An empirical investigation on the impact of attitudes towards organ donation in India

Introduction

Organ donation is a significant milestone in the process of evolution of modern medicine. The act of donating an organ or a portion of an organ for transplantation to another person is known as organ donation. The Transplantation of Human Organs Act (Section 2), 1994, defines “transplantation as the grafting of any human organ from any living person or deceased person to some other living person for therapeutic purposes”. This is the only way to prolong life and enhance the quality of life for people with terminal organ failures (Bedi et al., 2015). When Joseph E Murray and his colleagues performed the very first successful kidney transplant in Boston in 1954, the concept of organ donation gained traction (Watts, 2011). In the seven decades since organ transplantation has emerged to be a successful practice worldwide with kidneys, liver, and heart being the most transplanted solid organs (WHO, 2020) and musculoskeletal grafts & cornea being the most transplanted tissues. The International report on Organ Donation and Transplantation Activities (WHO, 2022) reported 129681 solid organ transplants globally in 2020. Despite this number of reported donations, there is still a supply-demand imbalance in the organ and tissue donation (OTD) space. The report further cites 17 deaths occurring every day due to the non-availability of organ donors and the existing donations are only catering to less than 10 percent of the global need. There is a significant difference between nations in the availability of appropriate transplantation procedures as well as in the level of safety, effectiveness, and quality of human cells and, OTD & transplantation. These systemic factors contribute to broadening the need-availability gap.

Literature review

In the Indian context, despite its demographic dividend, the rate of organ donation has been abysmally low. There is a significant mismatch between the demand and supply status in India. Despite the fact that approximately 180,000 people are estimated to suffer from renal failure each year, only 6,000 kidney transplants are performed (Chang et al., 2020). A timely liver transplant could save approximately 15% of the two lakh individuals who succumb in India every year from liver cancer or liver failure. As a result, India requires between 25,000 to 30,000 liver transplants per year, but only about 1,500 are carried out. Similarly, over 50,000 people die from heart failure each year in India, but only 10% to 15% of heart transplants are performed (Tamuli et al., 2019). Despite a 100,000 need, only approximately 25,000 Cornea transplants are performed each year (Mohan et al., 2020). These figures are not encouraging, regardless of the efforts of the government and voluntary organizations. The government has attempted to bring in a systemic change to ensure a transparent system of OTD and to stop human organ trafficking. The Government legalized organ donation under the “Transplantation of Human Organs Act” (THOA, 1994), and the Act has undergone various amendments since then The National Organ Transplant Program was initiated in the 12^th five-year plan of the Government of India to promote organ transplantation (THOA, 1994). The National Organ and Tissue Transplantation Organization (NOTTO) has been established as a nodal agency for this program, and it serves as a national-level registry for organ donation and transplantation.

Organ shortage is a global issue, and it is imperative to take steps to bridge this gap. The Government and Non-Governmental organizations have in tandem taken various steps to encourage people to register for organ donation. Several initiatives that spread fundamental knowledge, and enhance familiarity with and develop positive attitudes toward organ donation have been adopted. For instance, legalising organ donation and organ donation awareness campaigns on various media platforms are examples of initiatives that have been implemented by private and public organizations (Meena et al., 2023).

Intention to donate organs is shaped by an individual’s knowledge of organ donation, attitude, and behaviour, and is further influenced by cultural and religious orientations (Chung et al., 2008; Rithalia et al., 2009; Mekahli et al., 2009; Ramadurg & Gupta, 2014; Manish et al., 2015; Vijayalakshmi et al., 2016, Vincent et al., 2022). Age, gender and socio-economic status, and education have been reported to have a significant influence on attitudes toward organ donation (Bilgel et al., 2004; Spigner et al., 2002; Saleem et al., 2009; Balwani et al., 2015). A study undertaken by Gorczyca and Hartman (2017) emphasized the importance of including millennials in a larger conversation about organ donation and transplantation as they could contribute to future campaign tactics at local and national governmental levels. As India has a 34.8 percent representation of millennials in the population, or people aged 17 to 34 (according to the data furnished by the Social Statistics Division of the Central Statistics Office, Ministry of Statistics and Programme Implementation, Government of India, as of 2011), they could contribute to accelerating reach of the campaigns. In a similar study, to this evidence, undertaken by the United States Department of Health and Human Services (2013), it was identified that people above the age of 65 were less likely to sign up for organ donation compared to those of the age group 18-34 years. Loughery et al. (2018) have also cited the age and education status of the donor as significant barriers to organ donation. Additionally, a study undertaken by Alex et al. (2017) provided evidence of an inadequate level of knowledge on organ donation among medical students served as a barrier to OTD. Hence it is imperative to assess the current knowledge level, attitude, and willingness to register for organ donation among various age groups and whether it varies across the population with the discipline of education.

