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Evaluation of the experiences of family members whose deceased relative donated tissues at the NHSBT dedicated donation facility in Speke, Liverpool

Abstract

Donation of human tissue for transplant and research has historically been facilitated within the hospital mortuary. In 2006 NHSBT Tissue Services opened the Dedicated Donation Facility [DDF], the first facility in the UK dedicated to the donation of tissues under strictly controlled conditions. Nine family members who had agreed and experienced the transfer of their deceased relative to the DDF for tissue donation participated in a service evaluation applying qualitative data collection methods and framework analysis. The evaluation aimed to: understand the decision-making process of family members who agreed to their deceased relative being moved to the DDR for tissue donation; identify any concerns that family members had; gather the views of family members regarding the ‘service’ provided to them by NHSBT Tissue Services. Family members were unaware of the possibility of tissue donation. The process of reasoning behind both agreeing to tissue donation and movement of the deceased to the DDF by family members was fundamentally, ‘the benefit to others’ that tissue donation would bring, and fulfilling the wishes of the deceased [when known]. Family decision making was facilitated by: (i) a positive rapport with the requester, (ii) satisfaction with the information provided to the family about what would happen, and (iii) trust in that what was being said would happen. Family members were satisfied with the service provided to them by Tissue Services and confident in agreeing to the transfer of their deceased relative to the dedicated facility for tissue donation.

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Notes

  1. 1.

    For a detailed report see Sque et al. (2008).

  2. 2.

    One participant family had been involved in publicity initiatives organised by Tissue Services.

  3. 3.

    One participants’ cousin had received two kidney transplants in the past and this individual was very well informed about tissue donation.

  4. 4.

    One participant had received a transplant and whilst being well informed about solid organ donation was poorly informed about tissue donation.

  5. 5.

    A cool call is where the family have not been told in advance that Tissue Services will be in contact with them to discuss donation.

  6. 6.

    A traditional approach is where the family have been told in advance by NHS staff that someone from Tissue Services will call them to discuss donation.

  7. 7.

    Also an issue in solid organ donation, see Sque et al. (2005).

  8. 8.

    Queries from donation teams are discussed within the Clinical Group Meeting and issues such as this can be raised there, but only if TS know of such problems. As neither of these families had contacted TS with their concerns this underlines the importance of regularly auditing families so that issues such as these do not go unaddressed.

  9. 9.

    The issue of this reconstruction was investigated by the manager of the NRC and discussed at the CGM. The donation team indicated that both donors had fully reconstructed legs [that did not look flat] when they left the DDF. There was then discussion about the possibility of the prosthesis moving during the transfer back to the hospital mortuary, and thence onto the funeral directors. If this is the case then the utility of present modes of reconstruction may need to reviewed and discussed with funeral directors and mortuary teams.

  10. 10.

    Reported in work with solid organ donation, see Sque et al. (2005).

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Acknowledgments

We would like to acknowledge and thank the participants for their central contribution to this evaluation; individuals who so generously gave up their time to meet with, or talk to, the lead evaluator over the duration of the project. We would like to personally thank: Jackie Dawber who orchestrated all aspects of initial and continuing administrative contact with family members.

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Correspondence to Tracy Long-Sutehall.

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Long-Sutehall, T., Winstanley, E., Clarkson, A.J. et al. Evaluation of the experiences of family members whose deceased relative donated tissues at the NHSBT dedicated donation facility in Speke, Liverpool. Cell Tissue Bank 13, 537–546 (2012). https://doi.org/10.1007/s10561-011-9269-x

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Keywords

  • Tissue donation
  • Family members experiences
  • Dedicated facility
  • Service evaluation