© 2013 John Wiley & Sons A/S.
Clin Transplant 2013: 27: 757–763 DOI: 10.1111/ctr.12189
A survey of South Asian attitudes to organ donation in the United Kingdom Karim A, Jandu S, Sharif A. A survey of South Asian attitudes to organ donation in the United Kingdom. Abstract: Background: South Asians in the United Kingdom are overrepresented on the organ transplant waiting list but underrepresented as organ donors. In this study, we surveyed South Asian opinion with regards to organ donation. Methods: Voluntary completion of an anonymous survey was promoted amongst South Asians by both online and paper-based approaches. Logistic regression analysis was performed to assess independent predictors for organ donation approval. Results: Five hundred and fifty-six survey responses were analyzed in this study. 68.4% of respondents agreed with organ donation but only 13.3% were registered organ donors. Muslims were less likely than Hindus or Sikhs to agree with organ donation (59.3% vs. 92.2% vs. 88.7%, p < 0.001) or be registered donors (5.0% vs. 40.3% vs. 25.8%, p < 0.001), respectively. Religious guidance was important for Muslims, but parental approval of greater importance for Hindus. On logistic regression analysis, variables independently associated with organ donation approval were; young age, independent living from parents, non-Muslims, awareness of organ donation shortages, family member on dialysis/registered donor, and more liberal degrees of religious belief (all p < 0.05). Conclusion: South Asians in the United Kingdom are a heterogeneous group of different faiths, cultures, and values. We believe targeted strategies are required to raise awareness of organ donation amongst South Asians.
The disparity between supply and demand for organ transplants in the United Kingdom remains a concern, but the problem is more acute for potential recipients of South Asian ethnicity. Such individuals, also frequently termed as Indo-Asians, originate from the Indian subcontinent and constitute the largest minority ethnic population in the United Kingdom with a prevalence of 4.0% (1). Focusing on kidney transplantation, South Asians are overrepresented on kidney transplant waiting list in the United Kingdom and constitute 13.6% of the list. However, South Asians are reciprocally underrepresented as kidney donors and represent only 0.9%, 1.8%, and 7.3% of the donation after cardiac death, brain death, and living-donor kidney pool, respectively (2). As a consequence of biological differences between ethnic groups, South Asians are subsequently disadvantaged on the kidney transplant waiting list with prolonged waits for compatible kidneys compared with their white counterparts (3).
Asra Karim, Surinder Jandu and Adnan Sharif Department of Nephrology and Transplantation, Renal Institute of Birmingham, Queen Elizabeth Hospital, Birmingham, UK
Key words: British – ethnicity – Indo Asian – organ donation – religion – South Asian Corresponding author: Dr. Adnan Sharif, Renal Institute of Birmingham, Queen Elizabeth Hospital Birmingham, Mindelsohn Way, Edgbaston, Birmingham B15 2WB, UK. Tel.: 00 44 121 371 5861; fax: 00 44 121 371 5858; e-mail: [email protected] Conflict of interest: None. Accepted for publication 5 June 2013
As a response to tackle this disparity, there has been a concerted effort to boost organ donation amongst South Asians in the United Kingdom, but such campaigns have had only limited success. Understanding the obstacles to organ donation amongst South Asians is important to allow design of targeted strategies to achieve organ procurement. Unfortunately, our current strategies have largely failed to appreciate the heterogeneity of this unique population and the need for ethnocentric approaches (4). South Asians in the United Kingdom originate from a disperse region encompassing India, Pakistan, and Bangladesh (and to lesser degree Nepal, Sri Lanka, and Maldives) and have diverse religions, languages, and cultural upbringings that add a layer of complexity to understanding their concerns about organ donation. Therefore, a “one size fits all” approach to the South Asian population may be counterproductive when translated into coordinated national campaigns.
757
Karim et al.
To aid strategic efforts to boost organ donation from the largest ethnic minority group in the United Kingdom, the aim of this study was to explore South Asian attitudes to organ donation quantitatively using an anonymous survey of opinion.
Materials and methods Survey design
The survey was designed on the basis of information from focus groups, literature review, guidelines from national authorities, and material from South Asian web groups. The framework of respondent questions and answers was derived from a previously published survey exploring Muslim attitudes to organ donation (5), with the survey modified accordingly to reflect the new target audience.
was assessed using the Kolmogorov–Smirnov tests. Descriptive statistics were used to estimate the frequencies, means, and medians of study variables. For continuous variables, Student t-test and Mann–Whitney test were used for parametric and non-parametric data, respectively. Difference between groups was assessed with two-sided Fisher’s exact test or Pearson chi-square for categorical variables as appropriate. Binomial logistic regression analysis was utilized to identify independent factors predicting for the key dependent variable endpoints of organ donation approval and registered organ donors. Quoted regression results were obtained by entering significant variables only into a final backward logistic regression model.
