Multidimensional needs of patients living and dying with heart failure in Kenya: A serial interview study

BMC Palliative Care

Volumn 17, Issue 1, 2018, Pages

  Kimani, Kellen N ^a   Murray, Scott A ^b   Grant, Liz ^b  

^a UNIVERSITY OF NAIROBI   (Kenya)

^b UNIVERSITY OF EDINBURGH   (United Kingdom)

Author keywords

Heart failure; Kenya; Palliative care; Patient experience; Qualitative; Serial interviews; Sub Saharan Africa

Indexed keywords

ACUTE DISEASE; ADULT; BEREAVEMENT; CAREGIVER; CAUSE OF DEATH; CHRONIC DISEASE; CLINICAL ARTICLE; DISEASE COURSE; DISEASE SEVERITY; DISTRESS SYNDROME; DYING; EARLY DIAGNOSIS; EXPERIENCE; FEMALE; FINANCIAL DEFICIT; HEALTH CARE COST; HEALTH CARE NEED; HEART FAILURE; HELP SEEKING BEHAVIOR; HOLISTIC CARE; HOSPITAL PATIENT; HUMAN; INTERVIEW; KENYA; LIFESTYLE MODIFICATION; LONGITUDINAL STUDY; MALE; MEDICAL INFORMATION; PALLIATIVE THERAPY; PATIENT ATTITUDE; PATIENT CARE; PREVENTION; PRIMARY PREVENTION; PROGNOSIS; RELIGION; REVIEW; RISK FACTOR; RURAL AREA; SELF CARE; SOCIAL INTERACTION; SOCIAL PSYCHOLOGY; TENSION; TREATMENT FAILURE; MIDDLE AGED; PATIENT SATISFACTION; PROCEDURES; PSYCHOLOGY; QUALITATIVE RESEARCH; SPIRITUALISM; TERMINALLY ILL PATIENT; TRENDS;

ADULT; BEREAVEMENT; CAREGIVERS; FEMALE; HEART FAILURE; HUMANS; INTERVIEWS AS TOPIC; KENYA; MALE; MIDDLE AGED; PALLIATIVE CARE; PATIENT SATISFACTION; QUALITATIVE RESEARCH; SPIRITUALISM; TERMINALLY ILL;

EID: 85042157326     PISSN: None     EISSN: 1472684X     Source Type: Journal    
DOI: 10.1186/s12904-018-0284-6     Document Type: Review

References (54)

