|Year : 2022 | Volume
| Issue : 3 | Page : 288-295
Organ donation-related psychosocial interventions: Towards a research-based guideline - A prospective observational study
Masoomeh Maarefvand1, Maryam Zabihi Poursaadati1, Mahbubeh Ziarati Niyasar2, Jagdish Khubchandani3
1 Department of Social Work, University of Social Welfare and Rehabilitation Sciences; Iranian Scientific Association of Social Work, Tehran, Iran
2 Iranian Society of Organ Donation, Tehran, Iran
3 Department of Public Health Sciences, College of Health, University of New Mexico, Albuquerque, NM, USA
|Date of Submission||28-Nov-2021|
|Date of Acceptance||14-May-2022|
|Date of Web Publication||30-Sep-2022|
Maryam Zabihi Poursaadati
Department of Social Work, University of Social Welfare and Rehabilitation Sciences, Tehran
Source of Support: None, Conflict of Interest: None
Introduction: Lack of consent from brain dead individuals' families is a major impediment for organ donation (OD) which is caused by several factors. Families need to receive information and support before, during, and after OD. Involving social workers in the transplantation team could be helpful. Methods: To develop a guideline for OD-related social work interventions, we conducted an inductive content analysis on experiences of experts providing services for families of brain dead individuals and searched scientific documents to identify eligible social work guidelines and studies. The participants were invited through purposeful and convenience sampling. Sampling was terminated when no additional information was acquired, and data saturation occurred. Results: Eleven experts who had experience in interviewing families of brain dead individuals participated voluntarily. In-depth and semi-structured interviews were conducted individually for each participant. We shared the draft for the social work guidelines with experts and finalized the guidelines according to their comments. Recommendations for social work interventions for brain dead individuals' families in three main phases were categorized; before donation (process initiation and family consent), during donation, and after donation (short-term and long-term interventions). Conclusion: Social workers can get involved in transplantation teams to improve family protection during the consent seeking process and after the family's consent about donation.
Keywords: Guideline, organ donation, psychosocial, transplantation
|How to cite this article:|
Maarefvand M, Poursaadati MZ, Niyasar MZ, Khubchandani J. Organ donation-related psychosocial interventions: Towards a research-based guideline - A prospective observational study. Indian J Transplant 2022;16:288-95
|How to cite this URL:|
Maarefvand M, Poursaadati MZ, Niyasar MZ, Khubchandani J. Organ donation-related psychosocial interventions: Towards a research-based guideline - A prospective observational study. Indian J Transplant [serial online] 2022 [cited 2022 Dec 4];16:288-95. Available from: https://www.ijtonline.in/text.asp?2022/16/3/288/357603
| Introduction|| |
There is a worldwide imbalance between the supply and demand for organs to save lives. Improving the rate of consent has been proposed as the most effective way to increase the number of organ donation (OD) and associated transplantations.,, In a systemic review by Simpkins and colleagues, lack of consent from families and their support for OD was found to be a major impediment which was caused by factors such as lack of information provided to families, the specific timing of the request, setting in which the request was made, and the approach and skill of the providers making requests. All of these factors are modifiable concerning improving consent rates. OD in Iran has a history of over 40 years. The OD rate relative to the number of brain dead people is very low in Iran. There are approximately 5000–8000 potential brain deaths annually in Iran, the possible organ donor number is 2500–4000, while the actual donations happen <1000 times. On average, the family consent rate is around 70% in Iran and the number of individuals awaiting transplants exceeds 25,000.
