| 1. |
- Worel, Nina, et al.
(författare)
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Suitability of haematopoietic cell donors : updated consensus recommendations from the WBMT standing committee on donor issues
- 2022
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Ingår i: The Lancet Haematology. - 2352-3026. ; 9:8, s. 605-614
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Forskningsöversikt (refereegranskat)abstract
- The contribution of related donors to the globally rising number of allogeneic haematopoietic stem cell transplantations (HSCT) remains increasingly important, particularly because of the growing use of haploidentical HSCT. Compared with the strict recommendations on the suitability for unrelated donors, criteria for related donors allow for more discretion and vary between centres. In 2015, the donor outcome committee of the Worldwide Network for Blood and Marrow Transplantation (WBMT) proposed consensus recommendations of suitability criteria for paediatric and adult related donors. This Review provides updates and additions to these recommendations from a panel of experts with global representation, including the WBMT, the European Society for Blood and Marrow Transplantation donor outcome committee, the Center for International Blood and Marrow Transplant Research donor health and safety committee, the US National Marrow Donor Program, and the World Marrow Donor Association, after review of the current literature and guidelines. Sections on the suitability of related donors who would not qualify as unrelated donors have been updated. Sections on communicable diseases, clonal haematopoiesis of indeterminate potential, paediatric aspects including psychological issues, and reporting on serious adverse events have been added. The intention of this Review is to support decision making, with the goal of minimising the medical risk to the donor and protecting the recipient from transmissible diseases.
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| 2. |
- Bergkvist, Karin, et al.
(författare)
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Support in the context of allogeneic hematopoietic stem cell transplantation : The perspectives of family caregivers
- 2020
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 46
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND AND AIM: Family caregivers are often involved in helping recipients during allogeneic hematopoietic stem cell transplantation (allo-HSCT). Although the distress that often arises along the trajectory is evident to family caregivers, research on their perceptions of providing and receiving support is limited. The aim of this study was to explore family caregivers' experiences of providing and receiving support during allo-HSCT.METHOD: Data were collected through semi-structured interviews with fourteen family caregivers 16 weeks after the recipient's allo-HSCT. Inductive qualitative content analysis was used to analyse the data.RESULTS: The analysis revealed four generic categories that focus on prerequisites for family caregivers' ability to provide support: Individual characteristics influence the ability to be supportive, Social context influences the ability to be supportive, Medical information provides knowledge and a sense of participation and Interaction with the healthcare organization provides a sense of participation. These prerequisites are linked in the fifth generic category: Family caregivers' support is multifaceted and dependent on the recipient's health.CONCLUSIONS: Family caregivers' risk of experiencing a stronger sense of uncertainty and lack of participation is higher in the absence of the above-mentioned prerequisites. Professional support is thus required, which implies that the healthcare organization is responsible for identifying the needs of each family caregiver and delivering individualized support.
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| 3. |
- Casirati, Amanda, et al.
(författare)
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The European Society for Blood and Marrow Transplantation (EBMT) roadmap and perspectives to improve nutritional care in patients undergoing hematopoietic stem cell transplantation on behalf of the Cellular Therapy and Immunobiology Working Party (CTIWP) and the Nurses Group (NG) of the EBMT
- 2023
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Ingår i: Bone Marrow Transplantation. - 0268-3369. ; 58:9, s. 965-972
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Tidskriftsartikel (refereegranskat)abstract
- Malnutrition is the most common comorbidity during the continuum of hematopoietic stem cell transplant (HSCT) and negatively impacts clinical outcomes, response to therapy, quality of life, and costs. The intensive conditioning regimen administered before transplant causes inflammatory damages to the gastrointestinal system, which themselves contribute to trigger graft versus host disease (GvHD) in the allogeneic setting. GvHD and other post-transplant complications such as infections adversely affect food intake and gut absorption of nutrients. Consequently, patients exhibit signs of malnutrition such as weight loss and muscle wasting, thus triggering a “vicious circle” that favours additional complications. Among HSCT centres, there is marked variability in nutritional care, from screening for malnutrition to nutritional intervention. The present paper, elaborated by the Cellular Therapy and Immunobiology Working Party and the Nurses Group of the European Society for Blood and Marrow Transplantation, aims at defining a roadmap that identifies the main nutritional critical issues in the field of HSCT. This document will be propaedeutic to the development of clinical algorithms to counteract risk factors of malnutrition, based on scientific evidence and shared among HSCT centres, and thus maximize transplant outcomes.
