Improving care for people with heart failure in Uganda: Serial in-depth interviews with patients' and their health care professionals

被引：8

作者：

Namukwaya E. ^{[1
]}

Grant L. ^{[2
]}

Downing J. ^{[1
]}

Leng M. ^{[1
]}

Murray S.A. ^{[3
]}

机构：

[1] Makerere University, College of Health Sciences, P.O BOX 7072, Kampala

[2] Global Health Academy, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Medical School, Teviot Place, Edinburgh

[3] Primary Palliative Care Research Group, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Medical School, Teviot Place, Edinburgh

来源：

BMC Research Notes | / 10卷 / 1期

关键词：

Heart failure; Palliative care; Patient experience; Qualitative research; Uganda;

D O I：

10.1186/s13104-017-2505-0

中图分类号：

学科分类号：

摘要：

Background: The short prognosis of patients with advanced heart failure (HF) and the associated multidimensional distress as illustrated in literature from high income countries necessitates the integration of palliative care into the care of advanced HF patients to address these needs and improve their quality of life. These needs, which are subjective, have not been described from the patients' and health care professionals'(HPs) view point in the Ugandan setting, a low income country with a different socio-cultural context. This study aimed at bridging this gap in knowledge by eliciting patients' and HPs' views of HF patients' needs over the course of their illness to enable generalists, cardiologists and palliative care clinicians to develop guidelines to provide patient-centred realistic care in Uganda. Methods: Serial qualitative in-depth interviews were conducted with HF patients who were purposively sampled and recruited in Mulago National Referral Hospital (MNRH) until thematic saturation. In-depth interviews were conducted at three time points with intervals of 3 month between interviews over the course of their illness in the hospital and their home context. One-off interviews were conducted with HPs that manage HF in MNRH. We used a grounded theory approach in data analysis. The Uganda National Council of science and technology approved the research. Results: Forty-eight interviews were conducted with 21 patients and their carers and eight interviews with their HPs. Multidimensional needs including physical, psychological, social, spiritual and information needs were identified. These highlighted the underpinning need to have normal functioning, control, to cope and adapt to a changed life and to find meaning. Spiritual needs were less recognised by HPs than the other multidimensional needs. Information needs were commonly unmet. Patients and HPs suggested improvements in care that were congruent with the recommendations in chronic disease care and the six pillars of the WHO health systems strengthening approach. Conclusion: Management of HF in Uganda requires an approach that targets multidimensional needs, embraces multidisciplinary care and strengthens health systems which are all important tenets of palliative care. © 2017 The Author(s).

引用

共 57 条

[1]

Abdesslam B., Boutayeb S., The burden of non-communicable diseases in developing countries, Int J Equity Health, 4, 1, (2005)

[2]

Global Status Report on Non-communicable Diseases 2010, (2011)

[3]

Global Status Report on Non Communicable Diseases, (2014)

[4]

Fuster V., Kelly B.B., Promoting Cardiovascular Health in the Developing World: A Critical Challenge to Achieve Global Health, (2010)

[5]

Ntusi N., Mayosi B.M., Epidemiology of heart failure in sub-Saharan Africa, Expert Rev Cardiovasc Ther, 7, 2, pp. 169-180, (2009)

[6]

Santulli G., Epidemiology of cardiovascular disease in the 21st century: Updated numbers and updated facts, J Cardiovasc Dis, 1, 1, pp. 1-2, (2013)

[7]

Kuule J.K., Seremba E., Freers J., Anaemia among patients with congestive cardiac failure in Uganda: Its impact on treatment outcomes, S Afr Med J, 99, 12, pp. 876-880, (2009)

[8]

Bekelman D.B., Et al., Symptom burden, depression, and spiritual well-being: A comparison of heart failure and advanced cancer patients, J Gen Intern Med, 24, 5, pp. 592-598, (2009)

[9]

Zambroski C.H., Et al., Impact of symptom prevalence and symptom burden on quality of life in patients with heart failure, Eur J Cardiovasc Nurs, 4, 3, pp. 198-206, (2005)

[10]

Anderson H., Et al., The concerns of patients under palliative care and a heart failure clinic are not being met, Palliat Med, 15, 4, pp. 279-286, (2001)

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