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1.
  • Fehrman-Ekholm, Ingela, 1947, et al. (författare)
  • Incidence of end-stage renal disease among live kidney donors.
  • 2006
  • Ingår i: Transplantation. - : Ovid Technologies (Wolters Kluwer Health). - 0041-1337. ; 82:12, s. 1646-8
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: The increasing use of living kidney donors requires knowledge about long-term effects, especially number and causes of donors with end-stage renal disease (ESRD). METHODS: A retrospective data analysis of 1,112 consecutive living kidney donors who underwent nephrectomy from 1965 until 2005 at Sahlgrenska University Hospital. Case reports were sought with help from nephrologists in the region and data from Swedish Registry of Active Uremic Treatment (SRAU). RESULTS: The number of cases with end stage kidney failure among living kidney donors was 6/1112, that is 0.5%. The donors had reached ESRD during the years 2001-2006, that means 36-41 years after start of the living donor program. The donors were 45-89 years old, median 77 years, and five of six were males. Time since donation was 14-27 years, median 20 years, for the donors developing ESRD. The diagnoses were nephrosclerosis (4 cases), postrenal failure (1 case), and renal carcinoma (1 case). The expected incidence for development of ESRD according to incidence in the general population would have been two donors but we found six. However, considering the high age of the donors in this follow up, the age-matched incidence is calculated to be closer to six donors due to higher incidence in the aged. CONCLUSION: In all 0.5% of the donors developed ESRD. Due to high age of the uremic donors, there seems to be no increased incidence.
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3.
  • Fehrman-Ekholm, Ingela, 1947, et al. (författare)
  • Post-nephrectomy development of renal function in living kidney donors: a cross-sectional retrospective study
  • 2011
  • Ingår i: Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association. - : Oxford University Press (OUP). - 1460-2385 .- 0931-0509. ; 26:7, s. 2377-2381
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Increasing numbers of living donor kidney transplantations calls for better knowledge about long-term donor outcomes and risks. METHODS: To explore long-term kidney donor outcomes and risks, we conducted a cross sectional retrospective study. To this end, we analysed renal function using measured glomerular filtration rate (mGFR) and estimated glomerular filtration rate (eGFR) as well as microalbuminuria, blood pressure (BP), body mass index, haemoglobin, albumin and parathyroid hormone in kidney donors nephrectomized between 1965 and 2005. RESULTS: A total number of 573 kidney donors agreed to undergo medical follow-up examinations. The mean age (standard deviation) at donation was 47 (11) years and the mean time since donation was 14 (9) years. Both mean mGFR [68 (15) mL/min/1.73m(2) body surface; P = 0.028] and mean eGFR [71 (16) mL/min/1.73m(2) body surface; P < 0.001], based on modified diet renal dysfunction and iohexol or Cr-EDTA clearance, respectively, were found to decrease with age and to increase with time since donation. Special multivariable regression analyses reveal that for 30-year old donors, the median eGFR typically increases during the first 17 years, then remains constant for ∼8 years and slowly declines thereafter. For 50-year-old donors, the median eGFR is expected to increase during the first 15 years or so and then to enter a phase of slight progressive decline. In total, 23% (126/546) of the donors were on antihypertensive medication. An additional 22% (117/543) of the donors were found to suffer from hitherto undiagnosed hypertension (BP >140/90 mm Hg). CONCLUSION: Renal function of the remaining kidney in living donors is expected to improve for many years but will show signs of slight deterioration in the longer run.
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4.
  • Flodén, Anne, 1957, et al. (författare)
  • Development and Psychometric Evaluation of the Instrument: Attitudes Towards Organ Donor Advocacy Scale (ATODAS).
  • 2011
  • Ingår i: The open nursing journal. - : Bentham Science Publishers Ltd.. - 1874-4346. ; 5, s. 65-73
  • Tidskriftsartikel (refereegranskat)abstract
    • The consequences of advocacy in nursing are critical when caring for a potential organ donor. No specific instrument has been available to measure attitudes toward organ donor advocacy. The aim of this study was to develop and psychometrically evaluate an instrument for measuring intensive and critical care (ICU) nurses' attitudes toward organ donor advocacy. The study was conducted in two stages: instrument development and instrument evaluation and refinement. A questionnaire was developed (Attitude Toward Organ Donor Advocacy Scale (ATODAS)), which was sent to half of all nurses working in ICUs (general-, neuro-, thoracic- or paediatric-) in Sweden (n=1180). The final response rate was 42.5% (n=502). In order to explore validity and reliability, the expected scale dimensionality of the questionnaire was examined both by explorative principal component analysis (with oblique, varimax rotation) and by confirmatory multi-trait analysis. The confirmatory factor analysis indicated that the ATODAS could best be explained by five factors; Attitudes toward championing organ donation at a structural hospital level; Attitudes toward championing organ donation at a political and research level; Attitudes toward actively and personally safeguarding the will and wishes of the potential organ donor, Attitudes toward safeguarding the potential donor's will and wishes by a professional approach and Attitudes toward safeguarding the will and wishes of the relatives. This initial testing indicated that the ATODAS has good psychometric properties and can be used in future research to explore if interventions may influence attitudes and behaviors related to organ donor advocacy.
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5.
  • Forsberg, Anna, et al. (författare)
  • Attitudes towards organ donor advocacy among Swedish intensive care nurses
  • 2015
  • Ingår i: Nursing in Critical Care. - : Wiley. - 1362-1017 .- 1478-5153. ; 20:3, s. 126-133
  • Tidskriftsartikel (refereegranskat)abstract
    • ObjectivesTo explore the attitudes of Swedish intensive care nurses towards organ donor advocacy. BackgroundThe concept of organ donor advocacy is critical to nurses who care for potential donors in order to facilitate organ donation (OD). MethodsInclusion criteria in this survey were to be a registered nurse and to work in a Swedish intensive care unit (ICU). Participants were identified by the Swedish association of health professionals. A number of 502 Swedish ICU nurses answered the 32-item questionnaire Attitudes Towards Organ Donor Advocacy Scale (ATODAS), covering the five dimensions of organ donor advocacy: attitudes towards championing organ donation at a structural hospital level, or at a political and research level, attitudes towards actively and personally safeguarding the will and wishes of the potential organ donor, or by using a more professional approach and finally to safeguard the will and wishes of the relatives. Data were analysed with the SPSS version 180 and the results were assessed by using Student's t-test and post hoc test, analysis of variance (ANOVA), (2), Pearson's correlation and regression analysis. ResultsThe most favoured advocacy action was safeguarding the POD's will and wishes by a professional approach, closely followed by actively and personally safeguarding the POD's will and wishes. Nurses at local hospitals reported a more positive attitude towards organ donor advocacy overall compared with nurses at larger regional or university hospitals. Important factors leading to positive attitudes were seniority, working experience, participating in conversations with relatives, caring for brain-dead persons and private experiences from OD or organ transplantation. ConclusionsIntensive and critical care nurses with short working experience in university hospitals showed the least positive attitude towards organ donor advocacy. This is problematic because many ODs and all transplantations are performed in university hospitals. Relevance to clinical practiceThis study emphasizes the importance of organizing the care of PODs and their relatives in a way that promotes advocacy.