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| 4. |
- Fagerström Kristensen, Ingrid, et al.
(författare)
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Rapid Implementation of Telehealth Video Visits in Cancer Care – The Perspectives of Patients and Healthcare Professionals
- 2022
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Ingår i: International Journal of Nursing Health Care Research. - : Gavin Publishers. - 2688-9501. ; 5:04, s. 1-8
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Tidskriftsartikel (refereegranskat)abstract
- Background: Due to the COVID-19 pandemic, physical visits were replaced by video visits. The aim of this study was to evaluatethe rapid implementation of telehealth video visits in cancer care from the perspectives of patients and healthcare professionals togain knowledge about when physical visits can be replaced by video visits and to identify the improvements needed to optimizecancer care.Material and Methods: Questionnaires were designed for the purpose of the study and sent out during March 2021 to adult patients(≥ 18 years) who had participated in video visits, healthcare professionals who had conducted video visits and scheduling staff whohad scheduled video visits from April to December 2020.Results: 99 patients, 17 healthcare professionals and 14 scheduling staff answered the questionnaires. Although high levels ofsatisfaction were reported, a need for improvement was identified. Most of the respondents were positive about continuing with videovisits, which functioned better with a familiar patient in a follow-up situation, especially for those living far from the hospital, frailpatients, and those in need of frequent follow-up. The necessary improvements mainly concerned technical issues pertaining to thedigital platform, training and support.Conclusion: Telehealth video visits are a good complement to physical visits and phone calls. There is a need to optimise theuse of video visits regarding types of visit (i.e., new visits, during treatment, follow-up, etc.) for selected patients with improvedinstructions, guidelines and education as well as a safe and user-friendly digital tool.
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| 5. |
- Forsberg, Anna, et al.
(författare)
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Fear of graft rejection 1-5years after lung transplantation: A nationwide cohort study
- 2018
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Ingår i: Nursing Open. - : Wiley. - 2054-1058. ; 5:4, s. 484-490
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To explore the perceived threat of the risk of graft rejection and its relationship to psychological general well-being and self-efficacy 1-5years after lung transplantation. Design: A nationwide, cross-sectional cohort study as a part of the Self-management after thoracic transplantation study. Methods: A total of 117 lung transplant recipients due for their yearly follow-up one (N=35), two (N=28), three (N=23), four (N=20) and 5years (N=11) after lung transplantation were included. We used three instruments; the Perceived Threat of the Risk of Graft Rejection, the Psychological General Well-being and Self-efficacy in chronic illness. Results: The lung recipients reported an overall low perceived threat of the risk of graft rejection with no gender differences. Intrusive anxiety explained 24.7% of the variance in the PGWB-sum (p <= 0.001) and makes a statistically significant (beta = -497; p0.001) unique contribution to the overall psychological general well-being (95%CI 3.004-1.515).
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| 6. |
- Forsberg, Anna, et al.
(författare)
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Fear of graft rejection after heart transplantation - a nationwide cross-sectional cohort study
- 2021
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Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953.
