GRADE profile 6Summary of views of families of potential paediatric donors

Study characteristicsSummary of findings
No. of studiesAnalysisQuality
Influence of staff involved in organ donation
1 study

1 × qualitative study - [B], [Be-a], [Be-b]
A study showed that parents of potential paediatric donors were more likely to give consent if they had a good relationship with the ICU personnel; they were then more likely accept the irreversibility of their child’s death. Conversely, where this relationship was poor or when staff did not allow parents to be at the child’s bedside, parents of potential paediatric donors were less likely to give consent.Very low
Influence of family members
1 study

1 × qualitative study - [Be-a], [Be- b]
A study showed that parents of potential paediatric donors tended to make the final decision about consent with their spouse but extended family members played a significant role in the decision-making process. In cases where parents of potential paediatric donors lacked spousal or mate support, consent for donation was less likely.Very low
Factors related to consent
1 study

1 × qualitative study - [B], [Be-a], [Be-b]
A study showed that parents of potential paediatric donors gave consent when they were able to accept their child’s death, attribute meaning to the donation (for example, the benefits to the recipient) and when they believed that consent was consistent with their child’s wishes.Very low
1 study

1 × qualitative study - [B], [Be-a], [Be-b]
A study showed that parents of potential paediatric donors were more likely to decline consent when they had no previous knowledge about organ donation, wanted to know the recipient, considered that their child had been inappropriately cared for, or were unaware of their church’s position on organ donation.Very low
1 study

1 × qualitative study - [B], [Be-a], [Be-b]
A study showed that other factors related to obtaining consent from parents of potential paediatric donors included:
  • fear of mutilation or disfigurement
  • subjecting the child to further ‘ordeal’
  • a reluctance to assume responsibility for another’s organs.
Very low
1 study

1 × qualitative study - [Be-a], [Be-b]
A study showed that parents of potential paediatric donors who gave consent reported feeling that their grief was eased, through helping others to live or feeling that their child was living on through others.Very low
Method of approach
1 study

1 × qualitative study - [B]
A study showed that parents of potential paediatric donors were more likely to give consent when family members or friends were approached by healthcare professionals, and they then approached the parents (indirect approach).Very low
Quality of approach
1 study

1 × qualitative study - [B], [Be-a], [Be-b]
A study showed that parents of potential paediatric donors were more likely to decline consent when the parents were informed in an inappropriate manner and pressured to make a decision.Very low
Provision of information
1 study

1 × qualitative study - [Be-a], [Be- b]
A study showed that parents of potential paediatric donors requested the following information before giving consent for organ donation:
  • the process of organ retrieval
  • the outcomes of transplantation
  • the identity of the recipient
  • the possibility of making contact with the recipient.
Very low
1 study

1 × qualitative study - [Be-a], [Be-b]
A study showed that parents of potential paediatric donors experienced more distress and were less likely to give consent if they were not given information on:
  • the child’s condition
  • the chance of survival of the child
  • the concept of brain death.
Very low
1 study

1 × qualitative study - [Be-a], [Be-b]
A study showed that parents of potential paediatric donors who had given consent for organ donation wanted more information on what happened next, including the process of burial.
Some parents of potential paediatric donors expressed resentment and anger at healthcare professionals who never expressed concern about their wellbeing during the period following the child’s death.
They also felt that their act was not socially recognised and that they were quickly forgotten. A few even believed that they had been exploited.
Very low
Factors associated with the decision to grant consent
2 studies

1 × Retrospective study - [V]
1 × Retrospective study (survey) - [W]
Studies showed that the following factors were associated with families of potential paediatric donors granting consent to organ donation:
  • belief in the process of donation, and feeling that it was ‘the right thing to do’
  • perception that the child would go on living in others
  • good interaction with healthcare professionals involved in organ donation
  • type of healthcare professional who asked for consent.
Very low
Factors associated with the decision to refuse consent
2 studies

2 × Retrospective studies (survey) - [W] and [F]
Studies showed that the following factors were associated with families of potential paediatric donors refusing consent to organ donation:
  • a perception that the doctors who determined death were not part of the organ donation process
  • lack of information
  • fear or lack of belief in organ donation
  • perception that timing of approach was not optimal
  • feeling that the child had been through enough and fear of further trauma
  • concern that donation would have an impact on survival
  • consideration of donation was too upsetting
  • poor interaction with healthcare professionals involved in organ donation, including a perception of insensitivity.
Very low
Other factors influencing consent for organ donation
2 studies

1 × Retrospective study (survey) - [F]
1 × Retrospective study - [P]
Studies showed that other factors that influenced the families of potential paediatric donors in obtaining consent were:
  • donor ethnicity
  • familial (or consentor) ethnicity
  • religious beliefs
  • previous examples of belief in or knowledge of transplantation.
Very low

From: 2, Evidence review and recommendations

Cover of Organ Donation for Transplantation
Organ Donation for Transplantation: Improving Donor Identification and Consent Rates for Deceased Organ Donation.
NICE Clinical Guidelines, No. 135.
Centre for Clinical Practice at NICE (UK).
Copyright © 2011, National Institute for Health and Clinical Excellence.

All rights reserved. This material may be freely reproduced for educational and not-for-profit purposes. No reproduction by or for commercial organisations, or for commercial purposes, is allowed without the express written permission of NICE.

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