Being a haematopoietic stem cell donor for a sick sibling: Adult donors' experiences prior to donation

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

doi:10.1016/j.ejon.2015.02.014

Cited by 17 publications

(31 citation statements)

References 23 publications

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“…Only a handful of studies have addressed HRQOL in sibling donors (123–126), each suggesting a critical need to better understand the donation-related experiences. A recent study in pediatrics found approximately 20% of donors had very poor HRQOL, significantly lower than that of norms at pre-donation and 4 weeks post-donation (127).…”

Section: Resultsmentioning

confidence: 99%

National Institutes of Health Hematopoietic Cell Transplantation Late Effects Initiative: The Patient-Centered Outcomes Working Group Report

Bevans

El‐Jawahri

Tierney

et al. 2017

Biology of Blood and Marrow Transplantation

128

145

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In 2015 the National Institutes of Health (NIH) convened six working groups to address the research needs and best practices for patient-centered late effects of hematopoietic stem cell transplantation (HCT) survivors. The Patient-Centered Outcomes Working Group, charged with summarizing the HRQOL evidence base, used a scoping review approach to efficiently survey the large body of literature in adult and pediatric HCT survivors over 1 year after transplantation. The goals of this paper are to 1) summarize the current literature describing patient-centered outcomes (PCO) in survivors including the various dimensions of healthrelated quality of life affected by HCT and describe interventions tested to improve these outcomes; 2) highlight areas with sufficient evidence allowing for integration into standard practice; 3) address methodological issues that restrict progress in this field; 4) identify major gaps to guide future research; and 5) specify priority research recommendations. PCOs were summarized within physical, psychological, social and environmental domains, as well as for adherence to treatment, and health behaviors. Interventions to improve outcomes were evaluated for evidence of efficacy, although few interventions have been tested in long-term HCT survivors. Methodologic issues defined included lack of consistency in the selection of PCO measures, along with the absence of a standard for timing, frequency, and mode of administration. Recommendations for HCT survivorship care included: integration of annual screening of PCOs; use of evidence based practice guidelines; and provision of treatment summaries and survivorship care plans after HCT. Three priority research recommendations included: 1) Design and test risk-targeted interventions with dose intensity modulation matching the needs of HCT survivors with priority domains including sexual dysfunction, fatigue, sleep disruption, non-adherence to medications & recommended health care, health behaviors including physical inactivity and healthy eating, and psychological dysfunction, with particular consideration of novel technologies to reach HCT survivors distant from their transplant centers, 2) Design a consensus based methodologic framework for outcomes evaluation, and 3) Evaluate and compare existing practices for integrating PCOs screening and interventions across HCT survivorship programs.

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Section: Resultsmentioning

confidence: 99%

National Institutes of Health Hematopoietic Cell Transplantation Late Effects Initiative: The Patient-Centered Outcomes Working Group Report

Bevans

El‐Jawahri

Tierney

et al. 2017

Biology of Blood and Marrow Transplantation

128

145

View full text Add to dashboard Cite

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“…Because none of the donors considered the donation optional, it seems important to emphasise voluntariness, the possibility of not donating and to guarantee confidentiality pre-donation. However, because many donors experience a sense of responsibility for the recipient [6][7][8][9] and a wish to donate, pre-donation information and education must include medical facts about donation and transplantation. They should also be informed about the benefits and risks for both donor and recipient, that donating stem cells means doing everything possible to save the sick sibling's life and that it is never the donor's fault if the transplantation is a failure.…”

Section: Discussion Of the Findings And Clinical Implicationsmentioning

confidence: 99%

“…They have to deal with a mixture of experiences, such as anxiety and guilt as well as happiness and pride, which they most often do not discuss with anyone. [6][7][8][9] Sibling donors are frequently concerned about the outcome of the transplantation and feel that they have a responsibility to do what needs to be done to help a family member. [6][7][8][9] Information and cooperation are of vital importance to prevent unnecessary harm to the healthy sibling performing the donation.…”

Section: Introductionmentioning

confidence: 99%

“…[6][7][8][9] Sibling donors are frequently concerned about the outcome of the transplantation and feel that they have a responsibility to do what needs to be done to help a family member. [6][7][8][9] Information and cooperation are of vital importance to prevent unnecessary harm to the healthy sibling performing the donation. Understanding the whole situation of the sibling donor, including perceptions and experiences, is essential for providing person-centred information and care.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Sibling stem cell donors’ perceptions of experiences of donation

Kisch

Forsberg

2017

CNS

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Objective: What and when should we tell sibling donors about the donation process? Although we provide extensive information to sibling stem cell donors, we lack knowledge of their perceptions and how they change during the donation process. Therefore, the aim of this study was to explore sibling donors' perceptions of experiences of stem cell donation from pre-donation to one year afterwards. Methods: Applying a phenomenographic approach we performed an in-depth, longitudinal exploration of adult sibling donors' perceptions of experiences based on 29 open-ended interviews performed before donation, as well as three and twelve months afterwards. Ten consecutive adult sibling donors with a median age of 54 years (range 26-66 years) due to donate stem cells at one Swedish transplant centre participated. Results: A detailed learning process among sibling stem cell donors during the first year after donation was identified through 83 different perceptions pertaining to motive, obligation, responsibility, preparation, circumstances, recovery and relationship. The perceptions changed over the first year after donation due to experiences of duty, pressure, burden, security, learning, struggle and closeness. Educational strategies and tools must cover all these perceptions to narrow the sibling donors' knowledge gap and support their learning process. Conclusions: In the course of the year sibling stem cell donors' perceptions of their experiences change and thereby their need for education, information and support. As the learning process stems from a range of experiences, there is a need to individualise the care and further study sibling stem cell donors' levels of burden and distress.

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“…9 Anticipating the apheresis procedure while the recipient is not yet undergoing intensive chemotherapy could have a positive impact on this emotional burden, an aspect that should specifically be evaluated. …”

Section: -8mentioning

confidence: 99%

Hematopoietic stem cell apheresis in the context of a related allogeneic transplant for acute myeloid leukemia: an unexpected outcome, medical emergency and ethical issue

et al. 2016

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Being a haematopoietic stem cell donor for a sick sibling: Adult donors' experiences prior to donation

Cited by 17 publications

References 23 publications

National Institutes of Health Hematopoietic Cell Transplantation Late Effects Initiative: The Patient-Centered Outcomes Working Group Report

National Institutes of Health Hematopoietic Cell Transplantation Late Effects Initiative: The Patient-Centered Outcomes Working Group Report

Sibling stem cell donors’ perceptions of experiences of donation

Hematopoietic stem cell apheresis in the context of a related allogeneic transplant for acute myeloid leukemia: an unexpected outcome, medical emergency and ethical issue

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