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6.
  • Friman, Styrbjörn, 1948, et al. (författare)
  • Kidney transplantation--a 46-year experience from the Transplant Institute, Sahlgrenska University Hospital, Gothenburg, Sweden.
  • 2011
  • Ingår i: Clinical transplants. - 0890-9016. ; , s. 119-25
  • Tidskriftsartikel (refereegranskat)abstract
    • The limiting factor in organ transplantation is the availability of organs. Ongoing work to improve donation rates both at the public and the organizational level in donating hospitals is essential. We also think that encouragement of live donation is important, and the possibility of ABO incompatible transplantation has increased the number of LD transplantations. The one-year graft survival rate is excellent and focus has shifted towards achieving long-term results to reduce the attrition rate. There is also an increasing interest in studying and working to reduce comorbidities on a long-term basis and thus, improve survival rates and recipient quality of life.
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7.
  • Almgren, Matilda, et al. (författare)
  • Fatigue after heart transplantation - a possible barrier to self-efficacy
  • 2021
  • Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 35:4, s. 1301-1308
  • Tidskriftsartikel (refereegranskat)abstract
    • Rationale Recovery after heart transplantation is challenging and many heart recipients struggle with various transplant-related symptoms, side-effects of immunosuppressive medications and mental challenges. Fatigue has been reported to be one of the most common and distressing symptoms after heart transplantation and might therefore constitute a barrier to self-efficacy, which acts as a moderator of self-management. Aim To explore the prevalence of fatigue and its relationship to self-efficacy among heart recipients 1-5 years after transplantation. Research method An explorative cross-sectional design, including 79 heart recipients due for follow-up 1-5 years after transplantation. Three different self-assessment instruments were employed; The Multidimensional Fatigue Inventory-19, Self-efficacy for managing chronic disease 6-Item Scale and The Postoperative Recovery Profile. Ethical approval The study was approved by the Regional Ethics Board of Lund (Dnr. 2014/670-14/10) with supplementary approval from the Swedish Ethical Review Authority (Dnr. 2019-02769). Results The reported levels of fatigue for the whole group were moderate in all dimensions of the Multidimensional Fatigue Inventory-19, with highest ratings in the General Fatigue sub-scale. Those most fatigued were the groups younger than 50 years; pretransplant treatment with Mechanical Circulatory Support; not recovered or had not returned to work. Self-efficacy was associated with the sub-dimensions Mental Fatigue (rho = -0 center dot.649) and Reduced Motivation (rho = -0 center dot 617), which explained 40 center dot 1% of the variance when controlled for age and gender. Study limitations The small sample size constitutes a limitation. Conclusions The moderate levels of fatigue reported indicate that it is not a widespread problem. However, for those suffering from severe fatigue it is a troublesome symptom that affects the recovery process and their ability to return to work. Efforts should be made to identify those troubled by fatigue to enable sufficient self-management support.
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8.
  • Almgren, Matilda, et al. (författare)
  • Self-efficacy in the context of heart transplantation - a new perspective.
  • 2017
  • Ingår i: Journal of clinical nursing. - : Wiley. - 1365-2702 .- 0962-1067. ; 26:19-20, s. 3007-3017
  • Tidskriftsartikel (refereegranskat)abstract
    • An in-depth exploration of self-efficacy among heart transplant recipients by means of Bandura's self-efficacy theory.An essential component of chronic illness management is self-management, which refers to activities carried out by people to create order, structure and control in their lives. Self-efficacy is an important aspect of self-management, which seems to have become the main paradigm for long-term management after solid organ transplantation.A directed content analysis using Bandura's self-efficacy theory.Open-ended, in-depth interviews were conducted with 14 heart transplant recipients at their 12-month follow-up after heart transplantation.This study generated the hypothesis that from the patients' perspective, self-efficacy after heart transplantation concerns balancing expectations to find the optimum level of self-efficacy. Performance accomplishment was found to have the greatest impact on self-efficacy, while its absence was the main source of disappointments. It was also revealed that the gap between performance accomplishment and efficacy expectations can be understood as uncertainty.It is essential to assess both expectations and disappointments from the patient perspective in order to promote an optimum level of self-efficacy among heart transplant recipients. This includes supporting the heart recipient to adopt mental and physical adjustment strategies to balance her/his expectations as a means of minimising disappointments. The understanding that uncertainty can undermine self-efficacy is crucial.The merging of the uncertainty in illness and self-efficacy theories provides an excellent framework for the provision of self-management support. In addition, focusing on a partnership between the transplant professionals and the recipient is essential because it minimises the use of a behavioural approach.
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9.