Results Study response
Study sample and administration
Online completion of the survey was conducted utilizing the website Surveymonkey.comâ, with a web-link posted on internet-based forum groups and emailed to South Asian groups. In addition, paper-based questionnaires were distributed in mosques, temples, and gurdwaras, with completed surveys manually entered into the database. This was an attempt to address the potential limitations introduced with an exclusive online approach. The survey was conducted in the English language, although participants were encouraged to assist non-English respondents in completion of the survey. There was no monetary incentive for the voluntary participation or completion of this survey, and anonymity was maintained. Statistical analysis
The key endpoints of interest were quantification of what proportion of South Asians in the United Kingdom agreed with organ donation and how many were registered organ donors. For the purpose of sample power calculations, we calculate the South Asian population in the United Kingdom to be 2 331 423 according to the 2001 national census report (1). To minimize the level of uncertainty, we targeted a minimum number of 385 completed surveys (based on 5% error margins [margin of error willing to tolerate] and 95% confidence intervals [level of uncertainty willing to tolerate]). Completion of the survey was event driven and we considered our sampling adequate when a minimum number of 385 completed surveys had been achieved. Statistical analysis was performed using SPSS version 20 (Chicago, IL, USA). Normality of data
758
Two separate surveys were conducted between June 2009 and November 2011 based upon religious attitudes, with our report surveying Muslim attitudes to organ donation previously published (5). This analysis is a synthesis of all South Asian respondents from the Muslim survey and a subsequent Hindu/Sikh survey, with the analysis limited to respondents residing in the United Kingdom only. In this post hoc analysis, 556 South Asians residing in the United Kingdom who took the surveys were analyzed collectively (481 [86.5%] were completed fully). Respondent demographics
Table 1 highlights the demographics of the South Asian survey respondents. Further subanalysis demonstrated differences in the demographics of South Asians when categorized by religion. Hindus and Sikhs were all exclusively of Indian origin, while Islam was the exclusive religion for Pakistani/Bangladeshi origin (and for 28.3% for South Asians of Indian origin). The Muslim population was more likely to be living with parents and less likely to class themselves as professionals. Muslims were also more likely to class themselves as very religious and their faith had more influence on their daily decision-making. No significant difference between religious affiliations was determined in any other demographic variable. South Asian views on organ donation
Analyzing the whole cohort, 68.4% of South Asian respondents agreed with organ donation but only 13.3% were registered organ donors. 90.9% agreed
South Asian organ donor survey Table 1. Demographics of surveyed British South Asian population
Table 2. South Asian attitudes to organ donation split by religious affiliation
Parameter
Number (%)
Male gender Age Under 16 16–29 30–39 40–49 50–59 60–69 70+ Respondents have children Marital status Married Single Cohabiting, civil partnership Education School College University Live with parents Ethnicity Indian Pakistani/Bangladeshi Religion Islam Hinduism Sikhism
225 (40.6)
Survey response
18 (3.2) 267 (48.0) 158 (28.4) 51 (9.2) 37 (6.7) 17 (3.1) 8 (1.4) 245 (44.1)
Agree with organ donation Registered organ donor Compatible with their faith Agree with blood donation Difference between donating blood and organ Difference between receiving and donating organs Happy to receive organ Would not take xenotransplant Only receive from fellow adherent Only give to fellow adherent
289 (52.0) 218 (39.2) 49 (8.8) 63 (11.3) 107 (19.2) 386 (69.4) 227 (40.8) 238 (42.8) 318 (57.2) 356 (70.8) 80 (15.9) 67 (13.3)
with blood donation, but 58.0% believe there was a difference between donation of blood vs. donation of organs. On a lesser scale, 19.1% of respondents felt there was a difference between donating and receiving an organ. Subsequently, only 2.7% of South Asian respondents categorically ruled out taking an organ if required, with most either happy to receive (70.5%) or unsure (26.4%). South Asian organ donation view – religious influence
We explored South Asian attitudes to organ donation after dividing the cohort into religious affiliation (see Table 2). Stark differences were observed amongst South Asians from the United Kingdom in attitudes to organ donation dependent upon faith, with our Muslim respondents demonstrating less favorable attitudes to organ donation than either Hindu or Sikh respondents. However, there was no difference in opinion amongst South Asians of different faiths when asked if they were happy to receive an organ transplant if one were required. South Asian organ donation view – country of origin influence
Next, we explored the influence of ethnic origin on organ donation views amongst South Asians, by comparing views of Indian vs. Pakistani/
Muslim (%)
Hindu (%)
Sikh (%)
p Value
59.3 5.0 39.8 87.6 61.4
92.2 40.3 46.8 100.0 41.6
88.7 25.8 79.0 96.8 59.7
Clin Transplant 2013: 27: 757–763 DOI: 10.1111/ctr.12189