Families do not often accept the manipulation of the body of a relative to remove organs or for OD due to social, cultural, and religious issues. There are several reasons for family decisions of OD refusal; family's lack of understanding of brain death,,,, belief in miracles and patient recovery,, fear of gossip regarding sale rather than autonomous OD, the family's beliefs and values system,, inadequate information received during the interview to consent for the donation of organ, fear of OD to noncoreligionists, fear of organ trafficking, fear of corpse mutilation or deformation,, adverse reaction of others,, fear of blame and guilt, and financial expectations., Emotional exhaustion, lack of skills and expertise, and inadequate staff sensitivity and compassion to address families' suffering are other important reasons for lower OD.,,
Given the low consent rates worldwide and the role of health-care providers, evidence suggests that health-care professionals can influence consent rates. Studies suggest that social workers can advocate against the commercialization of organ transplantation; help educate the public regarding OD; foster approaches to donor allocation that is free of social worth considerations; provide support to the families of organ donors before, during, and after the decision; and assist families in accepting the death of a loved one.,,,, Through such services, social workers can assist key healthcare providers such as doctors to focus on medical areas of organ transplantation and ensure that OD remains a humane and humanized gesture. Organizing donor honor programs, providing support and consolation to the donor family, and relieving their grief and sufferings are some other roles of social workers in this field. For example, in Queensland, Australia, senior social workers were involved in a transplantation team led comprehensive donor program. Their tissue donation program, over 8 years, maximized the availability of tissue with its high donation rates, while upholding the rights and needs of potential donor families through the provision of effective social work services. The social workers provided a coordinating role in tissue donation, taking responsibility for ethical decisions relating to identifying potential donor families and appropriate contact persons, assessing when requests for a donation can be made, arranging informed consent, assessing need and time frames for information giving, assessing appropriate correspondence, assessing need for counseling and referrals, providing information about the tissue sought for donation and method of retrieval, preservation and organ use, providing assistance in gaining access to autopsy results and death certificates, and providing information posttransplant about how tissue has been used and highlighting the benefit to recipients. Such comprehensive approaches involving social workers are considered promising as it relates to improving consent rates for OD.
Developing guidelines and standard operating procedures to facilitate OD including social work services to support families before, during, and after donation would be helpful to increase the rate of consent. We conducted a qualitative study to develop a guideline for social work interventions in transplant centers in Iran.
| Methods|| |
To develop a guideline for OD-related social work interventions, we conducted an inductive content analysis on the experiences of experts providing services for families of brain dead individuals and searched scientific documents to identify eligible social work guidelines and studies. A draft for the social work guideline was developed based on the content analysis findings and desk review. We shared the draft with experts and finalized the guidelines according to their comments. To find relevant scientific documents, we searched international and Persian databases (including PubMed, Google Scholar, Medline, and Web of Science) with the following keywords in English and Persian: “brain,” “death,” “family,” “transplantation,” “consent,” “organ,” “donation,” “services,” and “social work.” Although there were some case studies, we found no relevant practice guidelines on social work-related interventions for OD.
In the inductive content analysis, 11 experts who had experience in interviewing families of brain dead individuals participated voluntarily. The participants were invited through purposeful and convenience sampling. Sample size determination was guided by the criterion of informational redundancy, and sampling can be terminated when no new information is elicited by sampling more units. In this study, sampling was terminated when data saturation occurred (no additional information was acquired, and further coding was no longer feasible). Details about the participants are reported in [Table 1].
All participants were informed about the research project by an oral presentation. In-depth and semi-structured interviews were conducted individually for each participant. A prototype interview guide was developed based on the literature,,,,, and the discussion within the research team. The interviews usually lasted between 45 and 60 min and were tape-recorded and transcribed verbatim.
Several techniques were employed to establish the trustworthiness of the data collection and analysis. The authors reviewed the data several times during the analysis to verify and develop categories (constant comparison). The primary results were discussed with some of the participants to check whether the results were following their experiences (member check) and the emergent codes and categories were discussed continuously between the principal author and the coauthors (peer-debriefing).
The authors read the transcripts to have a feel of the essence of participants' descriptions of brain dead individuals' families interviewing and conducted the open coding and discussed the codes in the research team along the coding process. If disagreement occurred, they referred to the original transcripts for clarification. Following open coding, categories and subcategories on social work interventions before, during, and after OD were created. We also categorized data from the desk review. Using the data from desk review and content analysis, the research team developed an initial draft for social work guidelines for OD. Then, the draft was reviewed by experts, and required edits and additions were included in the study. The draft was finalized after the revision of the guidelines according to the experts' recommendations. Data was expressed in percentages.
