|Year : 2019 | Volume
| Issue : 1 | Page : 49-54
A Comparative Study on Role of Grief Counselors & Trained Nurses and their Impact on Increasing and Sustaining Eye Donation in an Institutional Settings in India
Radhika Tandon1, Rajesh Harsvardhan2, Alok Ranjan3, BK Arpan Subhashish4, Anand Ranjan4
1 Dr. Rajendra Prasad Centre for Ophthalmic Sciences, AIIMS, New Delhi, India
2 Department of Hospital Administration, SGPGI, Lucknow, India
3 Department of Ophthalmology, Ganesh Shankar Vidhyarthi Memorial Medical College, Kanpur, India
4 Consultant, IMARC Group
|Date of Web Publication||20-Nov-2020|
Head, Department of Hospital Administra on, SGPGI, Lucknow
Source of Support: None, Conflict of Interest: None
The burden of corneal blindness is increasing in India and estimates currently suggest that there are 1.6 Million people suffering from the disorder. Despite being treatable, the number of corneally blind people during 2005 and 2011 has grown by 0.34 Million in India. This suggests that the treatment of corneal blindness is currently taking place much slower than its incidence. One of the main reasons for this is the fact that there is a huge mismatch between the total corneas collected and that required for transplantation.
In order to increase the number of cornea collections WHO and AIIMS undertook this project to examine and evaluate how effective grief counselors can be in the collection of eyes in comparison to trained nurses. Before the project was initiated there were already 4 senior grief counselors working with the national eye bank. The project involved appointing 5 additional junior grief counselors to analyze their impact in cornea collection. During July-November 2011, it was found that the number of cornea collections were directly proportional to the number of grief counselors. Results also suggested that the significance of grief counselors in cornea collections was more than that of hospital staff. This can be attributed to the fact that grief counselors are appointed specifically for cornea collection while hospital staff can only spend a limited time on counseling for cornea collection.
|How to cite this article:|
Tandon R, Harsvardhan R, Ranjan A, Arpan Subhashish B K, Ranjan A. A Comparative Study on Role of Grief Counselors & Trained Nurses and their Impact on Increasing and Sustaining Eye Donation in an Institutional Settings in India. J Indira Gandhi Inst Med Sci 2019;5:49-54
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Tandon R, Harsvardhan R, Ranjan A, Arpan Subhashish B K, Ranjan A. A Comparative Study on Role of Grief Counselors & Trained Nurses and their Impact on Increasing and Sustaining Eye Donation in an Institutional Settings in India. J Indira Gandhi Inst Med Sci [serial online] 2019 [cited 2021 Nov 29];5:49-54. Available from: http://www.jigims.co.in/text.asp?2019/5/1/49/301078
Blindness continues to be one of the major public health problemsin developing Countries like India and one of the leading causes of blindness is Corneal Blindness and Corneal Transplantation is helpful in visually rehabilitating such cases,. Corneal blindness is more common in developing nations as compared to developed nations and have significant impact on the lives of those affected by it. Out of 45 million cases of blindness worldwide, there are 12 million cases in India and out of them 1% is due to Corneal Blindness. It is estimated that by 2020 India will have approximately 10.6 million cases of unilateral corneal blindness. However, there is an acute shortage of healthy, transplantable corneal tissue all over the world. We need 1, 00,000 corneal transplants every year, but only around 20,000 corneal transplantation surgeries (20%) are being performed. It is also estimated that 90% of corneal blindness is among the economically poor which demands pro-poor policies/strategies in managing this need.
The Government of India through the National Programme for Prevention and Control of Blindness (NPCB) has adopted many strategies to improve eye donation. One of the strategy is to appoint Grief Counselors at large hospitals (500 beds & above) who would motivate the relatives of the deceased to donate eyes before the corpse reaches mortuary.
This effort of appointing Grief Counselors (GC) has significantly increased eye donations in Delhi, for example, AIIMS. But, the number of approved Grief counselors through NPCB is not adequate (1 per select hospitals), and their motivation and performance management system is critical for the success of the programme. Ideally, 3 to 4 GCs is necessary to work on a 24X7 basis.
