Lived Experiences and Technological Literacy of Heart Failure Patients and Clinicians at a Cardiac Care Centre in Uganda

Jason Hearn, Quynh Pham, Jeremy I Schwartz, Isaac Ssinabulya, Ann R Akiteng, Heather J Ross, Joseph A Cafazzo, Jason Hearn, Quynh Pham, Jeremy I Schwartz, Isaac Ssinabulya, Ann R Akiteng, Heather J Ross, Joseph A Cafazzo

Abstract

Background: Digital health could serve as a low-cost means of enabling better self-care in patients living with heart failure (HF) in resource-limited settings such as Uganda. However, digital health interventions previously deployed in such settings have been unsuccessful due to a lack of local patient and clinician engagement in the design process.

Objective: To engage Ugandan HF patients and clinicians regarding their experiences with HF management and technology, so as to inform the future design of a digital health intervention for HF patients in Uganda.

Methods: The study employed a convergent parallel mixed-methods design. Data collection was completed at the Uganda Heart Institute in Kampala, Uganda. Data were ascertained through a patient survey and semi-structured interviews completed with HF patients, caregivers, physicians, and nurses. A conventional content analysis approach was used to qualitatively examine interview transcripts.

Findings: Survey data were collected from 101 HF patients (62 female/39 male, aged 54.2 ± 17.5 years). Nearly half (48%) disagreed that they knew what to do in response to changes in their HF symptoms. Almost all patients (98%) had access to a mobile device. Many patients (63%) identified as comfortable in using mobile money - a local set of services that use Unstructured Supplementary Service Data (USSD). Interviews were completed with 19 HF patients, three caregivers, seven physicians, and three nurses. Qualitative analysis revealed four clusters of themes: overdependence of patients on the clinic, inconvenience associated with attending the clinic, inconsistent patient self-care behaviours at home, and technological abilities that favoured USSD-based services.

Conclusions: Ugandan HF patients possess unmet information needs that leave them ill-equipped to care for themselves. Future digital health interventions for this population should empower patients with HF-specific information and reassurance in their self-care abilities. Based on patient preferences, such systems should harness USSD technology with which most patients are already comfortable.

Conflict of interest statement

The authors have no competing interests to declare.

Copyright: © 2020 The Author(s).

Figures

Figure 1
Figure 1
Summary of the seven themes and four theme clusters emerging in the qualitative analysis.

