Browsing by Author "Allsop, Matthew J."

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    Data and Information Needs of Policymakers for Palliative Cancer Care: A Multi-Country Qualitative Study
    (BMC Medical Informatics and Decision Makin, 2021) Namisango, Eve; Ramsey, Lauren; Allsop, Matthew J.
    Despite regional efforts to address concerns regarding the burden of advanced cancer in Africa, urgent attention is still required. Widespread issues include late symptom presentation, inaccessibility of palliative care services, limited resources, poor data quality, disparity in data availability, and lack of stakeholder engagement. One way of helping to address these issues is by understanding and meeting the data and information needs of policymakers in palliative cancer care.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.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.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. the accessibility of data); 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 communicating of data demand and use (e.g. trustworthiness of data).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 in participating countries with relevance to the wider region.
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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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    Strengthening Pharmaceutical Systems for Palliative Care Services in Resource Limited Settings: Piloting A mHealth Application across a Rural and Urban Setting in Uganda
    (BMC palliative care, 2016) Namisango, Eve; Ntege, Chris; Luyirika, Emmanuel B. K.; Kiyange, Fatia; Allsop, Matthew J.
    Medicine availability is improving in sub-Saharan Africa for palliative care services. There is a need to develop strong and sustainable pharmaceutical systems to enhance the proper management of palliative care medicines, some of which are controlled. One approach to addressing these needs is the use of mobile technology to support data capture, storage and retrieval. Utilizing mobile technology in healthcare (mHealth) has recently been highlighted as an approach to enhancing palliative care services but development is at an early stage.An electronic application was implemented as part of palliative care services at two settings in Uganda; a rural hospital and an urban hospice. Measures of the completeness of data capture, time efficiency of activities and medicines stock and waste management were taken pre- and post-implementation to identify changes to practice arising from the introduction of the application.Improvements in all measures were identified at both sites. The application supported the registration and management of 455 patients and a total of 565 consultations. Improvements in both time efficiency and medicines management were noted. Time taken to collect and report pharmaceuticals data was reduced from 7 days to 30 min and 10 days to 1 h at the urban hospice and rural hospital respectively. Stock expiration reduced from 3 to 0.5 % at the urban hospice and from 58 to 0 % at the rural hospital. Additional observations relating to the use of the application across the two sites are reported.A mHealth approach adopted in this study was shown to improve existing processes for patient record management, pharmacy forecasting and supply planning, procurement, and distribution of essential health commodities for palliative care services. An important next step will be to identify where and how such mHealth approaches can be implemented more widely to improve pharmaceutical systems for palliative care services in resource limited settings.
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    A Survey of Mobile Phone Use in the Provision of Palliative Care Services in the African Region and Priorities for Future Development
    (Journal of Telemedicine and Telecare, 2019) Allsop, Matthew J.; Namisango, Eve; Powell, Richard A.
    Palliative care (PC) services in the African region need to adapt to manage rising numbers of patients with cancer or other life-limiting conditions. Mobile phone use in healthcare delivery (mHealth) is at an early stage of development for PC, but may provide new approaches to supporting patients regionally, particularly those with non-communicable diseases.We conducted an online survey of 51 PC providers across 21 countries in the African region to identify: (i) current mHealth use in PC service delivery; (ii) potential barriers to mHealth use; and (iii) provider priorities for research development.mHealth approaches were reported across 71.4% of services in which respondents were based. Barriers to mHealth research include patients not having access to phones, mobile network access, and limited access to expertise and hardware required for mHealth. Research priorities were identified which included exploring ways of incorporating mHealth into patient care and ensuring access and relevance of mHealth for patients and health professionals.mHealth approaches are present across PC services in the African region, but so too are barriers to their use. Further work is required to explore how existing mHealth activities might be further developed and aligned with priority areas for PC development. Crucially, user engagement that seeks to understand the preferences and priorities of patients with PC needs, their caregivers, and those involved in the provision of PC should remain central to these efforts.
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    Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcome
    (The Patient-Patient-Centered Outcomes Research, 2019) Namisango, Eve; Bristowe, Katherine; Allsop, Matthew J.; Abas, Melanie; Higginson, Irene J.; Downing, Julia; Harding, Richard
    The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes.This review aims to identify symptoms, concerns and outcomes that matter to children and young people (“young people”) with terminal illnesses and their families. Findings from the systematic review will inform the development of a relevant framework of health outcomes.This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources included PsycINFO, MEDLINE, Embase, CINAHL, OpenGrey, and Science Direct Journals, searched from 1 August 2016 to 30 July 2017. The study also incorporates consultations with experts in the field, citation searches via Scopus, and a hand search of reference lists of included studies.Of the 13,567 articles that were evaluated, 81 studies were included. Most of these studies (n = 68) were from high-income countries and foused on young people with cancer (n = 58). A total of 3236 young people, 2103 family carers, 108 families, and 901 healthcare providers were included in the studies. Young people did not contribute to data in 30% of studies. Themes on priority concerns are presented by the following domains and health outcomes: (1) physical (n = 62 studies), e.g., physical symptoms; (2) psychological (n = 65), e.g., worry; (3) psychosocial (n = 31), e.g., relationships; (4) existential (n = 37), e.g., existential loss; and (5) “other” (n = 39), e.g., information access.Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory; pediatric palliative care should not be limited to the end-of-life phase. A child–family-centered framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future research should address gaps identified across the literature (i.e., the involvement of young people in research, evidence for developing countries, and a focus on nonmalignant conditions.