Interviews of living kidney donors to assess donation-related concerns and information-gathering practices

Jessica M. Ruck, Sarah E. Van Pilsum Rasmussen, Macey Henderson, Allan B Massie, Dorry Segev

Research output: Contribution to journalArticle

Abstract

Background: Efforts are underway to improve living kidney donor (LKD) education, but current LKD concerns and information-gathering preferences have not been ascertained to inform evidence-based resource development. As a result, prior studies have found that donors desire information that is not included in current informed consent and/or educational materials. Methods: We conducted semi-structured interviews with 50 LKDs who donated at our center to assess (1) concerns about donation that they either had personally before or after donation or heard from family members or friends, (2) information that they had desired before donation, and (3) where they sought information about donation. We used thematic analysis of verbatim interview transcriptions to identify donation-related concerns. We compared the demographic characteristics of participants reporting specific concerns using Fisher's exact test. Results: We identified 19 unique concerns that participants had or heard about living kidney donation. 20% of participants reported having had no pre-donation concerns; 38% reported no post-donation concerns. The most common concern pre-donation was future kidney failure (22%), post-donation was the recovery process (24%), and from family was endangering their family unit (16%). 44% of participants reported being less concerned than family. 26% of participants wished they had had additional information prior to donating, including practical advice for recovery (10%) and information about specific complications (14%). Caucasian participants were more likely to hear at least one concern from family (76% vs. 33%, p = 0.02). The most commonly consulted educational resources were health care providers (100%) and websites (79% of donors since 2000). 26% of participants had had contact with other donors; an additional 20% desired contact with other LKDs. Conclusions: Potential donors not only have personal donation-related concerns but frequently hear donation-related concerns from family members and friends. Current gaps in donor education include an absence of practical, peer-to-peer advice about donation from other prior donors and materials directed and potential donors' family members and friends. These findings can inform the development of new educational practices and resources targeted not only at LKDs but at their social networks.

Original languageEnglish (US)
Article number130
JournalBMC Nephrology
Volume19
Issue number1
DOIs
StatePublished - Jun 8 2018

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Living Donors
Tissue Donors
Interviews
Kidney
Education
Informed Consent
Social Support
Health Personnel
Renal Insufficiency
Demography

Keywords

  • Concerns
  • Education
  • Knowledge
  • Living kidney donors

ASJC Scopus subject areas

  • Nephrology

Cite this

Interviews of living kidney donors to assess donation-related concerns and information-gathering practices. / Ruck, Jessica M.; Van Pilsum Rasmussen, Sarah E.; Henderson, Macey; Massie, Allan B; Segev, Dorry.

In: BMC Nephrology, Vol. 19, No. 1, 130, 08.06.2018.

Research output: Contribution to journalArticle

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abstract = "Background: Efforts are underway to improve living kidney donor (LKD) education, but current LKD concerns and information-gathering preferences have not been ascertained to inform evidence-based resource development. As a result, prior studies have found that donors desire information that is not included in current informed consent and/or educational materials. Methods: We conducted semi-structured interviews with 50 LKDs who donated at our center to assess (1) concerns about donation that they either had personally before or after donation or heard from family members or friends, (2) information that they had desired before donation, and (3) where they sought information about donation. We used thematic analysis of verbatim interview transcriptions to identify donation-related concerns. We compared the demographic characteristics of participants reporting specific concerns using Fisher's exact test. Results: We identified 19 unique concerns that participants had or heard about living kidney donation. 20{\%} of participants reported having had no pre-donation concerns; 38{\%} reported no post-donation concerns. The most common concern pre-donation was future kidney failure (22{\%}), post-donation was the recovery process (24{\%}), and from family was endangering their family unit (16{\%}). 44{\%} of participants reported being less concerned than family. 26{\%} of participants wished they had had additional information prior to donating, including practical advice for recovery (10{\%}) and information about specific complications (14{\%}). Caucasian participants were more likely to hear at least one concern from family (76{\%} vs. 33{\%}, p = 0.02). The most commonly consulted educational resources were health care providers (100{\%}) and websites (79{\%} of donors since 2000). 26{\%} of participants had had contact with other donors; an additional 20{\%} desired contact with other LKDs. Conclusions: Potential donors not only have personal donation-related concerns but frequently hear donation-related concerns from family members and friends. Current gaps in donor education include an absence of practical, peer-to-peer advice about donation from other prior donors and materials directed and potential donors' family members and friends. These findings can inform the development of new educational practices and resources targeted not only at LKDs but at their social networks.",
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AU - Van Pilsum Rasmussen, Sarah E.