Declaration of patient consent
The patient consent has been taken for participation in the study and for publication of clinical details and images. Patients understand that the names and initials would not be published, and all standard protocols will be followed to conceal their identity.
The study was approved by Iranian Scientific Association of Social Work Ethics Committee. Participation in the research was confidential and voluntary. The participants could withdraw from the study whenever they preferred. All guidelines as per Declaration of Helsinki were followed. The study was performed according to the guidelines in Declaration of Helsinki.
| Results|| |
The results of desk review and inductive content analysis were used to develop the social work guidelines for OD. Recommendations for social work interventions for brain death's families in three main phases were categorized; before, during, and after donation [Figure 1].
|Figure 1: Diagram of the process of social work interventions in donation|
Click here to view
The social workers who implement this guideline must have at least a bachelor's degree and have completed specialized training courses on the implementation of the guideline and certified by the Ministry of Health and Medical Education.
Before donation: Process initiation
After the announcement of the potential donor from a detection center, the social worker should provide a brief report according to documents in the clinical file of the patient. The social worker should arrange meetings with the family as frequently as possible and listen to their feelings without criticism, answer their questions courteously, and show empathy to the family. Information about the family's psychological and social conditions, key members of the family and relatives, and the decision-making mechanism of the family should be documented by the social worker.
Nurse, Chief Coordinator, Female, 31 Years Old: “It is necessary to gather information about the biography and past medical history… the interviewer should consider the relationship style, level of information and even their culture and how they are dressed, where they are originally from, are they urban or rural? Are they extended or nuclear family?….”
If brain death is confirmed, the preparation of sharing such news through a personalized session should be arranged by the social worker. The social worker should invite the concerned family to participate in a meeting with the medical team to discuss the treatment process. The physician must provide information about the diagnosis, process, and progress of the diseases to the family. The social worker can be key in sharing prognosis and the news about brain death and this should be accompanied by the provision of social and psychological support for family members during and after the meeting. It must be acknowledged that this meeting could be stressful and uncomfortable for family members and the health-care team. In such situations, maintaining composure is important as the health care and social support team members' actions, behaviors, and stress will reflect on the family and may accentuate the tension involved in such situations precluding appropriate and adequate crisis intervention strategies.
Nurse, Chief Coordinator, Female, 31 Years Old: “(After gathering information about the family) it is time to break the bad news. Then based on the reaction of the family we can decide about the offering OD services at a suitable time … The family's reaction should be considered; do they accept the brain death? Do they ask for help to believe the news [brain death]? Do they have aggressive reactions or ignore the interviewer?….”
It is necessary to ask the family what they know about the patient's clinical conditions, such as the diagnosis, treatment process, details of clinical conditions, and clinical laboratory results, which would help team members to determine what information should be given to them subsequently. It is important to make sure that the family members understand the meaning of brain death clearly. The families' emotional reactions might appear differently; silence, disbelief, mourning, denial, or anger. Asking open-ended questions will help families express their emotions relative to the sad news they have received. It is important to let them cry and grieve or express their emotions as per their preference and reactions. However, social workers and other team members should ensure emotions such as anger do not cause injury or lead to self-destruction in family members. Offering the OD options during the time of such reactions or while sharing the sad would cause misunderstanding and increase the family's resistance to consent; one should wait for the opportune avenues and times.
Psychologist, Head of OD Center, Female, 54 Years Old: “Many families accept [the brain death], but others may react aggressively … or insult us … they even may decide to transfer their patient from this hospital to another… or they may not allow the coordinator and healthcare team members to meet with the patient and the family members….”
Before donation: Family consent
Key health-care team members play an important role in the family's consent. To receive informed consent from the family, social workers should follow the Iranian Organ Procurement Unit Supporting System protocol to present OD options to family members. The social worker should first explain brain death and OD in individual sessions with key and decision-making members of the family and then present OD options to other members of the family. It is necessary to consider refusal reasons in each family and be respectful of such decisions.
Physician, Head of Organ Donation Center, Female, 54 Years Old: “The most common reason (of refusal) is that they (the family) don't understand the meaning of brain death, they couldn't believe that brain death is DEATH, so many families don't consent… the second reason is persons who have negative influence on the family … and (say that) their loved one has not died… they want to deceive you and sell the organs ….”