  • Almgren, Matilda, et al. (författare)
  • Self-efficacy, recovery and psychological wellbeing one to five years after heart transplantation: a Swedish cross-sectional study
  • 2021
  • Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953. ; 20:1, s. 34-39
  • Tidskriftsartikel (refereegranskat)abstract
    • Background Self-efficacy refers to a person ' s confidence in carrying out treatment-related activities and constitutes the foundation of self-management as well as long-term follow-up after heart transplantation. Exploring the heart recipients ' experiences by means of self-report instruments provides healthcare professionals with valuable information on how to supply self-management support after heart transplantation. Aims The aim was to explore self-efficacy in relation to the self-reported level of recovery and psychological wellbeing, among adult heart recipients, one to 5 years after transplantation. Methods This cross-sectional study includes 79 heart recipients, due for follow-up one to 5 years after transplantation. Three different self-assessment instruments were employed: the self-efficacy for managing chronic disease 6-item scale; the postoperative recovery profile; and the psychological general wellbeing instrument. Results The reported level of self-efficacy was high (median 8.3, maximum score 10). Significantly higher self-efficacy was seen among those who had returned to work (P = 0.003) and those without pre-transplant mechanical circulatory support (P = 0.033). In total, 65.5% (n = 52) reported being reasonably recovered, while 18.8% (n = 12) were not recovered. The median total psychological general wellbeing score was 108 (P-25 = 24,P-75 = 117), suggesting overall good psychological wellbeing in the whole group of heart recipients. Conclusion The heart transplant recipients in our study had an overall high level of self-efficacy. Low self-efficacy was found among those with a low self-reported level of recovery, pre-transplant treatment with mechanical circulatory support or who had not returned to work. This is important information for transplant professionals when helping heart recipients to balance their expectations about recovery.
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10.
  • Almgren, Matilda, et al. (författare)
  • The meaning of being in uncertainty after heart transplantation - an unrevealed source to distress.
  • 2017
  • Ingår i: European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology. - : Oxford University Press (OUP). - 1873-1953 .- 1474-5151. ; 16:2, s. 167-174
  • Tidskriftsartikel (refereegranskat)abstract
    • As many as 88% of heart transplant recipients (HTRs) suffer from psychological distress. Both psychosocial factors and physical health are associated with increased psychological distress. However, the causes and impacts of psychological distress are unclear. HTRs strive for a sense of control over their health and daily lives in order to improve their psychological well-being. Perceived control was found to be related to the patients' construction of normality, their emotional state, as well as their thoughts and feelings of uncertainty about the future.An in-depth exploration of the meaning of uncertainty during the first year after a heart transplantation (HTX).A phenomenological-hermeneutic method was employed. Interviews were conducted with 14 patients, four women and ten men, with a mean age of 51 years (range: 28-67 years).Being in uncertainty after HTX means losing a sense of coherence, which shatters the HTR's whole worldview. The HTRs search for meaning and strive for coherence, which is no longer achievable. By using a nursing theory, we understand that uncertainty should be seen as a natural state among HTRs. It constitutes the starting point from which the HTRs can reorganise their self-structure and find a new view of life. When striving for normality, certainty and predictability (i.e., the healthcare professional's perspective), we block or prolong this process, thus causing distress among HTRs because they are unable to create a new orientation in life.This study presents a hypothesis of the primary cause of psychological distress after HTX and provides a useful framework for how to approach this condition.
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11.
  • Cavallini, Josefin, et al. (författare)
  • Social function after solid organ transplantation: An integrative review
  • 2015
  • Ingår i: Nordic Journal of Nursing Research. - : SAGE Publications. - 2057-1585 .- 2057-1593. ; 35:4, s. 227-234
  • Tidskriftsartikel (refereegranskat)abstract
    • The way organ transplant recipients depend on social interactions to develop and experience social health and well-being is similar to that of the general population. A transplant may result in a close to full recovery of health status, but the physical and social problems can persist in some patients. The focus on improving the recipients’ social participation has therefore become an important issue. The purpose of this integrative literature review was study social function after solid organ transplantation, that is, kidney, liver, lung or heart. An integrative review was performed on studies that matched the selection criteria and published in peer-reviewed journals from January 2000 to December 2014. The information from the text was extracted and patterns of social function were categorized into different subgroups that were further looked at, and five categories emerged: 1) work, 2) education, 3) daily activities and leisure, 4) social adaption and 5) barriers. The key aspects of social functioning involve five vital domains, that is, work, education, daily activities and leisure, social adaption and barriers. Returning to work appears to be the most important for the recipients independently of the transplanted organ.
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12.
  • Courtney, Aisling E, et al. (författare)
  • Living Donor Kidney Transplantation in Older Individuals: An Ethical Legal and Psychological Aspects of Transplantation (ELPAT) View.
  • 2023
  • Ingår i: Transplant international : official journal of the European Society for Organ Transplantation. - 1432-2277. ; 36
  • Tidskriftsartikel (refereegranskat)abstract
    • Living donor transplantation is the optimal treatment for suitable patients with end-stage kidney disease. There are particular advantages for older individuals in terms of elective surgery, timely transplantation, and early graft function. Yet, despite the superiority of living donor transplantation especially for this cohort, older patients are significantly less likely to access this treatment modality than younger age groups. However, given the changing population demographic in recent decades, there are increasing numbers of older but otherwise healthy individuals with kidney disease who could benefit from living donor transplantation. The complex reasons for this inequity of access are explored, including conscious and unconscious age-related bias by healthcare professionals, concerns relating to older living donors, ethical anxieties related to younger adults donating to aging patients, unwillingness of potential older recipients to consider living donation, and the relevant legislation. There is a legal and moral duty to consider the inequity of access to living donor transplantation, recognising both the potential disparity between chronological and physiological age in older patients, and benefits of this treatment for individuals as well as society.
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13.
  • Dalvindt, Marita, et al. (författare)
  • Chronic pain 1-5 years after heart transplantation-A nationwide cross-sectional cohort study
  • 2020
  • Ingår i: Nursing Open. - : Wiley. - 2054-1058.
  • Tidskriftsartikel (refereegranskat)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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14.
  • Dalvindt, Marita, et al. (författare)
  • Symptom Occurrence and Distress after Heart Transplantation-A Nationwide Cross-Sectional Cohort Study
  • 2020
  • Ingår i: International Journal of Environmental Research and Public Health. - : MDPI AG. - 1660-4601 .- 1661-7827. ; 17:21
  • Tidskriftsartikel (refereegranskat)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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15.
  • Dor, Frank J M F, et al. (författare)
  • New classification of ELPAT for living organ donation.
  • 2011
  • Ingår i: Transplantation. - 1534-6080. ; 91:9, s. 935-8
  • Tidskriftsartikel (refereegranskat)abstract
    • In the literature, varying terminology for living organ donation can be found. However, there seems to be a need for a new classification to avoid confusion. Therefore, we assessed existing terminology in the light of current living organ donation practices and suggest a more straightforward classification. We propose to concentrate on the degree of specificity with which donors identify intended recipients and to subsequently verify whether the donation to these recipients occurs directly or indirectly. According to this approach, one could distinguish between "specified" and "unspecified" donation. Within specified donation, a distinction can be made between "direct" and "indirect" donation.
