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Challenges around end-of-life care for people with Parkinson’s disease in Kenya

Challenges around end-of-life care for people with Parkinson’s disease in Kenya
Challenges around end-of-life care for people with Parkinson’s disease in Kenya
Objective: To explore how people living with Parkinson’s disease (PwP), and their families, in Kenya negotiate the end of life.

Background: Parkinson’s disease (PD) is a progressive condition that can result in significant pain and suffering towards the end of life. End-of-life care in high-income countries (HICs) often takes place in institutional settings, especially considering the prevalence of comorbidities in advanced PD. Yet few healthcare professionals in Kenya receive any palliative care training, while facilities are lacking [2]. There is limited research exploring end-of-life care for PwP in Kenya, sub-Saharan Africa (SSA), or any low-/middle-income setting.

Method: ethnographic methods comprising interviews and observations took place over 10 months across Kenya. Participants included PwP (N=55), family members (N=23) and healthcare professionals (N=13).

Results: end-of-life care fell on families as hospitals were unaffordable for most and government hospitals had no palliative care facilities. Hope of a miracle recovery through faith/prayer was important for families but could make death more shocking when it came. The study illustrated the societal reluctance to discuss death and dying among families and healthcare professionals due to complex factors at the societal level (cultural “taboo” about death-talk) and individual level (doctors did not want to be seen as “failing” or family members did not want to accept death). Acknowledging that death was near allowed patients to “give up”. Challenges existed around preferred place of death (home, hospice, hospital), which was dependent on social/financial resources, and required improvisation from family and healthcare professionals.

Conclusion: the reluctance to discuss death and dying requires consideration when thinking about end-of-life care for PD in SSA. Palliative care requires an acceptance that the end is near and awareness of the proximity of death, although in Kenya, this was perceived as antithetical to care. Perhaps ‘palliative care’ in its current form needs repackaging in Kenya if doctors are to be equipped with the necessary skills to deliver effective end-of-life care. Initiating discussions around death/dying and normalising death talk could improve acceptance. Findings also provide insights into inequalities in access to care for PwP from BAME groups living across HICs and avenues to address existing disparities in uptake of palliative services.
2330-1619
Fothergill-Misbah, Natasha
22e115ca-ec36-4468-86f1-c781dcaf2c51
Hooker, J.
d0197d8c-b23f-422c-9562-6ec8d8475dac
Kwasa, J.
53ced04f-c61e-400a-9bcb-128118961c3e
Walker, R.
c65874dd-1eec-4b5f-82f6-887a0eae7219
Fothergill-Misbah, Natasha
22e115ca-ec36-4468-86f1-c781dcaf2c51
Hooker, J.
d0197d8c-b23f-422c-9562-6ec8d8475dac
Kwasa, J.
53ced04f-c61e-400a-9bcb-128118961c3e
Walker, R.
c65874dd-1eec-4b5f-82f6-887a0eae7219

Fothergill-Misbah, Natasha, Hooker, J., Kwasa, J. and Walker, R. (2021) Challenges around end-of-life care for people with Parkinson’s disease in Kenya. Movement Disorders Clinical Practice, 36 (Supplement 1).

Record type: Meeting abstract

Abstract

Objective: To explore how people living with Parkinson’s disease (PwP), and their families, in Kenya negotiate the end of life.

Background: Parkinson’s disease (PD) is a progressive condition that can result in significant pain and suffering towards the end of life. End-of-life care in high-income countries (HICs) often takes place in institutional settings, especially considering the prevalence of comorbidities in advanced PD. Yet few healthcare professionals in Kenya receive any palliative care training, while facilities are lacking [2]. There is limited research exploring end-of-life care for PwP in Kenya, sub-Saharan Africa (SSA), or any low-/middle-income setting.

Method: ethnographic methods comprising interviews and observations took place over 10 months across Kenya. Participants included PwP (N=55), family members (N=23) and healthcare professionals (N=13).

Results: end-of-life care fell on families as hospitals were unaffordable for most and government hospitals had no palliative care facilities. Hope of a miracle recovery through faith/prayer was important for families but could make death more shocking when it came. The study illustrated the societal reluctance to discuss death and dying among families and healthcare professionals due to complex factors at the societal level (cultural “taboo” about death-talk) and individual level (doctors did not want to be seen as “failing” or family members did not want to accept death). Acknowledging that death was near allowed patients to “give up”. Challenges existed around preferred place of death (home, hospice, hospital), which was dependent on social/financial resources, and required improvisation from family and healthcare professionals.

Conclusion: the reluctance to discuss death and dying requires consideration when thinking about end-of-life care for PD in SSA. Palliative care requires an acceptance that the end is near and awareness of the proximity of death, although in Kenya, this was perceived as antithetical to care. Perhaps ‘palliative care’ in its current form needs repackaging in Kenya if doctors are to be equipped with the necessary skills to deliver effective end-of-life care. Initiating discussions around death/dying and normalising death talk could improve acceptance. Findings also provide insights into inequalities in access to care for PwP from BAME groups living across HICs and avenues to address existing disparities in uptake of palliative services.

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More information

Accepted/In Press date: 17 September 2020
Published date: September 2021

Identifiers

Local EPrints ID: 468238
URI: http://eprints.soton.ac.uk/id/eprint/468238
ISSN: 2330-1619
PURE UUID: 2d5fa8e7-2f52-4069-bc6b-16291b6880cf
ORCID for Natasha Fothergill-Misbah: ORCID iD orcid.org/0000-0002-1192-6250

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Date deposited: 08 Aug 2022 16:44
Last modified: 17 Mar 2024 04:09

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Contributors

Author: J. Hooker
Author: J. Kwasa
Author: R. Walker

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