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Donor Family Support

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ATTITUDES OF TRANSPLANT COORDINATORS, RECOVERY
COORDINATORS AND THE GENERAL PUBLIC

Research Purpose:

  1. Serve as a first step in systematically and formally organizing the opinions on these topics of key constituencies for donation and transplantation.
  2. To help the New York Alliance for Donation (NYAD) in its advocacy functions, in planning strategic goals and actions for the organizations, and in recommendations for policy development.

Research Design & Methodology:

Focus group and interviews with transplant coordinators and recovery coordinators
interviews with the general public

KEY FINDINGS – COORDINATORS

Questions Posed to Coordinators

  1. Would you say you are in favor of donor family supports, you oppose them, or are you undecided?
  2. In your opinion, what are the main benefits, or advantages, of offering donor family supports?
  3. In your opinion, what are the main detriments, or disadvantages, of offering donor family supports?
  4. If there were to be donor family supports, please describe what a responsible offer of donor family support would look like?
    • Rather than interpreting ‘donor family support’ to mean financial support, some of the coordinators concluded that this support should comprise emotional support.
    • In the absence of a definition limiting ‘donor family support’ to families of deceased donors, some of the coordinators offered that support would be appropriate for both living and deceased donor families.
    • Financial support for both living and deceased donors could be in the form of a tax deduction.
    • Some of the coordinators have seen instances in which the donor family is in dire need of financial assistance, so could use any support that would be forthcoming.
    • Suggesting support other than financial, coordinators discussed the ‘memory boxes’ that some organizations are currently giving to donor families.
    • Some programs are already supporting families with tangible gifts that honor the donor.
    • It was noted that the ‘anatomical gift’ program supports the families by cremating the patient, and that some deceased have been placed in this program in part because the family could not afford funeral expenses.
    • Some coordinators are opposed to financial support, thinking it is contrary to the notion of a gift.
    • Some coordinators think that financial incentives could decrease donation and may threaten the current programs.

KEY FINDINGS – GENERAL PUBLIC

Measurement Areas: General Public

  1. Awareness of Organ Donation
  2. Reasons for Donating or Not
  3. Attitudes Toward Factors Relating to Donation
  4. Attitudes Toward Donation Family Supports
  5. Awareness of NYS Organ & Tissue Donor Registry & Driver’s License Designation Option
  6. Effective Ways to Get More People to Donate

Reaction to Donor Family Supports

  • On the face of it, most react negatively to the suggestion of supports for families of donors.
  • On reflection, prompted by alternatives for compensation such as donations to charity or payment of funeral expenses, most think there may be some acceptable means of offering an award to families of donors.
  • Invariably, the general public recast the donor family support discussion as one regarding ‘selling organs’

Attitudes Toward Organ Donation

  • All general public participants favor organ donation.
  • The general public understand that people can and do die waiting for transplantation of an organ, and that organ donation saves lives.
  • The general public agree that the organs will not benefit them when they are dead, and that donation so that somebody can live is a good idea.
  • The general public speculate that resistance to donation may be tied to religious beliefs, regardless of whether or not the religion actually endorses or forbids donation.

Awareness of Opportunities to Donate

  • Most of the general public realize that all licensed drivers can designate their wishes to donate on the back of their licenses.
  • Despite knowing that organ donation can be designated, most of the general public had not done so by signing the backs of their licenses.
  • The New York State Organ and Tissue Donor Registry (NYSOTDR) is not a familiar name or acronym to any of the respondents.