|Year : 2019 | Volume
| Issue : 3 | Page : 194-201
Barriers and suggestions towards deceased organ donation in a government tertiary care teaching hospital: Qualitative study using socio-ecological model framework
Britzer Paul Vincent1, Gunjan Kumar2, Sreejith Parameswaran3, Sitanshu Sekar Kar4
1 JIPMER International School of Public Health, Puducherry, India
2 Maternal and Child Health, Centre for Health Research and Development, Society of Applied Studies, New Delhi, India
3 Department of Nephrology, JIPMER, Puducherry, India
4 Department of Preventive and Social Medicine, JIPMER, Puducherry, India
|Date of Submission||25-Apr-2019|
|Date of Decision||12-Aug-2019|
|Date of Acceptance||03-Sep-2019|
|Date of Web Publication||17-Sep-2019|
Dr. Sitanshu Sekar Kar
Department of Preventive and Social Medicine, JIPMER, Puducherry
Source of Support: None, Conflict of Interest: None
Background: Although the science of transplant has grown, its complementary field “organ donation” is still in its infancy stage in India. There have been very few center-based studies to understand the barriers toward organ donation in a government hospital. Moreover, all of those few studies were from an objectivist point of view and were not subjectivist in approach. Aim: Therefore, this study aims to understand the subjective views on barriers in the process of deceased organ donation among the stakeholders and their suggestions to improve in a government hospital's transplant unit. Methods: Qualitative (subjectivist) method was undertaken to attain the aim of the study and was analyzed using the socio-ecological model (SEM). In-depth interviews were carried out with stakeholders such as nephrologist, urologist, transplant coordinator, a transplant nurse, donor family, and an organ recipient. Results: Each level of the SEM played a vital role in the process of organ donation and they were interwoven with each other. The barriers toward the process of deceased organ donation were mistrust on the health care, unknown will of the deceased, poor communication, interfering of untrained professionals during grief counseling, family background, and lack of incentives and support toward the deceased organ donation program from the administrators. Conclusion: It is worthy to consider the process of organ donation from a Multi-disciplinary viewpoint in planning for future policies, interventions, and research. It is essential to conduct qualitative research to understand more about the barriers toward the practice of organ donation from the service receiver's and provider's perspective.
Keywords: Bereavement, deceased donors, India, organ donation, qualitative research, socio-ecological model, stakeholders, transplant
|How to cite this article:|
Vincent BP, Kumar G, Parameswaran S, Kar SS. Barriers and suggestions towards deceased organ donation in a government tertiary care teaching hospital: Qualitative study using socio-ecological model framework. Indian J Transplant 2019;13:194-201
|How to cite this URL:|
Vincent BP, Kumar G, Parameswaran S, Kar SS. Barriers and suggestions towards deceased organ donation in a government tertiary care teaching hospital: Qualitative study using socio-ecological model framework. Indian J Transplant [serial online] 2019 [cited 2019 Dec 9];13:194-201. Available from: http://www.ijtonline.in/text.asp?2019/13/3/194/266957
| Introduction|| |
The first successful transplant in the world took place in the year 1954, and in India, during the year 1971., Since then, the science of transplantation has grown to become the “standard of care” for patients with end-stage organ failure. Although there is significant growth in the field of transplantation, its complementary field of deceased donor organ donation has not seen such growth. Organ donation rate of India is just 0.80 per million population (pmp). The demand and supply of organs in India are highly unmet.,,,
There are many studies carried out among varied population on awareness and attitude toward organ donation in India.,,,,, The information that is still limited to the scientific world in India is the experiences of the stakeholders and the problems faced by them in the field of organ donation/transplantation in India. The process of organ donation is complex with multiple important stakeholders, involving the bereaved family, transplant coordinators, transplant nurse, physician, surgeon, police personals, hospital infrastructure, and the society at large.
In the Indian context, there are serious challenges in setting up and sustaining a complex process such as deceased donor organ harvesting and transplantation in the public sector hospitals, compared to the private sector. Our hospital had established a deceased donor program and has been sustaining it on its own (without the involvement of external agencies and nongovernmental organizations [NGOs]). The effort was led by a small group of faculties, coordinators, and administrators from the institute. This study was done to help us in understanding the barriers faced by the stakeholders in the field of deceased organ donation/transplantation at our center and their suggestions on how the quality of the process can be improved. To understand this, we adopted the socio-ecological model (SEM). The aim of this study, in a tertiary care center in the southern part of India, was to understand the barriers and suggestion in the process of deceased organ donation among the stakeholders using the SEM.