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Tidskriftsartikel (refereegranskat)abstract
- Background: Cellular rejection is most common 3-6 months after heart transplantation while chronic rejection, that is, cardiac allograft vasculopathy and malignancy are the most common causes of death in heart-transplant recipients beyond the third year after transplantation. However, the heart transplantation recipient's perceived threat of graft rejection has never been explored. Aim: The aim was to explore perceived threat of the risk of graft rejection and its relationship to psychological wellbeing, fatigue, health literacy, adherence and self-efficacy 1-5 years after heart transplantation. Methods: In a nationwide, cross-sectional study that constituted part of the Self-management after thoracic transplantation project, 79 heart recipients (68% men and 32% women with a mean age of 52.6 years) were investigated after one year (n=28), two years (n=17), three years (n=11), four years (n=17) and five years (n=6). The instruments used were: the Perceived Threat of the Risk of Graft Rejection, the Psychological General Well-being, Self-efficacy for Managing Chronic Disease, the Multidimensional Fatigue Inventory, the Newest Vital Sign and the Basel Assessment of Adherence to Immunosuppressive Medication Scale. Results: Twenty-eight per cent of the heart transplantation recipients perceived graft rejection as a serious threat. Intrusive anxiety was low and 37% perceived the threat of the risk of graft rejection as being beyond their control. Heart transplant recipients with high level of fatigue and low psychological well-being reported stronger intrusive anxiety and less control. Conclusion: A perceived threat of the risk of graft rejection is present in the everyday lives of heart transplantation recipients and is strongly related to overall psychological well-being.
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| 7. |
- Gjærde, Lars Klingen, et al.
(författare)
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Sexual function of adult long-term survivors and their partners after allogeneic hematopoietic cell transplantation in Europe (S-FAST) : a study from the Transplant Complications Working Party and Nurses Group of the EBMT
- 2023
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Ingår i: Bone Marrow Transplantation. - : Springer Science and Business Media LLC. - 0268-3369 .- 1476-5365. ; 58:2, s. 195-202
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Tidskriftsartikel (refereegranskat)abstract
- Sexual dysfunction after allogeneic hematopoietic cell transplantation (allo-HCT) is a common long-term complication. We conducted a European multicenter cross-sectional study of adult allo-HCT recipients who had survived >2 years and their partners to investigate sexual functioning after HCT and to evaluate whether discussion about sexual functioning between the transplant team and the survivor and partner was perceived to have taken place. In total, 136 survivors (77 males, 59 females) and 81 partners (34 males, 47 females) participated. Median age was 56 and 54 years in male and female survivors, respectively. Forty-seven percent of male and 65% of female survivors and 57% of male and 59% of female partners reported clinically relevant sexual problems. Sixty-two percent of survivors and 79% of partners reported that sexual functioning had not been discussed with them during transplant. Standardized sexual functioning scores were correlated with self-reported health status in survivors (rho = 0.24, p = 0.009). The high prevalence of sexual dysfunction warrants additional studies focusing on the impact of changes in sexuality for patients as well as their partners. Future studies should also investigate which methods that are effective in preventing or treating sexual problems after allo-HCT.
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| 8. |
- Kisch, Annika M., et al.
(författare)
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A person-centred intervention remotely targeting family caregivers' support needs in the context of allogeneic hematopoietic stem cell transplantation : A feasibility study
- 2022
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Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 30:11, s. 9039-9047
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Allogeneic hematopoietic stem cell transplantation (HSCT) is an intensive curative treatment that increases family caregivers' burden. The aim of this study was to explore the feasibility of remotely assessing and addressing family caregivers' support needs in terms of demand and acceptability using the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the HSCT context.METHODS: CSNAT-I consists of an evidence-based tool and a five-stage person-centred process. The intervention was performed remotely by two designated nurses from two HSCT centres, one before HSCT and the second 6 weeks after (November 2020 to March 2021). To capture the experiences of using CSNAT-I, interviews were conducted with family caregivers and reflections were gathered from the designated nurses.RESULTS: Of 34 eligible family caregivers, 27 participated, 70% were partners and the rest children, siblings or other relatives. The main support needs were knowing what to expect in the future and dealing with your feelings and worries. The most frequent support actions according to CSNAT-I were psychological support and medical information. Four categories summarised family caregivers and designated nurses' experiences: CSNAT-I was relevant and became an eye opener; nurses' experiences were important for enabling trustful CSNAT-I conversations; CSNAT-I provided family caregivers with support and a sense of security; and CSNAT-I gave family caregivers insight and enabled change.CONCLUSION: Both family caregivers and designated nurses experienced that using CSNAT-I in an HSCT context was feasible and had the potential to provide valuable support for most of the participating family caregivers.