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16.
  • Fehrman-Ekholm, Ingela, 1947, et al. (författare)
  • Living kidney donors developing end-stage renal disease
  • 2006
  • Ingår i: Transplantation proceedings. - : Elsevier BV. - 0041-1345. ; 38:8, s. 2642-3
  • Tidskriftsartikel (refereegranskat)abstract
    • The incidence of end-stage kidney failure (ESRF) was analyzed among the cohort of 1112 living kidney donors who underwent nephrectomy from 1965 through 2005. It was found that at least six persons had developed ESRF at 14 to 27 years (median = 20 years), following donation. Five of six were men. Five were parents and one, a sibling. The diagnoses were nephrosclerosis (n = 4), postrenal failure (n = 1), and renal carcinoma (n = 1). One donor, aged 45 years, underwent kidney transplantation.
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18.
  • Fehrman-Ekholm, Ingela, 1947, et al. (författare)
  • Single or double arteries in the remnant kidney after donation: influence on the long-term outcome of the donor.
  • 2009
  • Ingår i: Transplantation proceedings. - : Elsevier BV. - 0041-1345. ; 41:2, s. 764-5
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: A kidney with a single artery is preferred for donation. We wondered how often the donor is left with double or triple arteries, and whether this has any implications for long-term kidney function. METHODS: The consecutive living donors from 1984 to 1988 were reevaluated for kidney function and outcome. RESULTS: In total, 154 donor nephrectomies were performed with an open anterior technique. Ninety-eight patients were left with a single artery to the remnant kidney and 56 (36%) with more than one. Six individuals were left with 3 arteries. The mean age at donation was 48 +/- 12 years and mean age at reevaluation was 68 +/- SD 12 years. In the group with a remnant single artery, the mean preoperative serum creatinine level was 87 +/- 11 micromol/L, at 6 months it was 127 +/- 20 micromol/L, and in 2007 it was 90 +/- SD 23 micromol/L. The estimated glomerular filtration rate (GFR) was 67 +/- 18 mL/min. Thirty-three percent of donors (19/58) had developed hypertension. Among the group with multiple remnant arteries, the mean preoperative serum creatinine level was 87 +/- SD 11 micromol/L, at 6 months it was 131 +/- 21 micromol/L, and in 2007 it was 100 +/- 45 micromol/L. Estimated GFR was 64 +/- 16) mL/min. Twenty-eight percent of the donors (10/36) had developed hypertension. CONCLUSIONS: One third of kidney donors were left with double or triple arteries to the remnant kidney. The 20-year follow-up showed no significant difference in the renal function between the 2 groups.
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19.
  • Forsberg, A, et al. (författare)
  • Chronic Pain One to Five Years after Lung Transplantation
  • 2017
  • Ingår i: Journal of Organ Transplantation. - : Open Access Pub. - 2576-9359. ; 1:1, s. 5-16
  • Tidskriftsartikel (refereegranskat)abstract
    • Chronic bodily pain after lung transplantation has received little attention. Therefore, the aim was to provide a multidimensional assessment of self-reported chronic pain 1-5 years after lung transplantation and its relationship with self-reported psychological general well-being (PGWB) and self-efficacy. This multicenter, cross-sectional study is a part of the Swedish national study: Self-management after thoracic transplantation (SMATT). In total, 117 lung transplant recipients, all white, due for their yearly follow-up at one (n=35), two (n=28), three (n=23), four (n=20) or five years (n=11) after transplantation were included. Of these, 113 reported their pain on the Pain-O-Meter (POM), which provides information about pain intensity, quality, location, and duration. In addition, they responded to the PGWB instrument and the Self-Efficacy instrument for managing chronic disease. The prevalence of pain was 51% after 1 year, 68 % after 2 years, 69.5 % after 3 years, 75 % after 4 years and 54.5 % after 5 years. Women experienced higher pain intensity and worse sensory and affective burden than men. Psychological general well-being was the main factor that contributed to the experience of pain. Better perceived psychological well-being lowered the odds for pain, while higher self-efficacy reduced the probability of experiencing pain. Many of the lung recipients lacked pain treatment and were uncertain about the reasons behind their pain. Chronic bodily pain is a common and serious symptom up to five years after lung transplantation. Female lung recipients experience more pain and pain related illness than men.
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20.
  • Forsberg, Anna, et al. (författare)
  • Fatigue 1–5 years after lung transplantation: A multicenter cross-sectional cohort study
  • 2019
  • Ingår i: Nordic Journal of Nursing Research. - : SAGE Publications. - 2057-1585 .- 2057-1593. ; 39:2, s. 68-75
  • Tidskriftsartikel (refereegranskat)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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21.
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22.
  • Forsberg, Anna, et al. (författare)
  • Fear of graft rejection 1-5years after lung transplantation: A nationwide cohort study
  • 2018
  • Ingår i: Nursing Open. - : Wiley. - 2054-1058. ; 5:4, s. 484-490
  • 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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23.
  • Forsberg, Anna, et al. (författare)
  • Fear of graft rejection after heart transplantation - a nationwide cross-sectional cohort study
  • 2021
  • Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953.
  • 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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24.
  • Forsberg, Anna, et al. (författare)
  • Pain, fatigue and well-being one to five years after lung transplantation - a nationwide cross-sectional study
  • 2018
  • Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 1471-6712 .- 0283-9318. ; , s. 971-978
  • Tidskriftsartikel (refereegranskat)abstract
    • RATIONALE AND AIM: Little is known about persistent pain after lung transplantation. Therefore, the aim was to present a multidimensional assessment of self-reported pain 1-5 years after lung transplantation and its relationship with fatigue and transplant-specific well-being.METHODS: This nationwide, cross-sectional cohort study is part of the self-management after thoracic transplantation study. A total of 117 lung recipients, all White, who were due for their annual follow-up at one (n = 35), two (n = 28), three (n = 23), four (n = 20) and 5 years (n = 11) after lung transplantation were included. We used three instruments; the Pain-O-Meter (POM), which provides information about pain intensity, sensation, location and duration, the MFI-19 fatigue instrument and the Organ Transplant Symptom and Well-being Instrument (OTSWI). Permission to carry out this study was granted by the Regional Ethical Review Board in southern Sweden (D-nr 2014-124).RESULTS: The prevalence of pain was 51% after 1 year, 68% after 2 years, 69.5% after 3 years, 75% after 4 years and 54.5% after 5 years. Women experienced more pain than men. Lung recipients with pain reported lower well-being and higher symptom distress but were not more fatigued than those without pain.STUDY LIMITATIONS: The limitations of this study are due to the cross-sectional design. The recruitment of patients during the study period was probably affected by the different conditions regarding staffing at the outpatient lung transplant clinic in the two thoracic transplant centres in Sweden. The slightly different approach to the care of these patients in the pre, peri and postoperative setting contributes to the heterogeneity of the study population.CONCLUSION: Chronic bodily pain up to 5 years after lung transplantation reduces perceived well-being. Lung recipients with pain report higher symptom distress than those without pain.