Currently there is very little information regarding the number of people suffering from corneal blindness in India. According to the Andhra Pradesh Eye disease study (APEDS) conducted in 2000-01, the prevalence of corneal blindness in Andhra Pradesh was estimated at 0.13% (95% CI: 0.06-0.24),. If we extrapolate these figures for India then the total number of people suffering from corneal blindness in 2011 comes at around 1.6 Million with most of these patients being children. Despite being treatable, the number of corneally blind people during 2005 and 2011 has grown by 0.34 Million in India. This suggests that the treatment of corneal blindness is currently taking place much slower than its incidence.
If we assume the national prevalence figures for corneal blindness to be the same for Delhi, the number of corneal blind people comes at nearly 22,000 in 2011. The total waiting list of patients seeking corneal transplantation in Delhi hospitals was more than 1,142 as on 14th October, 2011. This list has been continuously increasing. The main reason for the high hospital waiting list is a mismatch between the total corneas collected and that required for transplantation. During 2010-11, the number of corneas collected in Delhi were 2,086, whereas the number of corneas transplanted were 1,138. This reflects a utility rate of 55%. However, of all the corneas collected only 30 - 40% are eligible for transplantation due to long death to enucleation time, age of the donor and non-availability of complete donor medical history. So when it comes to eligible corneas the utility rate is close to 100%.
WHO and AIIMS keeping in mind the above factors undertook a study to examine and evaluate how effective grief counselors can be in the collection of eyes in comparison with the trained nurses.
With the above situation in mind, this project was proposed to address the operational gaps by first identifying it. Secondly, if the availability of the GCs on 24 X 7 is an operational problem, involvement of Nurses/ANMs/Ward boys/orderlies for this work could be tried. A study comparing the performance of vertically based GCs versus trained nurses (in the existing system), and their impact was undertaken under this project. Additionally, this project also studies the feasibility of public-private partnerships model which supposed to cross-subsidize the expenditure. To carry out this operational research, WHO India partnered with Dr. Rajendra Prasad Centre for Ophthalmic Sciences, AIIMS. This institute is one of the premier health and research centers in India. It is also a WHO Collaborative Centre for “prevention of blindness.”
| Aims and Objectives:|| |
To suggest measures to raise the eye donations by 30% by the end of FY: 2011-12; at the health care institution in Delhi (to begin with).
- To study the role of the Grief Counselors vs. Trained Nurses in improving & sustaining the eye donation in Delhi and analyze results in general as well as in terms of the impact made by Grief Counselors on overall outcome, in particular.
- To explore feasibility options for “Corporate Social Responsibility (CSR)”, “Social Marketing”, and possibly the role of some sort of “Social Cess” in health care delivery.
- To advocate for rational measures for policy changes and provide options for mobilizing additional resources as a consequence of the outcome of the study, if any.
| Methodology:|| |
Study Setting: The study was conducted in the leading teaching tertiary care institutes in Delhi &NCR witha In-patient bed compliment of more than 500.
Study Span: 15th July, 2011 to 15st December, 2011 (5 Months).
Study Type: Descriptive Study with both the Retrospective study & prospective study plans including incidental observations.
Study Area: AIIMS Hospital, DDU Hospital, RML Hospital & Safdarjung Hospital.
Under this project AIIMS, hired 5 grief counselors and trained more than 30 nurses in counseling and eye donation. The five grief counselors were hired in the month of July, 2011. Initially for the first fifteen days the newly hired GC's were trained. Later beginning from the month of August, 2011 they were sent to different areas within AIIMS and other hospitals. Three GC's were posted in different wards of AIIMS and out of the remaining two, one was posted in DeenDayal Upadhyay (DDU) Hospital and the other was posted in Dr. Ram Manohar Lohia (RML) Hospital for a period of six months. Simultaneously, 30 nurses from different hospitals i.e. DeenDayal Upadhyay Hospital, Safdarjung Hospital, Dr. Ram Manohar Lohia Hospital and AIIMs were trained on eye donation.
