|Year : 2021 | Volume
| Issue : 1 | Page : 19-23
A qualitative approach to understand the knowledge, beliefs, and barriers toward organ donation in a rural community of Haryana - A community based cross-sectional study
Puneet Misra1, Sumit Malhotra1, Nitika Sharma1, MC Misra2, Arti Vij3, CS Pandav1
1 Centre for Community Medicine, All India Institute of Medical Sciences, New Delhi, India
2 Department of General Surgery, All India Institute of Medical Sciences, New Delhi, India
3 Hospital Administration (CNC), All India Institute of Medical Sciences, New Delhi, India
|Date of Submission||29-Jun-2020|
|Date of Acceptance||05-Sep-2020|
|Date of Web Publication||31-Mar-2021|
Dr. Puneet Misra
Centre for Community Medicine, All India Institute of Medical Sciences, New Delhi
Source of Support: None, Conflict of Interest: None
Introduction: Organ transplantation is the therapeutic modality available for people with end-organ failure. However, only 10% of the need for transplantation is met globally. There are different factors that influence organ donation by people. Objective: This study was planned with an aim to understand the beliefs and knowledge of a rural community toward organ donation and the identification of barriers for organ donation. Materials and Methods: A qualitative community-based cross-sectional study was carried out among the adults of a rural area of Ballabgarh block of district Faridabad, Haryana. There were four groups of participants based on age and gender. Data collection was done through focused group discussion. Results: Several themes emerged and various reasons that were facilitators/barriers for donation of organ by people were listed: unawareness on what organs can be donated, misuse of donated organs by black marketing, organ donation by people having any comorbidity, no religious prohibition on organ donation, and disfigurement of body after organ donation. Conclusion: People consider organ donation a noble act. However, there are various myths and misconceptions as well as unawareness of procedure regarding organ donation that leads to lower rate of organ donation. Awareness campaigns should be organized to take care of such issues.
Keywords: Barriers, facilitators, organ donation, transplantation
|How to cite this article:|
Misra P, Malhotra S, Sharma N, Misra M C, Vij A, Pandav C S. A qualitative approach to understand the knowledge, beliefs, and barriers toward organ donation in a rural community of Haryana - A community based cross-sectional study. Indian J Transplant 2021;15:19-23
|How to cite this URL:|
Misra P, Malhotra S, Sharma N, Misra M C, Vij A, Pandav C S. A qualitative approach to understand the knowledge, beliefs, and barriers toward organ donation in a rural community of Haryana - A community based cross-sectional study. Indian J Transplant [serial online] 2021 [cited 2021 Jun 21];15:19-23. Available from: https://www.ijtonline.in/text.asp?2021/15/1/19/312756
| Introduction|| |
India is undergoing the phase of epidemiological transition wherein the incidence of non-communicable diseases is on rise and hence the end-stage organ failure. Organ transplantation is the preferred therapeutic procedure in condition of organ failure. Organ transplantation has shown to improve both the quality of life and survival among the allograft recipients as compared to those without transplantation. However, there is a significant gap in the demand and supply of organs to be transplanted all over the world. According to the WHO global observatory on donation and transplantation, <10% of solid organ need for transplantation is met globally.
The deceased donor donation rate in India stands at around 0.34/million, which is abysmally low when compared to the organ donation rate prevalent in other developed countries. There have been efforts in both public and private sectors to increase the rate of organ donation. Data from Indian Transplant Registry show that Tamil Nadu has the highest number of organ donors followed by Kerala and Maharashtra. In India, there is an estimated demand supply gap of more than 95% for liver, kidney, and heart transplantation. This demands an urgent need to narrow down demand supply gap and increase organ donation rate. Shrinking the gap requires recognition of factors behind increased demand, paucity of supply, and its reasons.
This study was planned with an aim to understand the beliefs and knowledge of a rural community toward organ donation and the identification of barriers for organ donation.
| Materials and Methods|| |
A community-based cross-sectional study was carried out to assess organ donation behaviors and factors influencing it using both the quantitative and qualitative design. This study discusses about the qualitative part. A qualitative study was done through focused group discussions (FGDs). The qualitative study was carried out following ENTREQ checklist.
Issues covered in qualitative study
An understanding of knowledge of community regarding aspects of organ donation was focused on using grounded theory.
The present study also focused on the decision-making process regarding organ donation and barriers that influence the decision in the family and community.
Some of the barriers for exploration through qualitative approach were identified through literature search. These included- religion and family constraints, constraints regarding illegal organ transplantation.
