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BMC Palliative Care
Published in: BMC Palliative Care 1/2021

01-12-2021 | Care | Research article

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

Authors: Kennedy Bashan Nkhoma, Bassey Ebenso, David Akeju, Samuel Adejoh, Michael Bennett, Mike Chirenje, Adlight Dandadzi, Elizabeth Nabirye, Elizabeth Namukwaya, Eve Namisango, Kehinde Okunade, Omolola Salako, Richard Harding, Matthew J. Allsop

Published in: BMC Palliative Care | Issue 1/2021

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Abstract

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 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 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.
Appendix
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Literature
1.
Sleeman KE, de Brito M, Etkind S, Nkhoma K, Guo P, Higginson IJ, et al. The escalating global burden of serious health-related suffering: projections to 2060 by world regions, age groups, and health conditions. Lancet Glob Health. 2019;7(7):e883–e92.PubMedPubMedCentralCrossRef
2.
Powell RA, Ali Z, Luyirika E, Harding R, Radbruch L, Mwangi-Powell FN. Out of the shadows: non-communicable diseases and palliative care in Africa. BMJ Support Palliat Care. 2017;7(2):128–32.PubMedCrossRef
3.
Powell RA, Mwangi-Powell FN, Radbruch L, Yamey G, Krakauer EL, Spence D, et al. Putting palliative care on the global health agenda. Lancet Oncol. 2015;16(2):131–3.PubMedCrossRef
4.
5.
Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin. 2018;68(6):394–424.PubMed
6.
7.
Lazenby M, Sebego M, Swart NC, Lopez L, Peterson K. Symptom burden and functional dependencies among Cancer patients in Botswana suggest a need for palliative care nursing. Cancer Nurs. 2016;39(1):E29–38.PubMedCrossRef
8.
O'Neil DS, Prigerson HG, Mmoledi K, Sobekwa M, Ratshikana-Moloko M, Tsitsi JM, et al. Informal caregiver challenges for advanced Cancer patients during end-of-life Care in Johannesburg, South Africa and distinctions based on place of death. J Pain Symptom Manag. 2018;56(1):98–106.CrossRef
9.
Knaul FM, Farmer PE, Krakauer EL, De Lima L, Bhadelia A, Jiang Kwete X, et al. Alleviating the access abyss in palliative care and pain relief; an imperative of universal health coverage: the lancet commission report. Lancet. 2018;391(10128):1391–454.PubMedCrossRef
10.
Gwyther L, Brennan F, Harding R. Advancing palliative care as a human right. J Pain Symptom Manag. 2009;38(5):767–74.CrossRef
11.
Lowther K, Selman L, Simms V, Gikaara N, Ahmed A, Ali Z, et al. Nurse-led palliative care for HIV-positive patients taking antiretroviral therapy in Kenya: a randomised controlled trial. Lancet HIV. 2015;2(8):e328–34.PubMedCrossRef
12.
Gomes B, Calanzani N, Higginson IJ. Benefits and costs of home palliative care compared with usual care for patients with advanced illness and their family caregivers. Jama. 2014;311(10):1060–1.PubMedCrossRef
13.
Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013;6:CD007760.
14.
Higginson IJ, Evans CJ. What is the evidence that palliative care teams improve outcomes for cancer patients and their families? Cancer J. 2010;16(5):423–35.PubMedCrossRef
15.
Desrosiers T, Cupido C, Pitout E, van Niekerk L, Badri M, Gwyther L, et al. A hospital-based palliative care service for patients with advanced organ failure in sub-Saharan Africa reduces admissions and increases home death rates. J Pain Symptom Manag. 2014;47(4):786–92.CrossRef
16.
Smith S, Brick A, O'Hara S, Normand C. Evidence on the cost and cost-effectiveness of palliative care: a literature review. Palliat Med. 2014;28(2):130–50.PubMedCrossRef
17.
Allsop MJ, Namisango E, Powell RA. A survey of mobile phone use in the provision of palliative care services in the African region and priorities for future development. J Telemed Telecare. 2019;25(4):230–40.PubMedCrossRef
18.
19.
Beratarrechea A, Lee A, Willner J, Jahangir E, Ciapponi A, Rubinstein A. The impact of Mobile health interventions on chronic disease outcomes in developing countries: a systematic review. Telemed J E Health. 2014;20(1):75–82.
20.
Bates M. Technological innovation comes to palliative care: with a shortage of palliative specialists, telemedicine and remote monitoring offer relief. IEEE Pulse. 2016;7(6):25–9.PubMedCrossRef
21.
22.
Oliver DP, Washington KT, Wittenberg-Lyles E, Demiris G, Porock D. They're part of the team': participant evaluation of the ACTIVE intervention. Palliat Med. 2009;23(6):549–55.PubMedCrossRef
23.
Mehl GL, Tamrat T, Bhardwaj S, Blaschke S, Labrique A. Digital health vision: could MomConnect provide a pragmatic starting point for achieving universal health coverage in South Africa and elsewhere? BMJ Glob Health. 2018;3(Suppl 2):e000626.PubMedPubMedCentralCrossRef
24.
GSM Association. The Mobile economy: sub-Saharan Africa 2019. London, UK: GSM Association; 2019.
25.
26.
Namisango E, Ntege C, Luyirika EB, Kiyange F, Allsop MJ. Strengthening pharmaceutical systems for palliative care services in resource limited settings: piloting a mHealth application across a rural and urban setting in Uganda. BMC Palliat Care. 2016;15:20.PubMedPubMedCentralCrossRef
27.
Allsop MJ, Powell RA, Namisango E. The state of mHealth development and use by palliative care services in sub-Saharan Africa: a systematic review of the literature. BMJ Support Palliat Care. 2018;8(2):155–63.PubMedCrossRef