There exists sufficient research evidence to conclude a positive significant association between willingness to discuss OTD with family and attitudes toward OTD (Knox et al., 2017; Kopfman, 2002; Thompson et al., 2004; Wu & Tang, 2009). Although this association has been established, the details of the discussion are still an enigma. Most of the research evidence indicates a similar influence on the intention of organ donation, although there is a lack of empirical evidence proving this hypothesis. Knowledge of organ donation also has a positive association with discussion intention (Guadagnoli et al., 1999). Among gender, women were more likely to discuss organ donation intention than men (Thompson et al., 2004). Even though there is a direct effect of willingness to discuss with family on intention to enroll as an organ donor, the mediating role of this construct has not been explored. There is a paucity of research evidence that documents awareness and attitude with respect to organ donation in the Indian community. Hence this study intends to explore this further. This study will also explore the mediating role of willingness to discuss organ donation between the attitude toward OTD and the intention to enroll as an organ donor. The conceptual framework that has been proposed is shown below (Figure 1).

Figure 1. Conceptual Framework.

Methods

Results

The demographic characteristics of the participants were analysed using IBM SPSS Statistics 27 software (Table 1). For the complete dataset, see Underlying data (Nayak & Nayak, 2023). Of the 259 respondents, 173 (67%) were female and 171 were between 18 to 26 years of age. 113 respondents had enrolled or completed their Bachelor’s education in the healthcare domain like medicine, life science, nursing, health science, and allied health (Table 1). All the participants reported that they are aware of organ and tissue donation but only 125 (41%) stated that they were aware of OTD (Table 2). A “chi-square test of independence” displayed that there was a significant association between education and awareness of the OTD act in India Χ2 (1, N = 259 = 6.980, p ≤ 0.05).

Participants’ knowledge of OTD was assessed by posing eight questions (Table 3). A majority (96.5%) of the participants were aware of the demand for transplants exceeding availability. They were also aware of the fact that many people were losing their lives due to the non-availability of organs to be transplanted (91.15%). Three questions were posed to the respondents to assess their knowledge of the implications of signing a donor card. The majority (95.8%) were aware they could specify the organs and tissues they want to donate on the donor card but only 33% of them knew that they could change their mind after signing the donor card. Two-thirds of the participants thought that the next of kin (family) must permit donation to occur even if the donor had signed the donor card. Participants were also assessed on their knowledge of how medical viability for donation is determined. More than half of the participants (51.7%) were not aware that the age or medical condition of the donor is important antecedent of becoming an organ donor. Whereas 82% of the participants knew that signing up for organ donation would not change the line of treatment they would receive in the future. Around 68% of the respondents believed that religious people would not oppose OTD. However, the standard deviation and mean of the knowledge score were estimated to be 1.116 and 5.25. The mean of the knowledge score of samples from the healthcare domain (7) was higher than the mean of both medical and non-medical participants put together.

Reliability and validity analysis

The measurement model was evaluated to determine the constructs’ reliability and validity (Table 4) and the Structural Model evaluation is presented in Figure 2. First, the factor loadings of all items in the model were checked to ensure that they were greater than the minimum acceptable value of 0.5 (Hair et al., 2017a). Vinzi et al. (2010) opine a minimum acceptable factor loading of 0.7 but in social science studies, researchers frequently obtain lower outer loadings. Instead of automatically eliminating the indicators, it would be better to assess the impact of their elimination on the improvement in the reliability and validity of the constructs. Hair et al. (2017a) recommend the elimination of the indicators with factor loading in the range of 0.4 to 0.7 only if it increases the value of composite reliability (Average Variance Extracted) beyond the threshold value. In our research endeavour, the removal of item (A1, loading = 0.504 & A6, loading =0.431) had a significant influence on composite reliability and hence was eliminated.

Table 4. Evaluation of the Measurement Model.

