Household concepts of wellbeing and the contribution of palliative care in the context of advanced cancer: A Photovoice study from Blantyre, Malawi.

INTRODUCTION: Cancer 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. METHODS: Between 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. RESULTS: Wellbeing 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. CONCLUSIONS: To 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.

Cervical cancer in southern Malawi: A prospective analysis of presentation, management, and outcomes.

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.