Browsing by Author "Nabirye, Elizabeth"

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    The Role, Impact, and Support of Informal Caregivers in the Delivery of Palliative Care for Patients with Advanced Cancer: A Multi-Country Qualitative Study
    (Palliative medicine, 2021) Adejoh, Samuel Ojima; Boele, Florien; Akeju, David; Dandadzi, Adlight; Nabirye, Elizabeth; Namisango, Eve; Namukwaya, Elizabeth; Ebenso, Bassey; Nkhoma, Kennedy; Allsop, Matthew J.
    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.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.Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used.Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries.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.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.
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    Stakeholder Perspectives and Requirements to Guide the Development of Digital Technology for Palliative Cancer Services: A Multi-Country, Cross-Sectional, Qualitative Study in Nigeria, Uganda and Zimbabwe
    (BMC palliative care, 2021) Nkhoma, Kennedy Bashan; Ebenso, Bassey; Akeju, David; Nabirye, Elizabeth; Namukwaya, Elizabeth; Namisango, Eve
    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.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 delivery of palliative care.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.We 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.