Mobile devices in palliative care services: a methodological approach to identifying use and implementation

The use of mobile devices is developing in palliative care services, promising enhancements to patient care and service delivery. However, mobile device use is not well documented in the research literature even though it is necessary to understand how its use is developing in the medical field. Therefore, an online survey was developed in English, French and Arabic and distributed across palliative care providers in the 33 out of 54 countries in Africa where palliative care services are present. The survey gathered information about the service provided where a respondent was based, and a framework was presented to respondents documenting the different stages of palliative care delivery (ie, diagnosis, referral, up to bereavement care). For each stage of delivery, participants were asked to outline how they currently use mobile devices and to specify any perceived barriers and benefits to mobile device development at their site, alongside thoughts on priorities for future research development. The results of this survey, and the priorities it indicates, will be presented

Health and economic impact of caregiving on informal caregivers of people with chronic diseases in sub-Saharan Africa: A systematic review

With a disproportionate burden of chronic diseases and severe shortage of health workers in sub-Saharan Africa, the region implicitly relies on informal caregivers (ICGs) to support the patients both within and outside the health facilities. The aim of this review is to systematically summarise evidence on the health and economic impact of caregiving on informal caregivers of patients with chronic diseases in sub-Saharan Africa. Medline (Ovid), CINAHL (EBSCOhost), PsycINFO (Ovid), Embase (Ovid), Global Health, and Web of Science databases were systematically searched to identify original articles that considered the economic and/or health impacts of caregiving in sub-Saharan Africa. The results from the included studies were synthesised narratively. After screening 4,951 records, 47 studies were included for synthesis. The articles were from all sub-regions of sub-Saharan Africa with more than half (25/47) of the studies focussing on caregivers for patients with cancer. Although the primary motivation for becoming caregivers was love and responsibility, the caring responsibilities described in twenty studies, had profound effects on the caregiver's lives. Healthwise, the informal caregivers experienced changes in their physical and mental health like developing musculoskeletal problems and depression. Economically, caregiving was expensive, and financially draining. The opportunity cost of caregiving included loss of jobs, loss of income, foregoing planned important activities and missed education opportunities. Informal caregivers reported a range of mainly negative health and economic effects of the work they do. Health care systems should consider how to better support caregivers in terms of their own physical and mental wellbeing. Also, governments should develop strategies to financially support informal caregivers

Towards person-centered quality care for children with life-limiting and life-threatening illness: self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study

Abstract Background: Paediatric life-limiting and life-threatening conditionslife-limiting conditions place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns. Aim: This study aimed to identify the symptoms, concerns, and other outcomes that matter to children with life-limiting conditions and their families in sub-Saharan Africa.Setting and participants: Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children/caregivers of children aged 0-17 years with life-limiting conditions were purposively sampled by age, sex, and diagnosis. Children aged 7 and above self-reported; caregiver proxies reported for children below 7 and those aged 7 and above unable to self-report.Results: 120 interviews were conducted with children with life-limiting conditions (n=61 age range 7-17 years), and where self-report was not possible caregivers (n=59) of children (age range 0-17). Conditions included advanced HIV (22%), cancer (19%), heart disease (16%) endocrine, blood and immune disorders (13%), neurological conditions (12%), sickle cell anaemia (10%) and renal disease (8%). Outcomes identified included: physical concerns – pain and symptom distress; psycho-social concerns – family and social relationships, ability to engage with age-appropriate activities (e.g., play, school attendance); existential concerns – worry about death, and loss of ambitions,health care quality– child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age.Conclusion: This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation

APCA Atlas of Palliative Care in Africa

BACKGROUND Since Wright & Clark’s book on palliative care in Africa in 2006, there has not been a comprehensive overview describing the state of palliative care development in African countries. AIMS To describe the current state of palliative care (PC) development in Africa according to the WHO’s Public Health Strategy for integrating PC: policies, availability and access to medicines, education, and service provision. METHODS Qualitative interviews were conducted with 16 Country Experts (March-August 2016). From those interviews, 367 indicators were derived, 130 after exclusion criteria and content analysis were performed. The Country Experts rated the indicators for validity & feasibility, a 14-member international committee of experts participated in a two-round modified UCLA-RAND Delphi consensus, and the co-authors (November-December 2016) ranked the indicators. The final 19 indicators were further defined and sent to 66 Key Country Informants from 51 African countries (January-March 2017). RESULTS Surveys were received from 89% (48/54) of African countries. Uganda, South Africa, and Kenya have the highest number of specialised hospice and PC services (71% of identified PC services); 19% (9/48) have no identified hospice and PC services. 22% (12/48) indicated having stand-alone PC policies, and 42% (20/48) reported having a dedicated person for PC in the Ministry. Zambia, Uganda, South Africa, Kenya, Ghana, and Egypt reported some official form of physician accreditation. Opioid consumption per capita was low (75% countries had <1 mg consumption/capita/year) compared to the global average (43mg/capita/year), with highest consumption in Mauritius, South Africa, Namibia, and Morocco. 54% (26/48) reported having a national PC association. CONCLUSIONS This study shows that there is limited PC development in Africa, but there is also a significant improvement in the number of countries with hospice and PC services, compared to previous reports. Improvements in advocacy were identified, with more than half of countries reporting a national PC association. Governments need to take the steps to improve education, increase the number of services, and ensure safe access to opioids