Social workers should make sure that the family receives enough information about the OD process, the transplantation process, probable reasons for delays in transplantation, the transplantation team, and the legal processes. Giving information to the family could prevent their distrust and rejection can be avoided. The social worker should inform the family of the times they can visit brain dead individual. This should be managed by arrangements with intensive care unit (ICU) head, such that the family's special condition is considered, but the unit's activities are not interrupted. Sometimes, legal consultations are needed (for example, when the brain dead has had an accident) and social workers should provide necessary support and refer the family to receive legal counseling.
Social workers should talk with the family about the funeral and explain that the health-care organization could participate in the funeral and present an announcement on brain dead individual's OD and send a poster to appreciate the family's valuable decision. Determining if the family is interested in receiving these services is also a role where social workers can facilitate the process.
Social workers must also be knowledgeable about costs associated with OD processes. The cost of treatment before the donation and also transplantation based on the law in public hospitals are covered by the Iranian Ministry of Health, and in private hospitals, it should be paid by the family. If the family is unable to pay the treatment costs and/or needs support (e.g., for funeral costs), social workers should vigorously advocate for financial support in such cases.
If the family is interested in staying at the hospital during the transplant, social workers should assess family needs for accommodation and with the help of the transplant centers, provide the family with a proper place for rest and accommodation.
Physician, Head of Organ Donation Center, Female, 54 Years Old: “It is important to facilitate family meets their loved one and answer their questions about the transplant process … during the transplantation, the family also need a place to rest ….”
After donation: Short-term interventions
Experts emphasized that social work interventions could be provided as short-term and long-term services after donation. The setting of these interventions could be inside or outside the hospital.
Delivering the corpse
It is necessary to explain to the family the process of corpse delivery and make sure that this process is facilitated for them by the hospital.
Nurse, Head of Organ Donation Center, Female, 48 Years Old: “… We facilitate the process in forensic medicine … we send all documents to forensic medicine and coordinate to conduct the process in less than 48 h….”
Study participants believed that the families are extremely sensitive to reactions they receive after donation in the hospital. Dishonorable behavior in the hospital could increase sensitivity and thereby leave the families feeling upset or disrespected. Social workers should prepare a proper space for the family in the hours after the donation and ensure that help from the hospital's psychologist is available for families.
Psychologist, Head of Organ Donation Center, Female, 54 Years Old: “After taking the family's consent, they should not be left and in all steps that the brain dead individuals is prepared for transplantation, it is necessary that a skillful coordinator be with the family….”
Social workers should explain to the family that all hospital costs are covered by the Ministry of Health. The social worker should contact the hospital's financial office and inform them of the OD and emphasize that timely care is taken off, for the family.
Lots of transplants in Iran do not happen in the families' city of residence. Most of the time families need legal and financial assistance for transporting the corpse from the hospital to the funeral place. The social worker should give explanations to the family about this process, be a champion for the entire process, and ensure that the burden on the family is mitigated as much as possible.
Support for the funeral
In some cities such as Tehran, Shiraz, and Yazd, a specific section location is assigned to organ donors and burial in this section is free of cost. Social workers should be knowledgeable about and offer this service to the family and contact the burial office of the city and inform them and make sure that the family can bury the donor in the specified section.
Attending the funeral
Along with health-care team members, the transplant unit's head, and family members, social workers should try their best to attend the funeral. Our study participants believed that it is better to inform well-known persons of the city about the donation and invite them to the ceremony. Speeches in appreciation of the family should be delivered during the funeral by well-known persons.
Nurse, Head of Organ Donation Center, Female, 48 Years Old: “We send a banner (for condolences and gratitude)… and attend the funeral … we try to inform the media and invite the governor… sometimes we give a presentation in the funeral ceremony and emphasize that the family consent for OD and they didn't receive any payment … We also invite the family to a formal gratitude meeting. The provincial TV broadcasts this event several times ….”