SEM is a theoretical framework proposed by McLeroy in the year 1988. This theory is used to understand how behavior is affected by multiple factors, ranging from personal to environmental. This model assumes that the behavior of a person is influenced by the changes in the environmental level. This theory also assumes that the effect on individual behavior cannot be explained at one level but from multiple levels.,, The SEM describes the factors that influence the behavior in the following order such as individual, interpersonal, organizational, community, and public policy.,, This theory is widely used to address public health issues.,,,,,, Hence, to understand the barriers in the process of deceased organ donation, SEM viewpoint has been used in this present study.
| Methods|| |
Knowledge of the factors influencing the organ donation process in India has evolved only through objectivist research approaches,,,,,, which ultimately includes factors that are perceived by the service providers and will influence the behavior. Qualitative method is the method chosen for this study as it elucidates the personal perspectives and the contextual meaning of the event, process, and structure.
This study was approved by JIPMER Research Approval Committee and JIPMER Institute Ethics Committee (IEC), India.
This study was conducted in a government tertiary care teaching hospital at the southern part of India. The number of deceased organ transplant at this center is 81 kidneys from 42 donors since December 3, 2013, till the date of the study. Patients mostly belonged to low socioeconomic status and few from middle socioeconomic status; most of them are from rural areas and have poor literacy background. Since this center is under the Ministry of Health and Family Welfare, the transplants provided are free of cost.
The stakeholders involved in this study were nephrologist, urologist, transplant coordinator, a transplant nurse, one member from the donor family, and a recipient. Given the context to understand the barriers in our tertiary care teaching hospital, a center which had only five staffs to set up and sustain the deceased organ donation program and only one regular transplant coordinator, the sample included most of the major stakeholders who have been contributing to this cause, therefore relating it to a sample size of six. The main aim of this study is not to extrapolate the findings to the general population but to understand the barriers in our government-based transplant unit setting. Health-care providers such as the former four involved in this field at least for a period of 1 year, a member from the donor family and the recipient who donated the organs or received a transplant, respectively, within a period of 6 months, and participants fluent in Tamil or English were included. Recipients below the age of 18 years and recipients who received organs from a living donor (as this study is to assess the barriers toward deceased organ donation) were excluded from the study. The study was conducted between September and October 2017.
The interview was carried out using semi-structured interview guides to assess different stakeholders involved in the process of deceased donation. Purposive sampling technique was utilized in this study, as this is highly credible and highly used sample strategy in qualitative research.
Details of this study were explained to the participants. Written consent was sought for participation and audio recording of the interview. The interview was conducted in a silent room free from distraction at a time comfortable for the participant. The interview was conducted either in Tamil or English based on the participant's convenience. The duration of the interview ranged from 45 to 90 min. The transcripts were done within a day following the interviews.
They were then read and important statements were marked manually. Thematic analysis was followed, where the transcripts were analyzed using the five levels in SEM framework. The transcripts were critically read initially by primary author and codes were generated. The transcripts, codes, and their relevance to themes were checked by the second author; any disagreement between the authors, either of the other two authors, was consulted and consensus was made. The whole data analysis was done manually, and no assistance was taken from the computer software for a qualitative study.
| Results|| |
A total of six interviews were conducted [Table 1], with one interview from each cadre involved in the process of organ donation. The finding has been explained in two sections, namely barriers and suggestions [Figure 1].
|Figure 1: Schematic representation on barriers and suggestions toward deceased organ donation using socio-ecological framework|
Click here to view
Factors that influence the behavior of the individual such as knowledge, attitudes, self-efficacy, developmental history, age, gender, religion, ethnicity, socioeconomic status, values, expectation, stigma, and others can be explained under this level. The foremost factor in the individual level reported by the participants was the lack of knowledge on organ donation as the reason for not opting to donate. The interviews showed poor literacy and knowledge on organ donation and poor knowledge on the quality of life after donating organs (living donor). In addition to this, the next common reason stated by the participants was the lack of trust. Several statements proved a pattern in the fear that people had; the fear of medical care. Furthermore, the negative beliefs of the people are a reason for poor organ donation. The participants through the interview showed that there is a negative behavioral belief. There is a perceived belief on the easy availability of deceased donors and on the quality of care in a government hospital. They believe that it is better or safer to receive an organ from a deceased donor, compared to a living donor [Table 2].
