Organ Donors - The Journey

Goals

To have a full understanding of the journey of organ donors. An ideal response would provide information and insights surrounding the early stages of organ donation and how someone gets informed about being an organ donor, the stages of making a decision, and then how they talk with family about it.

Early Findings

  • As the chat did not discern between living donors or deceased donors, we are providing insights for both.
  • Each year the Indiana Donor Network receives about 30,000 calls from hospitals about patients who might become candidates for donation. Of those, about 5,500 lead to referrals. Last year, 165 people in Indiana became organ donors.
  • This is the case study of a woman who decided to become an organ donor. "The evaluation period was long. Over the next four months, I had every health screening imaginable. But I chose to look at it as the world’s best physical examination. Now I know I am good to go for another 10,000 miles. In June, I was approved as a kidney donor and scheduled for surgery."
  • Almost anyone, at any age, can become an organ donor. Anyone younger than age 18 needs to have the consent of a parent or guardian.
  • "Eighteen studies involving 1019 participants were identified. Eight themes emerged. The decision to be an organ donor was influenced by (i) relational ties; (ii) religious beliefs; (iii) cultural influences; (iv) family influences; (v) body integrity; (vi) previous interactions with the health care system: medical mistrust, validity of brain death and fear of early organ retrieval; (vii) the individual’s knowledge about the organ donation process and (viii) major reservations about the process of donation, even in those who support organ donation."
  • "Family members continue to play a prominent role in donation decisions at time of death. This study examined the relative influence of donor and next-of-kin factors, requestor characteristics, communication processes and satisfaction with the health care team on the donation decision."
  • What factors influence people’s decisions to register for organ donation? The results of a nominal group study.
  • This is the deceased donation process.
  • "While most organ and tissue donations occur after the donor has died, some organs (including a kidney or part of a liver or lung) and tissues can be donated while the donor is alive. There are about as many living donors every year as there are deceased donors." Here is the journey for a living donor.
  • While this source is from Canada, it is still relevant as it describes the living donors journey.
  • Organ donation, step by step.
  • In addition to this public search, we scanned our proprietary research database of over 1 million sources and were unable to find any specific research reports that address the stated goals.

Summary Of Our Early Findings Relevant To The Goals

  • Our first hour of research confirmed that there is publicly available information to sketch out the journey of an organ donor.
  • It was not made clear to us in the chat whether the donor had to be a living donor or a deceased donor. Each path is very different.
  • Please select one or more of the options provided in the proposed scoping section below.

Proposed next steps:

You need to be the project owner to select a next step.
We are suggesting research that provides a full understanding of the journey of living organ donors. We will provide information and insights surrounding the early stages of live organ donation and how someone gets informed about being a live organ donor, the stages of making a decision, and then how they talk with family about it. This will be a United States focus. If a more broad approach is desired, for example, a global approach, this would have to be clearly communicated to us in any reply. Please check this box if we should proceed with this research.
Additionally, we are suggesting research that provides a full understanding of the journey of deceased organ donors. By deceased, we mean people who made a deliberate decision to decide to donate their organs after death. We will provide information and insights surrounding the early stages of organ donation and how someone gets informed about being a deceased organ donor, the stages of making a decision, and then how they talk with family about it. This will be a United States focus. If a more broad approach is desired, for example, a global approach, this would have to be clearly communicated to us in any reply. Please check this box if we should proceed with this research.