After donation: Long-term interventions
Because of their loss, the family might malfunction in different aspects including financial, mental, social, and interpersonal. Our study participants believed that during the first 6 months after donation, social workers should continually monitor the family's well-being. If needed, social workers should intervene to improve family functioning and well-being as convenient and to the extent possible. The case management approach (including assessment, counseling especially loss and grief counseling, advocacy, referral, and follow-up) should be applied by social workers in this phase. Sometimes, families need help in the process of role reconstruction. Social workers could help the family members define their new roles in the absence of their loved ones. Economic empowerment interventions will also be necessary whenever the family has lost the head of household or breadwinner.
If the brain dead individual was the guardian or caregiver of a child, social workers should make sure the child will be placed with a caregiver who is competent and willing to keep the child safe and protected and the child custody will transfer to a qualified person. In the absence of a qualified caregiver or child sexual abuse, serious injuries, or life-threatening neglect, the child may be placed in an accredited child caring institution or a foster care center. The social worker should plan interventions for the child's best interest. The social worker should conduct crisis and ongoing counseling and protection for their grief symptoms, school functioning, aggressive behaviors, isolation, and high-risk activities (such as substance use or drinking).
Social work family interventions
Sometimes, the family's relationships face challenges. For example, families complain of aggression, abuse, and the quality of care and support in the family. A common cause of challenge in the family is their doubt about their decision of OD. If a family member has been involved in an accident that had caused brain death, the possibility of challenges and aggression against him/her will increase. Relatives' judgments about the families' decision for OD (for example, accusation such as organ trading and murder) increases family stress. Lack of crisis management and communication skills increases the risk of conflict in the families. Social work interventions help the families improve their relations.
Social Worker, Coordinator, Female, 36 Years Old: “There is no supportive system for these families. As I am a social worker, conduct some services for them but because I am too busy, I can't do all services for all of the donor families … for example the family has lost their household head and now their son is the breadwinner but he has to do military service … I do advocacy for his military exemption… I also refer the family to the psychologist for loss and grief counseling….”
Group work intervention
Some issues that might need group social work interventions include adjusting to the new situation, communication problems, interpersonal issues among family members, child protection and parenting, and caregiving for dependents and children.
Social workers should facilitate self-help groups of families (including families who had consented to OD in the past years and are willing to share their experiences with other similar families). The group members resolve their doubts about OD, and they become familiar with the coping mechanisms of others.
Social network support reinforcement
Social workers should help families create and reinforce their social support network. This network may include significant others, relatives, friends, neighbors, community members, etc., Potential social support network members should be identified with participation of the family. Social workers function as key advocates and supporters in helping acquire social support.
Follow-up, evaluation, and documentation
It is necessary to contact the family for at least 3 months after intervention termination and record their conditions in a file maintained for the family. Our study participants mentioned that a program for evaluation of social work interventions is necessary to show the effectiveness and/or failures of social work services. All services provided by the social worker should be noted in detail including psychosocial assessment, interventions, referrals, and after discharge monitoring in the family's file.
Our study experts emphasized that it is necessary to provide social work services based on the Iranian Social Work's Code of Ethics and such services should be provided in light of special issues that potentially arise before, during, and after donation. For instance, if the families ask the social worker to provide them with the opportunity to contact organ recipients, the social worker should deny this request and explain the reasons for avoidance. The social worker never gets involved in processes for organ allocation and if he/she becomes aware of such information, should inform the legal sources, and ensure privacy, confidentiality, and rights of donor families, recipient, and recipient families. If for some reason the organ could not be retrieved as agreed, the family must be informed so.
Physician, Head of Organ Donation Center, Female, 26 Years Old: “Most of the families insist to meet the recipient … the problem is they think if a meeting is not done it means that the organ may not have reached that destination… If they meet the recipient they feel he/she as their child [or their loved one] and if he/she has [health] problem, this family experience another trauma … it is like they lose their child (their loved one) for the second time and it cause the mourning again….”
