Barriers to Secondary Stroke Prevention and Care in Urban and Rural Uganda: Lived Experiences of Stroke Survivors, Carers and Key Stakeholders

Jane Nakibuuka; Haddy Nalubwama; Elizabeth Nambalirwa; Olivia Namusoke; Jayne Byakika-Tusiime; Martha Sajatovic; Elly Katabira

doi:doi:10.11648/j.cmr.20211003.11

Barriers to Secondary Stroke Prevention and Care in Urban and Rural Uganda: Lived Experiences of Stroke Survivors, Carers and Key Stakeholders

Jane Nakibuuka, Haddy Nalubwama, Elizabeth Nambalirwa, Olivia Namusoke, Jayne Byakika-Tusiime, Martha Sajatovic, Elly Katabira

Published in Clinical Medicine Research (Volume 10, Issue 3)

Received: 6 April 2021 Accepted: 19 April 2021 Published: 8 May 2021

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Abstract

Although Stroke is largely preventable, it remains a major public health concern in Uganda which calls for inquiry into the factors impeding its prevention and management in both urban and rural settings. This study explored barriers to secondary stroke prevention and care based on lived experiences of stroke survivors, their care takers and key stakeholders, to provide a broader picture of key areas that require modification to achieve successful stroke prevention and care programs. A total of 31 participants (stroke survivors, care takers, key stakeholders) stratified by age and sex were engaged in in-depth and key informant interviews in urban and rural populations of Wakiso district in central Uganda. Interviews were audio recorded and transcribed verbatim. Transcripts were analyzed thematically using inductive and deductive approaches. Three major domains emerged from the interview data: 1) Patient level barriers (inadequate stroke knowledge, financial impediments, post-traumatic stress disorder, pill burden, adamancy when feeling better), 2) Community level barriers (limited social support, stigmatization), 3) Health system level barriers (scarcity of human resources and drugs, poor patient-health worker relationship, poor access to healthcare, lack of stroke rehabilitation centres and equipment). Rural participants especially insisted on improving stroke awareness and access to healthcare to improve prevention and care programs. In conclusion, stroke prevention and care program interventions must address barriers at individual and community levels where increased stroke awareness should be emphasized and at health system level where access to healthcare facilities, human resource and equipment are improved to meet stroke specific needs.

Published in	Clinical Medicine Research (Volume 10, Issue 3)
DOI	10.11648/j.cmr.20211003.11
Page(s)	59-66
Creative Commons	This is an Open Access article, distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution and reproduction in any medium or format, provided the original work is properly cited.
Copyright	Copyright © The Author(s), 2024. Published by Science Publishing Group

Keywords

Secondary Prevention, Stroke Survivors, Care Takers, Key Informants, Stroke, Uganda

References

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[3]	Dalal PM, Malik S, Bhattacharjee M, et al. Stroke survey in Mumbai, India: incidence and 28-day case fatality. Neuroepidemiology 2008; 31 (4): 254-61.
[4]	Dalal PM and Bhattacharjee M. Stroke epidemic in India: hypertension-stroke control programme is urgently needed. j Assoc Physicians India 2007; 55: 689-91.
[5]	Katan M, Luft A. Global Burden of Stroke. Semin Neurol 2018; 38 (02): 208-211.
[6]	Lozano R, Naghavi M, Foreman K, et al. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global burden of Diseasee Study 2010. Lancet 2012; 380: 2095-2128.
[7]	WHO (2009). The Atlas of Heart Disease and Stroke. [online] Available at: http://www.who.int/cardiovascular_disease/resources/atlas/en/index.html. [Accessed 1 April 2021].
[8]	Mathers CD, Lopez AD, Murray CJL. The Burden of Disease and Mortality by Condition: Data, Methods, and Results for 2001. Global burden of disease and risk factors 45, 88 In Lopez AD, Mathers CD, Ezzati M, Jamison DT, Murray CJL (Eds.). Global Burden of Disease and Risk Factors. Washington DC: The International Bank for Reconstruction and Development/The World Bank Group 2006.
[9]	O'Donnell MJ, Xavier D, Liu L, et al. Risk factors for ischaemic and intracerebral haemorrhagic stroke in 22 countries (the INTERSTROKE study): a case-control study. Lancet 2010; 376 (9735): 112-123.
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[14]	Nakibuuka J, Sajatovic M, Nankabirwa J, et al. Stroke risk factors differ between rural and urban communities: population survey in central Uganda. Neuroepidemiology 2015; 44: 156-165.
[15]	Jamison J, Graffy J, Mullis R, et al. Barriers to medication adherence for the secondary prevention of stroke: a qualitative interview study in primary care, Br J Gen Pract. 2016; 66 (649): e568–e576.
[16]	Kaddumukasa M, Kayima J, Nakibuuka J, et al. Modifiable lifestyle risk factors for stroke among a high risk hypertensive population in Greater Kampala, Uganda; a cross-sectional study. BMC Res Notes. 2017 Dec 4; 10 (1): 675.
[17]	Nakibuuka J, Sajatovic M, Katabira E, et al. Knowledge and Perception of Stroke: A Population-Based Survey in Uganda, ISRN Stroke. 2014. doi: 10.1155/2014/309106.PMID:25202472.
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APA Style