The interpersonal level in the theory of SEM includes formal and informal network/support influencing individual behavior including family, friends, peers, coworkers, religious network, and customs or traditions. The decision-making time for the living donor or the deceased donor family is a crucial point. This study showed that unknown will of the family member also served to be an important factor to influence the decision of the family at the time they were requested for in the interpersonal level. Small family size for living donors and adverse societal attitudes were found to be the interpersonal level barriers toward the process of deceased organ donation. The participants expressed their views on what the public might think on their decision of donating organs of their deceased loved ones [Table 2].
The organizational level in the theory of SEM includes organizations and social institutions. This includes organizations or social institutions with rules and regulations that influence the services provided to the individuals and how it influences the behavior of the individuals. Poor coordination, lack of proper intersectoral communication between the teams involved in the process of organ donation, the language of communication, poor grief counseling, and time of approach were identified to be the organizational barriers. The participants expressed that poor coordination has led to delays in the process of deceased organ donation. Participants expressed that though awareness is growing, the poor infrastructure is also leading to issues in organ donation. Apart from this, the language of the health-care provider also served as a barrier. The languages used for conversation between the bereaved family members and health-care providers were expressed to be a challenge in the process. The stakeholders expressed that the involvement of untrained professionals in counseling brings friction during the consent for donation [Table 2]. While we recognize that noncooperation from the panel of doctors authorized to do brain death certification is a problem in most centers, this was not a serious issue as far as our program was concerned. The panel of neurologists and neurointensivists entrusted with this responsibility has been very cooperative and involved with the program. Hence, the issue of brain death certifying was not brought up by the stakeholders during the interviews.
Community level in the theory of SEM includes the relationship between the organizations. This includes any relationship between the organization, institution, and informal networks. This also includes built environments, local association, and community leaders. The three institutions that were identified through this study that influenced the behavior of the individuals were the police department, religious/community leaders, and media. Hardships in reaching to the police officers in charge of the accident cases have been identified to be one of the barriers to delay the process, and others such as poor involvement of religious leader in organ donation and the negative impact from the media are giving fear and confusion to make decision on their consent to donate [Table 2].
Public policy level
Public policy is the final level in the theory of SEM. This includes national, state, local laws, and regulations. Local, state, national, and global policies which perform the allocation of resources, access to health, restrictive policies, and lack of policies that influence the individual behaviors are components of this level. Participants feel that though the law toward the organ donation is strong, the actual barriers faced in a government-based transplant centers are the lack of incentives for the stakeholders who run the program and lack of administrators' support and their recognition on the importance of the need of a deceased organ donation program. Unless these two issues are addressed effectively, the deceased donor program in the public sector will not come up [Table 2].
The most common suggestion made by the participants was to improve the awareness campaigns. The study participants showed interest to educate future generations through lessons in school subjects and also rural communities on organ donation. They also suggested to improve family conversation on organ donation. These were evident from the statement made by the physician and transplant coordinators. Health-care providers also supported this statement as they mentioned that knowing the deceased person's decision on organ donation will improve in the consent rate. The need for involvement of more trained personnel in the grief counseling was also suggested in view of mutual concern. As the decisions are influenced by the community, frequent conversation on organ donation by the religious leaders and community leaders were also put forward by the participants [Table 2].
| Discussion|| |
At the individual level, knowledge, fear, and mistrust on health care were influencing the process of deceased organ donation. Most of the studies carried out in India on organ donation have found that the knowledge on organ donation is fair,,,,,, but when approached through the qualitative methods, it showed that they lacked knowledge on organ donation which has adversely influenced the process of organ donation. Fear and mistrust in health care were not addressed in other studies.,,,,, This could have been due to the fact that quantitative approach ultimately includes factors only what the service providers perceive as significant, and it appears that there was lack of recognition that lack of comprehension of the concept of brain death or misconceptions about the concept of brain death and forensic procedure among the public as significant barriers. Education through school curriculum and more awareness campaigns were suggested to improve organ donation. Interventional studies have also proved that education on organ donation improves knowledge, attitude, and perception.,,,, Since this is being proposed by the stakeholders from this study, further feasibility studies can be carried out to assess the implementation of this proposal.
