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Publications (15)126.46 Total impact

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    ABSTRACT: Palliative care-related problems have not been measured in Africa in line with the WHO definition. This study aimed to measure the three-day period intensity of multidimensional problems (physical, psychological, social, and spiritual) among advanced cancer patients in Kenya and Uganda. Adults with advanced malignant disease gave self-report data to the African Palliative Outcome Scale (POS). Among 210 respondents, more than half had an underlying HIV diagnosis (51.9 %). The worst ranked POS items were pain and information. In three multivariable ordinal logistic regression models with the 3 POS factors as dependent variables, for the first model (factor 1 physical and psychological well-being), as age increased, the well-being also improved (B = 0.022, p = 0.037), and as physical function score worsened, factor score also worsened (B = -0.685, p < 0.001). In the second model (factor 2 interpersonal well-being), a trend toward significance was found for gender, with being male predicting a higher (better) factor score (B = 0.502, p = 0.067). For the third model (factor 3 existential and spiritual), increasing age was predictive of higher (better) factor score (B = 0.023, p = 0.032), and worsening function was predictive of lower (worse) factor score (B = -0.543, p < 0.001). This novel data revealed pain and information to plan for the future to affect patients most severely, underlining the importance of analgesia and social support. HIV infection did not affect the level of need. Our data suggest increasing need as function declines; therefore, home-based models with adequate family support are essential.
    Supportive Care Cancer 06/2014; 22(12). DOI:10.1007/s00520-014-2301-5 · 2.50 Impact Factor
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    ABSTRACT: Roughly half a million people die of cancer in sub-Saharan Africa every year. Despite rapid expansion of palliative care for cancer, coverage remains woefully inadequate. The WHO public health strategy for palliative care aims to increase access to palliative care services through its integration into health-care systems. We present the available evidence for the four WHO strategy pillars of policy, education, drug availability, and implementation, and propose a fifth pillar of research activity to stimulate improvement of care. Increased attention to the generation of research evidence is essential to achieve quality and coverage of appropriate palliative care for patients with advanced cancer in sub-Saharan Africa. The use of locally validated, patient-reported outcome measures is an important advance in the measurement and improvement of care and patient wellbeing. Palliative care for patients with cancer in Africa currently receives far less research attention than does palliative care for patients with HIV/AIDS, but in view of projected increasing cancer incidence in the region, generation of local evidence to inform and allow assessment of palliative care for patients with cancer is urgently needed.
    The Lancet Oncology 04/2013; 14(4):e183-8. DOI:10.1016/S1470-2045(12)70396-0 · 24.73 Impact Factor
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    ABSTRACT: WHO expects the burden of cancer in sub-Saharan Africa to grow rapidly in coming years and for incidence to exceed 1 million per year by 2030. As a result of late presentation to health facilities and little access to diagnostic technology, roughly 80% of cases are in terminal stages at the time of diagnosis, and a large proportion of patients have moderate to severe pain that needs treatment with opioid analgesics. However, consumption of opioid analgesics in the region is low and data suggest that at least 88% of cancer deaths with moderate to severe pain are untreated. Access to essential drugs for pain relief is limited by legal and regulatory restrictions, cultural misperceptions about pain, inadequate training of health-care providers, procurement difficulties, weak health systems, and concerns about diversion, addiction, and misuse. However, recent initiatives characterised by cooperation between national governments and local and international non-governmental organisations are improving access to pain relief. Efforts underway in Uganda, Kenya, and Nigeria provide examples of challenges faced and innovative approaches adopted and form the basis of a proposed framework to improve access to pain relief for patients with cancer across the region.
    The Lancet Oncology 04/2013; 14(4):e176-82. DOI:10.1016/S1470-2045(12)70343-1 · 24.73 Impact Factor
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    Anne Merriman
    ecancermedicalscience 01/2013; 7:ed29. DOI:10.3332/ecancer.2013.ed29
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    ABSTRACT: Volunteers in palliative care play a key role, particularly in the hospice setting. The expansion of palliative care into developing countries has been accompanied by the emergence of volunteer workers, who are providing a main source of support and care for patients, many of whom never see a health professional. The aim of this study was to evaluate the motivation for becoming a volunteer and the personal impact of being a palliative care Community Volunteer Worker in Uganda. A qualitative methodology using semi-structured individual and group digitally recorded interviews was adopted for the study. Data were analysed for emerging themes using thematic analysis. Forty-three interviews were undertaken, 32 with Community Volunteer Workers and 11 with the Hospice clinical teams, using semi-structured digitally recorded individual, group and focus group interviews at the Hospice Africa sites in Uganda. The results identified the cultural wish to help people as a key motivator in becoming a volunteer. Additionally, the volunteers reported having a sense of pride in their volunteering role, and this role had a positive impact on their perceived status in their local community. This model of volunteering is clearly having an impact on the volunteers, both personally and also in terms of how they are treated in their communities. Further research to explore the long-term personal benefits of being a palliative care volunteer is recommended.
