African Palliative Care Association

About a decade after the introduction of palliative care teaching for undergraduate nurses and medical students in Uganda, it is unclear to what extent the course impacts students' understanding, perceptions and orientation to deliver palliative and end-of-life care. To (1) explore final-year nursing and medical students' knowledge and perceptions of palliative and end-of-life care, (2) examine students' orientation and perceived self-efficacy to provide palliative and end-of-life-care. A multicentre exploratory qualitative study. A total of 82 undergraduate nursing and medical students were selected from seven medical and nursing schools in Uganda. Data were collected through 10 face-to-face focus group discussions using a pilot-tested interview guide and analysed using inductive thematic analysis. Five master themes emerged: (1) Palliative care as a concept with multiple meanings, (2) Misinformation about palliative care, opiates and pain management, (3) Students' experiences of the course, (4) Dilemmas in knowledge and action, and (5) Palliative and end-of-life care as emotional labour. Participants generally had inadequate and varied understanding of, and very few demonstrated low willingness and limited confidence to provide, palliative and end-of-life care. They blamed this mainly on the huge emotional labour of palliative/end-of-life care and inadequate teaching and/or limited clinical exposure.

ABSTRACT Several systematic reviews have been published on psychosocial care interventions (PCIs) in cancer care. However, there are limited systematic reviews and meta-analyses (SRMA) on the effectiveness of PCIs in cancer care for adults patients in low- and-middle income countries (LMICs). This study aimed at synthesizing the available evidence on the effectiveness of PCI in improving the quality of life (QoL) of adult cancer patients in LMICs. We registered the protocol with PROSPERO (ID: CRD4202342156) before conducting this SRMA. Studies published between 2002 and 2023 were searched from MEDLINE, Web of Science, EmBASE and APA PsycINFO. We followed the standard guidelines for Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Results of the pooled studies were analysed using MedCalc version 10.10 statistical software. Twenty-six intervention studies were included in this SRMA. The Eastern Mediterranean WHO region had the highest number of studies and Africa region had the least. Most studies utilised Cognitive Behavioural therapy-related interventions (38%, n = 10 studies), while Family systems therapy 4% (n = 1) was the least utilised. From the subgroup analyses of the means and standard deviations of domains of QoL in the pooled primary studies, the respective standardized mean differences indicated that the PCIs had a significant positive effect on the physical (0.972: p = 0.002), social (0.884: p = 0.005) and psychological (0.590: p = 0.03) domains of QoL of adult cancer patients. However, some PCIs did not improve the QoL of study participants. Generally, PCIs effectively improved most domains of the QoL of adult cancer patients. However, more research is needed for PCIs that had a negative effect on some domains of the QoL of cancer patients. Lastly, there is need for LMICs to prioritise resources to strengthen the integration of psychosocial care interventions in cancer care to meet the different QoL sub-domains of patients with cancer.

The Kochi Declaration 2024 (resulting from the International Leadership Summit of Medical Associations) marks a significant step in global TB elimination efforts. By emphasising private sector engagement, it addresses critical gaps in TB care delivery, particularly in high-burden countries where 60%–80% of patients initially seek care from private providers. This initiative aligns with the WHO’s public–private mix approach, enhancing case detection, treatment quality, and global health equity. It underscores the potential of collaborative strategies to accelerate progress towards a TB-free world by 2030, aligning with United Nations High-Level Meeting targets and broader global health goals.

Although COVID-19 prevention measures played an important role in containing the pandemic, they had unintended consequences especially among vulnerable populations. This formative research sought to explore the impact of COVID-19 on women and youth in the Nakivale Refugee Settlement (NRS), Uganda. In this mixed-methods study, we administered surveys to 258 women and youth aged 15–35 years from NRS to capture data including food insecurity, asset index, financial support and social support. We conducted four focus group discussions (FGDs) with 40 purposively selected participants composed of women, youth and leaders. Quantitative data were descriptively analysed using STATA 13. Qualitative data were analysed using thematic analysis. Participants reported severe food insecurity ( n = 242, 90%), probable depression ( n = 129, 50%), low social-economic status ( n = 136, 54%), loss of employment/income ( n = 204, 79%), saving ( n = 203, 78%), assets ( n = 202, 78%) and financial support ( n = 210, 81%). Results from FGDs indicate that COVID-19 resulted in significant losses in human, social, natural, physical and financial capital among refugee women and youth. Future emergency response strategies should be designed based on the differentiated needs of vulnerable women and youth focusing on ensuring continuous access to essential services such as inclusive and gender-sensitive access to health, education and livelihood services.

ABSTRACTObjective To identify modifiable intensive care unit factors associated with outcomes among patients receiving invasive mechanical ventilation in a low-income setting.Methods This prospective, multicenter, registry-embedded observational study has two components: a prospective registry-based cohort assessing patient- and care-process-related factors and a cross-sectional intensive care unit survey evaluating organizational structure. Functional intensive care units in Uganda will be included. Patients aged ≥ 15 years old requiring invasive mechanical ventilation will be enrolled. Patients extubated within 48 hours, transferred after > 24 hours, and imminent early death will be excluded. Primary outcomes will include 28-day intensive care unit mortality, intensive care unit length of stay, and mechanical ventilation duration. Tracheostomy-related outcomes will be explored in a pre-planned sub-study. Factors potentially associated with outcomes will be categorized into non-modifiable and potentially modifiable factors. Non-modifiable factors will include patient-related factors like age, comorbidities, and illness severity; potentially modifiable factors include processes of care (e.g., sedation levels) and intensive care unit organizational structure (e.g., staffing patterns). Multilevel multivariable logistic regression models will assess association outcomes. Survival analysis (Kaplan-Meier curves) will explore mortality trends. Confounders will be identified using directed acyclic graphs.Results (anticipated findings) This study will generate high-quality data on modifiable intensive care unit factors associated with ventilated patient outcomes in low-resource settings.Conclusion This is Uganda’s first registry-embedded, multicenter intensive care unit study to systematically potentially modifiable factors associated with ventilated patient outcomes. This study will provide evidence-based insights to optimize critical care management in low- and middle-income countries by leveraging real-time intensive care unit registry data.