A survey of South Asian attitudes to organ donation in the United Kingdom Karim A, Jandu S, Sharif A. A survey of South Asian attitudes to organ donation in the United Kingdom. Abstract: Background: South Asians in the United Kingdom are overrepresented on the organ transplant waiting list but underrepresented as organ donors. In this study, we surveyed South Asian opinion with regards to organ donation. Methods: Voluntary completion of an anonymous survey was promoted amongst South Asians by both online and paper-based approaches. Logistic regression analysis was performed to assess independent predictors for organ donation approval. Results: Five hundred and fifty-six survey responses were analyzed in this study. 68.4% of respondents agreed with organ donation but only 13.3% were registered organ donors. Muslims were less likely than Hindus or Sikhs to agree with organ donation (59.3% vs. 92.2% vs. 88.7%, p < 0.001) or be registered donors (5.0% vs. 40.3% vs. 25.8%, p < 0.001), respectively. Religious guidance was important for Muslims, but parental approval of greater importance for Hindus. On logistic regression analysis, variables independently associated with organ donation approval were; young age, independent living from parents, non-Muslims, awareness of organ donation shortages, family member on dialysis/registered donor, and more liberal degrees of religious belief (all p < 0.05). Conclusion: South Asians in the United Kingdom are a heterogeneous group of different faiths, cultures, and values. We believe targeted strategies are required to raise awareness of organ donation amongst South Asians.
The disparity between supply and demand for organ transplants in the United Kingdom remains a concern, but the problem is more acute for potential recipients of South Asian ethnicity. Such individuals, also frequently termed as Indo-Asians, originate from the Indian subcontinent and constitute the largest minority ethnic population in the United Kingdom with a prevalence of 4.0% (1). Focusing on kidney transplantation, South Asians are overrepresented on kidney transplant waiting list in the United Kingdom and constitute 13.6% of the list. However, South Asians are reciprocally underrepresented as kidney donors and represent only 0.9%, 1.8%, and 7.3% of the donation after cardiac death, brain death, and living-donor kidney pool, respectively (2). As a consequence of biological differences between ethnic groups, South Asians are subsequently disadvantaged on the kidney transplant waiting list with prolonged waits for compatible kidneys compared with their white counterparts (3).
Asra Karim, Surinder Jandu and Adnan Sharif Department of Nephrology and Transplantation, Renal Institute of Birmingham, Queen Elizabeth Hospital, Birmingham, UK
Key words: British – ethnicity – Indo Asian – organ donation – religion – South Asian Corresponding author: Dr. Adnan Sharif, Renal Institute of Birmingham, Queen Elizabeth Hospital Birmingham, Mindelsohn Way, Edgbaston, Birmingham B15 2WB, UK. Tel.: 00 44 121 371 5861; fax: 00 44 121 371 5858; e-mail: [email protected] Conflict of interest: None. Accepted for publication 5 June 2013
As a response to tackle this disparity, there has been a concerted effort to boost organ donation amongst South Asians in the United Kingdom, but such campaigns have had only limited success. Understanding the obstacles to organ donation amongst South Asians is important to allow design of targeted strategies to achieve organ procurement. Unfortunately, our current strategies have largely failed to appreciate the heterogeneity of this unique population and the need for ethnocentric approaches (4). South Asians in the United Kingdom originate from a disperse region encompassing India, Pakistan, and Bangladesh (and to lesser degree Nepal, Sri Lanka, and Maldives) and have diverse religions, languages, and cultural upbringings that add a layer of complexity to understanding their concerns about organ donation. Therefore, a “one size fits all” approach to the South Asian population may be counterproductive when translated into coordinated national campaigns.
757
Karim et al.
To aid strategic efforts to boost organ donation from the largest ethnic minority group in the United Kingdom, the aim of this study was to explore South Asian attitudes to organ donation quantitatively using an anonymous survey of opinion.
Materials and methods Survey design
The survey was designed on the basis of information from focus groups, literature review, guidelines from national authorities, and material from South Asian web groups. The framework of respondent questions and answers was derived from a previously published survey exploring Muslim attitudes to organ donation (5), with the survey modified accordingly to reflect the new target audience.
was assessed using the Kolmogorov–Smirnov tests. Descriptive statistics were used to estimate the frequencies, means, and medians of study variables. For continuous variables, Student t-test and Mann–Whitney test were used for parametric and non-parametric data, respectively. Difference between groups was assessed with two-sided Fisher’s exact test or Pearson chi-square for categorical variables as appropriate. Binomial logistic regression analysis was utilized to identify independent factors predicting for the key dependent variable endpoints of organ donation approval and registered organ donors. Quoted regression results were obtained by entering significant variables only into a final backward logistic regression model.
