ObjectivesPatient involvement in palliative care research is a desirable if challenging goal. Photovoice is an action research method in which affected communities gather photographs to document and discuss their communities’ strengths and concerns. Engagement with policymakers is a separately stated goal. Photovoice is increasingly used in health-related research but has not been widely described in the palliative care literature. We report on experiences and lessons learnt using Photovoice in Blantyre, Malawi to encourage its wider use in research and practice.MethodsThirteen co-researchers (six patients and seven household carers, mean age 47 years) receiving community-based palliative care, attended nine half-day group sessions over a 4-month period. Co-researchers produced, selected and analysed photographs. On completion of data collection, they conducted an advocacy event, including a photographic exhibition, to which media representatives and community leaders were invited.ResultsProcedures to ensure safety of co-researchers and to obtain consent of individuals identified in the photographs were developed during the planning phase. Co-researchers engaged with the Photovoice process with enthusiasm, although frailty and physical disability (poor sight) limited participation for some older adults. Inclusion of palliative care staff within the research team helped to facilitate open dialogue and clinical review where appropriate.ConclusionsIn this Photovoice study, patients and family members receiving palliative care engaged in an exploration of household well-being using photography, participatory analysis and an advocacy event. With appropriate planning, Photovoice can be adapted to a range of settings to enhance patient participation.

BackgroundThe World Health Organisation recognises the importance of palliative care in an African setting. Despite this services are often patchy and inconsistent, and many operate at health centre and/or community level. Few reports from hospital based palliative care services in sub-Saharan Africa exist in the current literature. As part of its activities Tiyanjane Clinic has been providing hospital based palliative care to patients at Queen Elizabeth Central Hospital, a large government tertiary referral institution, in the Southern region of Malawi since 2003, caring for patients with HIV, cancer and other non-malignant palliative diagnoses.MethodsA retrospective review of case notes for all in-patients seen by Tiyanjane Clinic over a six month period (April-Sept 2009) was undertaken.ResultsA total of 177 patients were seen, for whom 137 case notes were available (77%). 58% of patients were male, 42% female. The average age of patients was 39.1 years (range 15-92 years). 54% of patients were HIV positive, with 34% on ARV drugs at the time of care. 42% of patients had HIV related diagnoses, including AIDS defining malignancies, 48% had (non AIDS related) cancers and 9% had other palliative diagnoses. The mean age of patients with HIV related diagnoses was 34 years, for cancer patients it was 48 years. Pain was the most commonly reported symptom (74%), with 56% of patients requiring oral morphine. The mean daily dose of morphine was 30 mg/day (range 9-100 mg). 65% of patients were discharged home, 26% of patients died during admission.ConclusionsThe palliative care population in this setting is relatively young, especially among patients with HIV related diagnoses. HIV and cancer are the main diagnostic groups. Pain is the most commonly reported symptom, with oral morphine frequently required. Health workers require access to and knowledge of oral morphine in order to provide appropriate assistance to patients under their care.

Background Malawi has the highest age standardised rate of cervical cancer in the world. This study describes the presentation, management and short-term outcomes of patients with newly diagnosed cervical cancer at Queen Elizabeth Central Hospital (QECH), in Southern Malawi. Methods All patients with a new diagnosis of cervical cancer presenting to QECH between 1st January-1st July 2015 had demographic data, referral pathway, stage, histology and management prospectively recorded at presentation, and at two months after initial presentation. Results 310 women presented with cervical cancer to QECH and 300 were included (mean age 44.9 years; HIV 47%), representing 8% of the estimated annual number of new presentations in Malawi. Mean age of patients with HIV was 6.9 years younger compared to those without HIV (p<0.05). 132 (44%) patients had stage 1 cervical cancer and 168 (56%) presented with more advanced disease (stage II-IV). There was a mean delay of 23.1 weeks between onset of symptoms and being seen by a clinician and a further 19 weeks before attending QECH. Most common management plans at initial consultation were: same day biopsy (n=112, 37.3%);, booking for curative surgery (n=76, 25.3%);, and referral to palliative care (n=93, 31%). At 2 months, 64 (57%) biopsies were reported, 31 (40.8%) operations were completed and 27 (29%) patients had attended the palliative clinic. Conclusions Patients presenting with cervical cancer to QECH were young, with a high prevalence of HIV, and late stage disease. The lack of pathological and surgical capacity and the absence of radiotherapy severely limited the possibility of curative treatment. Access to quality palliative care remains an important component of management in low resource settings. Improving awareness of cervical cancer in the community, and better recognition and management within the health service, are important in reducing the cancer burden for women in Malawi.

