The way I am treated is as if I am under my mother’s care : qualitative study of patients’ experiences of receiving hospice care services in South Africa
Date
2020-07-01
Journal Title
Journal ISSN
Volume Title
Publisher
BMC (part of Springer Nature)
Abstract
Background: Research on the patient experience of receiving palliative care across a number of settings is
increasing, but the majority of these investigations are situated within the context of developed countries. There is
limited research from resource-limited countries, especially with regard to patients with cancer who receive hospice
care. The present study explored the lived experience of attending hospice care facilities in South Africa to develop
a bottom-up understanding from the perspectives of patients themselves.
Methods: A qualitative cross-sectional study was designed to examine how patients experienced receiving hospice
care We conducted in-depth, semi-structured interviews with thirteen, purposively selected patients living with
terminal cancer and receiving in-patient or day care palliative services from a hospice organisation in South Africa.
We used inductive thematic analysis to analyse the data.
Results: We identified three themes that reflected a process of transformation that was experienced by participants
during their engagement with the hospice services. The first theme describes participants’ initial reluctance to be
linked to the hospice as a result of the stereotypic perceptions of hospice as being associated with death and
dying. The second theme presents the perceived positive impact on patients’ physical and psychosocial wellbeing
which resulted from the highly valued interactions with staff and other patients as well as patients’ engagement
with creative activities. The final theme delineates the transformation of hospice into a second ‘family’ and ‘home’
and the restoration of an identity that expands beyond the ‘sick’ role.
Conclusions: Receiving hospice care that sensitively attends to patients’ psychosocial and physical needs helps
people to re-create a sense of homeliness within the world, re-orient themselves toward a meaningful life and reconfigure
their relationship with self. Patient experience of receiving hospice care in South Africa does not appear
dissimilar to that reported by patients in resource-rich countries, suggesting underlying commonalities. There is a
need for raising awareness and educating the public about what palliative care can offer to those in need. Public
health campaigns could help reduce the stigma attached to palliative care, deflect negative perceptions, and
communicate the benefits for patients, families and communities in culturally sensitive ways.
Description
CITATION: Vasileiou, K., Smith, P. & Kagee, A. 2020. The way I am treated is as if I am under my mother’s care : qualitative study of patients’ experiences of receiving hospice care services in South Africa. BMC Palliative Care, 19:95, doi:10.1186/s12904-020-00605-1.
The original publication is available at https://bmcpalliatcare.biomedcentral.com
The original publication is available at https://bmcpalliatcare.biomedcentral.com
Keywords
Palliative care -- Psychological aspects, Hospice care, Qualitative research, Cancer -- Patients -- Psychosomatic aspects
Citation
Vasileiou, K., Smith, P. & Kagee, A. 2020. The way I am treated is as if I am under my mother’s care : qualitative study of patients’ experiences of receiving hospice care services in South Africa. BMC Palliative Care, 19:95, doi:10.1186/s12904-020-00605-1