28.
Okunade K, Bashan Nkhoma K, Salako O, Akeju D, Ebenso B, Namisango E, et al. Understanding data and information needs for palliative cancer care to inform digital health intervention development in Nigeria, Uganda and Zimbabwe: protocol for a multicountry qualitative study. BMJ Open. 2019;9(10):e032166.PubMedPubMedCentralCrossRef
29.
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57.PubMedCrossRef
30.
Harding R. Informal caregivers in home palliative care. Prog Palliat Care. 2013;21(4):3.CrossRef
31.
32.
StataCorp. Stata Statistical Software: Release 15. College Station, TX: StataCorp LLC; 2017.
33.
Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol. 2013;13(1):117.PubMedPubMedCentralCrossRef
34.
Attride-Stirling J. Thematic networks: an analytic tool for qualitative research. Qual Res. 2001;1(3):385–405.CrossRef
35.
Medical Research Council. MRC ethics series. Good research practice: Principles and guidelines London Medical Research Council 2012.
36.
Tindana P, Yakubu A, Staunton C, Matimba A, Littler K, Madden E, et al. Engaging research ethics committees to develop an ethics and governance framework for best practices in genomic research and biobanking in Africa: the H3Africa model. BMC Med Ethics. 2019;20(1):69.PubMedPubMedCentralCrossRef
37.
Shah SGS, Robinson I, AlShawi S. Developing medical device technologies from users' perspectives: a theoretical framework for involving users in the development process. Int J Technol Assess Health Care. 2009;25(4):514–21.PubMedCrossRef
38.
Opoku D, Stephani V, Quentin W. A realist review of mobile phone-based health interventions for non-communicable disease management in sub-Saharan Africa. BMC Med. 2017;15(1):24.PubMedPubMedCentralCrossRef
39.
van Gurp J, Soyannwo O, Odebunmi K, Dania S, van Selm M, van Leeuwen E, et al. Telemedicine’s potential to support good dying in Nigeria: a qualitative study. PLoS One. 2015;10(6):e0126820.PubMedPubMedCentralCrossRef
40.
National Academy of Engineering (US) and Institute of Medicine (US) Committee on Engineering and the Health Care System. In: Reid PP, Compton WD, Grossman JH, editors. A Framework for a Systems Approach to Health Care Delivery. Washington (DC): National Academies Press (US); 2005.
41.
42.
Harris J, Cheevers K, Armes J. The emerging role of digital health in monitoring and supporting people living with cancer and the consequences of its treatments. Curr Opin Support Palliat Care. 2018;12(3):268-75.
43.
Agarwal S, Perry HB, Long LA, Labrique AB. Evidence on feasibility and effective use of mHealth strategies by frontline health workers in developing countries: systematic review. Tropical Med Int Health. 2015;20(8):1003–14.CrossRef
44.
Maar MA, Yeates K, Perkins N, Boesch L, Hua-Stewart D, Liu P, et al. A framework for the study of complex mHealth interventions in diverse cultural settings. JMIR Mhealth Uhealth. 2017;5(4):e47.PubMedPubMedCentralCrossRef
45.
Collins LM. Optimization of behavioral, biobehavioral, and biomedical interventions: the multiphase optimization strategy (MOST). Cham: Springer; 2018.
46.
Packel L, Fahey C, Njau P, McCoy SI. Implementation science using Proctor's framework and an adaptation of the multiphase optimization strategy: optimizing a financial incentive intervention for HIV treatment adherence in Tanzania. J Acquir Immune Defic Syndr. 2019;82(Suppl 3):S332-8.
47.
Bhatt S, Evans J, Gupta S. Barriers to scale of digital health Systems for Cancer Care and Control in last-mile settings. J Glob Oncol. 2017;4:1–3.PubMed
48.
Tiffin N, George A, LeFevre AE. How to use relevant data for maximal benefit with minimal risk: digital health data governance to protect vulnerable populations in low-income and middle-income countries. BMJ Glob Health. 2019;4(2):e001395.PubMedPubMedCentralCrossRef
49.
LeFevre AE, Shah N, Bashingwa JJH, George AS, Mohan D. Does women's mobile phone ownership matter for health? Evidence from 15 countries. BMJ Glob Health. 2020;5(5):e002524.PubMedPubMedCentralCrossRef
50.
Rotondi V, Kashyap R, Pesando LM, Spinelli S, Billari FC. Leveraging mobile phones to attain sustainable development. Proc Natl Acad Sci. 2020;117(24):13413–20.PubMedCrossRefPubMedCentral
51.
Winters N, Venkatapuram S, Geniets A, Wynne-Bannister E. Prioritarian principles for digital health in low resource settings. J Med Ethics. 2020;46(4):259.PubMedCrossRef
52.
Labrique AB, Wadhwani C, Williams KA, Lamptey P, Hesp C, Luk R, et al. Best practices in scaling digital health in low and middle income countries. Glob Health. 2018;14(1):103.CrossRef
53.
Osakunor DNM, Sengeh DM, Mutapi F. Coinfections and comorbidities in African health systems: At the interface of infectious and noninfectious diseases. PLoS Negl Trop Dis. 2018;12(9):e0006711-e.
Metadata
Title
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
Authors
Kennedy Bashan Nkhoma
Bassey Ebenso
David Akeju
Samuel Adejoh
Michael Bennett
Mike Chirenje
Adlight Dandadzi
Elizabeth Nabirye
Elizabeth Namukwaya
Eve Namisango
Kehinde Okunade
Omolola Salako
Richard Harding
Matthew J. Allsop
Publication date
01-12-2021
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2021
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-020-00694-y

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