Jane Nakibuuka, Haddy Nalubwama, Elizabeth Nambalirwa, Olivia Namusoke, Jayne Byakika-Tusiime, et al. (2021). Barriers to Secondary Stroke Prevention and Care in Urban and Rural Uganda: Lived Experiences of Stroke Survivors, Carers and Key Stakeholders. Clinical Medicine Research, 10(3), 59-66. https://doi.org/10.11648/j.cmr.20211003.11

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ACS Style

Jane Nakibuuka; Haddy Nalubwama; Elizabeth Nambalirwa; Olivia Namusoke; Jayne Byakika-Tusiime, et al. Barriers to Secondary Stroke Prevention and Care in Urban and Rural Uganda: Lived Experiences of Stroke Survivors, Carers and Key Stakeholders. Clin. Med. Res. 2021, 10(3), 59-66. doi: 10.11648/j.cmr.20211003.11

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AMA Style

Jane Nakibuuka, Haddy Nalubwama, Elizabeth Nambalirwa, Olivia Namusoke, Jayne Byakika-Tusiime, et al. Barriers to Secondary Stroke Prevention and Care in Urban and Rural Uganda: Lived Experiences of Stroke Survivors, Carers and Key Stakeholders. Clin Med Res. 2021;10(3):59-66. doi: 10.11648/j.cmr.20211003.11

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@article{10.11648/j.cmr.20211003.11,
  author = {Jane Nakibuuka and Haddy Nalubwama and Elizabeth Nambalirwa and Olivia Namusoke and Jayne Byakika-Tusiime and Martha Sajatovic and Elly Katabira},
  title = {Barriers to Secondary Stroke Prevention and Care in Urban and Rural Uganda: Lived Experiences of Stroke Survivors, Carers and Key Stakeholders},
  journal = {Clinical Medicine Research},
  volume = {10},
  number = {3},
  pages = {59-66},
  doi = {10.11648/j.cmr.20211003.11},
  url = {https://doi.org/10.11648/j.cmr.20211003.11},
  eprint = {https://article.sciencepublishinggroup.com/pdf/10.11648.j.cmr.20211003.11},
  abstract = {Although Stroke is largely preventable, it remains a major public health concern in Uganda which calls for inquiry into the factors impeding its prevention and management in both urban and rural settings. This study explored barriers to secondary stroke prevention and care based on lived experiences of stroke survivors, their care takers and key stakeholders, to provide a broader picture of key areas that require modification to achieve successful stroke prevention and care programs. A total of 31 participants (stroke survivors, care takers, key stakeholders) stratified by age and sex were engaged in in-depth and key informant interviews in urban and rural populations of Wakiso district in central Uganda. Interviews were audio recorded and transcribed verbatim. Transcripts were analyzed thematically using inductive and deductive approaches. Three major domains emerged from the interview data: 1) Patient level barriers (inadequate stroke knowledge, financial impediments, post-traumatic stress disorder, pill burden, adamancy when feeling better), 2) Community level barriers (limited social support, stigmatization), 3) Health system level barriers (scarcity of human resources and drugs, poor patient-health worker relationship, poor access to healthcare, lack of stroke rehabilitation centres and equipment). Rural participants especially insisted on improving stroke awareness and access to healthcare to improve prevention and care programs. In conclusion, stroke prevention and care program interventions must address barriers at individual and community levels where increased stroke awareness should be emphasized and at health system level where access to healthcare facilities, human resource and equipment are improved to meet stroke specific needs.},
 year = {2021}
}