IntroductionCancer and other life-limiting non-communicable diseases are on the increase in Africa affecting younger populations frequently diagnosed at an advanced stage of disease. The United Nations Sustainable Development Goal 3 aims for ‘healthy life and wellbeing for all at all ages’, though there is a limited understanding of wellbeing particularly from patients’ and families’ perspectives in these populations. Palliative care is an approach which aims to improve the quality of life for patients and families affected by life-limiting disease, though access to palliative care has been described as an issue which is ‘largely ignored’ on the global health agenda. The aim of this Photovoice study was to explore patient and family perspectives of wellbeing and the contribution of palliative care following a diagnosis of advanced cancer in Blantyre, Malawi.MethodsBetween November 2016 and February 2017, 13 co-researchers (6 patients receiving palliative care for advanced cancer and 7 un-paid family caregivers) gathered photographs to depict aspects of their daily lives. Participatory analysis was conducted and an advocacy event (including photographic exhibits) held.ResultsWellbeing was described as seeing improvements in the patients’ function facilitating inclusion in activities of daily living (including income generation) that had not previously been possible due to their illness. Family caregivers, neighbours and community members play a key role as ‘courage givers’ supported by health workers and religious groups, though discrimination in the form of social exclusion was also reported to be significant with patients expressing that they may be considered ‘prematurely dead’ in their community. Palliative care improves wellbeing by providing pain and symptom management enabling patients and / or family caregivers to return to household and income generating tasks. Through close interaction with households and ongoing counselling palliative care services assist to reduce fear and discrimination.ConclusionsTo achieve Sustainable Development Goal 3 for patients and families affected by life limiting illnesses in low resource settings, further understanding of the frequency and impact of discrimination is required as well as improved access to palliative care.

BackgroundThe burden of end-stage kidney disease (ESKD) in sub-Saharan Africa is increasing rapidly but the palliative care needs of patients living with ESKD are not well described. Resource limitations at both health system and patient level act as major barriers to patients receiving renal replacement therapy (RRT) in the form of dialysis. We undertook an exploratory qualitative study to describe the palliative care needs of patients with ESKD who were not receiving RRT, at a government teaching hospital in Blantyre, Malawi.MethodsA qualitative, explorative and descriptive design was used. Study participants were adults aged > 18 years with an estimated glomerular filtration rate < 15 ml/min on two separate occasions, three months apart, who either chose not to have or were not deemed suitable for RRT. Data were collected by means of semi-structured interviews.ResultsIn October and November 2013, interviews were conducted with 10 adults (7 women with median age of 60.5 years). All were hypertensive and four were on treatment for HIV. Four themes emerged from the data: changes in functional status because of physical symptoms, financial challenges impacting hospital care, loss of role within the family and the importance of spiritual and cultural beliefs.ConclusionThis study reports on four thematic areas which warrant further quantitative and qualitative studies both in Malawi and other low-resource settings, where a growing number of patients with ESKD unable to access RRT will require palliative care in the coming years.

BackgroundCervical cancer is the commonest cancer affecting women in Malawi, which has the highest rate of this disease in the world. Most cases are diagnosed at an advanced stage . Aim To describe the symptom burden, palliative care interventions, and outcomes of cervical cancer patients who entered care at Tiyanjane Clinic in Blantyre, Malawi, between January and December 2012. MethodsWe reviewed the case files of 72 patients presenting to our hospital-based palliative care service over one year. ResultsThe mean age was 49.5 years. Twenty-six patients (36%) were HIVpositive and the majority of these (n = 22; 85%) were on antiretroviral medication at presentation to palliative care. Pain (n = 66; 92%), vaginal discharge (n = 44; 61%), and unpleasant odour (n = 37; 51%) were commonly reported. Over a third of patients (n = 26; 36%) reported pain in two or more sites. Fourteen patients (19%) reported vaginal bleeding. Spousal breakdown (through widowhood or divorce) was noted in over half (n = 41; 57%) of all cases. Pain relief was provided to 69 (96%) of the patients (morphine to 40 patients; 56%). Common interventions provided included metronidazole tablets (used vaginally), sanitary items, and counselling. At the end of the study period, 18 patients (25%) were still under the care of palliative services. ConclusionsAccess to medications such as morphine, metronidazole and tranexamic acid can improve quality of life, even when radiotherapy is limited. Health care teams require necessary skills and training, including how to perform a comprehensive assessment, with an emphasis on the provision of psychosexual counselling, to assist with the complexity of symptoms occurring in this vulnerable group.

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ObjectiveEvidence of the role of palliative care to reduce financial hardship and to support wellbeing in low/middle-income countries (LMIC) is growing, though standardised tools to capture relevant economic data are limited. We describe the development of the Patient-and-Carer Cancer Cost Survey (PaCCCt survey) which can be used to gather data on healthcare use and out-of-pocket expenditure (OOPE) in households affected by cancer in LMIC.MethodsTo identify relevant content qualitative data were gathered using Photovoice to detail concepts of wellbeing and cost areas of importance in households receiving palliative care in Blantyre, Malawi. Existing approaches and tools used to capture OOPE were mapped through a review of the literature. The WHO tuberculosis patient cost survey was chosen for adaptation. Face and content validity of a zero-draft of the PaCCCt survey were developed through review by healthcare professionals and a national stakeholder group. The final survey was translated into local language (Chichewa) and piloted.ResultsThe PaCCCt survey is a tablet-based, third-party administered survey recording healthcare service utilisation and related direct and indirect costs. Coping strategies (loans and dissaving and so on), funeral costs and wellbeing at household level are included. Completion time is <30 min.ConclusionThe PaCCCt survey can be used as part of economic evaluations in populations in need of palliative care in LMIC. Such evidence can support calls for the inclusion of palliative care within Universal Health Coverage which requires end-user protection from financial hardship.