1. Lopez-Sendon J. The heart failure epidemic. Medicographia. 2011;33:363-9.
2. Ponikowski P, Anker SD, AlHabib KF, Cowie MR, Force TL, Hu S, Jaarsma T, Krum H, Rastogi V, Rohde LE, et al. Heart failure: preventing disease and death worldwide. ESC Heart Failure. 2014;1(1):4-25.
3. Sliwa K, Wilkinson D, Hansen C, Ntyintyane L, Tibazarwa K, Becker A, Stewart S. Spectrum of heart disease and risk factors in a black urban population in South Africa (the heart of Soweto study): a cohort study. Lancet. 2008;371(9616):915-22.
4. Kimani K, Namukwaya E, Grant L, Murray SA. What is known about heart failure in sub-Saharan Africa: a scoping review of the English literature. BMJ Support Palliat Care. 2017;7(2):122-27. https://doi.org/10.1136/bmjspcare-2015-000924. Epub 2016 Jan 12.
5. Cowie MR, Wood DA, Coats AJ, Thompson SG, Suresh V, Poole-Wilson PA, Sutton GC. Survival of patients with a new diagnosis of heart failure: a population based study. Heart. 2000;83(5):505-10.
6. Sliwa K, Davison BA, Mayosi BM, Damasceno A, Sani M, Ogah OS, Mondo C, Ojji D, Dzudie A, Kouam CK, et al. Readmission and death after an acute heart failure event: predictors and outcomes in sub-Saharan Africa: results fromthe THESUS-HF registry. Eur Heart J. 2013;34(40):3151-9.
7. Mathers CD, Loncar D. Projections of global mortality and burden of disease from 2002 to 2030. PLoS Med. 2006;3(11):e442.
8. Dalal S, Beunza JJ, Volmink J, Adebamowo C, Bajunirwe F, Njelekela M, Mozaffarian D, Fawzi W, Willett W, Adami H-O, et al. Non-communicable diseases in sub-Saharan Africa: what we know now. Int J Epidemiol. 2011;40(4):885-901.
9. Kengne AP, Mayosi BM. Readiness of the primary care system for non-communicable diseases in sub-Saharan Africa. The. Lancet Glob Health. 2014;2(5):e247-8.
10. Badara S, et al. Prevention and management of chronic disease: a litmus test for health-systems strengthening in low-income and middle-income countries. Lancet. 2010;376(9754):1758-97.
11. Jaarsma T, Beattie JM, Ryder M, Rutten FH, McDonagh T, Mohacsi P, Murray SA, Grodzicki T, Bergh I, Metra M, et al. Palliative care in heart failure: a position statement from the palliative care workshop of the heart failure Association of the European Society of cardiology. Eur J Heart Fail. 2009;11(5):433-43.
12. Murray SA. Llness trajectories and palliative care. BMJ. 2005;330:1007.
13. Boyd KJ, Murray SA, Kendall M, Worth A, Frederick Benton T, Clausen H. Living with advanced heart failure: a prospective, community based study of patients and their carers. Eur J Heart Fail. 2004;6:585-91.
14. Selman L, Harding R, Beynon T, Hodson F, Coady E, Hazeldine C, Walton M, Gibbs L, Higginson IJ: Improving end-of-life care for patients with chronic heart failure: "Let's hope it'll get better, when I know in my heart of hearts it won't". Heart 2007; 93(8):963-967.
15. Olano-Lizarraga M, Oroviogoicoechea C, Errasti-Ibarrondo B, Saracibar-Razquin M. The personal experience of living with chronic heart failure: a qualitative meta-synthesis of the literature. J Clin Nurs. 2016;25(17-18):2413-29.
16. Hopp FP, Thornton N, Martin L. The lived experience of heart failure at the end of life: a systematic literature review. Health Soc Work. 2010;35(2):109-17.
17. 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. https://doi.org/10.1186/s13104-017-2505-0.
18. Creswell JW. Qualitative inquiry & research design: choosing among five approaches. Thousand Oaks: Sage; 2007.
19. Crotty M. The Foundation of Social Research. London: Sage; 1998.
20. Murray SA, Kendall M, Carduff E, Worth A, Harris FM, Lloyd A, Cavers D, Grant L, Sheikh A. Use of serial qualitative interviews to understand patients' evolving experiences and needs. BMJ. 2009;339:b3702. https://doi.org/10.1136/bmj.b3702.
21. Epiphaniou E, Shipman C, Harding R, Mason B, Murray SAA, Higginson IJ, Daveson BA. Coordination of end-of-life care for patients with lung cancer and those with advanced COPD: are there transferable lessons? A longitudinal qualitative study. Prim Care Respir J. 2014;23:46-51.
22. Pinnock H, Kendall M, Murray SA, Worth A, Levack P, Porter M, MacNee W, Sheikh A. Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. BMJ. 2011;342:d142.
23. Mason B, Nanton V, Epiphaniou E, Murray SA, Donaldson A, Shipman C, Daveson BA, Harding R, Higginson IJ, Munday D, et al. My body's falling apart.' Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers. BMJ Support Palliat Care. 2016;6(1):60-5.
24. The Criteria Committee of the New York Heart Association. Nomenclature and criteria for diagnosis of diseases of the heart and great vessels. 9th ed. Boston: Little, Brown & Co; 1994. p. 253-6.
25. Braun V, Clarke V. Successful qualitative research: a practical guide for beginners. London: Sage; 2013.