Understanding data and information needs for palliative cancer care to inform digital health intervention development in Nigeria, Uganda and Zimbabwe: protocol for a multicountry qualitative study

Introduction: Palliative care is a clinically and cost‐effective component of cancer services in sub-Saharan Africa (SSA). Despite the significant need for palliative cancer care in SSA, coverage remains inadequate. The exploration of digital health approaches could support increases in the quality and reach of palliative cancer care services in SSA. However, there is currently a lack of any theoretical underpinning or data to understand stakeholder drivers for digital health components in this context. This project addresses this gap through engaging with key stakeholders to determine data and information needs that could be supported through digital health interventions. Methods and analysis: This is a multicountry, cross-sectional, qualitative study conducted in Nigeria, Uganda and Zimbabwe. In-depth interviews will be conducted in patients with advanced cancer (n=20), caregivers (n=15), health professionals (n=20) and policy-makers (n=10) in each of the three participating countries. Data from a total of 195 interviews will transcribed verbatim and translated into English before being imported into NVivo software for deductive framework analysis. The analysis will seek to understand the acceptability and define mechanisms of patient-level data capture and usage via digital technologies. Ethics and dissemination: Ethics approvals have been obtained from the Institutional Review Boards of University of Leeds (Ref: MREC 18–032), Research Council of Zimbabwe (Ref: 03507), Medical Research Council of Zimbabwe (Ref: MRCZ/A/2421), Uganda Cancer Institute (Ref: 19–2018), Uganda National Council of Science and Technology (Ref: HS325ES) and College of Medicine University of Lagos (Ref: HREC/15/04/2015). The project seeks to determine optimal mechanisms for the design and development of subsequent digital health interventions to support development, access to, and delivery of palliative cancer care in SSA. Dissemination of these findings will occur through newsletters and press releases, conference presentations, peer-reviewed journals and social media. Trial registration number: ISRCTN1572771

Project OPUS: Development and evaluation of an electronic platform for pain management education of medical undergraduates in resource-limited settings

Introduction Pain is a very frequent symptom that is reported by patients when they present to health professionals but remains undertreated or untreated, particularly in low-resource settings including Nigeria. Lack of training in pain management remains the most significant obstacle to pain treatment alongside an inadequate emphasis on pain education in undergraduate medical curricula, negatively impacting on subsequent care of patients. This study aimed to determine the effect of a 12-week structured e-Learning course on the knowledge of pain management among Nigerian undergraduate medical students. Methods Prospective, multisite, pre-post study conducted across five medical colleges in Nigeria. Structured modules covering aspects of pain management were delivered on an e-Learning platform. Pre- and post-test self-assessments were carried out in the 12-week duration of the study. User experience questionnaires and qualitative interviews were conducted via instant messaging to evaluate user experiences of the platform. User experience data was analysed using the UEQ Data Analysis Tool and Framework Analysis. Results A total of 216 of 659 eligible students completed all sections of the e-Learning course. Participant mean age was 23.52 years, with a slight female predominance (55.3%). Across all participants, an increase in median pre- and post-test scores occurred, from 40 to 60 (Z = 11.3, p<0.001, effect size = 1.3), suggestive of increased knowledge acquisition relating to pain management. Participants suggested e-Learning is a valuable approach to delivering pain education alongside identifying factors to address in future iterations. Conclusion e-Learning approaches to pain management education can enhance traditional learning methods and may increase students’ knowledge. Future iterations of e-Learning approaches will need to consider facilitating the download of data and content for the platform to increase user uptake and engagement. The platform was piloted as an optional adjunct to existing curricula. Future efforts to advocate and support integration of e-Learning for pain education should be two-fold; both to include pain education in the curricula of medical colleges across Nigeria and the use of e-Learning approaches to enhance teaching where feasible. Methods: Prospective, multisite, pre-post study conducted across five medical colleges in Nigeria. Structured modules covering aspects of pain management were delivered on an e-Learning platform. Pre- and post-test self-assessments were carried out in the 12-week duration of the study. User experience questionnaires and qualitative interviews were conducted via instant messaging to evaluate user experiences of the platform. User experience data was analysed using the UEQ Data Analysis Tool and Framework Analysis. Results: A total of 216 of 659 eligible students completed all sections of the e-Learning course. Participant mean age was 23.52 years, with a slight female predominance (55.3%). Across all participants, an increase in median pre- and post-test scores occurred, from 40 to 60 (Z=11.3, p<0.001, effect size=1.3), suggestive of increased knowledge acquisition relating to pain management. Participants suggested e-Learning is a valuable approach to delivering pain education alongside identifying factors to address in future iterations. Conclusion: e-Learning approaches to pain management education can enhance traditional learning methods and may increase students’ knowledge. Future iterations of e-Learning approaches will need to consider facilitating the download of data and content for the platform to increase user uptake and engagement. The platform was piloted as an optional adjunct to existing curricula. Future efforts to advocate and support integration of e-Learning for pain education should be two-fold; both to include pain education in the curricula of medical colleges across Nigeria and the use of e-Learning approaches to enhance teaching where feasible

