Having a sibling as donor: Patients' experiences immediately before allogeneic hematopoietic stem cell transplantation

Kisch, Annika; Bolmsjö, Ingrid; Lenhoff, Stig; Bengtsson, Mariette

doi:10.1016/j.ejon.2014.03.004

Cited by 8 publications

(4 citation statements)

References 94 publications

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“…They therefore try to grasp the situation and learn as much as possible to make an informed decision to undergo transplantation. In this phase the perceptions include evaluation of the risk for the sibling donor and the complexity of the donor -recipient relationship, which also was shown in the study by Kisch et al [12] where the recipients expressed great concerns about the sibling donor immediately before HSCT. In this phase the recipients' perceptions also include the meaning of unrelated donation and concerns about selfidentity, which includes responsibility.…”

Section: Discussion Of the Findingsmentioning

confidence: 89%

“…Immediately before HSCT, recipients experience being in a complex situation with various thoughts and emotions, including concerns about the sibling donor. [12] During the first year posttransplant the stem cell recipients' main concern is how to recompensate the sibling donor. [13] The most common side effects of stem cell donation are fatigue, headache, bone pain, muscle pain and nausea, which are mainly transient.…”

Section: Introductionmentioning

confidence: 99%

“…Recipients are concerned about their sibling donor and also experience a sense of dependency and responsibility. [12] Thus, it is vital to understand their complete situation and learning processes to be able to provide person-centred information, care and support. [23] The aim was to explore stem cell recipients' perceptions of experiences of having a sibling donor from pre-transplantation to one year afterwards in order to support their learning process.…”

Section: Introductionmentioning

confidence: 99%

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Perceptions of experiences of having a sibling stem cell donor

Kisch

Forsberg

2018

CNS

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Objective: The aim was to explore stem cell recipients’ perceptions of experiences of having a sibling donor from pretransplantation to one year afterwards in order to support their learning process.Methods: Ten adult recipients, five women and four men, with a mean age of 52 years (19-68 years) receiving stem cells from a sibling donor were included consecutively. We used a phenomenographic approach to analyse the 28 open-ended interviews that took place before transplantation and three months and one year afterwards.Results: Ten categories emerged comprising 110 different perceptions pertaining to: Advantages, Acknowledgement, Risk evaluation, Complexity, Family impact, Non-directed donors, Self-identity, Facing the reality, Knowledge seeking and Caring encounters. Three distinct phases of the learning process were identified from before transplantation to one year afterwards, i.e., risk-benefit analysis, outcome expectations and facing the reality.Conclusions: Before transplantation the recipients had many perceptions about having a sibling donor and focused on a thorough risk versus benefit analysis for both themselves and the donor. Three months after transplantation the recipients sought knowledge in order to have realistic expectations and comprehend their future. One year after transplantation the recipients had few perceptions and focused on facing the reality, irrespective of whether the outcome was good or bad. The generic perceptions of the recipients over time were that serious blood diseases are burdensome and lethal, while treatment should include continuity of care.

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Section: Discussion Of the Findingsmentioning

confidence: 89%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Perceptions of experiences of having a sibling stem cell donor

Kisch

Forsberg

2018

CNS

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“…Only one study has truly explored patients’ experiences of having a sibling donor in detail [ 12 ]. That study revealed that immediately before HSCT patients experience being in a complex situation characterised by a variety of emotions and thoughts, including concerns about the sibling donor and other relatives.…”

Section: Introductionmentioning

confidence: 99%

Patients’ Main Concerns About Having a Sibling Stem Cell Donor – A Grounded Theory Study

Kisch

Forsberg

2018

TONURSJ

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Background:There is limited knowledge about the perspective of patients undergoing allogeneic haematopoietic stem cell transplantation (HSCT) about having a sibling as donor. It is essential to understand the main concerns of stem cell recipients in order to enable nurses to provide person-centred care.Objectives:The study aim was to explore patients’ main concerns about having a sibling stem cell donor and how the patients handle them, from immediately before until one year after transplantation.Methods:Twenty-eight interviews were performed prospectively during one year with ten adult sibling stem cell recipients with a mean age of 52 years (range 19-68 years). The interviews were analyzed by the Grounded Theory method.Results:The core category Recompensation summarises the process in the generated grounded theory including the three main categories; Invest, Compensate and Celebrate. Recompensation is defined as a lasting compensation given by the recipient to the sibling donor for the loss or harm suffered or effort made. The sense of having to reward, protect, appreciate, maintain peace and work on the relationship with the sibling donor at the same time as having to accept a serious illness, cope with their situation and promote their own recovery is strenuous for the recipients.Conclusion:The main concern for stem cell recipients during their first post-transplant year is to recompensate the sibling donor by investing, compensating and celebrating her/him. Although there is a positive aspect of recompensation, it can also imply pressure and guilt.

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Introduction

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2018

Children as Tissue Donors

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Having a sibling as donor: Patients' experiences immediately before allogeneic hematopoietic stem cell transplantation

Cited by 8 publications

References 94 publications

Perceptions of experiences of having a sibling stem cell donor

Perceptions of experiences of having a sibling stem cell donor

Patients’ Main Concerns About Having a Sibling Stem Cell Donor – A Grounded Theory Study

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