, guidance on data needs for policymakers, and opportunities for better engagement between data producers, brokers and users. This framework of evidence should inform the development of strategies to improve data access and use for policy and decision making to improve palliative cancer services.
Matthew Allsop
added a research item
INTRODUCTION: Coverage of palliative care in low- and middle-income countries is very limited, and global projections suggest large increases in need. Novel approaches are needed to achieve the palliative care goals of Universal Health Coverage. This study aimed to identify stakeholders’ data and information needs and the role of digital technologies to improve access to and delivery of palliative care for people with advanced cancer in Nigeria, Uganda and Zimbabwe. METHODS: We conducted a multi-country cross-sectional qualitative study in sub-Saharan Africa. In-depth qualitative stakeholder interviews were conducted with N=195 participants across Nigeria, Uganda and Zimbabwe (advanced cancer patients n=62, informal caregivers n=48, health care professionals n=59, policymakers n=26). Verbatim transcripts were subjected to deductive and inductive framework analysis to identify stakeholders needs and their preferences for digital technology in supporting the capture, transfer and use of patient-level data to improve the delivery of palliative care. RESULTS: Our coding framework identified four main themes: i) acceptability of digital technology; ii) current context of technology use; iii) current vision for digital technology to support health and palliative care, and; iv) digital technologies for the generation, reporting and receipt of data. Digital heath is an acceptable approach, stakeholders support the use of secure data systems, and patients welcome improved communication with providers. There are varying preferences for how and when digital technologies should be utilised as part of palliative cancer care provision, including for increasing timely patient access to trained palliative care providers and the triaging of contact from patients. CONCLUSION: We identified design and practical challenges to optimise the potential for success in developing digital health approaches to improve access to and enhance the delivery of palliative cancer care in Nigeria, Uganda and Zimbabwe. Synthesis of findings identified 15 requirements to guide the development of digital health approaches that can support the attainment of global health palliative care policy goals.
Matthew Allsop
added a research item
Background Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions. Aim We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe. Design Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used. Setting/participants Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries. Results A total of 48 transcripts were analyzed. Mean age was 37 (range 19–75) with equal numbers of men and women. Five themes emerged from the data: (1) caregivers are coordinators of emotional, practical, and health service matters; (2) caregiving comes at a personal social and financial cost; (3) practical and emotional support received and required; (4) experience of interacting and liaising with palliative care services; and (5) barriers and recommendations relating to the involvement of palliative care. Conclusions The role of informal caregivers is multi-faceted, with participants reporting taking care of the majority of medical, physical, financial, and emotional needs of the care recipient, often in the face of sacrifices relating to employment, finances, and their own health and social life. Efforts to develop comprehensive cancer control plans in sub-Saharan Africa must take account of the increasing evidence of informal caregiver needs.
Matthew Allsop
added a research item
INTRODUCTION: Palliative care is a clinically and cost‐effective component of cancer services in SSA. Despite the significant need for palliative cancer care in SSA, coverage remains inadequate. The exploration of digital health approaches could support increases in the quality and reach of palliative cancer care services in SSA. However, there is currently a lack of any theoretical underpinning or data to understand stakeholder drivers for digital health components in this context. This project addresses this gap through engaging with key stakeholders to determine data and information needs that could be supported through digital health interventions. METHODS AND ANALYSIS: This is a multi-country, cross-sectional, qualitative study conducted in Nigeria, Uganda and Zimbabwe. In-depth interviews will be conducted with patients with advanced cancer (n = 20), caregivers (n = 15), health professionals (n = 20) and policymakers (n = 10) in each of the three participating countries. Data from a total of 195 interviews will be transcribed verbatim and translated into English before being imported into NVivo software for deductive framework analysis. The analysis will seek to understand the acceptability and define mechanisms of patient-level data capture and usage via digital technologies. ETHICS AND DISSEMINATION: Ethics approvals have been obtained from the Institutional Review Boards of University of Leeds (Ref: MREC 18-032), Research Council of Zimbabwe (Ref: 03507), Medical Research Council of Zimbabwe (Ref: MRCZ/A/2421), Uganda Cancer Institute (Ref: 19-2018), Uganda National Council of Science and Technology (Ref: HS325ES), and College of Medicine University of Lagos (Ref: HREC/15/04/2015). The project seeks to determine optimal mechanisms for the design and development of subsequent digital health interventions to support the development, access and delivery of palliative cancer care in SSA. Dissemination of these findings will occur through newsletters and press-releases, conference presentations, peer-reviewed journals and social media. TRIAL REGISTRATION NUMBER: ISRCTN15727711
Emmanuel Luyirika
added 8 research items