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25.
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26.
  • Forsberg, Anna, 1969, et al. (författare)
  • The core of social function after solid organ transplantation.
  • 2016
  • Ingår i: Scandinavian journal of caring sciences. - : Wiley. - 1471-6712 .- 0283-9318. ; 30:3, s. 458-65
  • Tidskriftsartikel (refereegranskat)abstract
    • Background Social function is a key aspect of health‐related quality of life after solid organ transplantation (SOT). The focus of this study was to report how solid organ‐transplanted patients change their social function after transplantation. Aim To investigate the main concerns associated with social function after SOT and how solid organ transplant recipients (SOTRs) deal with these concerns. Method Twenty SOTRs, 13 men and 7 women, with a mean age of 54 years (range 22–75 years) and due for their first‐year follow‐up were included in this study. The informants had received various types of solid organs. Data were collected through in‐depth interviews, which were recorded and transcribed verbatim for analysis by the method of grounded theory (GT) developed by Charmaz. Result The GT of this study describes the efforts by the 20 SOTRs to adapt socially in order to maintain their social functioning and leading a normal life. The efforts summaries a process wherein the generated GT is present through three main categories: deconstruction, restriction and reconstruction, showing various ways to socially adapt. Through this process, a clear path of transition through adaptation is evident, starting before transplantation and continues beyond the first year after transplantation. Conclusion Social functions improved through a process of adaptation during the first year after transplantation. Working and travelling were the two most important aspects of social function. All the informants emphasised the importance of regaining a normal life, which was the outcome of a successful adaptation.
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27.
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28.
  • Forsberg, Anna, et al. (författare)
  • Understanding the Perceived Threat of the Risk of Graft Rejections : A Middle-Range Theory
  • 2015
  • Ingår i: Global Qualitative Nursing Research. - : Sage Publications. - 2333-3936. ; 2
  • Tidskriftsartikel (refereegranskat)abstract
    • From a clinical viewpoint, graft rejection is one of the greatest threats faced by an organ transplant recipient (OTR). We propose a middle-range theory (MRT) of Perceived Threat of the Risk of Graft Rejection (PTRGR) as a contribution to the practice of transplant nursing. It could also apply to the detection of risky protective behavior, that is, isolation, avoidance, or non-adherence. The proposed MRT covers the following concepts and the relationship between them: transplant care needs, threat reducing interventions, intervening variables, level of PTRGR, protective strategies, and evidence-based practice. Parts of this theory have been empirically tested and support the suggested relationship between some of the concepts. Further tests are needed to strengthen the theoretical links. The conceptual framework might serve as a guide for transplant nurses in their efforts to promote post-transplant health and reduce threat-induced emotions.
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29.
  • Frunza, Mihaela, et al. (författare)
  • Dealing With Public Solicitation of Organs From Living Donors-An ELPAT View
  • 2015
  • Ingår i: Transplantation. - 0041-1337 .- 1534-6080. ; 99:10, s. 2210-4
  • Tidskriftsartikel (refereegranskat)abstract
    • Although transplant professionals have initially been reluctant to perform transplants after public solicitation of organs from living donors, nowadays these transplants are increasingly being performed and reported. After clarifying the existing terminology, we elaborate an operational definition of public solicitation that is consistent with the Ethical, Legal, and Psychosocial Aspects of Transplantation classification for living organ donation. Our aim is to critically assess this phenomenon, from a legal, moral, and practical perspective, and to offer some recommendations. From a legal point of view, we analyze the current situation in the Europe and the United States. From a moral perspective, we evaluate the various arguments used in the literature, both in favor and against. Finally, we offer a set of recommendations aimed at maximizing the organ donor pool while safeguarding the interests of potential living donors.
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30.
  • Kisch, Annika M., et al. (författare)
  • The Meaning of Being a Living Kidney, Liver or Stem Cell Donor : A Meta-Ethnography
  • 2018
  • Ingår i: Transplantation. - : Wolters Kluwer. - 0041-1337 .- 1534-6080. ; 102:5, s. 744-756
  • 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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31.
  • Lennerling, Annette, 1963, et al. (författare)
  • Becoming a living kidney donor
  • 2003
  • Ingår i: Transplantation. - 0041-1337. ; 76:8, s. 1443-7
  • Tidskriftsartikel (refereegranskat)abstract
    • Earlier investigations of attitudes of living kidney donors have been performed in retrospect. We saw a need to investigate in depth those motives and feelings that are relevant in potential kidney donors. With a phenomenologic approach, interviews were performed with 12 potential donors. Seven categories of motives were identified: a desire to help, increased self-esteem from doing good deeds, identification with the recipient, self-benefit from the relative's improved health, mere logic, external pressure, and a feeling of moral duty. In the individual, these categories interacted to create a perception of donation being the only option. PMID: 14578765 [PubMed - indexed for MEDLINE]
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32.
  • Lennerling, Annette, 1963, et al. (författare)
  • Donors self-reported experiences of live kidney donation--a prospective study.