Implementation of child-centred outcome measures in routine paediatric healthcare practice: a systematic review

BACKGROUND: Person-centred outcome measures (PCOMs) are commonly used in routine adult healthcare to measure and improve outcomes, but less attention has been paid to PCOMs in children’s services. The aim of this systematic review is to identify and synthesise existing evidence of the determinants, strategies, and mechanisms that influence the implementation of PCOMs into paediatric healthcare practice. METHODS: The review was conducted and reported in accordance with PRISMA guidelines. Databased searched included CINAHL, Embase, Medline, and PsycInfo. Google scholar was also searched for grey literature on 25th March 2022. Studies were included if the setting was a children’s healthcare service, investigating the implementation or use of an outcome measure or screening tool in healthcare practice, and reported outcomes relating to use of a measure. Data were tabulated and thematically analysed through deductive coding to the constructs of the adapted-Consolidated Framework for Implementation Research (CFIR). Results were presented as a narrative synthesis, and a logic model developed. RESULTS: We retained 69 studies, conducted across primary (n = 14), secondary (n = 13), tertiary (n = 37), and community (n = 8) healthcare settings, including both child self-report (n = 46) and parent-proxy (n = 47) measures. The most frequently reported barriers to measure implementation included staff lack of knowledge about how the measure may improve care and outcomes; the complexity of using and implementing the measure; and a lack of resources to support implementation and its continued use including funding and staff. The most frequently reported facilitators of implementation and continued use include educating and training staff and families on: how to implement and use the measure; the advantages of using PCOMs over current practice; and the benefit their use has on patient care and outcomes. The resulting logic model presents the mechanisms through which strategies can reduce the barriers to implementation and support the use of PCOMs in practice. CONCLUSIONS: These findings can be used to support the development of context-specific implementation plans through a combination of existing strategies. This will enable the implementation of PCOMs into routine paediatric healthcare practice to empower settings to better identify and improve child-centred outcomes. TRIAL REGISTRATION: Prospero CRD 42022330013

A longitudinal cohort study of symptoms and other concerns among Nigerian people with stages 3–5 chronic kidney diseases: study protocol

Background: The burden of symptoms and other concerns in chronic kidney disease (CKD) is known to be high, adversely affecting the quality of life of the growing number of those with this condition in developing countries. In this paper, we describe the protocol of a longitudinal observational study among people living with CKD. The study is developed to assess the bio-psychosocial factors associated with palliative care symptoms and concerns, and pattern of health services usage among Nigerians with stages 3–5 CKD. The overall objective is to establish the evidence-base for advocacy and policy formulation, treatment guidelines, care and services, and future clinical trial studies.Methods: This is a multi-center study to investigate the longitudinal course of symptoms and other concerns among patients with stages 3–5 CKD in Nigeria. Interviewer administered and self-report measures at baseline (T0) and 3-month (T1) address socio-demographic characteristics, clinical-illness related information, palliative care-related symptoms and other concerns, pattern of formal or informal service usage, and bio psychosocial measures including estimated glomerular filtration rate (eGFR), anxiety, depression, quality of life, functioning, social support and spiritual wellbeing.Discussion: This study represents the first longitudinal investigation of palliative care symptoms and concerns among people with CKD in Nigeria. It includes early stages of CKD in compliance with best practices, and a comprehensive range of bio-psychosocial outcomes to understand how these factors are associated with symptoms. This study will provide evidence for how best to integrate palliative care into management of CKD to improve care and quality of life of people with CKD. The study team welcomes collaborations with both national and international researchers