Construction of meanings during life‐limiting illnesses and its impacts on palliative care: Ethnographic study in an African context

Abstract

Objective Knowledge about how people make meaning in cancer, palliative, and end‐of‐life care is particularly lacking in Africa, yet it can provide insights into strategies for improving palliative care (PC). This study explored ways in which cancer patients, their families, and health care professionals (HCPs) construct meaning of their life‐limiting illnesses and how this impact on provision and use of PC in a Nigerian hospital. Methods This ethnographic study utilised participant observation, informal conversations during observation, and interviews to gather data from 39 participants, comprising service users and HCPs in a Nigerian hospital. Data were analysed using Spradley's framework for ethnographic data analysis. Results Meaning‐making in life‐limiting illness was predominantly rooted in belief systems. Most patients and their families, including some HCPs, perceived that cancer was caused by the devil, mystical, or supernatural beings. They professed that these agents manifested in the form of either spiritual attacks or that wicked people in society used either poison or acted as witches/wizards to inflict cancer on someone. These beliefs contributed to either nonacceptance of, or late presentation for, PC by most of patients and their families, while some professionals depended on supernatural powers for divine intervention and tacitly supporting religious practices to achieve healing/cure. Conclusions Findings revealed that cultural and religious world views about life‐limiting illnesses were used in decision‐making process for PC. This, therefore, provided evidence that could improve the clinicians' cultural competence when providing PC to individuals of African descent, especially Nigerians, both in Nigerian societies and in foreign countries.

An Ethnographic Study of Palliative and End-of-Life Care in a Nigerian Hospital: Impact of Education on Care Provision and Utilization

“…Generally, inadequate formal education of HCPs in PC has been widely reported as one of the reasons why PC has continued to be poorly developed in some of African countries such as Nigeria (Agom, Neill, et al, 2019;EIU, 2015;Van der Plas et al, 2020). This suggests that patients in Nigeria with life-limiting illnesses and their families may not be receiving adequate care to relieve their suffering and improve their quality of life because most PC professionals lack the knowledge and expertise to deal with the diversity of their problems.…”

Social and Health System Complexities Impacting on Decision-Making for Utilization of Oncology and Palliative Care in an African Context: A Qualitative Study

“…Many studies have uncovered obstacles to PC in an African context, such as too few health professionals with PC training and education; lack of training opportunities; poor knowledge of, and attitudes toward, PC; professionals and service-users' lack of awareness; inadequate opioids; lay meaning-making of cancer/care; and a lack of PC policies in most African countries. [4][5][6][7][8][9] The rising costs of chemotherapy, drug resistance, and insufficient radiotherapy machines are some of the recognized challenges of cancer care in poorly resourced countries. 10,11 In addition, patients with cancer experience not only physical problems but also cancer-related social difficulties that impact on their mental health and quality of life.…”

Spiritual care practices in hospices in the Western Cape, South Africa: The challenge of diversity

“…The responses of our participants enable us to add to the discussions raised by the few studies in the global South [15,27,28]. The issue of diversity in spiritual care is now being discussed in diversifying countries like, for example, the USA [29,30,31] and in other African contexts (32,33,34]. There are similarities between our ndings and those in other diverse contexts; the particular South African history, though, does create a political context which is probably unique [35].…”