References

    1. World Health Organization. Deaths from cardiovascular diseases and diabetes. . Published 2012. Accessed October 30, 2016.
    1. World Health Organization. Global Status Report on Noncommunicable Diseases 2014; 2014.
    1. World Health Organization. Noncommunicable Diseases Country Profiles; 2018.
    1. Global Burden of Disease Collaborative Network. Global Burden of Disease Study 2017. Seattle: Institute for Health Metrics and Evaluation; 2018.
    1. Huffman MD, Prabhakaran D. Heart failure: Epidemiology and prevention in India. Natl Med J India. 2012; 23(5): 283–288.
    1. Cook C, Cole G, Asaria P, Jabbour R, Francis DP. The annual global economic burden of heart failure. Int J Cardiol. 2014; 171(3): 368–376. DOI: 10.1016/j.ijcard.2013.12.028
    1. Sherwood L, Ward C. Human Physiology: From Cells to Systems. 3rd ed. Nelson Education Ltd.; 2016.
    1. Grady KL. Self-care and quality of life outcomes in heart failure patients. J Cardiovasc Nurs. 2008; 23(3): 285–292. DOI: 10.1097/
    1. Riegel B, Moser DK, Anker SD, et al. State of the science: Promoting self-care in persons with heart failure: A scientific statement from the American Heart Association. Circulation. 2009; 120(12): 1141–1163. DOI: 10.1161/CIRCULATIONAHA.109.192628
    1. Scherr D, Kastner P, Kollmann A, et al. Effect of home-based telemonitoring using mobile phone technology on the outcome of heart failure patients after an episode of acute decompensation: Randomized controlled trial. J Med Internet Res. 2009; 11(3): e34 DOI: 10.2196/jmir.1252
    1. Koehler F, Winkler S, Schieber M, et al. Impact of remote telemedical management on mortality and hospitalizations in ambulatory patients with chronic heart failure: The telemedical interventional monitoring in heart failure study. Circulation. 2011; 123(17): 1873–1880. DOI: 10.1161/CIRCULATIONAHA.111.018473
    1. Suh M, Chen C-A, Woodbridge J, et al. A remote patient monitoring system for congestive heart failure. J Med Syst. 2011; 35(5): 1165–1179. DOI: 10.1007/s10916-011-9733-y
    1. Bartlett YK, Haywood A, Bentley CL, et al. The SMART personalised self-management system for congestive heart failure: Results of a realist evaluation. BMC Med Inform Decis Mak. 2014; 14(1): 1–13. DOI: 10.1186/s12911-014-0109-3
    1. Triantafyllidis A, Velardo C, Chantler T, et al. A personalised mobile-based home monitoring system for heart failure: The SUPPORT-HF Study. Int J Med Inform. 2015; 84(10): 743–753. DOI: 10.1016/j.ijmedinf.2015.05.003
    1. Alluhaidan A, Lee E, Alnosayan N, et al. Designing patient-centered mHealth technology intervention to reduce hospital readmission for heart-failure patients. In: 2015 48th Hawaii International Conference on System Sciences Vol 2015-March IEEE 2015; 2886–2895. DOI: 10.1109/HICSS.2015.349
    1. Piette JD, Striplin D, Marinec N, et al. A mobile health intervention supporting heart failure patients and their informal caregivers: A randomized comparative effectiveness trial. J Med Internet Res. 2015; 17(6): e142 DOI: 10.2196/jmir.4550
    1. Hale TM, Jethwani K, Kandola MS, Saldana F, Kvedar JC. A remote medication monitoring system for chronic heart failure patients to reduce readmissions: A two-arm randomized pilot study. J Med Internet Res. 2016; 18(5): e91 DOI: 10.2196/jmir.5256
    1. Athilingam P, Jenkins B, Johansson M, Labrador M. A mobile health intervention to improve self-care in patients with heart failure: Pilot randomized control trial. JMIR Cardio. 2017; 1(2): e3 DOI: 10.2196/cardio.7848
    1. Seto E, Leonard KJ, Cafazzo JA, Barnsley J, Masino C, Ross HJ. Mobile phone-based telemonitoring for heart failure management: a randomized controlled trial. J Med Internet Res. 2012; 14(1): e31 DOI: 10.2196/jmir.1909
    1. Ware P, Ross HJ, Cafazzo JA, Boodoo C, Munnery M, Seto E. Outcomes of a heart failure telemonitoring program implemented as the standard of care in an outpatient heart function clinic: Pretest-posttest pragmatic study. J Med Internet Res. 2020; 22(2): e16538 DOI: 10.2196/16538
    1. Pew Research Center. Smartphone ownership and internet usage continues to climb in emerging economies; 2016. .
    1. Hearn J, Ssinabulya I, Schwartz JI, Akiteng AR, Ross HJ, Cafazzo JA. Self-management of non-communicable diseases in low- and middle-income countries: A scoping review. PLoS One. 2019; 14(7): e0219141 DOI: 10.1371/journal.pone.0219141
    1. Creswell JW, Plano Clark VL. Designing and conducting mixed methods research In: Australian and New Zealand Journal of Public Health. Vol 31 2nd ed. Los Angeles: SAGE Publications; 2007: 79 DOI: 10.1111/j.1753-6405.2007.00096.x
    1. Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005; 15(9): 1277–1288. DOI: 10.1177/1049732305276687
    1. Seto E, Leonard KJ, Masino C, Cafazzo JA, Barnsley J, Ross HJ. Attitudes of heart failure patients and health care providers towards mobile phone-based remote monitoring. J Med Internet Res. 2010; 12(4): e55 DOI: 10.2196/jmir.1627
    1. McNemar Q. Note on the sampling error of the difference between correlated proportions or percentages. Psychometrika. 1947; 12(2): 153–157. DOI: 10.1007/BF02295996
    1. Namukwaya E, Grant L, Downing J, Leng M, Murray SA. Improving care for people with heart failure in Uganda: serial in-depth interviews with patients’ and their health care professionals. BMC Res Notes. 2017; 10(1): 184 DOI: 10.1186/s13104-017-2505-0
    1. Wang Z, Gu H, Zhao D, Wang W. A wireless medical information query system based on Unstructured Supplementary Service Data (USSD). Telemed J E Health. 2008; 14(5): 454–460. DOI: 10.1089/tmj.2007.0069
    1. Wyche SP, Murphy LL. “Dead China-make” phones off the grid: Investigating and designing for mobile phone use in rural Africa. In: Proceedings of the Designing Interactive Systems Conference on – DIS ’12 New York, New York, USA: ACM Press; 2012:186 DOI: 10.1145/2317956.2317985
    1. Makri A. Bridging the digital divide in health care. Lancet Digit Heal. 2019; 1(5): e204–e205. DOI: 10.1016/S2589-7500(19)30111-6
    1. Amoakoh HB, Klipstein-Grobusch K, Grobbee DE, et al. Using mobile health to support clinical decision-making to improve maternal and neonatal health outcomes in Ghana: Insights of frontline health worker information needs. JMIR mHealth uHealth. 2019; 7(5): e12879 DOI: 10.2196/12879
    1. Xiong K, Kamunyori J, Sebidi J. The MomConnect helpdesk: How an interactive mobile messaging programme is used by mothers in South Africa. BMJ Glob Heal. 2018; 3(Suppl 2): e000578 DOI: 10.1136/bmjgh-2017-000578
    1. Mosweunyane G, Seipone T, Nkgau TZ, Makhura OJ. Design of a USSD system for TB contact tracing. In: IASTED International Conference Health Informatics (AfricaHI 2014) ACTAPRESS; 2014 DOI: 10.2316/P.2014.815-026
    1. Nachega JB, Leisegang R, Kallay O, Mills EJ, Zumla A, Lester RT. Mobile health technology for enhancing the COVID-19 response in Africa: A potential game changer? Am J Trop Med Hyg. May 2020. DOI: 10.4269/ajtmh.20-0506

Source: PubMed

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