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

PLoS One. 2018 Aug 22;13(8):e0202490. doi: 10.1371/journal.pone.0202490. eCollection 2018.

Abstract

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.

Publication types

  • Clinical Trial
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Delivery of Health Care*
  • Female
  • Humans
  • Malawi
  • Male
  • Middle Aged
  • Neoplasms / therapy*
  • Palliative Care*
  • Quality of Life*

Grants and funding

This research was funded through the METHOD project by the Department for International Development and The True Colours Trust in the UK. The Palliative Care Support Trust and EMMS International are implementation partners on the METHOD project. The authors thank the NIHR Global Health Research Unit on Lung Health and TB in Africa at LSTM - “IMPALA” for helping to make this work possible. IMPALA (grant number 16/136/35) was commissioned by the National Institute of Health Research using Official Development Assistance (ODA) funding. The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health. Funding bodies were not involved in data collection, interpretation or reporting of the study.