| Discussion|| |
Several factors influence the decision of brain dead individuals' families about donating organs. Social work interventions for meeting the families' support needs during this stressful time are offered in this study. Our findings serve as social work guidelines in Iran for OD facilitation including three phases; before, during, and after donation. Social workers can maximize the protection of individuals and families during the consent seeking process and after the family's consent about donation.,,,,,
As emphasized by published studies, our study participants agreed that receiving understandable information about OD could affect the family's consent process.,,,, The study participants believed that social workers could present accurate and timely information about the OD process to the family and almost include family members as transplantation team members in a respectful, culturally sensitive, and truthful way. They can also provide supportive individual and group interventions that are significantly associated with consent processes. Social work interventions facilitate informed consent based on the principle of self-determination. They identify key and influential individuals in potential donor families and based on the assessment, the social workers could plan to meet the family's needs and time frames for information giving, counseling, advocacy, and referrals.,,,,,,
Social workers and the interventions they deliver apply a holistic perspective and put the family experience in the context of their emotional, social, familial, economic, and cultural context and highlight how OD affects these dimensions of their life. It is unreasonable to expect physicians and nurses to perform two conflicting roles: highly technical, scientific tasks with considerable expertise, for example, patient care in the ICU, testing for brain death, and at the same time, dealing with feelings of the family around the death of the patient and yet, seek ODs. Health professionals and, especially, social workers who have special skills relating to people and dealing with their psychosocial needs are well qualified to ask for family consent for OD.
Social workers should ensure that a clear explanation of brain death is given to the family before the introduction of OD options and that the family understands that there is no hope for recovery of their loved one, that nothing more can be done, and that the loved one has died. Families frequently ask questions such as Who will remove the organs? Who will receive the organs? How will the person look after the donation? Will an autopsy be necessary? When can a funeral be held? Who will pay the cost of OD? Will anyone know we donated? When will we know if the organs were used? Social workers should continue to hone their skills to address these questions and also anticipate that every family and situation will be unique. Ensuring accuracy of facts, employing a sensitive and culturally competent approach to interacting with families will ensure long-term positive outcomes as it related to OD and family satisfaction and well-being.,,,,,,,,
The family's emotional health, well-being, and maintaining family harmony are of foremost concern.,,,,, It is important to keep the family informed and supported before and after consent is obtained and throughout the OD process and also during follow-up. Social workers can provide postdonation support and information for organ donor families. Loss and grief counseling and helping the family accept the death of their loved one completely could be one of the key roles of social workers through evidence-based interventions.,,,,
The Iranian government has committed a large budget through funding hospitals and staff at the Ministry of Health and Medical Education by supporting the brain death donation program. OD is conducted in hospitals that receive public funding in Iran and also all medical services related to OD are covered by the insurance. The insurance covers evaluation, hospitalization, surgery, follow-up care, and treatment of any surgical complications.
The findings of this study should be considered in light of some limitations. In this study, we focused on experiences of coordinators in transplant centers in Iran and the results do not reflect the views of families of brain dead individuals. Further research needs to be done on the views and beliefs of families and factors that could enhance OD with family members' will and preference. Although we shared the results of the study with the experts and revised the guidelines according their comments, it is necessary to pilot the guidelines and conduct more investigations to study the feasibility and effectiveness of these guidelines. Desk reviews allowed us to consider global barriers for needs of the family and reasons of family refusal of consent for OD, but our qualitative data reflected the experiences in Iranian context; guidelines presented hereby may not be applicable across other cultures, populations, and countries. Therefore, the guidelines may have to be modified by the local medical social workers across various regions to suit the potential organ donor families.
Donor families experience a crisis and will face with different problems before and after organ donation. The social workers can play a key role to reduce their problems and improve family protection during this process. Joining social workers to the transplantation team will facilitate the family consent process and other team members can focus on their professional and technical tasks. Social workers' intervention after donation will help donor families to define their new roles in the absence of their loved ones and improve their function and well-being.
The authors conducted this research in a voluntary project with cooperation of Iranian Scientific Association of Social Work (ISASW) and Iranian Society of Organ Donation (ISOD). The Guideline for Organ Donation Social Work Interventions was approved by ISASW in 2018.
Zahra-Sadat Torabi was the team member who cooperated effectively in conducting the research and developing the guidelines. She died in a car accident while the research team had finalized and planned to report the guidelines.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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