Results Study response
Study sample and administration
Online completion of the survey was conducted utilizing the website Surveymonkey.comâ, with a web-link posted on internet-based forum groups and emailed to South Asian groups. In addition, paper-based questionnaires were distributed in mosques, temples, and gurdwaras, with completed surveys manually entered into the database. This was an attempt to address the potential limitations introduced with an exclusive online approach. The survey was conducted in the English language, although participants were encouraged to assist non-English respondents in completion of the survey. There was no monetary incentive for the voluntary participation or completion of this survey, and anonymity was maintained. Statistical analysis
The key endpoints of interest were quantification of what proportion of South Asians in the United Kingdom agreed with organ donation and how many were registered organ donors. For the purpose of sample power calculations, we calculate the South Asian population in the United Kingdom to be 2 331 423 according to the 2001 national census report (1). To minimize the level of uncertainty, we targeted a minimum number of 385 completed surveys (based on 5% error margins [margin of error willing to tolerate] and 95% confidence intervals [level of uncertainty willing to tolerate]). Completion of the survey was event driven and we considered our sampling adequate when a minimum number of 385 completed surveys had been achieved. Statistical analysis was performed using SPSS version 20 (Chicago, IL, USA). Normality of data
758
Two separate surveys were conducted between June 2009 and November 2011 based upon religious attitudes, with our report surveying Muslim attitudes to organ donation previously published (5). This analysis is a synthesis of all South Asian respondents from the Muslim survey and a subsequent Hindu/Sikh survey, with the analysis limited to respondents residing in the United Kingdom only. In this post hoc analysis, 556 South Asians residing in the United Kingdom who took the surveys were analyzed collectively (481 [86.5%] were completed fully). Respondent demographics
Table 1 highlights the demographics of the South Asian survey respondents. Further subanalysis demonstrated differences in the demographics of South Asians when categorized by religion. Hindus and Sikhs were all exclusively of Indian origin, while Islam was the exclusive religion for Pakistani/Bangladeshi origin (and for 28.3% for South Asians of Indian origin). The Muslim population was more likely to be living with parents and less likely to class themselves as professionals. Muslims were also more likely to class themselves as very religious and their faith had more influence on their daily decision-making. No significant difference between religious affiliations was determined in any other demographic variable. South Asian views on organ donation
Analyzing the whole cohort, 68.4% of South Asian respondents agreed with organ donation but only 13.3% were registered organ donors. 90.9% agreed
South Asian organ donor survey Table 1. Demographics of surveyed British South Asian population
Table 2. South Asian attitudes to organ donation split by religious affiliation
Parameter
Number (%)
Male gender Age Under 16 16–29 30–39 40–49 50–59 60–69 70+ Respondents have children Marital status Married Single Cohabiting, civil partnership Education School College University Live with parents Ethnicity Indian Pakistani/Bangladeshi Religion Islam Hinduism Sikhism
225 (40.6)
Survey response
18 (3.2) 267 (48.0) 158 (28.4) 51 (9.2) 37 (6.7) 17 (3.1) 8 (1.4) 245 (44.1)
Agree with organ donation Registered organ donor Compatible with their faith Agree with blood donation Difference between donating blood and organ Difference between receiving and donating organs Happy to receive organ Would not take xenotransplant Only receive from fellow adherent Only give to fellow adherent
289 (52.0) 218 (39.2) 49 (8.8) 63 (11.3) 107 (19.2) 386 (69.4) 227 (40.8) 238 (42.8) 318 (57.2) 356 (70.8) 80 (15.9) 67 (13.3)
with blood donation, but 58.0% believe there was a difference between donation of blood vs. donation of organs. On a lesser scale, 19.1% of respondents felt there was a difference between donating and receiving an organ. Subsequently, only 2.7% of South Asian respondents categorically ruled out taking an organ if required, with most either happy to receive (70.5%) or unsure (26.4%). South Asian organ donation view – religious influence
We explored South Asian attitudes to organ donation after dividing the cohort into religious affiliation (see Table 2). Stark differences were observed amongst South Asians from the United Kingdom in attitudes to organ donation dependent upon faith, with our Muslim respondents demonstrating less favorable attitudes to organ donation than either Hindu or Sikh respondents. However, there was no difference in opinion amongst South Asians of different faiths when asked if they were happy to receive an organ transplant if one were required. South Asian organ donation view – country of origin influence
Next, we explored the influence of ethnic origin on organ donation views amongst South Asians, by comparing views of Indian vs. Pakistani/
Muslim (%)
Hindu (%)
Sikh (%)
p Value
59.3 5.0 39.8 87.6 61.4
92.2 40.3 46.8 100.0 41.6
88.7 25.8 79.0 96.8 59.7