AU - Henderson, Macey

AU - Massie, Allan B

AU - Segev, Dorry

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N2 - Background: Efforts are underway to improve living kidney donor (LKD) education, but current LKD concerns and information-gathering preferences have not been ascertained to inform evidence-based resource development. As a result, prior studies have found that donors desire information that is not included in current informed consent and/or educational materials. Methods: We conducted semi-structured interviews with 50 LKDs who donated at our center to assess (1) concerns about donation that they either had personally before or after donation or heard from family members or friends, (2) information that they had desired before donation, and (3) where they sought information about donation. We used thematic analysis of verbatim interview transcriptions to identify donation-related concerns. We compared the demographic characteristics of participants reporting specific concerns using Fisher's exact test. Results: We identified 19 unique concerns that participants had or heard about living kidney donation. 20% of participants reported having had no pre-donation concerns; 38% reported no post-donation concerns. The most common concern pre-donation was future kidney failure (22%), post-donation was the recovery process (24%), and from family was endangering their family unit (16%). 44% of participants reported being less concerned than family. 26% of participants wished they had had additional information prior to donating, including practical advice for recovery (10%) and information about specific complications (14%). Caucasian participants were more likely to hear at least one concern from family (76% vs. 33%, p = 0.02). The most commonly consulted educational resources were health care providers (100%) and websites (79% of donors since 2000). 26% of participants had had contact with other donors; an additional 20% desired contact with other LKDs. Conclusions: Potential donors not only have personal donation-related concerns but frequently hear donation-related concerns from family members and friends. Current gaps in donor education include an absence of practical, peer-to-peer advice about donation from other prior donors and materials directed and potential donors' family members and friends. These findings can inform the development of new educational practices and resources targeted not only at LKDs but at their social networks.

AB - Background: Efforts are underway to improve living kidney donor (LKD) education, but current LKD concerns and information-gathering preferences have not been ascertained to inform evidence-based resource development. As a result, prior studies have found that donors desire information that is not included in current informed consent and/or educational materials. Methods: We conducted semi-structured interviews with 50 LKDs who donated at our center to assess (1) concerns about donation that they either had personally before or after donation or heard from family members or friends, (2) information that they had desired before donation, and (3) where they sought information about donation. We used thematic analysis of verbatim interview transcriptions to identify donation-related concerns. We compared the demographic characteristics of participants reporting specific concerns using Fisher's exact test. Results: We identified 19 unique concerns that participants had or heard about living kidney donation. 20% of participants reported having had no pre-donation concerns; 38% reported no post-donation concerns. The most common concern pre-donation was future kidney failure (22%), post-donation was the recovery process (24%), and from family was endangering their family unit (16%). 44% of participants reported being less concerned than family. 26% of participants wished they had had additional information prior to donating, including practical advice for recovery (10%) and information about specific complications (14%). Caucasian participants were more likely to hear at least one concern from family (76% vs. 33%, p = 0.02). The most commonly consulted educational resources were health care providers (100%) and websites (79% of donors since 2000). 26% of participants had had contact with other donors; an additional 20% desired contact with other LKDs. Conclusions: Potential donors not only have personal donation-related concerns but frequently hear donation-related concerns from family members and friends. Current gaps in donor education include an absence of practical, peer-to-peer advice about donation from other prior donors and materials directed and potential donors' family members and friends. These findings can inform the development of new educational practices and resources targeted not only at LKDs but at their social networks.

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