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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

Saturation of codes in interviews
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Fig1: Saturation of codes in interviews

Mentions: Three interviews were independently open coded by two researchers, following the conventional content analysis method [10]. Based on a comparison of the results, the Primary Researcher designed a preliminary codebook in cooperation with an Ethicist. Two researchers analysed all interviews with the help of this code book, using Atlas.ti 6.2.28©. Codes were checked by sample. Codes were refined through constant comparison. Consensus was reached on the attribution of the codes to the quotations. No new codes emerged in Interview 8, thus, saturation [11] was reached (Fig. 1). Finally, codes were concentrated in categories and combined to themes related to the research questions.Fig. 1


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)

Saturation of codes in interviews
© Copyright Policy - OpenAccess
Related In: Results  -  Collection

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

Fig1: Saturation of codes in interviews
Mentions: Three interviews were independently open coded by two researchers, following the conventional content analysis method [10]. Based on a comparison of the results, the Primary Researcher designed a preliminary codebook in cooperation with an Ethicist. Two researchers analysed all interviews with the help of this code book, using Atlas.ti 6.2.28©. Codes were checked by sample. Codes were refined through constant comparison. Consensus was reached on the attribution of the codes to the quotations. No new codes emerged in Interview 8, thus, saturation [11] was reached (Fig. 1). Finally, codes were concentrated in categories and combined to themes related to the research questions.Fig. 1

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