26. Kimani KN, Murray SA, Grant L. Spiritual issues of people living and dying with advanced heart failure in Kenya: a qualitative serial interview study. BMJ Global Health. 2016;1(3):e000077. https://doi.org/10.1136/bmjgh-2016-000077.
27. Anderson H, Ward C, Eardley A, Gomm SA, Connolly M, Coppinger T, Corgie D, Williams JL, Makin WP. The concerns of patients under palliative care and a heart failure clinic are not being met. Palliat Med. 2001;15(4):279-86.
28. Gysels MH, Higginson IJ. The lived experience of breathlessness and its implications for care: a qualitative comparison in cancer, COPD, heart failure and MND. BMC Palliat Care. 2011;10(1):15.
29. Sethares KA, Sosa ME, Fisher P, Riegel B. Factors associated with delay in seeking care for acute decompensated heart failure. J Cardiovasc Nurs. 2014;29(5):429-38.
30. Evangelista LS, Dracup K, Doering LV. Treatment-seeking delays in heart failure patients. J Heart Lung Transplant. 2000;19(10):932-8.
31. Bury M. Chronic illness as biographical disruption. Sociol Health Illn. 1982;4(2):167-82.
32. Mishel MH. Uncertainty in illness. J Nurs Scholarsh. 1988;20(4):225-32.
33. Rodriguez KL, Appelt CJ, Switzer GE, Sonel AF, Arnold RM. "They diagnosed bad heart": a qualitative exploration of patients' knowledge about and experiences with heart failure. Heart Lung. 2008;37(4):257-65.
34. Githaiga JN. Family cancer care-giving in urban Africa: interrogating the Kenyan model. S Afr J Psychol. 2015;45:410-9.
35. Grant E, Leng M, Namukwaya E, Onapito IO, Kimani K, Downing J. Faith and palliative care: a partnership of care in low- and middle-income countries. Dev Pract. 2017;27(5):610-21.
36. The World Bank. Improving skills development in the informal sector: strategies for sub-Saharan Africa [ https://openknowledge.worldbank.org/bitstream/handle/10986/15802/786870PUB0EPI10Box0377351B00PUBLIC0.pdf;sequence=1].
37. The World bank. Kenya - country economic memorandum [ http://documents.worldbank.org/curated/en/763771468197384854/pdf/103822-WP-Kenya-Country-Economic-Memorandum-PUBLIC.pdf ].
38. Minstry of Health, Government of Kenya. Kenya household health expenditure and utilisation survey [ http://www.healthpolicyproject.com/pubs/745-KHHUESReportJanuary.pdf ].
39. de Graft Aikins A, Boynton P, Atanga L: Developing effective chronic disease prevention in Africa: insights from Ghana and Cameroon. Glob Health. 2010; 19;6:6. doi: https://doi.org/10.1186/1744-8603-6-6.
40. Harding R, Selman L, Beynon T, Hodson F, Coady E, Read C, Walton M, Gibbs L, Higginson IJ. Meeting the communication and information needs of chronic heart failure patients. J Pain Symptom Manag. 2008;36(2):149-56.
41. Rogers AE, Addington-Hall JM, Abery AJ, McCoy ASM, Bulpitt C, Coats AJS, JSR G. Knowledge and communication difficulties for patients with chronic heart failure: qualitative study. BMJ. 2000;321(7261):605-7.
42. Lowey SE, Norton SA, Quinn JR, Quill TE. Living with advanced heart failure or COPD: experiences and goals of individuals nearing the end of life. Res Nurs Health. 2013;36(4):349-58.
43. Keates AK, Mocumbi AO, Ntsekhe M, Sliwa K, Stewart S. Cardiovascular disease in Africa: epidemiological profile and challenges. Nat Rev Cardiol. 2017;14(5):273-93.
44. Bloomfield GS, Barasa FA, Doll JA, Velazquez EJ. Heart failure in sub-Saharan Africa. Curr Cardiol Rev. 2013;9(2):157-73.
45. Damasceno A, Mayosi BM, Sani M, Ogah OS, Mondo C, Ojji D, Dzudie A, Kouam C, Suliman A, Schrueder N, et al. The causes, treatment, and outcome of acute heart failure in 1006 Africans from 9 countries: results of the sub-Saharan Africa survey of heart failure. Arch Intern Med. 2012;172(18):1386-94.
46. Anderson RE, Grant L. What is the value of palliative care provision in low-resource settings? BMJ. Glob Health. 2017;2(1)
47. World Health Organisation. Preventing chronic diseases: a vital investment. WHO global report. [ http://www.who.int/chp/chronic-disease-report/full-report.pdf?ua=1 ].
48. Ward C. The need for palliative care in the management of heart failure. Heart. 2002;87(3):294-8.
49. Samb B, Celletti F, Holloway J, Van Damme W, De Cock K, Dybul M. Rapid expansion of the health workforce in response to the HIV epidemic. N Engl J Med. 2007;357:2510-4.
50. Maher D, Smeeth L, Sekajugo J. Health transition in Africa: practical policy proposals for primary care. Bull World Health Organ. 2010;88(12):943-8.
51. Saldana J. Longitudinal qualitative research: analyzing change though time. Oxford: Rowman & Littlefield; 2003.
52. Kimbell B, Kendall M, Boyd K, Murray SA. Living and dying with liver failure: a serial interview study. BMJ Support Palliat Care. 2013;3(1):124.
53. Carduff E, Kendall M, Murray SA. Living and dying with metastatic bowel cancer: serial in-depth interviews with patients. Eur J Cancer Care. 2017; https://doi.org/10.1111/ecc.12653.
54. Murray SA, Kendall M, Mitchell G, Moine S, Amblàs-Novellas J, Boyd K. Palliative care from diagnosis to death. BMJ. 2017;356:j878.