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TY  - JOUR
T1  - Barriers to Secondary Stroke Prevention and Care in Urban and Rural Uganda: Lived Experiences of Stroke Survivors, Carers and Key Stakeholders
AU  - Jane Nakibuuka
AU  - Haddy Nalubwama
AU  - Elizabeth Nambalirwa
AU  - Olivia Namusoke
AU  - Jayne Byakika-Tusiime
AU  - Martha Sajatovic
AU  - Elly Katabira
Y1  - 2021/05/08
PY  - 2021
N1  - https://doi.org/10.11648/j.cmr.20211003.11
DO  - 10.11648/j.cmr.20211003.11
T2  - Clinical Medicine Research
JF  - Clinical Medicine Research
JO  - Clinical Medicine Research
SP  - 59
EP  - 66
PB  - Science Publishing Group
SN  - 2326-9057
UR  - https://doi.org/10.11648/j.cmr.20211003.11
AB  - Although Stroke is largely preventable, it remains a major public health concern in Uganda which calls for inquiry into the factors impeding its prevention and management in both urban and rural settings. This study explored barriers to secondary stroke prevention and care based on lived experiences of stroke survivors, their care takers and key stakeholders, to provide a broader picture of key areas that require modification to achieve successful stroke prevention and care programs. A total of 31 participants (stroke survivors, care takers, key stakeholders) stratified by age and sex were engaged in in-depth and key informant interviews in urban and rural populations of Wakiso district in central Uganda. Interviews were audio recorded and transcribed verbatim. Transcripts were analyzed thematically using inductive and deductive approaches. Three major domains emerged from the interview data: 1) Patient level barriers (inadequate stroke knowledge, financial impediments, post-traumatic stress disorder, pill burden, adamancy when feeling better), 2) Community level barriers (limited social support, stigmatization), 3) Health system level barriers (scarcity of human resources and drugs, poor patient-health worker relationship, poor access to healthcare, lack of stroke rehabilitation centres and equipment). Rural participants especially insisted on improving stroke awareness and access to healthcare to improve prevention and care programs. In conclusion, stroke prevention and care program interventions must address barriers at individual and community levels where increased stroke awareness should be emphasized and at health system level where access to healthcare facilities, human resource and equipment are improved to meet stroke specific needs.
VL  - 10
IS  - 3
ER  -

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Author Information

Jane Nakibuuka

Department of Medicine, Mulago National Referral Hospital, Kampala, Uganda
Haddy Nalubwama

Department of Obstetrics and Gynaecology, School of Medicine, Makerere University College of Health Sciences, Kampala, Uganda
Elizabeth Nambalirwa

Division of Social Sciences, Makerere Institute of Social Research, Kampala, Uganda
Olivia Namusoke

Infectious Diseases Institute, Makerere University College of Health Sciences, Kampala, Uganda
Jayne Byakika-Tusiime

Emergency Preparedness Program, WHO Regional Office ESA Hub, Nairobi, Kenya
Martha Sajatovic

Neurological and Behavioral Outcomes Center, University Hospitals Case Medical Center, Case Western Reserve University, School of Medicine, Cleveland Ohio, USA
Elly Katabira

Department of Medicine, School of Medicine, Makerere University College of Health Sciences, Kampala, Uganda

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Plain Text BibTeX RIS

APA Style

Jane Nakibuuka, Haddy Nalubwama, Elizabeth Nambalirwa, Olivia Namusoke, Jayne Byakika-Tusiime, et al. (2021). Barriers to Secondary Stroke Prevention and Care in Urban and Rural Uganda: Lived Experiences of Stroke Survivors, Carers and Key Stakeholders. Clinical Medicine Research, 10(3), 59-66. https://doi.org/10.11648/j.cmr.20211003.11

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ACS Style

Jane Nakibuuka; Haddy Nalubwama; Elizabeth Nambalirwa; Olivia Namusoke; Jayne Byakika-Tusiime, et al. Barriers to Secondary Stroke Prevention and Care in Urban and Rural Uganda: Lived Experiences of Stroke Survivors, Carers and Key Stakeholders. Clin. Med. Res. 2021, 10(3), 59-66. doi: 10.11648/j.cmr.20211003.11

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AMA Style

Jane Nakibuuka, Haddy Nalubwama, Elizabeth Nambalirwa, Olivia Namusoke, Jayne Byakika-Tusiime, et al. Barriers to Secondary Stroke Prevention and Care in Urban and Rural Uganda: Lived Experiences of Stroke Survivors, Carers and Key Stakeholders. Clin Med Res. 2021;10(3):59-66. doi: 10.11648/j.cmr.20211003.11