Background: Although there are global studies on palliative care development, none report region-specific indicators of development for each country in Africa. We aimed to develop and deploy a set of indicators to measure the current state of palliative care development in Africa according to WHO's Public Health Strategy for integrating palliative care, including policies, availability and access to medicines, education, and service provision. Methods: Qualitative interviews were conducted with 16 country experts between March and August, 2016. From those interviews, 367 indicators were derived, 130 after exclusion criteria and content analysis were performed. The country experts rated the indicators for validity and feasibility, a 14-member international committee of experts participated in a two-round modified UCLA-RAND Delphi consensus, and the coauthors ranked the indicators during November–December 2016. The final 19 indicators were further defined and sent to 66 key country informants from 51 African countries during January–March 2017. Findings: Surveys were received from 48 countries. Uganda, South Africa, and Kenya have the highest number of specialised hospice and palliative care services (71% of identified palliative care services); 19% (9/48) have no identified hospice and palliative care services. 22% (12/48) indicated having stand-alone palliative care policies, and 42% (20/48) reported having a dedicated person for palliative care in the Ministry. Zambia, Uganda, South Africa, Kenya, Ghana, and Egypt reported some official form of physician accreditation. Opioid consumption per capita was low (75% of countries had
Background Access to palliative care (PC) in Uganda has been hampered by the lack of prescribers. Thus PC care trained nurses have been able to prescribe since 2004, however, no full scale evaluation had been undertaken, despite the fact that PC stakeholders are advocating for nurse prescribing in other countries. Thus an evaluation was undertaken to determine the effectiveness of PC nurse prescribing in Uganda. Methodology The mixed methods evaluation was undertaken in three parts: • Preparation of the nurses for the role; • Assessing and managing pain & symptoms; • An appraisal of the system in which the nrses are working. Ethical approval was gained prior to the evaluation commencing. Results • Training: the curriculum prepares the nurses well, however, a few adaptions are recommended to strengthen it further. Themes identified from 18 interviews included: the training itself, supervision and mentorship, compentency, and beliefs. • Assessing and managing pain: 22 nurses were recruited to care for 20 PC patients each, visiting them on at least 2 occassions, assessing and managing their pain and other symptoms, and utilising the APCA POS. Analysis demonstrates nurses are able to assess and manage pain, giving appropriate mediciations and reassessing. • The appraisal in 10 districts, showed nurses are working in a system which can impact negatively on care provision e.g. stck–outs of analgesics, limited understanding of PC generally: and many myths exist re the use of morphine and provision of PC. Results Trained palliative care nurses can assess and manage patients pain, prescribing morphine and associated medications appropriately. Whilst challenges exist, recommendations are made to improve the system, this evaluation has clearly shown the benefit and safety of nurse prescribing for PC in Uganda. This study has important implications for the global debate on issues of access to oral morphine and task shifting.Conclusion
Background and context: The African Palliative Care Association (APCA) is a pan-African palliative care organization hosted in Uganda but supporting initiatives to integrate palliative care into national health systems across Africa. Uganda hosts one of the oldest cancer units in Africa and also reconstitutes its own oral liquid morphine to reduce barriers and cost of access to pain control for patients. Aim: The aim of this effort is to expose government officials and other NGOs from other African countries to best practices in oral morphine manufacture, distribution and access to controlled medicines for pain control in cancer and other conditions with a view to benchmark and establish similar or better systems. Strategy/Tactics: APCA working with its funders in consultation with the Ugandan Ministry of Health and Hospice Africa Uganda, facilitates other African ministries of health delegations to conduct study visits in Uganda to benchmark the oral morphine reconstitution, the supply chain mechanisms for its distribution to patients in both public and private hospitals and at home. Program/Policy process: APCA identifies countries with morphine access challenges and makes arrangements for key personnel in those countries in ministries of health, medicines control authority, central medicines stores and national palliative care associations where they exist to spend a study period in Uganda. While in Uganda, the delegations visit the oral morphine manufacturing facility, Hospice Africa Uganda, the Ministry of Health, national medical stores, National Drug Authority, joint medical stores and some of the palliative care providers and training facilities. Once the period with the various stakeholders in the country is completed, the visiting teams draw up plans for implementation and identify required technical assistance from APCA. The costing and sources of funding are identified including contribution from the government in need and then activities are implemented. Outcomes: As a result of this South-to-South approach, Uganda has hosted delegations from 14 African countries. At one instance, it involved the Minister Of Health from Swaziland heading a delegation to Uganda while others sent other high level delegates to the peer learning and bench marking. All these countries have taken steps to establish access to oral liquid morphine as well as policy and capacity building activities for their staff. Some of the countries like Malawi and Swaziland are already having morphine reconstitution and national palliative care policies while others such as Rwanda and Botswana are in the process of changing to the same system. Cancer and palliative care related activities are also being implemented in some of countries. Some countries have graduated to host others like Uganda does. What was learned: The South-to-South learning and bench marking visits are very practical in Africa and have triggered palliative care initiatives at national level.
