Browsing by Author "Downing, Julia"

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    Cancer and palliative care in COVID-19 and other challenging situations— highlights from the Uganda Cancer Institute—Palliative Care Association of Uganda 3rd Uganda Conference on Cancer and Palliative Care, 23–24 September 2021, held in Kampala, Uganda and virtually
    (ecancermedicalscience, 2021-12-13) Downing, Julia; Mwebesa, Eddie; Mutyaba, Innocent; Irumba, Lisa Christine; Nalukwago, Zaitun; Orem, Jackson; Mwesiga, Mark
    The 3rd Uganda Conference on Cancer and Palliative Care was held in September 2021 with the theme: cancer and palliative care in COVID-19 and other challenging situations. It was hosted by the Uganda Cancer Institute and the Palliative Care Association of Uganda (UCI-PCAU). The conference was held virtually, with a mix of pre-recorded sessions, plenary sessions being broadcast live on television (TV) by the Uganda Broadcasting Corporation TV, live speakers at the studio and others presenting in real time via Zoom. The conference brought together >350 participants who participated on Zoom, along with those attending in person at the studio and those watching the plenary sessions on TV. At the heart of this joint UCI-PCAU conference was the commitment to not only continue but to improve the provision of cancer care and palliative care within Uganda. Key themes from the conference included: the importance of Universal Health Coverage; the impact of COVID-19 on the provision of cancer and palliative care; that both cancer care and palliative care are available in Uganda; education for all; the importance of working together to provide care and overcome challenges, e.g. through technology; the resilience shown by those working in cancer and palliative care; the grief experienced by so many people who have lost loved ones during the pandemic; the importance of good health seeking behaviour – prevention is better than cure; the challenge of funding; the need for health care equity for marginalised and vulnerable populations and finally we can’t wait for the world to stop COVID-19 – COVID-19 is here to stay – we need to find solutions. The last few years have seen significant challenges due to the COVID-19 pandemic; however, despite this, cancer and palliative care service provision has continued. This conference, whilst unique and very different from previous conferences, was a great opportunity to share not only amongst each other, but also to share key messages with the public through the live broadcasting of the plenary sessions of the conference.
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    Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children’s Palliative Outcome Scale: A Qualitative Pilot Study
    (Journal of Palliative Medicine, 2021) Friedel, Marie; Boonen, Sabine; Harding, Richard; Downing, Julia; Namisango, Eve; Degryse, Jean-Marie; Aujoulat, Isabelle
    To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS).Instruments in French used to measure outcomes in pediatric palliative care are lacking.After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs.Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region were included in the study. No families refused to participate. All children with verbal capacities chose to be interviewed in the presence of their parents and a PLT member. The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2.The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care.
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    Generating an African Palliative Care Evidence Base: The Context, Need, Challenges, and Strategies
    (Journal of pain and symptom management, 2008) Harding, Richard; Powell, Richard A.; Downing, Julia; Connor, Stephen R.; Mwangi-Powell, Faith; Defilippi, Kath; Cameron, Sue; Garanganga, Eunice; Kikule, Ekiria; Alexander, Carla
    The enormous burden of progressive, incurable disease in sub-Saharan Africa is reflected in the epidemiology of cancer and HIV. However, there has been little research activity and evidence generated to inform appropriate and effective responses. Acollaborative of clinicians, academics and advocates have been active in the design, delivery and reporting of research activites in African palliative care. Here, they report the methodological, ethical, logistic and capacity-based challenges of conducting research in the sub-Saharan context from their experience. A number of strategies and responses are presented.