    Palliative Medicine 09/2011; 26(5):753-9. DOI:10.1177/0269216311413628 · 2.85 Impact Factor
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    ABSTRACT: In Africa, the need for palliative care provision is escalating with an increasing number of people living with HIV/AIDS, coupled with rising cancer and AIDS-related cancer diagnoses. In Uganda there is a shortage of doctors, particularly in rural areas. To address this Hospice Africa Uganda developed a Community Volunteer Programme to train volunteers to help by providing support to patients in their own homes. The aim of this qualitative study was to evaluate the impact of the Community Volunteer Programme. Sixty-four interviews, with patients (21), community volunteer workers (CVWs) (32), and the hospice clinical teams (11) were conducted, using semi-structured digitally recorded individual, group and focus group interviews, at the Hospice Africa Uganda sites. The results reported the value of the Community Volunteer Programme, including the impact on patients and families, and how the CVWs acted as a 'bridge to the hospice' in identifying patients. Developing financial challenges that are emerging which could potentially impact on the programme were reported. The Community Volunteer Programme appears to be having a positive impact on patients, families and the hospice team, and is a model worthy of consideration by other developing countries to allow the expansion of palliative care.
    Palliative Medicine 03/2011; 25(7):706-15. DOI:10.1177/0269216310397566 · 2.85 Impact Factor
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    Anne Merriman, Richard Harding
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    ABSTRACT: Dr Anne Merriman is the founder of Hospice Africa and Hospice Africa Uganda. She is presently Director of Policy and International Programmes. Here she tells the story of how HAU was founded. Dr Richard Harding is an academic researcher working on palliative care in Sub-Saharan Africa. This paper described Dr Merriman's experience in pioneering palliative care provision. In particular it examines the steps to achieving wider availability of opioids for pain management for those with far advanced disease. Hospice Africa Uganda has been a model facility in achieving high quality clinical care embedded in a strategy of advocacy and education, using a multifaceted approach that has addressed logistical, policy and legislative barriers. Until 1990 control of severe pain in Sub-Saharan Africa was non-existent except in Zimbabwe and S Africa. Oral affordable morphine was brought to Kenya through Nairobi Hospice that year, and to Uganda through Hospice Africa Uganda in 1993. This paper offers an example of a highly effective and cost efficient model of care that has transformed the ability to humanely manage the problems of those with terminal illness, and to offer a culturally appropriate "good death". Thus it is now possible to complete the ethical circle of care in resource poor circumstances.
    Philosophy Ethics and Humanities in Medicine 07/2010; 5:10. DOI:10.1186/1747-5341-5-10
  • Anne Merriman
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    ABSTRACT: The development of a home care service from small beginnings in Uganda to becoming a model for African countries is described. This model has proved that palliative care can be adapted to the cultural and economic needs of an African country. The greatest contribution to the success of this programme has been the introduction of affordable oral morphine which can be taken in the home by the patient with the assistance of relatives. With holistic care it is now possible to give the patient the best chance of dying peacefully in the place and with the people they choose. Palliative care has taken root and is included in the current Ugandan 5-Year Health Plan. The integrated education programme ensures that palliative care is embedded in the Ugandan medical curriculum and widens the number of health professionals with knowledge of palliative care. This same programme provides the basis for initiators from other African countries to gain the necessary knowledge and skills.
    Progress in Palliative Care 01/2010; 18(1):18-22. DOI:10.1179/096992610X12624290276106
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    Anne Merriman
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    ABSTRACT: Imagine that you are poor and living in Africa, you develop breast cancer, your country has no oncology service, no prevention, early detection or treatment, and the strongest analgesic is paracetamol. You are lucky just to be found under these circumstances. Th is is the plight of thousands of women and some men in Africa today. And yet to control their pain and symptoms and bring them to peace before the end of life would cost so little. Th e West today sees the breast as a fashion symbol. In my lifetime it has gone from needing to be hidden from all to being fl aunted, pumped up and pumped down according to fashion. A treatise could be written on fashions for breasts in the generations in the developed world. But deep inside, the breast to an African woman is much more than a sexual organ. In Africa it is the life bringing organ that allows a child to survive above 1 year of age. To the woman it makes her attractive to her man. To the man it is sexual and brings the relationship between his wife and his mother into stark reality. But the breast is attached to a woman. A woman with feelings and, in Africa, a need to survive in the world of men. Losing a breast may make her unacceptable to her husband. She may be sent back to her family without her children. And the age for onset of breast cancer is much younger than in the developed world. So, breast cancer in Africa is a huge tragedy. In women it also sometimes occurs during pregnancy, and if the woman is among the 5% who are lucky enough to reach treatment, then they can only have it in the last trimester, when it may be too late (Fig. 1). Uganda In 1993, Uganda was chosen by Hospice Africa as the country in which to place a model hospice, Hospice Africa would reach out to all Africa at a time when only 3 of the 56 countries in Africa had any palliative care. Even today, many in the west still remember the atrocities carried out during the Amin and Obote eras in Uganda’s history. But since 1986, Uganda has developed and grown under the leadership of President Yoweri Museveni. Since 1993, the population has grown from 23 million to 33 million and the prevalence of HIV has been reduced from 30% to 6.7% of the population. HIV has aff ected the incidence and prevalence of cancer. Today, 50% of cancer patients at Hospice Africa Uganda are HIV-positive. Although cancer of the breast is not directly linked with HIV, the rates of all cancers have doubled with the advent of HIV. Although it is diffi cult to get statistics in most African countries for any disease, Uganda has boasted a cancer registry for many years and Hospice Africa Uganda keeps its own statistics. Based in Kampala, the cancer registry is confi ned to one district, Kyandondo, and only records those who reach hospital and have a confi rmed biopsy. Given that 57% of a population never see a health worker and 30% live on less than $2 per day, it is apparent that not only are most cancer cases not recorded but they also never reach any form of health care, so the cancers grow and patients die in severe pain and displaying obvious symptoms witnessed by their grieving families.