BackgroundOutcome measurement is pivotal to person-centred assessment, quality improvement and research. Children and young people with life-limiting and -threatening illness have high needs and service use, yet there is a lack of evidence for interventions and care models. Efforts to strengthen paediatric palliative care (PPC) services has been hampered by the lack of an appropriate outcome measure.ObjectiveTo determine the validity, reliability, measurement invariance, responsiveness, acceptability, and interpretability properties of the novel Children’s Palliative care Outcome Scale (C-POS).MethodsWe recruited children (0–17 years) with life-limiting/life threatening conditions and their families in Kenya, Uganda and South Africa. Using C-POS repeated measurement using over four timepoints. We assessed: 1) construct validity (structural properties, discriminant validity, known groups validity, measurement invariance, differential item functioning by country), 2) reliability (internal consistency and test re-test), 3) responsiveness, 4) acceptability (time to complete) and 5) interpretability.ResultsWe recruited a cohort of 434 children (response rate 94%). Of these, 302 participated in the repeated measures component and 279 (92%) completed four datapoints.We found evidence for face and content validity as the C-POS items mapped on to themes developed from qualitative interviews, including: pain and other symptoms, pyscho-social well-being, and family wellbeing that matter to children and their families. We confirmed: 1) the two-factor structure (child and family subscales). We also confirmed discriminant and known groups validity, as well as construct equivalence for the child self-report and proxy versions. Controlling for age, we found no differential item functioning by country setting. 2)The sub-scale internal consistency was moderate, given the multi-dimensional nature of the C-POS self and proxy report versions omega scores (0.67 and 0.73, respectively). The test characteristic curve information confirmed the moderate internal subscale consistency scores between 0.3- 0.9 for the proxy version and 0.3–0.5 for the self-report version. Test–retest reliability was acceptable for all items, with weighted kappa range for scores: self-report (0.43–0.57) and proxy version (0.35–0.64) and family items (0.51–0.71). 3)Responsiveness was demonstrated, except for the feeding item. 4)Median completion time at the last visit was 10 min for both versions with minimal missing data. 5)The minimum important difference was 3 for the self and proxy report versions on a scale of 0–30 and 4 for the child and family scale on a scale of 0–55.Conclusions and relevanceThe C-POS has good psychometric properties. To further improve the measure, we identified items for potential removal, conceptual gaps that should be addressed and domains for which developmental age-appropriate items are needed. C-POS has potential to evaluate and improve person-centred children’s palliative care in research and routine clinical practice.

Abstract Introduction Psychosocial care improves the quality of life (QoL) for cancer patients and their families. A growing body of randomized controlled trials (RCTs) and quasi experimental studies have been published and systematic reviews have been done on psychosocial interventions in cancer care in the recent past, in the low-and-middle income countries (LMICs). However, a quantitative assessment of the effectiveness of psychosocial interventions in cancer care for adults living with cancer in LMICs is missing. This study aimed at synthesizing the available evidence on the effectiveness of psychosocial care interventions towards the improvement of the quality of life of adult patients with cancer in LMICs. Methods We registered the protocol of this study with PROSPERO (ID: CRD4202342156) before conducting this systematic review and meta-analysis of original studies on psychosocial care interventions in cancer care for adults with cancer in LMICs. Studies published between 1st January 2002 and 31st December 2023 in any LMIC, were searched from various electronic databases which included Ovid MEDLINE (PubMed), Web of Science, EmBASE, APA PsycINFO, and Google Scholar. We followed the standard guidelines for Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA-P) standards. Results Twenty-six RCTs and quasi experimental studies (with 3,878 participants, 1,955 in study arm and 1,923 in control arm) were included in this systematic review and meta-analysis. Sixty-nine percent (n=18) of the included studies were RCTs. The study sizes ranged between 24 and 2140 participants. Most of the included studies (46%) were published between 2016 and 2019. Of the five WHO regions, the Eastern Mediterranean region had the highest number (62%, 18) of the included studies and Africa region has only three studies (1 from Ethiopia and 2 from Nigeria) in this meta-analysis. The biggest number of psychosocial care interventions utilised by the included studies belonged to the Cognitive Behavioural therapy (CBT) (38%, n=10 studies) followed by Mindfulness-based therapy (MBT) with 31% (n=8) with Family systems therapy trailing with 4% (n=1). From the subgroup analyses of the means and standard deviations of domains of quality of life in the pooled primary studies, the respective standardized mean differences (SMD) indicated that the psychosocial care intervention had a significant positive effect on the physical (0.972: p= 0.002), social (0.884: p=0.005) and psychological (0.590: p= 0.03) domains of quality of life of adult patients with cancer. However, the negative SMD for depression (-1.612: p=0.007) and anxiety (-3.313: p= <0.001) domains indicates that the psychosocial care interventions in the primary studies for these domains did not improve the quality of life of study participants. The CBT-related psychosocial care interventions significantly improved in the QoL of adult patients with cancer compared to the interventions that belonged to other models. Conclusion On the overall, psychosocial care interventions effectively improved most domains of the QoL of adult patients with cancer. Future research is needed for those interventions whose findings had negative effect on some domains of the QoL of patients with cancer.

Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. Aim: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. Design: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. Setting/participants: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children’s hospices and n = 12 Commissioners of health services. Results: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage ‘buy-in’ and administering measures with known and trusted professional. Conclusions: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.