Browsing by Author "Luyirika, Emmanuel B. K."

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    Cross Cultural Adaptation and Cognitive Testing of a Psycho-Social-Spiritual Healing Measure, the NIH Healing Experiences in All Life Stressors-NIH-HEALS
    (Global advances in health and medicine, 2022) Namisango, Eve; Luyirika, Emmanuel B. K.; Berger, Ann
    Cancer is associated with trauma and stress which impacts the physical, psychological, and spiritual/existential well-being of patients. Psychological/behavioral healing may help alleviate this distress and the associated health-related suffering. Psycho-Social-Spiritual healing outcome measures are thus needed to stimulate service development. The NIH Healing Experiences in All Life Stressors (NIH-HEALS), is a novel 35-item measure of psycho-social-spiritual healing, developed in USA and is yet to be validated and adapted for use in African countries.This study aimed to assess the face and content validity of the NIH-HEALS in the population of cancer patients in Uganda and to culturally adapt this measure.Cross-sectional study using cognitive interviewing alongside standard piloting. We recruited adult (18 years and above) patients with advanced cancer from Hospice Africa Uganda. Interviews were conducted in two phases, using the think aloud technique and concurrent probing and were audio recorded. Phase 1 was used to identify initial concerns around clarity of the statements, and phase 2 further explored whether the issues of clarity had been addressed, alongside the standard cognitive interview parameters. The transcripts were imported into NVivo-12 analyzed using the content analysis technique and categorized using Tourengeau’s information processing model.We recruited thirty-five (35) patients: phase one (n = 5) two (n = 30). The median completion time was 20 minutes. Problems identified included comprehension of some statements, words, and phrases, suggestions to include local examples, highlighting of potentially sensitive statements that lean towards difficult conversations, and some cultural differences in the construction of the “Trust and Acceptance” construct, our sample showed less emphasis on family/friend relations. This feedback was used to adapt the NIH-HEALS for the local context.The NIH-HEALS has sufficient face and content validity properties to be used among palliative cancer patients in Uganda. We propose some changes to inform the adaptation of this measure for the local context.
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    Status of Palliative Oncology Care for Children and Young People in Sub-Saharan Africa: A Perspective Paper on Priorities for New Frontiers
    (JCO Global Oncology, 2021) Namisango, Eve; Bhakta, Nickhill; Kibudde, Solomon; Luyirika, Emmanuel B. K.; Mulema, Vivienne; Baker, Justin N.
    The burden of cancer disproportionately affects low- and middle-income countries. Low 5-year survival figures for children with cancer in low-income countries are due to late presentation at diagnosis, treatment abandonment, absence of sophisticated multidisciplinary care, and lack of adequate resources. The reasons for late presentation are partly due to limited awareness of cancer symptoms, high treatment costs, and facility-level barriers to timely access to treatment. Given the systemic challenges, the regional need for palliative oncology care for children care is high. Despite the enormity of the need for palliative oncology for children with cancer in Africa, its level of development remains poor. This paper presents the evidence on the status of palliative oncology care for children in sub-Saharan Africa.
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    Strengthening Pharmaceutical Systems for Palliative Care Services in Resource Limited Settings: Piloting A mHealth Application across a Rural and Urban Setting in Uganda
    (BMC palliative care, 2016) Namisango, Eve; Ntege, Chris; Luyirika, Emmanuel B. K.; Kiyange, Fatia; Allsop, Matthew J.
    Medicine availability is improving in sub-Saharan Africa for palliative care services. There is a need to develop strong and sustainable pharmaceutical systems to enhance the proper management of palliative care medicines, some of which are controlled. One approach to addressing these needs is the use of mobile technology to support data capture, storage and retrieval. Utilizing mobile technology in healthcare (mHealth) has recently been highlighted as an approach to enhancing palliative care services but development is at an early stage.An electronic application was implemented as part of palliative care services at two settings in Uganda; a rural hospital and an urban hospice. Measures of the completeness of data capture, time efficiency of activities and medicines stock and waste management were taken pre- and post-implementation to identify changes to practice arising from the introduction of the application.Improvements in all measures were identified at both sites. The application supported the registration and management of 455 patients and a total of 565 consultations. Improvements in both time efficiency and medicines management were noted. Time taken to collect and report pharmaceuticals data was reduced from 7 days to 30 min and 10 days to 1 h at the urban hospice and rural hospital respectively. Stock expiration reduced from 3 to 0.5 % at the urban hospice and from 58 to 0 % at the rural hospital. Additional observations relating to the use of the application across the two sites are reported.A mHealth approach adopted in this study was shown to improve existing processes for patient record management, pharmacy forecasting and supply planning, procurement, and distribution of essential health commodities for palliative care services. An important next step will be to identify where and how such mHealth approaches can be implemented more widely to improve pharmaceutical systems for palliative care services in resource limited settings.