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| 9. |
- Kisch, Annika M
(författare)
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Allogeneic stem cell transplantation : patients’ and sibling donors’ perspectives
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Allogeneic haematopoietic stem cell transplantation (hereafter HSCT) is an established treatment which offers a potential cure for a variety of diseases, mainly haematological malignancies. However, the treatment is also associated with significant risks of acute complications and late side effects, including mortality. The donor is either a relative, most often a sibling, or an unrelated registry donor. Methods for donating stem cells are bone marrow harvesting or peripheral blood stem cell collection. The most common and transient side effects from stem cell donation are fatigue, headache, bone and muscle pain. Major side effects are rare but there is a small risk of fatalities and serious adverse events. To facilitate the provision of adequate information and care of patients undergoing HSCT and their sibling donors there is a need to explore and study their situations and experiences. This thesis aims to investigate patients’ and sibling donors’ perspectives of HSCT.The first study investigated changes in the patients’ quality of life (QoL) from before HSCT to 100 days and 12 months after the transplantation, and identified factors associated with the changes. The study was completed by 40 patients who answered the questionnaires (FACT-BMT and FACIT-Sp) on all three occasions. The majority of the dimensions covered in QoL deteriorated from before and up to 100 days and 12 months after HSCT, except for the emotional well-being which improved. The factors associated with reduced QoL over time were significant infections, female gender and transplantation with stem cells from a sibling donor. Factors associated with improved emotional well-being over time were absence of significant infections and marital status ‘other than married/cohabiting’.In the second study an information and care model (IC model) for potential sibling stem cell donors was evaluated. A questionnaire survey was answered by 148 siblings who had been informed about and asked to undergo HLA typing by the IC model. The majority of the potential sibling donors were satisfied with the information and care they had received. However, areas for improvement were highlighted, such as a wish to have the results from the HLA typing conveyed through personal contact and that the complicating influence of health professionals and relatives on their decision to undergo HLA typing and possible donation could be prevented.In the third study ten HSCT patients were interviewed immediately before transplantation regarding their experiences of having a sibling as donor. The results, with the main theme Being in no man’s land, show that the patients are in a complex situation before transplantation, experiencing a mixture of emotions and thoughts. In the fourth study ten sibling donors, where the recipients were the participants in Study III, were interviewed regarding their experiences before donation of being a stem cell donor for a sick sibling. The main theme, Being a cog in a big wheel, in the results shows that the sibling donors go through a complex process before donation, a situation they have not volunteered for but have got into accidently, experiencing a mixture of emotions and thoughts. The results also show that the sibling donors do not usually reveal their thoughts and emotions about being a donor to anyone. The patients’ and sibling donors’ experiences can be seen to be connected to each other, however, they have not usually talked to each other about their emotions and thoughts. To conclude, HSCT patients’ overall QoL and the majority of the dimensions of QoL deteriorated from before until 100 days and 12 months after HSCT, while their emotional well-being improved. The privacy and free choice of potential sibling donors have to be respected and the information and care of patients and their sibling donors should be kept separate. Health professionals should bear in mind that both patients with a sibling as donor and sibling donors are in complex situations before transplantation and donation, experiencing a mixture of emotions and thoughts. Further, it is important to individualize the information and care for HSCT patients and their sibling donors in a supportive and professional manner.
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| 10. |
- Kisch, Annika M., et al.
