A Study to Assess the Knowledge, Attitude and Misconceptions regarding Organ Donation after Brain Death among common People in Rural Areas

 

Mr. Deepu Prasad1*, Ms. Prasasya C R1 , Ms. Neethu Philip1, Ms. Jyothi T Babu2

1Lecturer, Amrita College of Nursing, Amrita Institute of Medical Sciences (AIMS), Amrita Vishwa Vidyapeetham University, Kochi, Kerala, India

22nd Year Post Basic B.Sc. Nursing Students, Amrita College of Nursing, Amrita Institute of Medical Sciences (AIMS), Amrita Vishwa Vidyapeetham University, Kochi, Kerala, India

*Corresponding Author’s Email: sdaljit473@gmail.com

 

ABSTRACT:

Demand of organs for transplantation continues to exceed the limited supply all over the world. This gap of demand and supply is themain obstacle to transplantation. There is lack of awareness and correct knowledge among public and there are many misconceptions surrounding organ donation leading to hesitancy in  donating organs. In  the western world, 90%  of donations are from brain dead donors and only 10% are from living donors. Currently in India, about 95% of all the transplants are living donations and just 5% are from brain dead.   The present study intends to assess the knowledge, attitude  and  misconceptions  regarding  organ  donation  after brain death among  common  people in  selected  rural areas . Methodology: A quantitative cross sectional design with convenience sampling was used.  Knowledge, attitude and misconceptions of 100 people were assessed using a structured knowledge questionnaire, Five point Likert and structured dichotomous questionnaire respectively. Major findings: Majority of the samples were in the age group 41-50 years  (27%) and  higher proportions (80%) and  them  were females. Regarding the educational status, majority (35%) was having  higher  secondary education  and  21%  of  the samples were graduates.  Only 5% of samples have good knowledge level regarding organ donation after brain  death  and  majority  (70%)  has average  knowledge. The mean knowledge score is 10.03 +/_ 3.373 (max score =20). It is interesting to note that one by third  (25%)  of the people has poor knowledge  about  organ donation after brain death.  Even  though  the knowledge  level  is  poor,  nearly  half  of  the subject (45%) has good attitude regarding organ donation. Majority of the study participants  (54%)  has average attitude towards organ donation after brain death. The mean attitude score is 38.1+/- 4.461 (max score=50). Regarding the various misconceptions  about organ donation after brain death, 40% of  the samples  think that  the mind of  the recipient will change if we  transplant  the  heart.  Half of the people  (50%)  believe  that  organs  of  a  female cannot be transplanted  to a  male.  64%  of  the  study  participants  feel  that  there is  a chance to misuse  the donated organs. Nearly half  of  the  people  (44%)  believe  that treatments are  available  to reverse the brain death. Conclusion: Assessment of knowledge,  attitude  and misconceptions  on organ  donation is  essential for  better  understanding  of  the  community  on  different  aspects  of  organ  donation. This  study implies the  need  for  intensified  and  sustained  education campaign  to  raise the knowledge  on  organ  donation  after  brain  death  and  thereby  removing  the hurdles  behind  organ  donation.

 

KEYWORDS:. Attitude, Knowledge, Misconceptions, Organ donation, Brain death.


 

INTRODUCTION:

Organ donation is defined as the removal of tissues  from  the human body, from a living or dead person, for  the  purpose of transplantation as a treatment1. Organ  transplantation is the most preferred  treatment modality for end stage organ  disease and organ failures2. Organ transplants save thousands of lives every year. The success of transplants surgery has improved remarkably.  It  offers a better  quality of life and also  has better  long  term survival  benefits3.

