Date of Award
2020
Document Type
Thesis
Degree Name
Doctor of Philosophy (PhD)
First Supervisor/Advisor
Dr. Brenda L. Cameron
Second Supervisor/Advisor
Dr. Sherry Dahlke
Department
School of Nursing and Midwifery, Pakistan
Abstract
Around the world, cancer is a leading cause of death and the burden of cancer is expected to increase in low-and middle-income countries (LMICs), where 82% of the world’s population resides. In these countries, which include Pakistan, aspects of the culture and traditions, inaccessibility to diagnostic and treatment facilities impede access to palliative care. In many cases, people do not reach treatment facilities until they are at the stage when the person is at the end-of-life and is dying. This paints the picture of cancer as a deadly disease and as soon as it is diagnosed nothing can be done but to mourn. Little is understood about people’s experiences accessing palliative care in Pakistan. This study followed Yin’s methodology of case study research to describe how people accessed palliative care through Bait-ul-Sukoon Cancer Hospital and Hospice, the research setting (and bounded case) selected for this study. Theoretical propositions that guided the research were derived from the literature and my professional experience. Data collection occurred through unstructured observations, interviews of patients, family members and the health care provider, physical artifacts, and through my reflections. Four patients, three family members, and five healthcare providers were interviewed. Data analysis occurred simultaneously with data gathering and involved a reflexive analysis of the data. This study was guided by the theoretical propositions, the study objectives, and research questions that were derived from these propositions. Through this analysis process, two main themes were developed with subthemes to describe the case. I was also attentive to identity the rival cases, data that is contrary to the propositions. As the analysis progressed, linkages between the data were noted to see where the data were converging and diverging. The findings have described the suffering of people due in a large part to the late diagnosis of cancer. However, late diagnosis is also related to cultural beliefs, the social stigma of having cancer, the financial (and social) burden of seeking treatment, lack of education about cancer prevention and detection, healthcare system inadequacies and corruption, and healthcare providers’ knowledge deficits. Poverty underlies most of the suffering and is largely the reason for late diagnosis. Participants suggested that policy-level change was needed to meet palliative care needs, and enhance early diagnosis. Policy level change for poverty alleviation would improve the determinants causing obstructions in accessing palliative care and improve access to pain and symptom management. This research underscores that at present, military and defense funds are the focus of the budget priorities in Pakistan. This deprives the population of fulfilling the need for social development and the health of the people in the country, which ultimately ruins the health and quality of life of the individuals. As a result, individuals feel emotionally distressed at the prospects of little or no betterment of their lives, their children’s lives, and the generations that follow. These findings highlight the need for policy change by involving the stakeholders from social sectors, health, and education at the country level and through collaboration with the World Health Organization. Dissemination of these research findings, focusing on a public health approach and providing universal health coverage to all, is critically important for improving access to palliative care in Pakistan. This study identifies a clear need to educate healthcare providers about palliative care. Therefore, it is recommended that in LMICs palliative care should be included in medical and nursing curricula. The findings of this study suggest that nurses should work within the scope of their practice. This is also needed for their own safety and the safety of their patients. This requires close monitoring and supervision by the statutory bodies like the Pakistan Nursing Council. There are implications for policy change to provide universal access to health and to achieve sustainable development goals. Corruption is identified as one of the major hurdles in accessing health that must be controlled to start with and then be eradicated.
Recommended Citation
Rattani, S. A. (2020). Case study describing access to palliative care in Pakistan (Unpublished doctoral thesis). Aga Khan University, Karachi, Pakistan.