  • 2012
  • Ingår i: Journal of renal care. - : Wiley. - 1755-6686 .- 1755-6678. ; 38:4, s. 207-12
  • Tidskriftsartikel (refereegranskat)abstract
    • Many reports on living kidney donation describe rapid recovery. In our experience rehabilitation is rather slow. This study aimed to explore self-reported health status among living donors (LDs) three to four weeks and six months post-donation with a longitudinal design. In this study. LDs (n = 112) reported their physical and mental health by responding to a questionnaire before surgery, after three to four weeks and after six months. Points could range from 1 (normal) to 5 (severe trouble), total score 7-35. Age (n = 112) was 50 years (median) and 52% were females. Before surgery, the total score was 9 (7-21). After three to four weeks, the score was 15 (7-31), with a rise in all measured variables. Women noted higher score rises than men (p = 0.01). The majority showed complete recovery after six months. It is clear that professional nursing support in the recuperation period is needed. Nursing interventions should aim at preventing delay and setbacks in the donors' recovery process.
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33.
  • Lennerling, Annette, 1963, et al. (författare)
  • Health Literacy among patients with end-stage kidney disease and kidney transplant recipients
  • 2021
  • Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 35:2, s. 485-491
  • Tidskriftsartikel (refereegranskat)abstract
    • Main problem Self-management is essential for patients both before and after kidney transplantation and requires an adequate level of health literacy (HL), that is the ability to comprehend and process health information. Low HL is associated with poor clinical outcome and an increased risk of death. In Europe, HL has been scarcely studied. The aim of this study was to investigate the levels of HL in a Swedish cohort of kidney transplant (KTx) candidates and KTx recipients. Methods A single centre cross-sectional cohort study. Participants; n = 50 KTx candidates and n = 49 KTx recipients. HL was measured with the Newest Vital Sign instrument (NVS). Statistical analysis was made using the chi-square, Mann-Whitney U- or t-test. Results Study participants; n = 99, 61.6% male, mean age 52 years. Low or possible inadequate HL was seen in 20%. There was no statistical difference in the levels of HL related to sex, educational level, ability to work or between KTx candidates and KTx recipients. Conclusions In this cohort, one fifth had low or possible inadequate HL measured by the NVS. Screening is needed to identify persons with poor HL. These persons require tailored education and person-centred care to cope with self-management.
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34.
  • Lennerling, Annette, 1963, et al. (författare)
  • Laparoscopic or open surgery for living donor nephrectomy factor for graft loss
  • 2001
  • Ingår i: Nephrology Dialysis and Transplantation. - 1460-2385. ; 16:2, s. 383-6
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: The anterior extraperitoneal approach for living donor nephrectomy has been used in more than 700 living cases in the unit and proved to be safe for the donor. In 1998, laparoscopic nephrectomy was introduced as an option when technically feasible. We found it essential to investigate the consequences of the new technique. SUBJECTS AND METHODS: One hundred living donor kidney transplantations were performed from 1998 to June 2000, 45 with laparoscopic, 55 with open nephrectomy. The donors took part in a structured interview 4 weeks after the donation and their responses were categorized in three classes. RESULTS: In each group, one recipient had delayed initial function. The serum creatinine levels after 3 and 7 days or the GFR values after 6 months did not differ. One graft has been lost following laparoscopic nephrectomy and four after open surgery. For the laparoscopy donors, the median number of post-operative days in hospital was 5.0 days (range 2-9), vs 6.0 (4-8) after open surgery (NS). The requirement of opoid analgesics post-operatively was 5.0 doses (1-22) vs 6.0 (1-38) (P=0.02); and after 4 weeks, 23 of 45 laparoscopic donors were free of pain vs eight of 55 open nephrectomy donors (P=0.0004). Approximately one-third of all donors felt some restriction of physical activity and the majority complained of impaired physical energy. There were no differences between the groups. The duration of sick-leave after laparoscopic surgery was median 6 (2-19) weeks vs 7 (1-16) (NS). CONCLUSIONS: Laparoscopic nephrectomy is safe. Less post-operative pain is a definite advantage for the donor. PMID: 11158417 [PubMed - indexed for MEDLINE]
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35.
  • Lennerling, Annette, 1963, et al. (författare)
  • Living organ donation practices in Europe - results from an online survey.
  • 2013
  • Ingår i: Transplant international : official journal of the European Society for Organ Transplantation. - : Frontiers Media SA. - 1432-2277. ; 26:2, s. 145-53
  • Tidskriftsartikel (refereegranskat)abstract
    • In Europe, living organ donation (LOD) is increasingly accepted as a valuable solution to overcome the organ shortage. However, considerable differences exist between European countries regarding frequency, practices and acceptance of donor-recipient relations. As a response, the Coordination Action project 'Living Organ Donation in Europe' (www.eulod.eu), funded by the Seventh Framework Programme of the European Commission, was initiated. Transplant professionals from 331 European kidney and liver transplant centres were invited to complete an online survey on living kidney donation (LKD) and living liver donation (LLD). In total, 113 kidney transplant centres from 40 countries and 39 liver transplant centres from 24 countries responded. 96.5% and 71.8% performed LKD and LLD respectively. The content of the medical screening of donors was similar, but criteria for donor acceptance varied. Few absolute contraindications for donation existed. The reimbursement policies diverged and the majority of the donors did not get reimbursed for their income loss during recovery. Large discrepancies were found between geographical European regions (the Eastern, the Mediterranean and the North-Western). As a result of this survey we suggest several recommendations to improve quality and safety of LOD in Europe.
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36.
  • Lennerling, Annette, 1963, et al. (författare)
  • Motives for becoming a living kidney donor
  • 2004
  • Ingår i: Nephrology Dialysis Transplantation. - : Oxford University Press (OUP). - 0931-0509 .- 1460-2385. ; 19:6, s. 1600-5
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Recruitment of living donors represents a medical and moral responsibility. Their motives are often complex. Categories of motives and factors causing concern were identified from a previous in-depth interview study and from the literature. The aim of the present study was to evaluate these motives. METHODS: A questionnaire was sent to 207 potential kidney donors undergoing evaluation for donation in Norway and Sweden. They were asked to mark on a visual analogue scale, 0-10, the importance given to each of nine motives and five factors of concern. Questions were also asked about who took the initiative and the source of information. RESULTS: The response rate was 74%; 154 questionnaires were returned. The strongest motives to become a donor were a wish to help (median 9.3), self-benefit from the recipient's improved health (median 9.2) and identification with the recipient (median 9.1). In contrast, a sense of guilt regarding past relationships (median 0.9), pressure from others (median 0.8), a religious motive (median 0.8) and increased self-esteem (median 0.7) were rare or weak incentives for donation. There were large individual variations in the mix, particularly regarding moral duty (5.6, range 0.1-10.0). Most potential donors (64%) had taken the initiative for the assessment themselves, but in 22% it was the recipient's physician. Physicians were the dominant source of information. The potential donors expressed much more concern for the recipient than for themselves. CONCLUSIONS: Living kidney donor assessment includes an exploration of the individuals' mixed feelings. An analysis of the motive enables individualized treatment and support for non-donors.