 

Brain death is the total and irreversible loss of all brain function and the circumstances under which the donation of vital organs most commonly takes place. Brain death occurs  in  patients  who suffered a  severe  injury  to  the brain. As a result  of  the  injury,  the  brain  cells  and  obstruct  it’s  own  blood  supply  causing  brain  tissue  to  die  and  permanent  loss  of  brain  function.  However  the  vital  organ  such  as  heart,  lungs,  liver,  pancreas  and  kidneys  can  be  kept  viable  for  a  few  days  if  supported  by  artificial  or  mechanical  support.  Because    life  support  machine  maintain  the  persons  breathing  and  heart  rate,  they  are  warm  to  touch.  This  gives  the  illusion  to the  family  members  that  the  person  is  still alive.  Family  members  may  hold  a  falls  hope  that   the  persons  is  just  comatose  and  could  wake  up  with  time  or  treatment.  But  it  is  during  this  time,  the  family  members  should  understand  the  meaning  of  brain  death  can  opt  for  donating  the  vital  organs  of  dead  persons to an end  stage  patient  who  is  waiting  for  a  second  chance  at  life.  But  due  to  the  lack  of  knowledge  of  people,  patient  deemed  fit  for  transplantation  by   the  transplant  team  often  wait  expectantly  for  a  donor  organ  or  these  patients  may  die  while  waiting  for  that  gift  of  life.

 

The  era  of  clinical  organ  transplantation  began  in  1954  when  Joseph  Murray  transplants  a  kidney  from  one  identical  twin  to  another.  Following which, worldwide organ transplantation saves thousands of lives.  But  the  issues  of  organ  donation  is  complex  and  multifactorial  involving  medical,  legal,  Ethical,  Organisational  and  social  factors.  According to WHO; kidney transplants are carried out in   91 countries.  Around  66,000  kidney  donations,  21,000  liver  donations  6000  heart  donations   were transplanted  globally  in  2005.  But  still  there  is  an  increasing  disharmony  between  the  no  of  patients  on  the  waiting  list  for  the  organ  transplantation  and  the  available  number  of  deceased  donor  organs. 

 

According  to  WHO,  with  rise  in  case  of  kidney  disease   and  renal  failure,  there  are  2,00,000  people  on  waiting  lists  for  kidneys.  Organ  shortages  are  a  global  problem,  but  Asia  lags  behind  much  of  rest  of  the  world.  Organ donation following brain stem death is infrequent in India.  The  current  organ  donation  for  cadaver  in  India  is  0.08  per  million  while  Spain  tops  the  list  with  35  per  million.  There is  a  huge  shortage  of  organs  in  India,  and  the  patients  die  while  on  the  waiting  list  as  they  do  not  get  an  organ  on  time.  Only  5%  of  all  patients  with  end  stage  kidney  disease  are  successfully  in  undergoing  kidney  transplantation.  The  current  demand  in  the  country  for  kidney  transplantation  is  1,50,000,  liver  2,00,000  and  heart  1,50,0004.

 

Statistics  show  that  Australia  has  11  organ  donors  per  million,  Britain  has  27,  Canada  has  14,  Spain  has  35.1  donors, U.S.A  has  26  donors  per  million  where  as  India  has  only  0.08  donors  per  million  population.  The  annual  deaths  are  approximately  5,00,000  because  of  non-availability  of  organs  of  whom  2,00,000  people  die  of  Liver  disease,  50,000  people  die  from  heart  disease5.  At  least  1,50,000  people  await  for  kidney  transplant  but  only  5000  get  organs  and  almost  1,000,000  lakh  people  suffer  from  corneal  blindness  and  await  transplant.  According  to  a  study  in  2009,  India  ranked  second  in  the  world  in  live  related  kidney  transplants  but  only  40  in  the  total  number  of  transplants6.

 

From  the  statistics,  it  is  a  clear  that,  in  India  there  is  a  great  need  for  human  organs  as  there  is  critical  shortage  of  the  same  for  transplantation.  The  shortage  in  organ  supply  is  due  to  lack  of  awareness  and  correct  knowledge  among  public,  myths  and  misconceptions  surrounding  organ  donation  due  to  religious  and  cultural  barriers  leading  to  hesitancy  in  donation  of  human  organs6.  The  greatest  impediment  to  organ  donation  after  brain  death  is  the  refusal  of  family  consent.  Organ  donation  rates  could  be  increased  by  enhancing  the  quality  of  hospital  care  and  ensuring  that  the  request  for  donation  is  handled  in  a  way  that  meets  the  families  informational  and  emotional  needs.