(författare)
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Family caregivers' support needs during allo-HSCT-a longitudinal study
- 2021
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Ingår i: Supportive Care in Cancer. - : Springer. - 0941-4355 .- 1433-7339. ; 29, s. 3347-3356
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Tidskriftsartikel (refereegranskat)abstract
- Purpose The study aimed to explore family caregivers' support needs prior to allo-HSCT, how these change over time and whether they are associated with demographic factors and caregiver outcome. Methods This longitudinal repeated measure study included 87 family caregivers of allo-HSCT recipients: 63% were partners, 74% women, 65% lived with the recipient, and their mean age was 54 years. They completed the 14-item Carer Support Needs Assessment Tool (CSNAT) and caregiver outcome measures (caregiver burden, anxiety, depression, preparedness for caregiving and general health) prior to allo-HSCT and 3, 6 and 16 weeks later. Results The two top support needs prior to allo-HSCT were 'knowing what to expect in the future' (79%) and 'dealing with your own feelings' (70%). Several support needs were associated with younger age and not being a partner, while higher needs implied worse caregiver outcomes for at least one of the outcomes prior to transplantation. Most support needs remained the same at the last follow-up. Conclusion The findings that high support needs are often associated with worse caregiver outcomes and most support needs do not diminish over time indicate that more attention should be placed on the situation of family caregivers.
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| 11. |
- Kisch, Annika M., et al.
(författare)
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Patients’ main concerns about having a sibling stem cell donor - A grounded theory study
- 2018
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Ingår i: Open Nursing Journal. - : Bentham Science Publishers Ltd.. - 1874-4346. ; 12, s. 46-57
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 12. |
- Kisch, Annika M., et al.
(författare)
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The core of sibling stem cell donation-A grounded theory study
- 2017
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Ingår i: Open Nursing Journal. - : Bentham Science Publishers Ltd.. - 1874-4346. ; 11, s. 73-83
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Tidskriftsartikel (refereegranskat)abstract
- Background: There is a lack of theoretical framework supporting stem cell transplant nurses in their assessment, judgment and caring interventions of sibling stem cell donors. Objective: The purpose of this study was to explore sibling stem cell donors’ main concerns and how they deal with them before and after donation. Method: Ten healthy sibling donors, 5 men and 5 women, with a median age of 54 years were included in this study when they were due to donate stem cells to a brother or sister. Data were collected prospectively on three occasions (before the donation and three and twelve months after it) through in-depth interviews, which were recorded and transcribed verbatim for analysis by the Grounded Theory method according to Charmaz. Results: This study describes the efforts of the ten donors to fulfil their duty as a sibling by doing what they considered necessary in order to help. Their efforts were summarised in a process wherein the grounded theory generated three main categories; Prepare, Promote and Preserve. A clear path of transition leading to fulfilment is evident, starting before the donation and continuing for one year afterwards. Conclusions: Being a sibling stem cell donor means doing what you have to do to fulfil your duty and if possible, saving the life of a seriously ill brother or sister. The relationship between the siblings is strengthened by the donation process. Sibling stem cell donation appears to be about fulfilment and the theoretical framework may support clinicians in their evaluation and support of donors.
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| 13. |
- Kisch, Annika M., et al.
(författare)
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The Meaning of Being a Living Kidney, Liver or Stem Cell Donor : A Meta-Ethnography
- 2018
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Ingår i: Transplantation. - : Wolters Kluwer. - 0041-1337 .- 1534-6080. ; 102:5, s. 744-756
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Studies on living donors from the donors' perspective show that the donation process involves both positive and negative feelings involving vulnerability. Qualitative studies of living kidney, liver, and allogeneic hematopoietic stem cell donors have not previously been merged in the same analysis. Therefore, our aim was to synthesize current knowledge of these donors' experiences in order to deepen understanding of the meaning of being a living donor for the purpose of saving or extending someone's life.METHODS: The meta-ethnography steps presented by Noblit & Hare in 1988 were used.RESULTS: Forty-one qualitative studies from 1968 to 2016 that fulfilled the inclusion criteria were analyzed. The studies comprised experiences of over 670 donors. The time since donation varied from 2 days to 29 years. A majority of the studies, 25 out of 41, were on living kidney donors. The synthesis revealed that the essential meaning of being a donor is doing what one feels one has to do, involving 6 themes; A sense of responsibility, Loneliness and abandonment, Suffering, Pride and gratitude, A sense of togetherness, and A life changing event.CONCLUSION: The main issue is that one donates irrespective of what one donates. The relationship to the recipient determines the motives for donation. The deeper insight into the donors' experiences provides implications for their psychological care.
