Current State of Palliative Care in Uganda

Namukwaya, Elizabeth; Mwaka, Amos Deogratius; Namisango, Eve; Mwesiga, Donald Mark; Downing, Julia

doi:10.1007/978-3-030-54526-0_24

Cited by 6 publications

(7 citation statements)

References 20 publications

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“…Pain control was the strongest correlate of better quality of dying in this study, as in the Kenyan study, 14 reinforcing the need to improve accessibility to effective pain management near the end of life. 4 , 8 Other correlates of better quality of dying included energy, control, being at peace with and unafraid of dying, lack of worry about burdening loved ones, and being able to laugh and smile. Although several of these concerns were also correlates of quality of dying in Kenyan patients, the Kenyan study more notably indicated that all symptom-related items were associated with quality of dying.…”

Section: Discussionmentioning

confidence: 99%

“…Both facilities provide pain and symptom management, psychosocial and spiritual support, and bereavement support and are among the 13 facilities providing most community-/home-based palliative care services in Uganda. 8 KMH offers mobile and home-based care and care to inpatients at Kitovu Hospital; HAU, a multisite hospice, offers outpatient and day care as well as home-based care. 8 …”

Section: Methodsmentioning

confidence: 99%

“… 8 KMH offers mobile and home-based care and care to inpatients at Kitovu Hospital; HAU, a multisite hospice, offers outpatient and day care as well as home-based care. 8 …”

Section: Methodsmentioning

confidence: 99%

“…5 Barriers include the lack of public and professional awareness of palliative care, lack of trained palliative care providers, geographical distances from hospitals and hospices and transportation costs, shortages of morphine and other essential medications, and limited government funding for palliative care. 6 - 8 Assessing the quality of dying and death in patients with advanced cancer who receive hospice care in Uganda can identify gaps in end-of-life care that require attention.…”

Section: Introductionmentioning

confidence: 99%

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Quality of Dying and Death of Patients With Cancer in Hospice Care in Uganda

Mah

Namisango

Luyirika

et al. 2023

JCO Global Oncology

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PURPOSE Despite advances in palliative care in Uganda, there has been relatively little recent patient-centered research investigating end-of-life outcomes in this region. We assessed the quality of dying and death of patients with cancer in hospice care in Uganda. METHODS Bereaved caregivers of patients who received hospice care in Uganda and died 2-12 months earlier (N = 201) completed the Quality of Dying and Death Questionnaire, which includes 31 items and single-item ratings of overall quality of dying and moment of death, and the FAMCARE measure of family satisfaction with cancer care. RESULTS Caregivers reported low-intermediate overall quality of dying (mean [M] standard deviation [SD], 3.25 [2.98]) and overall quality of moment of death (M [SD], 3.59 [3.51]), with 47.0% of the ratings of these two outcomes in the poor range, but the mean family satisfaction with care was high (M [SD], 77.75 [10.26]). Most Quality of Dying and Death Questionnaire items (74.2%) were rated within the intermediate range. Items rated within the good range were religious-spiritual, interpersonal, and personal facets; two items within the poor range reflected physical functioning. Overall quality of dying was most strongly correlated with pain control (Spearman's rho [rs] = 0.45, P < .001), and overall quality of moment of death with state of consciousness before death and being unafraid of dying (rs = 0.42, P < .001). The FAMCARE score was not correlated with overall quality of dying or moment of death ( P = .576-.813). Only one FAMCARE item, information on managing patient's pain, was correlated with overall quality of moment of death (rs = –0.19, P = .008). CONCLUSION End-of-life care in hospices in Uganda requires further improvement, particularly with regard to symptom control. Patient-centered data could bolster advocacy efforts to support quality improvement of palliative care in this and other countries.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

“… 8 KMH offers mobile and home-based care and care to inpatients at Kitovu Hospital; HAU, a multisite hospice, offers outpatient and day care as well as home-based care. 8 …”

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Quality of Dying and Death of Patients With Cancer in Hospice Care in Uganda

Mah

Namisango

Luyirika

et al. 2023

JCO Global Oncology

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“…Of the 44 countries in SSA assessed in 2017, 27 had some level of palliative care provision (with most reporting very isolated and limited provision), and 17 countries had no provision [10]. When present, palliative care is typically delivered through government-funded inpatient care and outpatient clinics [11] or through donor-funded standalone palliative care organisations [12]. Whilst significant progress has been made in developing palliative care services across SSA [13], less than 10% of people who could benefit from palliation are able to access it [14].…”

Section: Introductionmentioning

confidence: 99%

Remote Symptom Monitoring to Enhance the Delivery of Palliative Cancer Care in Low-Resource Settings: Emerging Approaches from Africa

Salako,

Enyi,

Miesfeldt

et al. 2023

IJERPH

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This paper brings together researchers, clinicians, technology developers and digital innovators to outline current applications of remote symptom monitoring being developed for palliative cancer care delivery in Africa. We outline three remote symptom monitoring approaches from three countries, highlighting their models of delivery and intended outcomes, and draw on their experiences of implementation to guide further developments and evaluations of this approach for palliative cancer care in the region. Through highlighting these experiences and priority areas for future research, we hope to steer efforts to develop and optimise remote symptom monitoring for palliative cancer care in Africa.

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The quality of death and dying of patients with advanced cancer in hospice care in Uganda and Kenya

Goombs,

Mah,

Namisango

et al. 2023

Pall Supp Care

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Objectives Minimal information is available about the quality of dying and death in Uganda and Kenya, which are African leaders in palliative care. We investigated the quality of dying and death in patients with advanced cancer who had received hospice care in Uganda or Kenya. Methods Observational study with bereaved caregivers of decedents (Uganda: n = 202; Kenya: n = 127) with advanced cancer who had received care from participating hospices in Uganda or Kenya. Participants completed the Quality of Dying and Death questionnaire and a measure of family satisfaction with cancer care (FAMCARE). Results Quality of Dying and Death Preparation and Connectedness subscales were most frequently rated as good to almost perfect for patients in both countries (45.5% to 81.9%), while Symptom Control and Transcendence subscales were most frequently rated as intermediate (42.6% to 60.4%). However, 35.4% to 67.7% of caregivers rated overall quality of dying and overall quality of death as terrible to poor. Ugandan caregivers reported lower Preparation, Connectedness, and Transcendence (p < .001). Controlling for covariates, overall quality of dying was associated with better Symptom Control in both countries (p < .001) and Transcendence in Uganda (p = .010); overall quality of death, with greater Transcendence in Uganda (p = .004); and family satisfaction with care, with better Preparation in Uganda (p = .004). Significance of results Findings indicate strengths in spiritual and social domains of the quality of dying and death in patients who received hospice care in Uganda and Kenya, but better symptom control is needed to improve this outcome in these countries.

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Current State of Palliative Care in Uganda

Cited by 6 publications

References 20 publications

Quality of Dying and Death of Patients With Cancer in Hospice Care in Uganda

Quality of Dying and Death of Patients With Cancer in Hospice Care in Uganda

Remote Symptom Monitoring to Enhance the Delivery of Palliative Cancer Care in Low-Resource Settings: Emerging Approaches from Africa

The quality of death and dying of patients with advanced cancer in hospice care in Uganda and Kenya

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