 

A  study  conducted  in  Chennai,  to  assess  the  knowledge,  attitude  and  practice about  organ  donation  among  college  students  reveals  that,  though  all  the  participants  were  aware  of  the  term  organ  donation,  knowledge  about  different  aspects  was  low.  86.1%  were  not  aware  legislation  75%  respondents  were  in  favour  of  organ  donation,  but  only  about  2%  were  registered  for  organ  donation7.

 

Health care providers play a key role in educating the public and act as a critical  link  to  engage  the  community  members  in  spreading  the  awareness  to  the  public.  Thus  understanding  their  knowledge,  attitude  and  misconceptions  regarding  organ  donation  after  brain  death  will  help  to  identify  the  gaps  and  provide  training  on  organ  donation. In  this  context  the  present  study  was  conducted  to  evaluate  the  knowledge,  attitude  and  misconceptions  about  organ  donation  among  people.     

 

MATERIALS AND METHODS:

A quantitative cross sectional design with convenience sampling was used.  Knowledge, attitude and misconceptions of 100 people selected  were  assessed  using  a  structured  knowledge  questionnaire, Five point Likert and a structured dichotomous questionnaire respectively.            Both descriptive and inferential statistics were used to analyse the data collected, Frequency distribution and percentage was used to calculate demographic data, level of knowledge, attitude and misconceptions. Association between variables were computed using chi -square analysis.

 

RESULTS:

Sample characteristics based on demographic profile.

Table 1: Distribution of subjects based on socio – demographic characteristics (n=100)

 

Socio-Demographic                                           variables                                              Percentage

1. Age in years

a) 20-30                                                                 25 

b) 31-40                                                                 17

c) 41-50                                                                 27

d) 51-60                                                                 20       

e) >60                                                                     11        

2. Gender

a) Male                                                                                    20        

b) Female                                                                                80        

3. Religion

a) Hindu                                                                                  73         

b) Christian                                                                             23     

c) Muslim                                                                                2

d) Others                                                                                   2   

4. Education 

a) Illiterate                                                                                0     

b) Primary                                                                               25     

c) High school                                                                         18      

d) Higher secondary                                                              35     

e) Graduate                                                       

5) Occupation

a) Government sector                                                           14

b) Private sector                                                                     10      

c) Self employee                                                                    9

d) Unemployment                                                                 56     

e) Retired                                                                                 2                  

f) Student                                                                                9                            

6) Type of family

a) Nuclear                                                                                81      

b) Joint family                                                                        19       

7) Family income

a) Below Rs5000/-                                                                 79     

b) Rs5001 - 10000/-                                                              14    

c) Rs10001 - 15000/-                                                            6       

d) > Rs15000/-                                                                       1      

 

Knowledge level of people regarding organ donation after brain death

 

Figure 1: knowledge level of people regarding organ donation

 

Attitude regarding organ donation after brain death

 

Figure 2: Attitude regarding organ donation after brain death

 

Major Misconceptions about Organ Donation after Brain Death

 

Table 3: Misconceptions about organ donation after brain death (n=100)

Sl. No

Misconceptions

Percentage of people

1.

 If heart is transplant, can change one’s mind

40%

2.

 

If your loved one is in a coma does that mean they are in brain dead

43%

3.

There is treatment available to reverse brain death

44%

4.

The organs from a female brain dead donor cannot transplant to a male recipient

50%

5.

The person with alcoholism and smoking can donate organs after brain death if organs are in good condition

25%

6.

Organ donation after brain death is disfigures the dead body

35%

7.

ABO compatibility is necessary when transplant an organ after brain death

13%

8.

A doctor can create brain death artificially and according to his will

37%

9.

The donated organs can be sold and misused by hospital authority

64%

10.

The donated organs after brain death should transplant immediately as early as possible

10%


Association between knowledge of the people with selected demographic variables

Table 4: Association between knowledge of the people with selected demographic variables

Demographic Variable        Poor                   Average               Good                                       Total               Chi- Square value                                                                                                             

Age

20 – 30                                         5                          18                          2                        25

31 - 40                                          3                          12                          2                                             17                                  0.465

41 - 50                                          5                          21                          1                                             27

51 - 60                                          8                          12                          0                                             20

>60                                                4                          7                            0                        11

Sex

Male                                              7                          12                         1                         20                                   0.507

Female                                          18                        58                         4                        80