Under this project three different models were adopted to carry out comparative study. The first model examines how grief counselors can perform in a hospital, the second model examines how trained nurses can perform, and the third model examines how the combination of both the above mentioned model works. The first model was implemented in DDU Hospital, the second model was implemented in Safdarjung Hospital, and the third model was implemented in AIIMS and RML.
Trained grief counselors were assigned specific areas of the hospital based on the potential for donations from the area. During times of the day when the Grief Counselors are off duty the ‘on-duty’ nursing staffs were expected to cover the counseling responsibilities. The nursing staffs were trained accordingly. Details about deaths and donations and circumstances encountered were noted, compared and analyzed. Parameter evaluated included notification rate, approach rate, consent rate and conversion rate. (Form A, B, C are appended)
| Definitions:|| |
Eligible Corneas: Thisrefersto the Corneas which are medically eligible to be transplanted. Eligible Corneas are normally those corneas which do not have any contraindications.
Total Utilization: This refers to the use of cornea for a particular operation.
Death Notified: This refers to the total number of deaths that comes into the notice of a grief counselor.
Approached: This refers to the total number of people that have been approached for eye donation out of the death notified.
Approach Rate: This is the percentage of people that have been approached out of the total death notified.
Consent: It refers to the approval of the family members of the deceased for cornea retrieval.
Consent Rate: This is the percentage of people that given consent for removal of eyes out of the total number of people approached.
| Results:|| |
During the initial two months no collections were made by the junior grief counselors because all of them were without any prior experience in eye donations. They made a steady uptake from the month of September and during November the total collections by junior grief counselors was more than the senior grief counselors. The performance of senior grief counselors increased continuously from July to October, however, it declined in the month of November. This was mainly as a result of a senior most grief counselor leaving the organization in November.
The total collection of corneas made by hospital staff during July - December, 2011 was 11 while that of junior grief counselors was 21which signifies that grief counselors are more effective than the hospital staff.[Figure 1],[Figure 2],[Figure 3],[Figure 4],[Figure 5],[Figure 6]
|Figure 1: NEB-Total Corneas Collected by GCs and Hospital Staffs, 2009-2011|
Source: National Eye Bank, RPC, AIIMS
Note: In this graph and following graphs
2011 figures are till December 15, 2011
*Cornea collections from hospital staff were not available for 2009
Click here to view
|Figure 2: NEB-Total Eligible Corneas Collected by GCs and Hospital Staffs, 2009-2011|
Click here to view
|Figure 3: NEB-Total Eligible Corneas Collected by Senior GCs, Junior GCs and Hospital Staff, July-December*, 2011|
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|Figure 4: NEB-Break-up of Total Eligible Corneas Collected by Senior GC's, Junior GC's and Hospital Staff, July-December, 2011|
Source: Na onal Eye Bank, RPC, AIIMS
*In this graph and the graphs below the figures of December is till December 15, 2011
Click here to view
|Figure 5: NEB-Break-up of Total Eligible Corneas Collected by Senior GC's, Junior GC's and Hospital Staff (in%), July-December, 2011|
Click here to view
Performance of Hospital Staff Vs. Grief Counselors Performance during 2009-2011
In order to study the impact of grief counselors on cornea collections, we have taken cornea collections from hospital staff and eye donation counselors at AIIMS, DDU, RML and Safdarjung.
Data for cornea collections by hospital staff were not available for the year 2009, but data in 2010 and 2011 suggests that GCs are currently driving the cornea collections at the National eye bank. Recent initiatives like the training program on eye donations for the hospital staff has driven the collections from the hospital staff as well.
The total collection of corneas made by hospital staff during July - December, 2011 was 11 while that of junior grief counselors was 21. This signifies that grief counselors are more effective than the hospital staff. This can be attributed to the fact that grief counselors are appointed specifically for cornea collections. Hospital staff, on the other hand, appointed specifically to take care of patients in the hospital and can spend only a limited time in cornea collections. This, however, does not the rule out the fact that hospital staffs and grief counselors are interdependent and have to work hand in hand to get the maximum productivity.