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37.
  • Lennerling, Annette, 1963, et al. (författare)
  • Non-adherence to immunosuppressant after lung transplantation - A common risk behavior
  • 2019
  • Ingår i: Open Nursing Journal. - : Bentham Science Publishers Ltd.. - 1874-4346. ; 13, s. 108-115
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: After lung transplantation, life-long treatment with immunosuppressive medication is required to prevent rejection and graft loss but adherence to immunosuppressive treatment may be difficult for the lung recipient. Adherence is essential and non-adherence to immunosuppressive treatment can lead to graft loss and death. Objective: The aim of this cross-sectional study was to investigate the prevalence of non-adherence 1 to 5 years after lung transplantation in relation to symptom burden, health literacy, psychological well-being and relevant demographic variables. Methods: 117 adult lung recipients, due for their annual follow-up 1-5 years after lung transplantation, participated. Four self-report instruments were used for assessment: the Basel Assessment of Adherence with Immunosuppressive Medication Scale, the Newest Vital Sign, the Psychological General Well-Being and the Organ Transplant Symptom and Wellbeing Instrument. Statistical analysis was performed. Results: Thirty percent of the lung recipients were non-adherent. The most common non-adherence dimension was not taking a dose (43%) and not being punctual with the regimen (80%). Of those working full time or part time, 43% were non-adherent (p=.032). A higher level of non-adherence was reported a long time after LuTx with the highest level at the 3-year follow-up. Conclusion: The level of non-adherence among lung recipients was high. The highest levels were found among those who had returned to work. Non-adherence increased with time after lung transplantation. © 2019 Annette et al.
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38.
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39.
  • Lennerling, Annette, 1963, et al. (författare)
  • Self-reported non-adherence and beliefs about medication in a Swedish kidney transplant population.
  • 2012
  • Ingår i: The open nursing journal. - : Bentham Science Publishers Ltd.. - 1874-4346. ; 6, s. 41-6
  • Tidskriftsartikel (refereegranskat)abstract
    • Patients' non-adherence to immunosuppressant treatment after organ transplantation may lead to organ failure, graft loss and death. Non-adherence among Swedish kidney transplant recipients has not previously been studied. Hence the aim of this study was to explore non-adherence among Swedish kidney transplant recipients by using self-report instruments as well as testing the hypothesis that there is a difference in self-reported symptoms, beliefs about medicine and social support between respondents with or without self reported non-adherence.
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40.
  • Lennerling, Annette, 1963 (författare)
  • The essence of living kidney donation
  • 2004
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Aim Nephrectomy performed on healthy individuals for the purpose of transplantation is an exceptional activity. It confers great responsibilities to the medical staff involved. Potential donors must be carefully informed and assessed with respect to medical and psychosocial aspects. This thesis focuses on information, motives for donation, setting medical limits and the experience of undergoing nephrectomy.Materials and MethodsThe contents of written information from transplant units in 14 countries were investigated. Interviews were conducted with potential donors, and analysed using a phenomenological approach (n=12). Categories of motives were identified. Questionnaires were sent to potential donors in Sweden and Norway, asking respondents to mark on a Visual Analogue Scale the importance of several motives and concerns (n=154). The outcome of transplantation was evaluated with respect to several risk factors, including a low glomerular filtration rate of the living donor (n=344). From medical records and in interviews performed 4 weeks post donation, the degree of pain, fatigue and physical activity were evaluated and compared between donors who underwent open and laparoscopic nephrectomy (n= 55 and 45, respectively).ResultsThe contents of the information brochures varied greatly, and many lacked important aspects. The decision to donate was mainly emotionally based. Seven major motives for donation were identified - a desire to help, a logic motive, pressure, identification, increased self-esteem, self-benefit and moral duty. A desire to help, identification and self-benefit were the strongest motives. In contrast, pressure, guilt and religion were weak incentives. A glomerular filtration rate below 80 ml/min was shown to be an independent risk factor for graft loss. The laparoscopic nephrectomy technique conferred less pain than the open procedure. Irrespective of surgical method, most donors had not recovered physically or mentally after 4 weeks.ConclusionsTo inform potential donors is of paramount importance, but difficult because the decision to donate is rarely based on actual facts. Most potential live kidney donors have a combination of motives for donation and mixed feelings about it. A lower limit for donor GFR should be set. Regardless of surgical technique, living kidney donation is more demanding, mentally and physically, than commonly recognised. These are important aspects of the pre-donation evaluation.
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41.
  • Lennerling, Annette, 1963, et al. (författare)
  • Written information for potential living kidney donors.
  • 2004
  • Ingår i: Transplant International. - : Frontiers Media SA. - 0934-0874 .- 1432-2277. ; 17:8, s. 449-52
  • Tidskriftsartikel (refereegranskat)abstract
    • To meet the constantly growing demand for organs for transplantation the use of living related and unrelated donors continues to increase. Transplant units with a living-donor programme often provide written information to their potential kidney donors. We saw a need to assess the contents of these brochures. Written information for potential live kidney donors was requested from different Transplant units throughout the world. We obtained and analysed 16 different brochures from 14 countries. The general approach ranged from persuasive to almost deterring. Sixteen main themes were identified in the information material. Eight of those were considered paramount, namely voluntarism, medical suitability, short-term donor risks, long-term donor risks, risk of graft loss, outcome with and without a living donor, postoperative course, and financial conditions. Five brochures covered all these crucial matters. When mentioned, examples and interpretations of donor risks were very dissimilar. Furthermore, the conditions for donation were obviously very different in the various countries. This review points at essential issues to be included in the written information for living kidney donors. All transplant units with a living-donor programme should provide such information, thus enabling the potential donor to make a thorough decision. PMID: 15322746 [PubMed - indexed for MEDLINE]
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42.