		Model loadings	Cronbach’s alpha	Composite reliability (rho_a)	Composite reliability (rho_c)	Average variance extracted (AVE)	Model weights	VIF
Attitude towards OTD	A2	0.617***	0.759	0.772	0.839	0.512	0.25	1.283
	A3	0.831***					0.314	1.901
	A4	0.715***					0.296	1.5
	A5	0.669***					0.207	1.43
	A7	0.728***					0.322	1.37
Intention to sign	IS1	0.917***	0.88	0.906	0.92	0.745	0.297	4.417
	IS2	0.94***					0.323	4.238
	IS3	0.902***					0.31	3.052
	IS4	0.663***					0.217	1.365
WTD with family	WTD1	0.802***	0.872	0.887	0.911	0.719	0.802	1.519
	WTD2	0.877***					0.877	3.127
	WTD3	0.865***					0.865	3.312
	WTD4	0.845***					0.845	2.325

*** p < 0.01.

** p < 0.1.

Figure 2. Structural Model Evaluation.

Cronbach’s alpha, rho a, and composite reliability were used to assess reliability; statistical values were higher than the recommended threshold value of 0.7 (Wasko & Faraj, 2005). The value of rho_a was found to be in between composite reliability (Hair et al., 2017a) and Cronbach’s alpha, and was also above 0.7 indicating excellent reliability (Henseler et al., 2016). “Average Variance Extracted” (AVE) was higher than 0.5 hence establishing convergent validity. Fornell & Larcker method was employed to establish discriminant validity (Table 5).

Table 5. Discriminant validity.

Fornell Larcker
	Attitude towards OTD	Intention to sign	WTD with family
Attitude towards OTD	0.716
Intention to Sign	0.475	0.863
WTD with family	0.407	0.639	0.848

Importance Performance Matrix Analysis

The Important-Performance Matrix Analysis (IPMA) elucidates the relative importance and performance of exogenous (attitude towards OTD & willingness to discuss with family) and endogenous constructs (intention to sign the OTD card) in relation to one another. Total effects and index values represent their significance and performance. Importance reveals the overall effect on the endogenous variable. The performance demonstrates the potential of latent variable scores. The X and Y axes are used to quantify importance and performance. The total effect is represented by the X-axis, while performance is represented by the Y-axis. A construct performs better when it has a higher mean value (Hair et al., 2017a; Hock et al., 2010; Rigdon et al., 2011) (Figure 3 and Table 7). The results of IPMA analysis reveal that willingness to discuss with family displays a high performance of 69.581 and a high total effect of 0.534 in comparison with the other exogenous (attitude towards OTD) displaying a performance of 83.028 and a total effect of 0.475. Hence a unit of increase in performance of attitude towards OTD enhances intention to sign donor card from 66.087 to 66.562. Similarly, an increase in one unit of construct, willingness to discuss with family would increase the performance of construct intention to sign OTD card by 0.534 points to 66.621 points. Figure 4 represents the IPMA map.

Figure 3. IPMA Analysis.

Table 7. IPMA: Outcome variable – Intention to sign OTD card.

Exogenous Constructs	Total Effect	Performance
Attitude towards OTD	0.475	83.028
WTD	0.534	69.581

Figure 4. Importance Performance Map.

Discussion

This study intended to explore the knowledge of OTD across age groups in the Indian population. The goal was to assess the general public’s knowledge and attitude toward organ donation. The findings show that most participants had heard about organ donation and had a favourable attitude toward it. These research findings are similar to results obtained by previous studies by Vijayalakshmi et al. (2016), Mithra et al. (2013), Sarveswaran et al. (2018). Results show that people are aware of OTD but only 41% were aware of the organ donation law in India. Awareness of THOA in 1994 was astonishingly low. The knowledge score was moderate across the population of the study.