Performance of Various Models
Three different models were adopted to analyze which model works the best. The first model used the combination of Grief Counselors and Hospital staffs. The second model had only grief counselors and the third model had only hospital staffs. The first model was adopted in AIIMS and RML Hospital, the second model was adopted in DDU Hospital and the third model was adopted in Safdarjung Hospital.
Model 1: Grief Counselors and Hospital Staff
AIIMS Hospital has an average monthly death of more than 500. Most of the death cases are found in the Mortuary, New Emergency and COPD wards. Currently AIIMS has both grief counselors (7) and hospital staffs who are trained on cornea collections. During the period July-November, 2011 a total of 95 Corneas were collected in AIIMS. [Figure 7] Factors leading to high cornea collections from AIIMS are as follows:
- Presence of trained staffs in the hospital wards.
- Presence of National Eye Bank within the hospital.
- Presence of experienced grief counselors in the hospital.
- Cooperative staff of the hospital
RML Hospital has an average monthly death of more than 100. Currently RML has one grief counselor. The total collection corneas collected during July-November, 2011 was two.[Figure 8]
Model 2: Only Grief Counselors
More than 200 deaths take place at DDU Hospital. Currently DDU has only one grief counselor. The total cornea collection at DDU Hospital was 21 during the period July-November, 2011. [Figure 9] From ineligible collections till august, the collection of corneas has really picked up in DDU since September. This can be attributed due to the following reasons:
- Cooperative staffs at the mortuary and other departments.
- Motivated Ophthalmology department that extends all kind of help to the counselor.
- Good rapport of the grief counselor with the other staffs of the hospital.
Model 3: Only Hospital Staff
The mortality data of Safdarjung Hospital was not available. The total collection of corneas made during July-December, 2011 was 2.[Figure 10]
Involvement of Corporates through CSR Model
Currently the National eye bank has funds for all its activity except for the funding of grief counselors. This is an area where the Corporates can contribute.
The project period was too short to partner with the Corporates. However following companies were approached: Bharti Airtel, Bausch & Lomb, Syntho Labs, Oberoi Hotels, Novartis India. However it could not be proceeded further.
| Discussion:|| |
Currently, the collection and utilization of donated eyes is done by community pledging and through hospital cornea retrieval programme. Pledging is common through promotion campaigns and by celebrities. Eye donation fortnight (and World Sight Day) is being organized from 25th August to 8th September every year to promote eye donation/eye banking. Gujarat, Tamil Nadu, Maharashtra, Delhi, Chandigarh, Andhra Pradesh, Kerala and Karnataka are leading States involved in this activity. Though pledging is common, its main purpose is increasing awareness and advocating eye donations. Due to the short duration of cornea retrieval (< 6 hours), the information about the death and the location should be made known to the nearby eye bank which many a times does not happen. In some occasions, the relatives and friends have overruled donation of eyes (legal) and so eyes are not available.
So far, the hospital cornea retrieval programme is the main strategy for the collection of donated eyes, Hospital cornea retrieval programme envisages motivation of relatives of terminally ill patients, accident victims and others with severe/fatal diseases to donate eyes. This is where the role of Eye Donation Counselors (EDCs) or Grief Counselors (GCs) comes into play. Doctors and nurses who have traditionally convinced patients and their relatives to donate eyes have a number of other job responsibilities, and as a result, can only give limited time in driving eye donations. Unlike doctors and nurses, EDC’s, who are hired specifically for motivating the relatives of the deceased for eye donations have been found to significantly increase the number of eye donations in hospitals. EDC's are responsible for counseling the families of the donor and coordinating with the eye bank and hospital for the retrieval of Corneas. They are also responsible for awareness campaigns both within and outside the hospital.
This can be attributed to the fact that grief counselors are appointed specifically for cornea collections. Hospital staff, on the other hand, appointed specifically to take care of patients in the hospital and can spend only a limited time in cornea collections. This, however, does not the rule out the fact that hospital staffs and grief counselors are interdependent and have to work hand in hand to get the maximum productivity.