Religion

Hindu                                            18                        51                         4                        73

Christian                                       5                          17                         1                         23

Muslim                                         0                          2                           0                         2                                      0.315

Others                                           2                          0                           0                         2

Education

Illiterate                                        0                          0                           0                         0

Primary                                         14                        10                         1                        25

High school                                  3                          15                         0                         18                                   0.001*

Higher secondary                       6                          28                         1                         35

Graduates                                    2                          17                         3                         22

Occupation

Govt. service                                2                           12                        0                         14

Private Service                            4                           5                          1                         10

Self – employed                          4                           5                          0                         9                                      0.441

Unemployed                                14                         39                        3                        56

Retired                                          1                           1                          0                         2

Student                                         0                           8                          1                         9

Type of family

Nuclear family                            20                                             57                       4                         81                                   0.986

Joint family                                 5                           13                       1                          19

Income

Below Rs 5000/-                         19                         56                        4                        79

Rs5001 – 10000/-                      6                           7                          1                         14

Rs10001 – 15000/-                   0                           6                          0                                   6                                   0.452  

Above Rs15000/-                       0                           1                          0                         1

⃰ P value <0.05 was considered statistically significant

 

Association between attitudes of the people with selected demographic variables

Table 5: Association between attitudes of the people with selected demographic variables

Demographic Variable        Poor                   Average               Good                                       Total               Chi- Square value                                                                                                             

Age in years

20 – 30                                         1                             12                         12                                        25

31 - 40                                          0                           8                          9                                              17

41 - 50                                          0                           20                        7                                              27                                     0.046*

51 - 60                                          0                           15                        5                                              20

>60                                                0                           11                        0                        11

Sex

Male                                              1                           14                        5                         20                                     0.103

Female                                          0                           52                        28                                          80

Religion

Hindu                                            0                           50                       23                      73       

Christian                                       1                           15                       7                          23    

Muslim                                         0                           0                         2                          2                                      0.253

Others                                           0                           1                         1                          2

Education

Illiterate                                        0                            0                        0                          0     

Primary                                         0                            22                      3                          25     

High school                                  0                            12                      6                          18                                   0.181

Higher secondary                       1                            21                      13                                           35  

Graduate                                      1                            10                      11                                           22    

Occupation

Govt. service                                0                           11                               3                                      14

Private Service                            0                            7                                3                                      10  

Self – employed                          0                            5                                4                                      9                                     0.871

Unemployed                                1                           37                               18                                   56     

Retired                                          0                           2                                 0                                      2

 Student                                        0                       4                                     5                                      9

Type of family

Nuclear family                            1                      56                               24                               81                                        0 .311  

Joint family                               0                     10                                        9                                     19

Income

Below Rs5000/-                          1                     49                                     29                                   79

Rs5001 – 10000/-                      0                     11                                     3                                      14                                        0.871

Rs10001 – 15000/-                    0                     5                                       1                                      6

Above Rs15000/-                       0                     1                                       0                                      1       

P value <0.05 was considered statistically significant

 


DISCUSSION:

Table 1 shows that among the selected population majority belongs to the age group 41 - 50 years (27%) and 20 - 30 years (25%). Regarding gender, 20% were males and 80% were females. Most of them belong to Hindu religion (73%). Regarding educational status, majority (35%) was having higher secondary education and 21%of the samples were graduates. As far as occupation is concerned 56% of them are unemployed 14% are working in government sector and 10% of them were working in private sector. Majority (81%) of them belongs to nuclear family.

 

A study conducted by Rakesh Shah et al (2015), to assess the knowledge and attitude about organ donation among commerce college students reveals that majority of the study participants were males (73.5%) and majority belongs to Hindu religion.  In the present study finding also majority belongs to Hindu religion (73%). But regarding the gender, in the present study majority were females (80%). Similar studies were conducted to assess the knowledge and attitude of college students regarding organ donation in different setting3

 

