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"Social, Cultural and Religious factors in End-of-life Decision-making in Pakistan (SCARED) - A Qualitative Analysis
Pakistan (IFMSA-Pakistan) - Shalamar medical and dental college, Lahore
Dr Sarosh Saleem
Dr Sarosh Saleem
English : Required , Urdu : accepted
Type of Research Project
- Basic science
What is the background of the project?
End of life decision-making is a critical and difficult situation for physicians and patients alike. Many social, cultural and religious factors influence decision-making(Harris, Links et al. 2018) (Sisk, Kang et al. 2020). Pakistan has a unique socio-cultural environment. The concept of autonomy and shared decision making, that are cornerstones of medical ethics in the West have a unique understanding in many countries of the West including Pakistan(Moazam 2000).The healthcare professionals in Pakistan are taught medical ethics literature, mostly from the West. They face a conflict when the moral values learnt by them are challenged by the social or cultural beliefs of patients/families. The professionals develop moral distress when confronted by these ethical dilemmas. These aspects have been understudied in Pakistan and therefore, a qualitative exploration of experiences of healthcare providers as well as patients and families will be significant with the advent of modern life saving technologies in Pakistan. Identification of the factors influencing decision-making will eventually help nurture cultural humility and sensitivity among healthcare professionals in not only Pakistan but also professionals dealing with families of Pakistani descent all around the world.
What is the aim of the project?
The study aims to identify social, cultural and religious influences on decision-making by exploring the experiences of healthcare professionals and patients/families at the end of life in major cities of Pakistan.
What techniques and methods are used?
Qualitative methodology (Phenomenology) will be used. A semi-structured questionnaire will be used for in-depth interviews of healthcare professionals and patients/families. 24 Healthcare professionals (physicians and nurses) serving in critical care areas (and palliative care) of 6 different tertiary care hospitals of Pakistan will be interviewed to record their experiences of end-of-life decision-making. Similarly, families of patients who deceased after an end-of-life decision (withdrawing or with-holding of life support) was made in these hospitals will be interviewed to record their experiences. The data will be audio-recorded, transcribed and then analyzed by the investigators. Themes and sub-themes will be identified. NVivo v.12 software will be used to analyze the data collected. NVivo is a qualitative data analysis (QDA) computer software package. (NVivo stands for Navigating viewpoints, images and value observed by interview/ focus group discussion/observation)
What is the role of the student?
- The student will observe the practical experiments but will be highly involved in the analysis of the results
- The tasks will be done under supervision
What are the tasks expected to be accomplished by the student?
The student will be required to: Participate in development of semi-structured questionnaire after thorough literature search and discussions with subject experts. The student will be expected to participate in recording of in-depth interviews with healthcare providers and families, to observe communication styles during in-depth interviews and learn technical details of data collection (I.e audio-recording, taking field notes and record keeping etc). The students will develop a guideline for data confidentiality after going through ethical requirements of respecting privacy and confidentiality of research participants. The student will perform data analysis on NVivo software. The student will review transcribed interviews independently and then while sharing notes with the co-investigators. Transcribing qualitative data is an essential skill and so is the interpretation and theme identification, which the student will be part of. The student will be guided to write a project report and will be encouraged to present as a poster or paper. This will enable the student to develop writing and presenting skills. For all these steps, the students will gain knowledge of qualitative research and will be able to develop skills imperative for qualitative research and ethics of research.
Will there be any theoretical teaching provided (preliminary readings, lectures, courses, seminars etc)
Readings on Qualitative research methodology, ethical issues in end-of-life decision-making; Lectures and workshops conducted by Sarosh Saleem (Assistant Professor & Head of Bioethics Department, SMDC, Lahore); 4 hours per week of direct teaching by tutor herself
What is expected from the student at the end of the research exchange? What will be the general outcome of the student?
- The student will prepare a poster - The student will prepare a scientific report - The student will prepare an abstract - The student’s name will be mentioned in a future publication
What skills are required of the student? Is there any special knowledge or a certain level of studies needed?
Communication skills, report writing (basic) skills, questionnaire development.
Are there any legal limitations in the student’s involvement
Type of students accepted
This project accepts: - Medical students - Graduated students (less than 6 months)
- Chakraborty R; El-Jawahri AR; Litzow MR; Syrjala KL; Parnes AD; Hashmi SK. A systematic review of religious beliefs about major end-of-life issues in the five major world religions. Palliat Support Care. 2017;15(5):609‐622. doi:10.1017/S1478951516001061
- The Process of End-of-Life Decision-Making in Pediatrics: A National Survey in the Netherlands Mirjam A. de Vos; Agnes van der Heide; Heleen Maurice-Stam; Oebele F. Brouwer; Frans B. Plötz; Antoinette Y. N. Schouten-van Meeteren; Dick L. Willems; Hugo S. A. Heymans; Albert P. Bos Pediatrics Apr 2011; 127 (4) e1004-e1012 DOI: 10.1542/peds.2010-2591
- Moazam F. Families; patients; and physicians in medical decisionmaking: a Pakistani perspective. Hastings Cent Rep. 2000;30(6):28‐37. Cochran; D.; Saleem; S.; Khowaja-Punjwani; S.; & Lantos; J. D. (2017). Cross-Cultural Differences in Communication About a Dying Child. Pediatrics; 140(5). doi:10.1542/peds.2017-0690
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