In line with previous studies, we observed that the primary sources of information on organ donation were television and newspapers, healthcare service providers, and followed by social media and the internet. In line with the previous studies, healthcare service providers played an integral role in creating awareness of OTD (Vijayalakshmi et al., 2016; Narendran et al., 2022). They could be the primary motivators in raising awareness among their family, friends, relatives, and neighbours. A recent 5-year retrospective case record analysis revealed that only 10 (5%) of 205 patients diagnosed as brain dead had their organs donated (Sawhney et al., 2013). This study again highlights the lack of awareness of the concept of organ donation and the need for the relevant stakeholders to collectively work together to strengthen awareness of OTD. As a result, both governmental and non-governmental organizations should play an active role in raising public awareness about brain death. THOA was enacted in 1995, but only 42% of participants were aware of organ donation legislation. These findings were comparable to previous studies that found 5.7% (Vijayalakshmi et al., 2016) & 13.9% (Pouraghaei et al., 2015). The stakeholders could adopt television and digital campaigns to enhance awareness of OTD, the process involved, and THOA. According to the Global Overview report 2022, 35% of the Indian population resides in the urban landscapes of the country and most of this population has access to television, the internet, and social media (Digital 2022 Global Overview Report, 2022). Hence, emphasis on television and digital campaigns could contribute strongly to creating awareness and registering for OTD as most of the participants (96%) are aware that people are dying due to lack of availability of organs. In general, the donor will be given the organ donation card after signing it, and if the donor changes their mind about donating organs could tear up the organ donation card (Gungormüs & Dayapoglu, 2014). The majority of our study’s participants (66%) believed that once they signed the organ donation card, they couldn’t change their minds. As a result, these issues must be addressed when creating public awareness programs. Issues concerning the signing of organ donation cards should be clarified by the government and non-governmental organizations. 68% of all those surveyed believed that various religions oppose OTD. These findings were consistent with the documented literature, which indicated that religious beliefs were the most significant barrier to organ donation (Patthi et al., 2015; Vijayalakshmi et al., 2016). In India, the family traditionally looks after its members, even when they are sick. As a result, the consent of the next of kin is required for organ donation from a deceased donor (Ahlawat et al., 2013). Moreover, 61% of respondents agreed that knowing their family’s wishes after their death was important. As a result, family members must have a positive attitude toward organ donation. Around one-third of the respondents thought that various religions opposed OTD. These findings echo the findings of the research endeavours of Vijayalakshmi et al. (2016) and El-Menyar et al. (2020). Religious prohibitions were reported as a cause of not donating an organ by Hameed et al. (2016).

In line with the previous research evidence (Vijayalakshmi et al., 2016; Pouraghaei et al., 2015; Narendran et al., 2022) it is proved that attitude toward organ donation is significantly associated to becoming an organ donor (Hyde & White 2013; Teoh et al., 2020). In research studies undertaken in India, all have reported positive attitudes toward OTD and a considerable amount of awareness of OTD. The challenge encountered in developing regions like India is that despite the population being considerably aware of OTD, very few registered for organ donation. Having a positive attitude toward OTD is a significant antecedent to registering for OTD. The research undertaken by Topic et al. (2006) and Sengul and Sahin (2022) present evidence for the fact that the nature of education was significantly associated with attitude towards OTD. It was observed that health science professionals had a more positive attitude towards OTD in comparison to their colleagues from other professional disciplines. Our study echoes this evidence as it is observed that respondents from a medical and health science domain had a more positive attitude towards OTD. Hence there is a need to create awareness and build a positive attitude toward OTD among the non-health/medical science population as attitude defines the intention to be an organ donor.

Willingness to discuss with family is reported to have a positive mediation between attitude towards OTD and intention to be an organ donor. Hence there is a need for government and non-governmental stakeholders to normalize the discussion on OTD in society. There appears to be a lack of consideration for the topic which creates a communication barrier (Feeley & Servoss, 2005). An OTD-friendly environment and family can increase the willingness to donate organs. Seeing family approval and willingness may help individuals make positive decisions about the subject (Sengul & Sahin, 2022) As a consequence, it is essential to explain the issue to all family members through community educational activities using plans and brochures for all family members. It may be beneficial to plan mass communication campaigns to strengthen acceptance of the topic among the population at large.

Conclusion

This study provides several insights into the OTD scenario in India. This study revealed that there is a general awareness of OTD among the Indian population but they lack clarity on certain specific issues. The majority of participants were unaware of the legislation or the donation process & clarity on the role of family when the donor had signed the donor card was ambiguous. It was established that the willingness of the donor to discuss with family played an instrumental role in strengthening the intention to donate an organ. Attitudes toward organ donation was significantly different among people with health science or medical backgrounds and from engineering, management, and humanities domains. This situation highlights the need for governmental and non-governmental institutions to take up the mandate of creating awareness that could lead to bridging the demand-supply gap of organs in India.

The cross-sectional research design serves as a limitation of this research endeavour. Further studies could adopt qualitative or experimental approaches to explore the rationale of OTD. Future studies could investigate if the knowledge, attitude towards OTD, and organ donation intention varied across Generation Z (born between 1996-2000) and Millennials (born between 1981 to 1995) (Thangavel et al., 2021). Further, this research endeavour has been undertaken in the urban setting, which might limit the generalizability to the rural population. This will enable stakeholders to design appropriate campaigns and adopt the most appropriate media to create awareness of OTD thereby bridging the demand-supply gap.