Date of Award

11-2025

Degree Type

Thesis

Degree Name

Master of Bioethics

First Advisor

Dr Muhammad Shahid Shamim

Second Advisor

Dr Ashar Malik

Third Advisor

Dr Hasan Erbay

Department

Educational Development

Abstract

Background: Informed consent is the fundamental element of ethical medical research and treatment, ensuring autonomy and promoting trust and transparency among the stakeholders including participants, researchers, and healthcare providers. However, in low- and middle-income countries (LMICs), such as Pakistan, the implementation of this approach remains complex due to resource constrained healthcare settings, sociocultural diversity, and emotionally charged situations. By knowing the contextual needs , the informed consent process can be improved. Objectives: The study explored the perceptions of various stakeholders (patients, their families, and healthcare providers) regarding participation in cancer research and treatment decision-making. It identified the factors influencing research participation and the dynamics that led to differences in perceptions regarding consent among stakeholders (patients, family members, and healthcare providers). Methods: A descriptive exploratory qualitative research design was employed for the study involving three categories of stakeholders: patients/ survivors, family members, and healthcare providers from Karachi, selected through snowball purposive sampling techniques. 27 participants were 2 interviewed to achieve data saturation. Data was analyzed using a thematic inductive approach. Findings were integrated through triangulation to ensure depth and validity.
Results: Thematic analysis highlighted a limited and evolving understanding of research, family involvement with male dominance in decision making, and emotional and psychological barriers to consent. Research participation was viewed as a moral or religious duty, while some mentioned fear of stigma, re-traumatization, and sample misuse, and mistrust in data confidentiality as their apprehensions. Healthcare providers acknowledged the complexity of consent forms and the lack of interest in local research. Comparative analysis revealed a strong influence of sociocultural norms, gender roles, and emotional readiness on consent processes.
Conclusion: Consent for cancer research participation is a multi-layered process shaped by relational, emotional, and contextual factors. The study advocates for the urgent need for systemic improvements, such as streamlining culturally sensitive consent forms, enhancing bioethics clinical training, engaging communities through community sensitization and awareness-raising, and developing respectful cancer research policies and guidelines to simplify informed consent procedures within Pakistan and similar settings.

First Page

1

Last Page

164

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