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| 14. |
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| 15. |
- Lennerling, Annette, et al.
(författare)
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Health Literacy Among Swedish Lung Transplant Recipients 1 to 5 Years After Transplantation
- 2018
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Ingår i: Progress in Transplantation. - : SAGE Publications. - 1526-9248 .- 2164-6708. ; 28:4, s. 338-342
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION:: Understanding medical information and self-management ability is vital for good quality of life among transplant recipients. However, health literacy (HL) has never been investigated among lung transplant recipients. OBJECTIVE:: This study investigated HL among Swedish lung transplant recipients 1 to 5 years after lung transplantation in relation to recovery, fatigue, adherence, cognitive function (CF), and relevant demographic variables. METHOD:: This study was part of a cross-sectional, Swedish multicenter study 1 to 5 years post lung transplantation called Self-Management after Thoracic Transplantation. In total, 117 (57%) of 204 eligible lung recipients due for their yearly follow-up were included; 1 year (n = 35), 2 years (n = 28), 3 years (n = 23), 4 years (n = 20) or 5 years (n = 11) after transplantation. The newest vital sign (NVS) instrument was used to measure the level of HL and contained 6 interview questions. The total scores ranged from 0 to 6 with 0 to 1= inadequate/low, 2 to 3 = marginal, 4 to 6 = adequate/good HL. RESULTS:: Twenty-one percent reported an NVS score of 0 to 3 indicating low or marginal HL and 79% scored 4 to 6 indicating adequate HL. Recipients scoring low or marginal were represented in all 5 years posttransplant, and the majority were not able to work. Health literacy was not related to age, sex, fatigue, adherence, recovery, marital status, or self-reported CF. DISCUSSION:: Health literacy was good among Swedish lung recipients. Providers should be aware that patients with low HL might present at any time posttransplant, and screening will help identify patients who need extra support.
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| 16. |
- Winterling, Jeanette, et al.
(författare)
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Worries and Psychological Well-Being in Potential Hematopoietic Stem Cell Donors Before Donation-A Swedish National Study
- 2023
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Ingår i: Transplantation Proceedings. - : Elsevier. - 0041-1345 .- 1873-2623. ; 55:1, s. 242-248
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Tidskriftsartikel (refereegranskat)abstract
- Background. The physical risks involved in donating hematopoietic stem cells have been thoroughly studied, but little is known about the psychological risks potential donors might face before donation. The aim of this study was to describe potential the pre-donation worries and psychological well-being of hematopoietic stem cell donors and investigate possible associations between donor characteristics and psychological well-being.Methods. In a cross-sectional, national cohort study, we describe pre-donation worries and psychological well-being and investigate possible associations between donor characteristics and psychological well-being. A questionnaire was sent to prospective adult hematopoietic stem cells donors.Results. The study included 210 participants, 47% of whom were related and 53% unrelated to the recipient. Of the participants, 39% reported great worry about the recipient and 12% great worry about themselves as potential donors. Symptoms of anxiety were expressed by 21%, whereas symptoms of depression were uncommon and perceived general mental health was slightly lower than in the Swedish population. Great worry about oneself, lower age, and female sex were related to increased anxiety and lower mental health.Conclusion. This study highlighted that some potential donors report high levels of pre -dona-tion worry and that greater worry about oneself, lower age, and female sex are associated with lower psychological well-being. Although further studies are needed to investigate this psycho-logical risk over time, it is clear that some potential donors are particularly vulnerable.
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