Even though organ and tissue transplantation has become an integral part of health care in every nation, the figure 1 depicts that only 5% of the samples have good knowledge level and majority (70%) has average knowledge. One by third (25%) of people has poor knowledge about organ donation after brain. The mean knowledge score was 10.8 with a standard deviation of 3.373. A similar study conducted by Jose A (2010) to assess the knowledge and attitude regarding organ donation among 200 adults in Bangalore. The finding shows that majority (52.22%) had moderate knowledge, only 5.56 % had adequate knowledge and 42.22% of persons had inadequate knowledge regarding organ donation. The present study findings coincide with the findings of the above quoted study in Bangalore. Assessment of attitude revealed that the majority (50%) had neutral attitude and 6.67% had favourable attitude towards organ donation.8 A study on knowledge, attitude and practices about organ donation among college students in Chennai, Tamil Nadu by Annadurai et al (2012) also highlights the importance of creating awareness among people regarding organ donation. Even though the participants of the study were college students, the knowledge about different aspects about organ donation was low. 86.1% were not aware of legislation.75 % of respondents were in favour of organ donation. When comparing with the results of the present study with the various studies done at International and national level majority of the people lacks knowledge about organ donation even though majority of them were willing to donate organs. This findings shows that there should be intensive health education campaigns to create awareness and to motivate people to donate organs after brain death in order to save many lives. 

 

Even though the knowledge level is poor, the figure 2 highlights that nearly half of the subjects (45%) has good attitude regarding organ donation. Majority of the study participants (54%) has average attitude towards organ donation after brain death. And only one subject is not favour of organ donation. The mean attitude score was 38.1 with a standard deviation of 4.461. A cross sectional study was conducted by K KManojan, Ramiz Raja and Vincy Nelson to assess knowledge and attitude towards organ donation in rural Kerala. It was published on February 5, 2014 in Academic Medical Journal of India. In this study majority (97%) of the participants had hear about organ donation but only 53% had a good knowledge, 48% had poor attitude towards being an organ donor. 50% thought that live organ donation can cause severe health problems. This finding contradicts with the present study findings. In the present study, even though only 5% had good knowledge about organ donation, 45% of the study participants had good attitude towards organ donation. But in the above quoted study, even though the knowledge level is high, the attitude of people towards organ donation is poor9. A cross sectional study was conducted by PrasannaMithra, Prithvishree         Ravindra and other group members on perceptions and attitudes towards organ donation among people seeking health care in tertiary care centres. This study included 863 people seeking general healthcare as outpatients. This study published in Indian Journal of palliative care in August 2013. Overall, 59.6% participants showed the willingness to donate organs. Females (64.1%) and participants from upper socio economic status (62.7%) had higher willingness rates for organ donation. Hindus (63.6%) and Christians (63.3%) had higher willingness rights for organ donation than Muslims (38.2%). Also, 23.7% participants showed willingness to donate eyes and 33.6% wished to donate any organs after death. The findings of the present study also highlights that majority of the females are willing to donate the organs10. In the light of present study and result from the other studies, it can be concluded that the reason for higher level of attitude towards organ donation is due to the effect of mass media. It might positively influence the attitude of people towards organ donation after brain death.

 

Regarding the various misconceptions about organ donation after brain death, table 3 shows that 40% of the samples think that mind of the recipient will change if we transplant the heart. 50% of people believe that organs of a female cannot be transplanted to a male. 64% of the study participant beliefs that there is a chance to misuse the donated organs. Nearly half of the people (44%) beliefs that treatments are available to reverse the brain death.  Michelle J. Irving, Allison tong, Stephen jan, Alan cass conducted a study to assess the factors that influence to the decision to be an organ donor it is an qualitative study that explore community attitudes towards living and deceased solid organ donation. The sample size was 1019 the decision to be an organ donor was influenced by relational ties, religious beliefs, cultural beliefs, family influences, body integrity, previous interaction with the health care system-medical mistrust, validity of brain death and fear of early organ retrieval, the individual knowledge about the organ donation process, major reservation about the process of donation. The review of qualitative study highlights that some intractable such as religion and culture, are often tied in more complex issues such as distrust of the medical system. Misunderstanding about religious beliefs and ignorance of donation occurs. Some religious beliefs obtained “I don’t want have of my body buried and half to go to heaven (90%)”. “After you die, you may go to another world. If you don’t have an eye, you cannot see”. Some cultural beliefs are generally concerned broader issues around health care, death and dying. Often these were based on superstition, including beliefs that discussing death of signing a donor card would lead one’s on death11.