Not knowing the wish of the deceased, small family size, adverse comments by relatives and people from the neighborhood on the decision made to donate are issues at the interpersonal level. Conversation on organ donation among the family members is very important. Qualitative studies have also proved this,,, but this was not captured in quantitative studies carried out in India.,,,,, The other information that the previously published studies on organ donation in India has not brought out the issues on the small family size that leads to unavailability of suitable donor within family which leads to opting of deceased donor. The other information captured by this study method was the adverse comments by the society on the decision of organ donation. This may be due to the wrong notion of organ donation through media such as movies and television series. Many quantitative studies have also suggested that media is one of the important sources of information on organ donation, but no quantitative study has shown the link between the dissemination of wrong information on media, increasing the misconceptions and fear among the public.,,,,, The suggestions made by the stakeholders in the interpersonal level was to promote conversation on organ donation with the family members. As studies have proven that conversation with family members have influenced the organ donation process,,, promoting this suggestion will be of great influence on the process of organ donation in India.
The process of organ donation is multisectoral.,, Poor intersectoral coordination, untrained health-care professionals to deal with bereaved families, lack of infrastructure, and language of communication were found to influence organ donation from this study. It is the critical time for the families to make a decision on organ donation. Hence, the process has to be smooth and easy for obtaining consent for organ donation, it may reverse it if not handled properly., Poor approaches include grief counseling by untrained health-care professionals. Any wrong conversation and wrong handling of the scenario leads to a bad impact on the organ donation process and consent rates., Overall, the organizational level factors influencing the process of organ donation have not been mentioned or showed in most of the quantitative studies carried out in India.,,,,, This study has thus added more to the knowledge of the factors influencing the process of organ donation in India.
Apart from the hospital staffs, other institutions such as the police department, religious groups, NGOs, and other organizations are also involved in organ donation. Police department's support has been found to be one of the important factors in the process of organ donation. The police department has to investigate the case for deceased organ donation before the retrieval of organs and also to facilitate the process of the green corridor., Hence, their actions need to be swift and not delay the process. Studies have proved that delay in the process to be an important factor influencing the process of organ donation. Although there is a great contribution to this process by the police department,,, their support needs to be more forthcoming than it is now. Religious leaders' involvement is also a great influential factor in the process,, though the leaders support, the information is not being passed to the public, which leaves them confused on the religious opinion. Many studies have suggested that religion influences organ donation.,,, Hence, as suggested by the participants of this study, talks on organ donation by religious leaders and the swift medicolegal process will be a great step to remove these barriers.
The final and broader factor that influences the individuals is public policy. This level includes national, state, local laws, and regulations. The law toward organ donation in India was formed in the year 1994 and had few amendments, making the law stronger for having an ethical and safe practice.,,, The participants in this study have shared that providing incentives for the stakeholders and support from the administrator's level will be a great catalyst for the performance of a deceased organ donation program in a government-based transplant unit.
| Conclusion|| |
Fear on the concept of organ donation, lack of awareness sessions in rural areas, poor communication and training skills to handle the bereaved families, and lack of incentives for the stakeholders and support from the administrators were found to be the barriers. The process of organ donation is affected by multiple sectors, and hence, it has to have a multisectoral approach to tackle the problems and to narrow the demand and supply gap.
While the sample size is not small for a qualitative study, responses were collected only from the available participants. In addition, the study is limited to a tertiary care government setting, where the transplants are done at no cost, and the intersectoral coordination is much easier as compared to smaller settings, due to the reputation of the hospital. This may have underestimated the problems faced by the stakeholders, but the aim of this paper was to gather the subjective views on barriers and suggestions and not to extrapolate it to the population as like the quantitative study. Furthermore, the other uncertainty showed in the quantitative study such as the understanding on brain death and objection from the forensic experts involved did not come up in their views as barriers though they were discussed.
Further research on organ donation should be carried out using qualitative methods to inform the scientific world about the barriers toward organ donation in India from the participants' perspectives point since the quantitative method involves factors only perceived by the services provider to influence the organ donation in India.
Further studies such as the feasibility study on promoting lessons on organ donation for school students should be carried out as our study has shown the need for knowledge on organ donation and also other studies proving that interventions on educating students on organ donation will improve their knowledge, attitude, and practice.,,,,,
We thank the stakeholders, donor family and the recipient of a deceased donor for their consent to participate in this study. We also thank Dr. Mahalakshmy T and Dr. Vishvaja Sambath from the Department of Preventive and Social Medicine, JIPMER and JIPMER International School of Public Health (JISPH), JIPMER respectively for their constant support and contribution throughout this study.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2]