| 1. |
- Bergkvist, Karin, et al.
(author)
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Support in the context of allogeneic hematopoietic stem cell transplantation : The perspectives of family caregivers
- 2020
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In: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 46
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Journal article (peer-reviewed)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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| 2. |
- Casirati, Amanda, et al.
(author)
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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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In: Bone Marrow Transplantation. - 0268-3369. ; 58:9, s. 965-972
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Journal article (peer-reviewed)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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| 3. |
- Dalvindt, Marita, et al.
(author)
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Chronic pain 1-5 years after heart transplantation-A nationwide cross-sectional cohort study
- 2020
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In: Nursing Open. - : Wiley. - 2054-1058.
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Journal article (peer-reviewed)abstract
- Aim To provide a multidimensional assessment of self-reported chronic pain 1-5 years after heart transplantation and its relationship with self-reported well-being, fatigue, recovery, self-efficacy and socio-economic factors and to explore differences between heart recipients and a cohort of lung recipients. Design This multicentre, cross-sectional, cohort study is a part of the Swedish national Self-management after thoracic transplantation study. Methods Six questionnaires were distributed at the heart recipients yearly follow-up (1-5 years) at three Swedish university hospitals 2014-2017. Results The study group comprised of 79 heart recipients, 25 women and 54 men with a mean age of 52.68 years. Chronic pain among heart recipients was common and those not in paid employment as well as those with low psychological well-being and high general fatigue reported significantly more pain. Female heart recipients were more affected by pain. General health and vitality, general fatigue, physical fatigue and reduced activity were related to the pain intensity score. Relevance to clinical practice As it is the duty of the healthcare system to provide adequate pain treatment, screening for pain should be a mandatory part of long-term follow-up.
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| 4. |
- Dalvindt, Marita, et al.
(author)
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Symptom Distress Before and After Heart Transplantation : A Longitudinal 5-Year Follow-Up
- 2024
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In: Clinical Transplantation. - 1399-0012. ; 38:7
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Journal article (peer-reviewed)abstract
- INTRODUCTION: Symptom distress after heart transplantation (HTx) is a significant problem causing uncertainty, low self-efficacy, and psychological distress. Few studies have addressed self-reported symptoms. The aim was to explore self-reported symptom distress from time on the waiting list to 5 years after HTx and its association with self-reported psychological well-being, chronic pain, and fatigue in order to identify possible predictors of psychological or transplant specific well-being.METHODS: This multicenter, longitudinal cohort study includes 48 heart recipients (HTRs), 12 women, and 36 men, with a median age of 57 years followed from pretransplant to 5 years post-transplant. Symptom distress was explored by means of four instruments measuring psychological general wellbeing, transplant specific wellbeing, pain, and fatigue.RESULTS: Transplant specific well-being for the whole improved in a stepwise manner during the first 5 years compared to pretransplant. Heart transplant recipients with poor psychological wellbeing were significantly more burdened by symptom distress, in particular sleep problems and fatigue, for up to 5 years after HTx, and their transplant-specific well-being never improved compared to baseline. The prevalence of pain varied from 40% to 60% and explained a significant proportion of the variance in transplant-specific well-being, while psychological general well-being was mainly predicted by overall symptom distress.CONCLUSION: The presence of distressing symptoms explains a significant proportion of poor psychological wellbeing both among HTRs reporting chronic pain and those without pain.
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| 5. |
- Dalvindt, Marita, et al.
(author)
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Symptom Occurrence and Distress after Heart Transplantation-A Nationwide Cross-Sectional Cohort Study
- 2020
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In: International Journal of Environmental Research and Public Health. - : MDPI AG. - 1660-4601 .- 1661-7827. ; 17:21
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Journal article (peer-reviewed)abstract
- Experiencing symptoms after heart transplantation may hamper the heart recipient's self-management which can lead to negative effects. We know little about symptom occurrence and distress after heart transplantation, especially in relation to sociodemographic variables. The aim of the study was to explore self-reported symptom occurrence and distress after heart transplantation and their relationship with self-reported psychological well-being and sociodemographic factors. This multicenter, cross-sectional, cohort study is associated with the Swedish national Self-Management After Thoracic Transplantation study (SMATT). Two questionnaires were distributed at the heart recipients' yearly follow-up, one to five years post-transplant at three Swedish university hospitals from 2014-2017. In a total 79 heart recipients, 54 men and 25 women, with a mean age 53 years returned the questionnaires. Symptoms occurred differently depending on type and duration of follow-up. The most common symptoms, trembling hands, and decreased libido were also the most distressing. Heart recipients most burdened by symptoms were those younger than 50 years, not working, with poor psychological well-being or living alone. Fatigue explained more than 60% of the variation in transplant specific well-being. In conclusion this study points at the target groups within the heart transplant population that needs person centered symptom management support where the focus should be on side-effects of the medication i.e., trembling hands as well as the patients' sexual health.
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| 6. |
- Fagerström Kristensen, Ingrid, et al.
(author)
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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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In: International Journal of Nursing Health Care Research. - : Gavin Publishers. - 2688-9501. ; 5:04, s. 1-8
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Journal article (peer-reviewed)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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| 7. |
- Forsberg, Anna, et al.
(author)
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Fatigue 1–5 years after lung transplantation: A multicenter cross-sectional cohort study
- 2019
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In: Nordic Journal of Nursing Research. - : SAGE Publications. - 2057-1585 .- 2057-1593. ; 39:2, s. 68-75
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Journal article (peer-reviewed)abstract
- The aim of this study was to investigate the prevalence of fatigue among lung recipients 1–5 years after transplantation (LuTx) and to explore its relationship to distressing symptoms such as dyspnea, sleep problems, pain, and decreased appetite, as well as psychological and transplant specific wellbeing. A cross-sectional, multicenter cohort study was conducted. A total of 117 lung recipients with a mean age of 54 years (SD 13 years) who were due for their annual follow-up were included at 1 year (n=35), 2 years (n=28), 3 years (n=23), 4 years (n=20), and 5 years (n=11) after lung transplantation. Several instruments were used: the Multidimensional Fatigue Inventory, the Organ Transplant and Symptom Well-being Instrument (OTSWI), the Pain-O-Meter, and the Psychological General Well-Being Index. Overall 56% reported high or severe fatigue. The Psychological General Well-Being sum score makes the strongest contribution (p<.0001) to explaining the variance in general fatigue (Beta –.628). The results of the study indicate that efforts both to identify fatigue and to test interventions are needed after LuTx.
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| 8. |
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| 9. |
- Forsberg, Anna, et al.
(author)
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Fear of graft rejection 1-5years after lung transplantation: A nationwide cohort study
- 2018
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In: Nursing Open. - : Wiley. - 2054-1058. ; 5:4, s. 484-490
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Journal article (peer-reviewed)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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| 10. |
- Forsberg, Anna, et al.
(author)
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Fear of graft rejection after heart transplantation - a nationwide cross-sectional cohort study
- 2021
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In: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953.
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Journal article (peer-reviewed)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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