 

The statistical analysis of present study showed in table 4 reveals that there is a significant association between education and knowledge level of people. (p< 0.05). There is no significant association between attitude of people with any of the demographic variables except age (p <0.05).   A descriptive study was conducted by Taimur Saleem, Sidra Ishaque, Nida Habib   and others (2009) on knowledge, attitude and practices survey on organ donation among a selected adult population on f Pakistan. Convenience sampling was used to generate the sample of 440. Data collection was carried out via face to face interview pretested questionnaire. Knowledge about organ donation was significantly associated with education (p=0.000) and socioeconomic status (p=0.038). 70/198 (35.3%) people expressed a high motivation to donate. Multiple logistic regression analysis revealed that higher level of education and higher socio economic status were significant (p<0.05) independent predictors of knowledge status of organ donation. In the present study, there is no significant association between knowledge levels with any other demographic variables12.

 

This study found out that even though there was the willingness for organ donation the knowledge regarding the same was lacking. In India, there is a significant demand for organ donation in spite of availability of organs. The implication of this study is to emphasize the need for educating the public about organ donation after brain death.

 

REFERENCES:

1.     Wikipedia, organ donation,(online) (Cited 2013 Jul 13), available from URL: http:// www.en.wikipedia.org/wiki/organ-donation.

2.     Filho MA, Ramalho H, Attitudes and awareness regarding organ donation in the western region of Sao Paulo, Transplant Proc, 1995;27:1835.

3.     Rakesh Shah, Alpesh Patel, VaibhavRamanuj, NitinSolanki, Knowledge and attitude about organ donation among commerce college students: National Journal of Community medicine 2015 Sep: available from: http://www.njcmindia.org.

4.     Sakhuja V, Sud K, End stage renal disease in India and Pakistan: burden of disease and management issues. Kindey Int. 2003;63(83): S 115 – S 118

5.     Jose  A ;  knowledge  and  attitude  of  adults  regarding  common  misconceptions involved  in  organ  donation.  Available  from:  http://www.scribd.com/doc/55012805.

6.     Sree T. Sucharitha, Ravi Siriki, RajeshwaraRao, Mullai, Priyadharshini, Kaavya, Roshni, Organ donation: Awareness, Attitudes and beliefs among under graduate medical students in South India, 2013 Aug, National Journal of Research in Community medicine, Vol.2, Issue 2. Jul 2013, p 83-86.

7.     Annadurai K, Mani K, Ramasamy J, A study on knowledge, attitude and practices about organ donation among college students in Chennai, Tamil Nadu. 2013 Aug; progressive health science, Vol. 3, KAP on organ donation, p59-63.

8.     Jose  A ;  knowledge  and  attitude  of  adults  regarding  common  misconceptions involved  in  organ  donation.  Available  from:  http://www.scribd.com/doc/55012805.

9.     Josephine  G  and  Balamurukan  a  study  on  public  intention  to  donate  organ :  perceived  barriers  and  facilitators sept  2015  available  from:  http://www.bjmp.org.com.

10.  Prasannamithra ,PrithvisreeRavindra, B Unnikrishnan.  Et al. perceptions and  attitude  towards  organ  donation  among  people  seeking  health  care  in  tertiary  care  centers  of coastal south areas in India.Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/pmc3775029

 11. Michelle  J,  Irving,  Allison  Tong.et  al.  sep  2014.  Factors  that  influence  the  decision  to  be  an  organ  donor:  a  systematic  review  of  the  qualitative literature. Available  from:  http://www.ndt.oxfordjournals.org/condent/early/ndt

12.  Taimur  saleem,  Sidra  Idhaque.  Oct  2013.  Knowledge,  Attitude  and  practices  survey on  organ  donation  among  a  selected  adult  population  of  pakisthan. Available from:  http://www.link.springer.com/article/10.118/14726938/

 

 

 

 

Received on 16.06.2016                Modified on 30.06.2016

Accepted on 27.07.2016                © A&V Publication all right reserved

Int. J. Adv. Nur. Management. 2016; 4(3): 203-208.

DOI: 10.5958/2454-2652.2016.00047.0