Experiences of Unrelated Hematopoietic Stem-cell Donors and Experts of Relevant Institutions

Soyoung Yu; Miok Kim; Tai-Gyu Kim; Su-Hee Beom

doi:10.7475/kjan.2019.31.5.522

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Yu, Kim, Kim, and Beom: Experiences of Unrelated Hematopoietic Stem-cell Donors and Experts of Relevant Institutions

Original Article

Korean J Adult Nurs 2019;31(5):522-539.

Published online: 21 October 2019

DOI: https://doi.org/10.7475/kjan.2019.31.5.522

Experiences of Unrelated Hematopoietic Stem-cell Donors and Experts of Relevant Institutions

Soyoung Yu¹, Miok Kim^2,, Tai-Gyu Kim³, Su-Hee Beom⁴

¹Associate Professor, College of Nursing, CHA University, Pocheon, Korea

²Assistant Professor, Department of Nursing, College of Medicine, Dankook University, Cheonan, Korea

³Director, Catholic Hematopoietic Stem Cell Bank, College of Medicine, The Catholic University of Korea, Seoul, Korea

⁴Team Manager, Catholic Hematopoietic Stem Cell Bank, College of Medicine, The Catholic University of Korea, Seoul, Korea

Corresponding author: Kim, Miok https://orcid.org/0000-0001-7976-0245 Department of Nursing, College of Medicine, Dankook University, Dandae-ro 119 Dongnam-gu, Cheonan 31116, Korea. Tel: +82-41-550-3888, Fax: +82-41-529-7291, E-mail: aprilsea@hanmail.net

Received 21 July 201920 August 2019 Accepted 24 September 2019

This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0/) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract

Purpose

This study attempts to explore the experiences of Hematopoietic Stem Cell Donation (HSCD) among donors and experts of HSCD-related institutions in South Korea.

Methods

In July 2017, 7 donors and 8 experts with experience of HSCD-related work were interviewed. The transcribed data were qualitatively analyzed to identify major themes and sub-themes representing the experiences of the donors and experts.

Results

The analysis indicated that donors’ HSCD-related experiences were structured into 5 themes (“ Lack of understanding of HSCD”, “ Difficulty in decision-making regarding HSCD”, “ Major hassles involving HSCD”, “ Meaningful experiences and hopefulness” and “ More effort by government and institutions for future donors”). The experts’ experiences were structured into 4 themes (“ Improving the donation procedure through government support”, “ Improving the donation procedure through campaign reinforcement”, “ Donors’ characteristics”, and “ Meaning of my job”).

Conclusion

HSCD-related institutions must manage donors more carefully. This would involve keeping them aware of what they are likely to experience throughout the donation procedure, follow-up monitoring, and continuous support. Efforts should be taken to inform nurses involved in HSCD of research on donors’ experiences, and they must be systematically trained to ease donors’ difficulties.

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Keywords: Hematopoietic stem cells, Focus groups, Qualitative research

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Table 1.

Major Themes, Categories and Subcategories of Hematopoietic Stem Cell Donors

Themes	Categories	Subcategories
Lack of understanding on HSCD	Misunderstandings by people	․ Cannot understand terminologies on HSCD
	Misunderstandings by people	․ Mistaken as bone marrow transplantation
	Registration of HSCD without understanding it	․ Reckless registration
	Registration of HSCD without understanding it	․ Once explained but forgot the detail
Difficulty in decision-making regarding HSCD	Period as a registered donor	․ Long waiting until HLA matching
		․ Feel sorry for missing the call
		․ Try to remember by calendar and sticky notes
	Difficulties against family disagreement	․ Facing against concerns and objections by family
	Difficulties against family disagreement	․ Efforts to persuade family
	Mixed feelings through the decision period for HSCD	․ Troubled by the process of obtaining family consent
		․ Life-saving decision
		․ Proud and happy to contribute to society
		․ Contribution to the community
Major hassles involving HSCD	Inconvenience due to frequent visits to hospital	․ Frequent visits to the hospital
	Inconvenience due to frequent visits to hospital	․ Long waiting for lack of understanding by health care professional
		․ Long travel to the hospital in a rural area
	Pain and uncomfortable feelings during the preparation and donation procedure	․ Regretting donation because of severe pain
		․ No second donation because of the pain
		․ Severe pain caused by G-CSF
		․ Uncomfortable feelings due to side-effects
	Difficulties in daily life after donation	․ Persistent fatigue after donation
	Difficulties in daily life after donation	․ Bad results in school due to ache or fatigue
		․ Cannot exercise because of difficulties in walking
Meaningful experiences and hopefulness	Memorable special experience	․ Good work to save people
		․ Precious hope in mind
		․ Life-changing experience
		․ Motivation for life
	Hope for the recipient's improvement	․ Curious about the recipient
	Hope for the recipient's improvement	․ Curious about the health status of recipient after donation
More effort by government and institutions for future donors	Need for campaign to correct distorted impression on HSCD	․ Too serious impression on donation by media
	Need for campaign to correct distorted impression on HSCD	․ Campaign targeting for altruism
	Enough a priori information on the donation procedure and experiences	․ Provide enough explanations of possible inconveniences
		․ Detailed information about donation schedule, probability of matching, and side-effects
	Social and regulatory support for the donors	․ Cannot be supported by school
	Social and regulatory support for the donors	․ Shy for submitting the official documents
		․ Use personal day-offs for donation

HSCD=hematopoietic stem cell donation; HLA=human leucocyte antigen; G-CSF=granulocyte-colony stimulating factor.

Table 2.

Major Themes, Categories and Subcategories of Donation Institute Experts

Themes	Categories	Subcategories
Improving the donation procedure: government support	Needs a healthcare system for donors	․ Lack of system for donor support
	Needs a healthcare system for donors	․ Revised laws that may benefit peripheral blood donors
	Governmental budget expansion	․ Rigid budget system for recruiting donors
	Governmental budget expansion	․ Governmental budget to support
	Governmental subsidies for transplant coordination cost	․ National support for transplant coordination costs is required
	Governmental subsidies for transplant coordination cost	․ The reality of a donor's loss
		․ Donor is uncomfortable because donation costs recipient
Improving the donation procedure: campaign reinforcement	Campaign for the public on HSCD	․ Proactive publicization through mass media is necessary
		․ Need to share the treatment results of the donee
		․ Campaign through donor's club
	Campaign for registered donors	․ Efforts to maintain the registered donor's will
		․ Need to provide continuous data of donee
		․ Getting to know a patient's story
	In case of voluntary application	․ Reason for deregistration: change of mind
Donor institution experts' ideas: the characteristics of donors		․ A voluntary will of an individual
		․ People who update their information
	Modifying personal information, such as contacts	․ Respond to sent messages
	Modifying personal information, such as contacts	․ Reply to modify contacts
	In case of the blood donation experience	․ A blood donor
	In case of the blood donation experience	․ People who have donated blood steadily
	In case of religious belief	․ A person with religious belief
	In case of religious belief	․ Recruitment of registered donors to religious groups
	In case there is a patient's family or acquaintance	․ Patient's family
	In case there is a patient's family or acquaintance	․ Patient's acquaintance
The meaning of my job	Donation of the person I've recruited	․ In case of actual donation by the person I've recruited
	Donation of the person I've recruited	․ In case of the registered donors keep their will and eventually makes the donation
	Greetings from donors and donees	․ Greetings from donors and donor's family
	Greetings from donors and donees	․ Greetings from donees
	My job itself, the recognition of others	․ My job of recruiting donors
	My job itself, the recognition of others	․ When people recognize of my work

HSCD=hematopoietic stem cell donation.

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