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@article{10.11648/j.cmr.20211003.11,
  author = {Jane Nakibuuka and Haddy Nalubwama and Elizabeth Nambalirwa and Olivia Namusoke and Jayne Byakika-Tusiime and Martha Sajatovic and Elly Katabira},
  title = {Barriers to Secondary Stroke Prevention and Care in Urban and Rural Uganda: Lived Experiences of Stroke Survivors, Carers and Key Stakeholders},
  journal = {Clinical Medicine Research},
  volume = {10},
  number = {3},
  pages = {59-66},
  doi = {10.11648/j.cmr.20211003.11},
  url = {https://doi.org/10.11648/j.cmr.20211003.11},
  eprint = {https://article.sciencepublishinggroup.com/pdf/10.11648.j.cmr.20211003.11},
  abstract = {Although Stroke is largely preventable, it remains a major public health concern in Uganda which calls for inquiry into the factors impeding its prevention and management in both urban and rural settings. This study explored barriers to secondary stroke prevention and care based on lived experiences of stroke survivors, their care takers and key stakeholders, to provide a broader picture of key areas that require modification to achieve successful stroke prevention and care programs. A total of 31 participants (stroke survivors, care takers, key stakeholders) stratified by age and sex were engaged in in-depth and key informant interviews in urban and rural populations of Wakiso district in central Uganda. Interviews were audio recorded and transcribed verbatim. Transcripts were analyzed thematically using inductive and deductive approaches. Three major domains emerged from the interview data: 1) Patient level barriers (inadequate stroke knowledge, financial impediments, post-traumatic stress disorder, pill burden, adamancy when feeling better), 2) Community level barriers (limited social support, stigmatization), 3) Health system level barriers (scarcity of human resources and drugs, poor patient-health worker relationship, poor access to healthcare, lack of stroke rehabilitation centres and equipment). Rural participants especially insisted on improving stroke awareness and access to healthcare to improve prevention and care programs. In conclusion, stroke prevention and care program interventions must address barriers at individual and community levels where increased stroke awareness should be emphasized and at health system level where access to healthcare facilities, human resource and equipment are improved to meet stroke specific needs.},
 year = {2021}
}

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TY  - JOUR
T1  - Barriers to Secondary Stroke Prevention and Care in Urban and Rural Uganda: Lived Experiences of Stroke Survivors, Carers and Key Stakeholders
AU  - Jane Nakibuuka
AU  - Haddy Nalubwama
AU  - Elizabeth Nambalirwa
AU  - Olivia Namusoke
AU  - Jayne Byakika-Tusiime
AU  - Martha Sajatovic
AU  - Elly Katabira
Y1  - 2021/05/08
PY  - 2021
N1  - https://doi.org/10.11648/j.cmr.20211003.11
DO  - 10.11648/j.cmr.20211003.11
T2  - Clinical Medicine Research
JF  - Clinical Medicine Research
JO  - Clinical Medicine Research
SP  - 59
EP  - 66
PB  - Science Publishing Group
SN  - 2326-9057
UR  - https://doi.org/10.11648/j.cmr.20211003.11
AB  - Although Stroke is largely preventable, it remains a major public health concern in Uganda which calls for inquiry into the factors impeding its prevention and management in both urban and rural settings. This study explored barriers to secondary stroke prevention and care based on lived experiences of stroke survivors, their care takers and key stakeholders, to provide a broader picture of key areas that require modification to achieve successful stroke prevention and care programs. A total of 31 participants (stroke survivors, care takers, key stakeholders) stratified by age and sex were engaged in in-depth and key informant interviews in urban and rural populations of Wakiso district in central Uganda. Interviews were audio recorded and transcribed verbatim. Transcripts were analyzed thematically using inductive and deductive approaches. Three major domains emerged from the interview data: 1) Patient level barriers (inadequate stroke knowledge, financial impediments, post-traumatic stress disorder, pill burden, adamancy when feeling better), 2) Community level barriers (limited social support, stigmatization), 3) Health system level barriers (scarcity of human resources and drugs, poor patient-health worker relationship, poor access to healthcare, lack of stroke rehabilitation centres and equipment). Rural participants especially insisted on improving stroke awareness and access to healthcare to improve prevention and care programs. In conclusion, stroke prevention and care program interventions must address barriers at individual and community levels where increased stroke awareness should be emphasized and at health system level where access to healthcare facilities, human resource and equipment are improved to meet stroke specific needs.
VL  - 10
IS  - 3
ER  -

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