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    Outcome measurement in paediatric palliative care: lessons from the past and future developments
    (Ann Palliat Med, 2018) Downing, Julia; Namisango, Eve; Harding, Richard
    The need for paediatric palliative care (PPC) globally is great yet there is limited evidence of the quality or outcomes of the care provided. The lack of an outcome measure for PPC has been consistently cited as one reason for the lack of robust evidence in the field. Thus recommendations have been made for the development of locally relevant, validated tools to measure outcomes for children.This paper reviews relevant outcomes and quality measures in PPC, the current state of science on outcome measurement for children and young people (CYP) with life-limiting and life-threatening conditions and the development of the African Children’s Palliative Outcome Scale (C-POS). Lessons learnt from the past are presented before looking ahead at the need for future developments in outcome measures in PPC. A narrative review was undertaken and authors have drawn upon reflective insights from their collective experiences.Outcomes can be measured in a variety of ways, and due to the multi-dimensional nature of PPC, outcomes can be complex and hard to measure. Whilst there are a variety of outcome measures for use in adult palliative care, a similar range of tools does not exist in PPC. Literature reviews have confirmed the absence of a multi-dimensional PPC outcome measurement tool. Following on from their success in developing an outcome scale for adults in Africa, the African Palliative Care Association (APCA) have developed a multi-dimensional outcome tool for PPC—the African C-POS. Tool development and validation followed the COSMIN guidance. The draft C-POS consists of 12 questions, 8 in Section A for the child, and 4 in Section B for the parents/carers. The tool has been developed across eight African countries and is the first specifically designed, multi-dimensional outcome measure for PPC. Lessons have been learnt in the development of outcome scales in palliative care, including those specifically for PPC such as: undertaking research in PPC; the definition of PPC; if you ask a child what their concerns are they will tell you; do you use child and or proxy report? do you have different tools for different ages? what methods of scoring should be used? is it an outcome tool, an assessment tool or both? the length of the outcome measure; the length of time it takes to develop; and, it won’t be perfect. Whilst progress has occurred through the development of the C-POS there is still a long way to go in the development of outcome measures for PPC. Future developments include: finalization and publication of the African C-POS; utilization of the C-POS in clinical practice, research and audit; collation and review of data sets; and the development of C-POS in different settings.The measurement of outcomes in PPC is an imperative. Whilst there are challenges in developing outcome tools and utilizing them in practice, these should not prevent us from advancing the field. The development of the first outcome measure for PPC the African C-POS is a key milestone in the ongoing development and utilization of outcome measures for PPC.
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    Quality of Life and Wellbeing among HIV Outpatients in East Africa: A Multicentre Observational study
    (BMC infectious diseases, 2014) Harding, Richard; Simms, Victoria; Penfold, Suzanne; Downing, Julia; Namisango, Eve; Mwangi-Powell, Faith; Atieno, Mackuline; Higginso, Irene J.
    Global health investment has reduced HIV mortality and transmission. However, little is known of patient-reported outcomes alongside ART rollout. This study aimed to measure wellbeing using patient-reported outcome measures (PROMS) among outpatients at PEPFAR-funded facilities.In a multicentre 2 country cross-sectional study, adults attending 12 facilities in Kenya and Uganda gave self-reported data on quality of life (physical and mental wellbeing dimensions), functional and a measure of multidimensional problems (physical, psychological, social and spiritual).Among the 1,337 participants, multidimensional problems were more common in psychological, spiritual and social domains than in physical. In multivariable analysis using GEE to adjust for facility effect, the mental health subscale of quality of life was lower for people with limited functional status (B = -5.27, 95% CI -5.99, 1. -4.56 p < 0.001) and higher for wealthier people (B = 0.91, 95% CI 0.48, 1.33, p < 0.001). The physical health subscale of quality of life was lower for those with limited functional status (B = -8.58, 95% CI -9.46 to -7.70, p < 0.001) and those who had a caregiver present (B = -1.97, 95% CI -3.72 to -0.23, p = 0.027), higher for wealthier people (B = 1.14, 95% CI 0.65, 1.64, p < 0.001), and positively associated with CD4 count (B = 1.61, 95% CI 1.08-2.14, p < 0.001). Multidimensional problems were more burdensome for people with limited functional status (B = -2.06, 95% CI -2.46 to -1.66, p < 0.001), and less burdensome with more education (B = 0.63, 95% CI 0.25-1.00, p = 0.001) or ART use (B = 0.94, 95% CI 0.34-1.53, p = 0.002).Multidimensional problems are highly prevalent, and worse with declining function. Importantly, ART use does not appear to be protective for self-reported physical and mental dimensions of quality of life. Assessment and management of self-reported wellbeing must form part of HIV care and treatment services to ensure maximum benefit from ART investment.
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    Scaling up availability, accessibility, quality and equity – highlights from the 4th Uganda conference on cancer and palliative care, held in Kampala, Uganda
    (ecancermedicalscience, 2023-11-13) Downing, Julia; Mwebesa, Eddie; Asasira, Judith; Basemera, Bernadette; Adong, Dorothy Olet; Mwesiga, Mark
    The 4th Uganda Conference on Cancer and Palliative Care was held from the 14th–15th September 2023. It was run jointly by the Uganda Cancer Institute and the Palliative Care Association of Uganda, in collaboration with the Ministry of Health. The conference was held at the Speke Resort, Munyonyo and 450 participants came together for a face-to-face conference following the virtual one held in 2021. It was an opportunity for all those working in the fields of cancer and palliative care to come together, to share lessons and learn from each other, as well as celebrate 30 years since specialist palliative care came to Uganda. The conference was officially opened by the Commissioner for Non-Communicable Diseases on behalf of the Minister of Health, who reiterated the Government’s commitment to reducing the burden of cancer and expanding the provision of palliative care within Uganda. Dr Tedros Adhanom Ghebresus, the Director General of the World Health Organization welcomed participants to the conference, and the Assistant Bishop of Kampala Diocese, the Right Reverend Hannington Mutebi shared his experience of living with cancer. The conference was organised into six tracks: Innovations and new technologies; Education, advocacy, policy and law; Health promotion, prevention and early detection; Family and community involvement and empowerment; Clinical care and symptom management; and, Psychological, social and spiritual care. The themes of paediatrics, vulnerable populations, service development and research were integrated throughout the tracks, and workshops were held that explored topics such as governance, access to essential medicines, national data reporting, research and education, and aging and ageism. Throughout the conference there was a sense of optimism, of resilience and a commitment to the ongoing development of cancer and palliative care services within the country.
