Abstract
IntroductionCoverage 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.MethodsWe 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 delivery of palliative care.ResultsOur 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.ConclusionWe identified design and practical challenges to optimise 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.
Highlights
Coverage of palliative care in low and middle-income countries is very limited, and global projections suggest large increases in need
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
Unmet data and information needs were identified across patients, caregivers, health professionals and policymakers in Nigeria, Uganda and Zimbabwe, with digital technology viewed as an acceptable approach to enhancing existing provision of palliative care 15 key requirements of digital technologies were synthesised from across stakeholder groups that can be used to guide the future development and evaluation of digital technology approaches in palliative cancer care
Summary
Coverage of palliative care in low and middle-income countries is very limited, and global projections suggest large increases in need. It is estimated that 80% of cancers in the SSA are incurable and advanced at the time of detection and diagnosis due to late clinical presentation and poor access to prevention and treatment facilities [5]. For those with cancer, palliative care aims to prevent and relieve physical, emotional, social, and spiritual suffering potentially at any stage of the disease [6]. UHC requires that all individuals and communities receive the health services they need without suffering financial hardship (affordable services) This includes the full spectrum of essential, quality health services, from health promotion, prevention, treatment, rehabilitation, and palliative care. Palliative care remains a critical and essential component of care, and strong body of evidence demonstrates its effectiveness and cost-effectiveness [12, 13, 16]
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