Villages of primary health centers (PHC), Dayalpur, under the Intensive Field Practice Area of Comprehensive Rural Health Services Project (AIIMS), Ballabhgarh, Haryana, were taken for the study. The total population of PHC Dayalpur was 48,775 in 2015 (as estimated in Annual Survey by health workers). All those eligible patients were included in the study from this population.
Persons aged more than 18 years and above and residing in villages under PHC Dayalpur for at least 6 months were included in the study. Selection of the study participants was done using simple random sampling from health management information system data of the population under PHC Dayalpur. Village-wise list of adults was made and participants were selected through simple random sampling for the entire study. Participants for data collection were contacted and recruited with the help of ASHA workers.
Those not willing to give informed consent were excluded.
Participants for FGDs were selected from the study population using purposive sampling [Table 1].
Since it was a qualitative study, for the purpose of study, four FGDs were conducted with 8–12 participants in each group to assess community perspective about organ donation in the area.
Participants were adult men and women of different age groups and we invited 12 participants in each group, so that we can get at least 10 participants even after refusals or late comers.
Both male FGD were conducted at PHC Dayalpur and female FGDs at an anganwadi center near PHC Dayalpur. These were dual-moderator FGDs wherein there was one moderator who ensured smooth progression of the session and an assistant moderator who made sociograms and ensured all topics in FGD guide were covered. FGDs were conducted till data saturation was achieved.
There was an average of 12 participants in each FGD. Discussions were carried out in Hindi and all the participants were encouraged to take part in discussion of the issues.
Responses of the participants were recorded in writing by two junior residents and supplemented using an audio recorder. Probing was done wherever necessary. At the end of FGD, questions from participants regarding organ donation were answered and finally before leaving, completion of the discussion guide was ensured. Each FGD lasted for 40–60 min.
Participants were not given any monetary compensation. However, refreshments were given to them after FGD.
- Based on issues identified from previous literature, topic guide was developed
- FGD guide included topics on knowledge about organ donation, misuse of donated organs, religious and cultural beliefs, and barriers in decision-making process about donating organ.
- Notes taken during FGD were supplemented by transcripts of audiotapes. The transcripts were later translated into English language
- Standard qualitative analysis procedure of free listing of responses, domain formation, coding, and analysis was followed (grounded theory)
- Data were analyzed separately for each category of stakeholder and then reanalyzed to assess similarities and differences in perceptions across stakeholders.
Approval of Ethics Committee of AIIMS, New Delhi, was obtained before conducting the study vide approval number IESC/T-04/03.01.2014. All protocols were followed as per Declaration of Helsinki.
Privacy and confidentiality of each participant was ensured. Written informed consent was obtained from all participants.
All participants were given chance to ask questions about organ donation, and relevant information regarding the same was provided.
The participant consent was taken for participation in the study and for publication of images. Participants understood that the names, initials would not be published, and all standard protocols would be followed to conceal their identity.
| Results|| |
A qualitative study comprising four focused group discussions was conducted with an average of 10 participants in each group to assess the perception of a rural community with respect to organ donation and its barriers.
Following broad themes in context to the objective of study were found [Figure 1].
Insight about organ donation and transplantation
The study participants were aware of organ donation and considered it as a noble work as it helps save someone's life. Awareness about organs that could be donated after death was mostly restricted to eyes and kidneys [Table 2].
Young female group were aware that donor might also live after donation. They also pointed importance of getting themselves registered before organ donation. However, they had no awareness regarding procedure of donation and registration.
Knowledge about organ donation-related issues [Table 3]
Knowledge about till which age can someone donate their organs
The study participants opined that people could donate at any age, but only if they are free from disease.
Knowledge about whether women can donate their organs and freedom of decision-making
Male participants in their responses were found to be aware that women could also donate their organs and opined that they could donate if not suffering from any illness. However, the female participants expressed inability to take decisions about organ donation. Women >40 years of age were of the opinion that they could not donate as they were weak and were on medications for some or the other diseases in their age group.
Knowledge about laws regarding organ donation
It was observed that participants were not aware of laws related to organ donation. However, they knew that illegal organ retrieval is punishable under law and organ procurement requires a team of doctors [Table 4].
Religious beliefs and organ donation
Most of the participants opined that religion does not prohibit organ donation. Some of the participants also considered organ donation as a noble religious act. They opined that people do not donate organs of their family members as they want integrity of the body maintained even after death.
