dc.contributor.advisor | Grant, Liz | en |
dc.contributor.advisor | Murray, Scott | en |
dc.contributor.author | Namukwaya, Elizabeth Kiwuuwa | en |
dc.date.accessioned | 2017-07-17T14:32:54Z | |
dc.date.available | 2017-07-17T14:32:54Z | |
dc.date.issued | 2016-07-02 | |
dc.identifier.uri | http://hdl.handle.net/1842/22856 | |
dc.description.abstract | Background: The burden of non-communicable diseases including cardiovascular
diseases such as heart failure in Africa is rising rapidly, and they are now recognised
as a significant cause of morbidity and mortality in the continent. Heart failure causes
significant multidimensional impact (physical, social, psychological and spiritual),
even with the advent of medicines that offer mortality benefit. Comprehensive care
for heart failure must include palliative care that addresses multidimensional needs in
line with patient-centered care. However, most research on heart failure in Africa has
not explored these multidimensional needs from the patients’ perspective, and
palliative care is still seen as being for those with cancer and HIV/AIDS.
Aims: To understand the multidimensional experiences, needs, and use of services by
patients with heart failure during their disease trajectory. To understand health care
professionals’ perceptions of patients’ needs, the care required and the availability of
services for patients with advanced heart failure in Uganda.
Methods: A total of 48 face to face qualitative longitudinal interviews (36-patient
alone, 4 paired-patient and family carer, 8 with bereaved carers), were conducted with
21 patients with stage 3 or 4 heart failure being treated in Mulago Hospital and some
of their family carers. Patient interviews were followed by the administration of the
African Palliative Care Association African Palliative Outcome Scale supplemented
with the broader symptom assessment tool the POS-S. Patients were interviewed
during the time of hospitalisation when the researcher first made contact with them,
and were followed up monthly by phone. Longitudinal interviews were conducted at
3 and 6 months after the first interview if their clinical condition remained stable, and
earlier if there were major concerns or changes in their multidimensional experiences.
Eight single interviews were conducted with health professionals (5 doctors, 2 nurses
and 1 social worker) involved in the care of the patients. All interviews were audio
recorded, and those of the health professionals transcribed verbatim, those of the
patients were first translated to English and transcribed and all were exported into
QSR Nvivo software version 10 for analysis. Principles from Charmaz’s grounded
theory (line by line coding, focused coding, constant comparison and theoretical
coding) were employed for analysis.
Findings: The patients’ experience was that of learning to live with the unknown in
a life dominated by symptoms despite, and because of, treatments. The impact of the
various symptoms limited physical performance leading to multiple losses. Presence
of a high level of health illiteracy, lack of information on their illness coupled with a
high reliance on local cultural beliefs to make health decisions, led to the following:
delayed recognition of illness and seeking of care; inappropriate self- care and poor
adherence to medications; poor understanding of illness and its prognosis; unrealistic
expectations of treatment; and inappropriate choices of where to seek care. Patients
were often faced with health system challenges that contributed to late diagnosis and
exacerbated the problem of poor adherence to treatment because of lack of medicines
and lack of information. The illness impact was also observed in the social,
psychological and spiritual domains of patients’ lives causing anxiety and worry,
isolation, rejection and stigma, spiritual pain and spiritual growth. Patients expressed
the need for normal functioning, information, to be in control and to be facilitated to
cope and adapt to the unknown. Patients employed different mechanisms of coping
and adaptation, with hope being central in coping as they tried to live with the
unknown. Patients suggested changes to the health system and in the conduct of
health professionals to improve future care. Health professionals were able to
recognise the multidimensional impact of the illness on the patients, but the details of
the concerns tended to differ for the patients and health professionals. Health
professionals’ proposals on improving care tended to emphasise interventions that
would improve physical care as opposed to the other dimensions.
Conclusion: This is the first qualitative longitudinal research in Uganda that has
explored the experiences of patients with advanced heart failure to gain an
understanding of their needs and concerns from their perspective over the course of
their illness. Many concerns such as a lack of information, challenges with coping,
the symptom experience and its impact on function and the psychological, social and
spiritual aspects of their lives are enduring in literature. However, this study also
identified other concerns less common in the literature that could have led to a unique
illness experience. These included: health system challenges; the impact of culture;
beliefs and poverty; and a high level of health illiteracy. | en |
dc.contributor.sponsor | other | en |
dc.language.iso | en | |
dc.publisher | The University of Edinburgh | en |
dc.relation.hasversion | GRANT, L., DOWNING, J., NAMUKWAYA, E., LENG, M. & MURRAY, S. A. (2011) Palliative care in Africa since 2005: Good progress, but much further to go. BMJ Supportive & Palliative Care, 1, 118-122. | en |
dc.relation.hasversion | LEWINGTON, J., NAMUKWAYA, E., LIMOGES, J., LENG, M. & HARDING, R. (2012) Provision of palliative care for life-limiting disease in a low-income country national hospital setting: how much is needed? BMJ Supportive & Palliative Care, 2, 140-144. | en |
dc.subject | experiences | en |
dc.subject | needs | en |
dc.subject | heart failure | en |
dc.subject | longitudinal study | en |
dc.subject | Uganda | en |
dc.title | Understanding the experience and multidimensional needs of Ugandan patients with advanced heart failure | en |
dc.type | Thesis or Dissertation | en |
dc.type.qualificationlevel | Doctoral | en |
dc.type.qualificationname | PhD Doctor of Philosophy | en |