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    Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcome
    (The Patient-Patient-Centered Outcomes Research, 2019) Namisango, Eve; Bristowe, Katherine; Allsop, Matthew J.; Abas, Melanie; Higginson, Irene J.; Downing, Julia; Harding, Richard
    The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes.This review aims to identify symptoms, concerns and outcomes that matter to children and young people (“young people”) with terminal illnesses and their families. Findings from the systematic review will inform the development of a relevant framework of health outcomes.This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources included PsycINFO, MEDLINE, Embase, CINAHL, OpenGrey, and Science Direct Journals, searched from 1 August 2016 to 30 July 2017. The study also incorporates consultations with experts in the field, citation searches via Scopus, and a hand search of reference lists of included studies.Of the 13,567 articles that were evaluated, 81 studies were included. Most of these studies (n = 68) were from high-income countries and foused on young people with cancer (n = 58). A total of 3236 young people, 2103 family carers, 108 families, and 901 healthcare providers were included in the studies. Young people did not contribute to data in 30% of studies. Themes on priority concerns are presented by the following domains and health outcomes: (1) physical (n = 62 studies), e.g., physical symptoms; (2) psychological (n = 65), e.g., worry; (3) psychosocial (n = 31), e.g., relationships; (4) existential (n = 37), e.g., existential loss; and (5) “other” (n = 39), e.g., information access.Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory; pediatric palliative care should not be limited to the end-of-life phase. A child–family-centered framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future research should address gaps identified across the literature (i.e., the involvement of young people in research, evidence for developing countries, and a focus on nonmalignant conditions.
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    United against cancer: prevention to end-of-life care—highlights from the Uganda Cancer Institute–Palliative Care Association of Uganda Joint International Conference on Cancer and Palliative Care and the 7th Palliative Care Conference, 24–25 August 2017, Kampala, Uganda
    (Ecancermedicalscience, 2017) Downing, Julia; Ddungu, Henry; Kiyange, Fatia; Batuli, Mwazi; Kafeero, James; Kebirungi, Harriet; Kiwanuka, Rose; Mugisha, Noleb; Mwebesa, Eddie; Mwesiga, Mark; Namukwaya, Elizabeth; Niyonzima, Nixon; Phipps, Warren; Orem, Jackson
    The Uganda Cancer Institute (UCI) and the Palliative Care Association of Uganda (PCAU) jointly hosted an international conference oncancer and palliative care in August 2017 in Kampala, Uganda. At the heart of the conference rested a common commitment to see patientcare improved across Uganda and the region. The theme – United Against Cancer: Prevention to End-of-Life Care – reflected this jointvision and the drive to remember that cancer care should include prevention, early diagnosis and screening, treatment, rehabilitation andpalliative care. The conference brought together 451 delegates from 17 countries. The key themes of the conference included: the importanceof the World Health Assembly Resolutions on Palliative Care (2014) and cancer care (2017); the need to develop a National CancerControl Programme; strategies for effective cancer diagnosis and treatment in low- and middle-income countries; advocacy, human rightsand access to essential medicines, including access to opioids and nurse prescribing; paediatric care; leadership and commitment; collaboration;resources (financial and human), the recognition that palliative care is not limited to cancer care and the importance of learningfrom each other. The conference also gave the opportunity to celebrate the 50th Anniversary of the UCI, with a celebration dinner attended by the Minister of Health and the US Ambassador. Participants reported that the conference was a forum that updated them in all aspects of cancer and palliative care, which challenged their knowledge, and was enlightening in terms of current treatment options for individuals with cancer. The benefits of having a joint conference were recognized, allowing for further networking between cancer and palliative care organizations. This conference, highlighting many developments in cancer and palliative care, served as a unique opportunity to bring people together and unite them in developing cancer and palliative care