Impact of the Junior Grief Counselors on the Total Collection
Corneas for the National eye bank are collected with the help of hospital staff and grief counselors at AIIMS, DDU & RML and other collection centers that are affiliated to the national eye bank. In July 2011, 5 new grief counsellors were hired and given different work areas. This increase in the manpower (who are directly involved in the collection of corneas) has created a significant impact in the total collection of corneas. The total collection of corneas made during 2011 (till 15th December) was 809 as compared to 677 corneas collected during 2010. This shows an increase of 19%.
As described earlier the grief counselors are responsible for the entire process of collection of corneas. Their impact can be evaluated by comparing the total corneas collected during July-December 2010 with the total number of corneas collected during July-December 2011. The total collection of Corneas made during July-December, 2011 were 427, whereas during the same period in 2010, the total collection made was 342. This shows an increase of 25%.
The figure below shows the cornea collection from different sources. It shows that GCs have become a major driver for cornea collection at the national eye bank (NEB). Findings suggest that the grief counselors are more effective than the hospital staffs. The number of corneas collected has been found to be directly proportional to the number of grief counselors. Although hospital staff currently accounts a small share of the total number of corneas collected, their role in cornea collection cannot be ignored. It's important to train more and more hospital staffs to receive maximum cooperation and help from them as they are the main information disseminators.
The number of grief counselors currently provided by the Government is 2. That means that every eye bank whether functional or non-functional gets 2 grief counselors. It is suggested that Eye Banks with a good HCRP track records should get more grief counselors (ideally 5).
Currently, it is a very tedious process of appointing a grief counselor. The eye banks currently do not have any authority to take action against the non-performing grief counselors. This affects the overall productivity of the eye bank. To resolve this problem, eye banks should have the authority to “Hire and Fire”. The overall control over the grief counselors should vest with the respective eye banks rather than having a centralized system.
It is important to retain grief counselors as they take a significant time to get accustomed to their job responsibilities and perform at their peak levels. We would recommend increasing the current salary of grief counselors from the current Rs. 10,000 to Rs.15, 000 + Other Allowances (Transport, Telephone, etc.). We would also recommend giving them adequate appraisals and incentives based on their performance.
The project was carried out for a period of just six months. In order to come to a generalizable conclusion we would suggest a longer time frame (at least 1 year).
| Conclusion:|| |
- Impact of the project on cornea collections: The project had set a target of increasing the total cornea collection in Delhi by 30%. Grief counselors, however, were appointed only at the National eye bank at AIIMS for a period of 6 months. In 2011, the total corneas collected at AIIMS increased by 19% in comparison with the total corneas collected during 2010. The impact of grief counselors, however, is significantly higher than as suggested by these values as they were involved in cornea collections for less than six months. Had they been involved in corneal collections throughout the year, the total cornea collections at the National eye bank would have exceeded 30%.
- Feasibility options of “Corporate Social Responsibility (CSR):Due to limited time and resources we were unable to evaluate this feasibility. We would suggest additional time and resources to evaluate the same.
- Comparison of the impact of Grief Counselors vs. Trained Nurses: Based on their performance in the last six months it is clear that grief counselors are more effective in cornea collections compared to trained nurses.
- Advocating the policy change and providing options for mobilizing additional resources: Based on their historical performance it is clear that the number of grief counselors is directly proportional to the number of corneas collected at the eye bank. Hence, we would suggest increasing the number of grief counselors at each functional eye bank. It was also found out that the current salary and incentive structure for grief counselors is not sufficient for their long term retention. Hence, we would suggest that there is an immediate change in their salary and incentive structure.
- The time frame of the project was too short to generalize the study results.
- The project involved data extraction from a number of stakeholders and in a number of cases we received limited cooperation.
- There are no credible studies commenting on the true prevalence of corneal blindness in India and Delhi.
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Andhra Pradesh Eye disease study (APEDS) conducted in 2000-01
As presented by Dr. S K Bansal during a workshop to promote eye donation at AIIMS, 2011.
[Figure 1], [Figure 2], [Figure 3], [Figure 4], [Figure 5], [Figure 6]