    Breast cancer research: BCR 01/2010; 12 Suppl 4:S11. DOI:10.1186/bcr2740 · 5.88 Impact Factor
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    ABSTRACT: Serious illness can cause economic devastation for families. Locally run patient day care programs, or programs for training caregivers for future caregiving employment, could provide a measure of economic resilience. We sought to gather pilot data on the circumstances of informal caregivers and the desirability of such programs. In a convenience sample of patients' informal caregivers (ICs) visiting Hospice Africa Uganda in January 2006, face-to-face, survey interviews in local languages were conducted by hospice volunteers. Sixty-two surveys were completed. Eighty-seven percent of ICs were family members. Frequent needs reported by ICs were financial assistance (89%), free medications (77%), opportunities for income (52%), and caregiver training (44%). Caring for a terminally ill family member pressured ICs to stop attending school (51%), marry (32%), take embarrassing jobs (47%), or take jobs with health risks (42%). If a local day care center existed, 94% of respondents stated they would use it; 80% reported they would consider hiring a caregiver. Barriers to hiring a caregiver included costs (98%), patient preference (54%), and discomfort with a nonrelative caregiver (42%). Importantly, 96% reported interest in becoming a trained and certified caregiver. A minority of respondents felt that paid caregiving would go against their cultural traditions. Most ICs in this survey faced financial and personal hardships. A large majority reported that they would use day care or hired home care for their patients if it existed, and also reported interest in becoming certified, paid caregivers. These data suggest that an economic resilience option for families based on IC training in palliative care might work at Hospice Africa Uganda.
    Journal of palliative medicine 07/2008; 11(5):746-53. DOI:10.1089/jpm.2007.0220 · 2.06 Impact Factor
  • Jack Jagwe, Anne Merriman
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    ABSTRACT: Hospice Africa Uganda introduced palliative medicine to Uganda in 1993 with enough funds to support a team of three clinicians for three months. Training in the medical and nursing schools was introduced in 1994. Since then, Uganda has achieved the three essential components of an effective public health strategy. It has also been the first country to have palliative care described as an essential clinical service and included in both the government's Strategic Health Plan and its HIV/AIDS National Strategic Framework (in 2000 and 2004), and to change the law to allow nurses and clinical officers who complete special training in palliative medicine at Hospice Uganda to prescribe morphine. Palliative care is spreading throughout the districts of Uganda, ensuring that morphine will be available to everyone who needs it. This is being done in collaboration with the Ministry of Health (MOH) and other organizations that collaborate in two umbrella organizations: the Palliative Care Association of Uganda and the Uganda Palliative Care Country Team. The former works "on the ground" in each district, establishing standards, collaborating, and carrying out continuing medical education in palliative care for all. The latter, chaired by the MOH, operates with the government to implement an integrated, coordinated, affordable, and culturally acceptable palliative care service throughout the country.
    Journal of Pain and Symptom Management 06/2007; 33(5):547-51. DOI:10.1016/j.jpainsymman.2007.02.014 · 2.74 Impact Factor
  • Jack Jagwe, Anne Merriman
    Journal of Public Health Policy 02/2007; 28(1):40-1. DOI:10.1057/palgrave.jphp.3200096 · 1.75 Impact Factor
  • Anne Merriman, Manjit Kaur
    The Lancet 06/2005; 365(9475):1909-11. DOI:10.1016/S0140-6736(05)66638-X · 39.21 Impact Factor
  • Anne Merriman, Lydia A Z Mpanga Sebuyira
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    ABSTRACT: This article reviews the analogies between geriatrics and palliative care with practical guidance for setting up programs.
    Clinics in Geriatric Medicine 03/2005; 21(1):57-78, viii. DOI:10.1016/j.cger.2004.09.001 · 3.19 Impact Factor
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    Dingle Spence, Anne Merriman, Agnes Binagwaho
    PLoS Medicine 11/2004; 1(1):e5. DOI:10.1371/journal.pmed.0010005 · 14.00 Impact Factor