Moreover, religion forces people to bury/burn the body quickly after death without giving them sufficient time to think about organ donation [Table 5].
| Discussion|| |
In the present study, various aspects of organ donation were discussed upon and opinions of people were obtained. It was found in our study that people considered organ donation as a noble deed and this was a facilitator for donating organs. In the study by Ralph et al. on the family perspectives on organ donation, participants believed in “goodness of organ donation” in saving lives. Similar ideation was seen in a qualitative study among the Arabic-speaking community in Australia in the study by Ralph et al. and in the study by Moloney and Walker.
They had awareness about the organs that could be donated. However, their knowledge regarding laws related to organ donation was lacking. They opined that their donated organs could be traded through illegal means in black market. Similar observations were made by Ralph et al. and Davis and Randhawa (2004).
This fear of trading of organs and their misuse is a demotivating factor for organ donation. People should be made aware of laws related to organ donation and any act of illegal trade should be strictly dealt with [Figure 2].
Participants from the present study had the perspective that religion does not prohibit organ donation. However, it was observed that family members of deceased wish the integrity of body to be maintained. In the study among Arabic-speaking community in Australia by Ralph et al., both opinions of religion favoring and disfavoring organ donation came up. In the study of Randhawa, the view of religion-opposing organ donation emerged. This difference could be because of difference in perception of people and beliefs that are passed on through generations.
In the studies by Alkhawari et al. and Lai et al., participants had the opinion that integrity of body after death should be intact.
However, in the study by Fahrenwald and Stabnow among American Indians, it was observed that some participants were not thinking of body disintegration after death and were willing to donate organs. This leads to loss in interest for organ donation [Figure 2].
Limitations of the study
It was limited to only one rural community in a single state. Larger studies from different communities may help in validating the results of our study.
| Conclusion|| |
Organ donation is considered a noble and life-saving act by many people. However, understanding of people regarding various aspects of organ donation was found lacking. They have certain disbeliefs regarding what organs could be donated and who could be an organ donor. People are also not aware about laws related to organ donation which has led to thinking that their organs might be misused. This fear and lower awareness proves to be a considerable factor in poor number of organ donation. Such lack of awareness and knowledge needs to be improved by campaigns and awareness programs.
However, the study design represents understanding of the study population only and limits generalizability of findings. Future research in different geographic areas and ethnic groups are needed to understand the behavior and knowledge of people toward organ donation. It would also be useful for policymakers, health education experts, organ donation counselors, academicians, and researchers.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
US Renal Data System. USRDS 2011 Annual Data Report: Atlas of Chronic Kidney Disease and End-Stage Renal Disease in the United States. National Institute of Health, National Institute of Diabetes and Digestive and Kidney Disease, Bethesda; 2011.
Ahlawat R, Kumar V, Sharma RK, Minz M, Jha V. Attitude and knowledge of healthcare worker in critical areas towards deceased organ donation in a public sector hospital in India. Natl Med J India 2016;26:322-6.
Ralph A, Chapman JR, Gillis J, Craig JC, Butow P, Howard K, et al
. Family perspectives on deceased organ donation: Thematic synthesis of qualitative studies. Am J Transplant 2014;14:923-35.
Ralph AF, Alyami A, Allen RD, Howard K, Craig JC, Chadban SJ, et al
. Attitudes and beliefs about deceased organ donation in the Arabic-speaking community in Australia: A focus group study. BMJ Open 2016;6:e010138.
Moloney G, Walker I. Talking about transplants: Social representations and the dialectical, dilemmatic nature of organ donation and transplantation. Br J Soc Psychol 2002;41:299-320.
Davis C, Randhawa G. “Don't know enough about it!”: Awareness and attitudes toward organ donation and transplantation among the black Caribbean and black African population in Lambeth, Southwark, and Lewisham, United Kingdom. Transplantation 2004;78:420-5.
Randhawa G. An exploratory study examining the influence of religion on attitudes towards organ donation among the Asian population in Luton, UK. Nephrol Dial Transplant 1998;3:1949-54.poi
Alkhawari FS, Stimson GV, Warrens AN. Attitudes toward transplantation in U.K. Muslim Indo-Asians in west London. Am J Transplant 2005;5:1326-31.
Lai AL, Dermody J, Hanmer-Lloyd S. Shedding the cocoon: A 'mortal embodiment' perspective of organ donation in supporting and enhancing life. Adv Consum Res 2007;34:167-74.
Fahrenwald NL, Stabnow W. Sociocultural perspective on organ and tissue donation among reservation-dwelling American Indian adults. Ethn Health 2005;10:341-54.
[Figure 1], [Figure 2]
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]