Matthew Allsop
added a research item
Background: It is essential to understand how existing services are supporting patients with advanced cancer through assessing their experiences and outcomes. Patient-level data capture and use can achieve this, ensuring practice is evidence-based, replicable, and reflects the needs of the population served. Gathering these data is requisite to achieving universal health coverage by understanding current palliative cancer care provision and its impact. Methods: A multi-country, cross-sectional, exploratory study with qualitative research methods. In-depth interviews with key stakeholders alongside formation of a consortium of researchers, relevant policy representatives from ministries of health, palliative care associations, civil society, patient advocates, and digital health specialists to identify opportunities for digital health capacity development in palliative cancer care and routes to uptake and translation of findings from the project. Key findings: Analysis of findings from stakeholder engagement will seek to identify and understand mechanisms by which digital health approaches can facilitate data demand and use. Findings will determine multiple immediate or underlying factors relating to evidence generation and data use that have greatest scope for change through digital health approaches. Three factors to target with digital health approaches will be selected and subsequent programme theory developed, underpinned by empirical evidence to support causal links and formalised theories of behaviour change.
Matthew Allsop
added a project goal
This project, funded by the UK Medical Research Council, will support engagement with key stakeholders in Uganda and Zimbabwe to define optimal mechanisms through which patient-level data, captured via mHealth (i.e. the practice of medicine and public health supported by mobile devices), can be used in the development of palliative cancer care in sub-Saharan Africa. This project will provide essential preliminary data to guide the development of mHealth approaches which can be piloted and evaluated through future substantive grant applications.
The objectives of the project are to:
1. Establish a consortium of academic researchers (from Uganda, the UK and Zimbabwe), non-governmental organisations, palliative care providers, policymakers and mHealth development and implementation expertise, to catalyse mHealth research and generate evidence that can guide palliative cancer care development across sub-Saharan Africa
2. Understand the acceptability and optimal implementation of patient-level data collection (e.g. patient-reported outcome measures and patient-reported experience measures) using mHealth approaches in Uganda and Zimbabwe through patient and caregiver engagement
3. Determine information needs and pathways for leveraging evidence generated from mHealth approaches in service development in Uganda and Zimbabwe through health professional and service manager engagement
4. Determine information needs and pathways for leveraging evidence generated from mHealth approaches in policymaking in Uganda and Zimbabwe through policymaker engagement
5. Define the mechanisms for implementation of mHealth approaches to support development of palliative cancer care in SSA
These activities will provide the preliminary data needed to develop mHealth approaches and build the evidence base underpinning current palliative care provision for patients with cancer and their caregivers in Uganda and Zimbabwe initially. At a service delivery level, mHealth approaches can support extension of limited palliative care provision, particularly for patients based in remote regions where mobile networks are available, enabling greater access to palliative care services for patients with cancer currently experiencing advanced disease without any intervention. Alongside increasing access to the many people with cancer requiring palliative care, mHealth approaches present opportunities to augment existing palliative care provision across hospital and community settings. For example, routine monitoring and assessment of patients supported by mHealth approaches can reduce the cost and time burden of travel to health facilities for patients and increase information available to health professionals to inform their clinical decision making. Whilst the primary focus of the proposal is the development of data and information sharing mediated by mHealth approaches, we will also discuss alternative approaches to gathering patient-level data with patients and caregivers that do not involve mobile phones. This will support a broader understanding of the parameters of mobile phones as tools for developing the evidence base for palliative cancer care and follow-on funding will explore multiple modes of gathering and sharing patient-level data to ensure wide representation of service users across sub-Saharan Africa.