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Request for organ donation without donor registration: a qualitative study of the perspectives of bereaved relatives.

de Groot J, van Hoek M, Hoedemaekers C, Hoitsma A, Schilderman H, Smeets W, Vernooij-Dassen M, van Leeuwen E - BMC Med Ethics (2016)

Bottom Line: Half of those who refused consent for donation mentioned afterwards that it could have been an option.The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures.Healthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances.

View Article: PubMed Central - PubMed

Affiliation: Radboud Institute for Health Sciences, Radboud University Medical Center, DGVP 20, PO Box 9101, 6500, HB, Nijmegen, The Netherlands. Jack.deGroot@radboudumc.nl.

ABSTRACT

Background: In the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration.

Methods: A content analysis of narratives of 24 bereaved relatives (14 in-depth interviews and one letter) of unregistered, eligible, brain-dead donors was performed.

Results: Relatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who refused consent for donation mentioned afterwards that it could have been an option. The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures.

Conclusion: Healthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances. It is anticipated that the number of consenting families could be enlarged by examining the experience of decoupling and offering the possibility of consent for donation after circulatory death if families refuse consent for donation after brain-death.

No MeSH data available.


Related in: MedlinePlus

Code tree
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Fig2: Code tree

Mentions: Twenty-eight codes were identified (marked in italics in this article), concentrated into five categories, resulting in three themes (Fig. 2; Table 4). The first theme concerned the healthcare system: request factors and requestor factors. The second theme comprised items related to the relatives: prior knowledge or opinion about organ donation and their decision-making. The third theme related to all factors concerning the evaluation of the decision and the decision process. Representative quotes of identified codes are presented in Table 3 and are referred to in the manuscript as ‘Qn’.Fig. 2


Request for organ donation without donor registration: a qualitative study of the perspectives of bereaved relatives.

de Groot J, van Hoek M, Hoedemaekers C, Hoitsma A, Schilderman H, Smeets W, Vernooij-Dassen M, van Leeuwen E - BMC Med Ethics (2016)

Code tree
© Copyright Policy - OpenAccess
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC4940748&req=5

Fig2: Code tree
Mentions: Twenty-eight codes were identified (marked in italics in this article), concentrated into five categories, resulting in three themes (Fig. 2; Table 4). The first theme concerned the healthcare system: request factors and requestor factors. The second theme comprised items related to the relatives: prior knowledge or opinion about organ donation and their decision-making. The third theme related to all factors concerning the evaluation of the decision and the decision process. Representative quotes of identified codes are presented in Table 3 and are referred to in the manuscript as ‘Qn’.Fig. 2

Bottom Line: Half of those who refused consent for donation mentioned afterwards that it could have been an option.The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures.Healthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances.

View Article: PubMed Central - PubMed

Affiliation: Radboud Institute for Health Sciences, Radboud University Medical Center, DGVP 20, PO Box 9101, 6500, HB, Nijmegen, The Netherlands. Jack.deGroot@radboudumc.nl.

ABSTRACT

Background: In the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration.

Methods: A content analysis of narratives of 24 bereaved relatives (14 in-depth interviews and one letter) of unregistered, eligible, brain-dead donors was performed.

Results: Relatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who refused consent for donation mentioned afterwards that it could have been an option. The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures.

Conclusion: Healthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances. It is anticipated that the number of consenting families could be enlarged by examining the experience of decoupling and offering the possibility of consent for donation after circulatory death if families refuse consent for donation after brain-death.

No MeSH data available.


Related in: MedlinePlus