  • Lindberg, Catharina, et al. (författare)
  • The meaning of surviving three years after a heart transplant : a transition from uncertainty to acceptance through adaptation
  • 2020
  • Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 17:15
  • Tidskriftsartikel (refereegranskat)abstract
    • The rationale was to longitudinally follow-up interviews performed with heart recipients at their one-year examination in order to deepen the understanding of the meaning of surviving a heart transplant. The aim was to explore the meaning of surviving three years after a heart transplant compared to one year and to identify what constitutes the change process. A phenomenological–hermeneutic method was used. This multicenter study was carried out at the two hospitals in Sweden where heart transplants are performed. A total of 13 heart recipients who survived three years after a heart transplant were invited to participate in this three-year follow-up study and 12 accepted, 3 women and 9 men, with a mean age of 51.25 years. The naïve understanding revealed that the heart recipients strongly accepted their life situation and that time had enabled this acceptance of limitations through adaptation. The thematic structural analyses cover six themes illustrating the meaning of acceptance and adaptation, i.e., accepting life as it is, adapting to post-transplant limitations, adapting to a changed body, social adaptation, showing gratitude and trusting oneself and others. In conclusion, achieving acceptance and a solid sense of self-efficacy after heart transplantation is a time-consuming process that involves courage to face and accept the reality and adapt in every life dimension. © 2020 by the authors. Licensee MDPI, Basel, Switzerland.
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43.
  • Lundmark, Martina, et al. (författare)
  • Developing a Grounded Theory on Adaptation After Lung Transplantation From Intermediate-Term Patient Experiences
  • 2019
  • Ingår i: Progress in Transplantation. - : SAGE Publications. - 1526-9248 .- 2164-6708. ; 29:2, s. 135-143
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Previous research revealed that it is possible for lung recipients to experience health 1 year posttransplant, despite not being fully recovered. However, an in-depth, long-term perspective on how lung recipients' health transition evolves over time is lacking. Thus, the aim of this study was to further develop a grounded theory of health transition by exploring the process of change 1 to 3 years after lung transplantation. Methods: The grounded theory method was used prospectively to analyze the narratives of 14 adult lung recipients who were included at their 1-year follow-up and reinterviewed 2 years later. Results: This novel study contributes an in-depth understanding of the adaptation process after lung transplantation. The greatest concern in the 3 years after lung transplantation was adaptation to a new normality, which was achieved by 3 main strategies: compare, accept, and adjust. Adaptation to a new normality involved understanding that one's previous life no longer exists and that a new way of living requires adaptation. Successful adaptation resulted in the experience of health and well-being, whereas too many symptoms and limitations in everyday life led to difficulties and a profound sense of illness. Conclusions: Lung recipients can experience health, despite symptoms and complications by adapting to a new normality. This individual process begins posttransplant and continues throughout life.
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44.
  • Lundmark, Martina, et al. (författare)
  • Recovery after lung transplantation from a patient perspective – proposing a new framework
  • 2016
  • Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 72:12, s. 3113-3124
  • Tidskriftsartikel (refereegranskat)abstract
    • Aims: The aims of this study were two-fold: to develop the concept analysis by Allvin etal. from lung recipients’ perspective of their post-transplant recovery process and to identify the recovery trajectories including critical junctions in the post-transplant recovery process after lung transplantation. Background: Lung transplantation is an established treatment for patients with end-stage lung disease. The recovery process after lung transplantation is very demanding. Today, patients are expected to play an active role in their own recovery but require ongoing support during the process. Design: A deductive, retrospective interview study using directed content analysis and Allvin′s recovery concept analysis. Method: Fifteen adult lung transplant recipients who were due their 12-month follow-up were consecutively included and interviewed during 2015. Patients who were medically unstable or had difficulties speaking Swedish were excluded from this multi-centre study. Findings: Allvin's concept analysis is partly applicable to the context of lung transplantation. The recipients’ experience of the post-transplant recovery process could be confirmed in the main dimensions of the concept analysis, while several sub-dimensions were contradictory and were excluded. Six new sub-dimensions emerged; symptom management, adjusting to physical restraints, achieving an optimum level of psychological well-being, emotional transition, social adaptation and reconstructing daily occupation. Conclusion: The concept analysis by Allvin et al. was possible to expand to fit the lung transplantation context and a new contextual definition of post-transplant recovery after solid organ transplantation was developed. Recovery and health were viewed as two different things. © 2016 John Wiley & Sons Ltd
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45.
  • Lundmark, Martina, et al. (författare)
  • Recovery, symptoms, and well-being one to five years after lung transplantation - A multi-centre study
  • 2019
  • Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 33:1, s. 176-184
  • Tidskriftsartikel (refereegranskat)abstract
    • Background In recent years, survival after lung transplantation has remained largely unchanged despite improvements in short-and intermediate-term survival, indicating the need to identify factors associated with recovery and long-term survival. Very little is known about how lung recipients recover after lung transplantation and whether such factors are related to symptom distress and well-being. This constitutes the rationale of the study. Aim The aim was to explore symptom prevalence and distress as well as the degree of self-reported perceived recovery and well-being 1-5 years after adult lung transplantation. Method This multicentre, cross-sectional nationwide study includes 117 lung recipients due for follow-up at 1 year (n = 35), 2 years (n = 28), 3 years (n = 23), 4 years (n = 20) and 5 years (n = 11). Three different self-assessment instruments were utilised; The Postoperative Recovery Profile, the Organ Transplant Symptom and Well-Being Instrument, and the Psychological General Well-Being Instrument. Ethical approval of the study was obtained. Results Few (5.7%) lung recipients were recovered 1-5 years after lung transplantation and 27.6% were not recovered at all. No relationship was identified between present lung function and self-reported recovery or well-being. There was a strong relationship between recovery and well-being. It is possible to be partly recovered and experience good health. The most prevalent symptoms were tremor 66%, breathlessness 62%, and decreased libido 60%, while the symptoms perceived as most distressing were embarrassment about appearance, decreased libido, and poor appetite. Limitations The cross-sectional design prevents identification of any causal relationships. Patient loss due to transplant mortality and inclusion difficulties resulted in a fairly small sample. Conclusion Our findings suggest the need for changes in follow-up care such as systematic measurement of the degree of self-reported recovery and symptoms. This entails self-management support tailored to the recipients' symptom-management and health-management requirements.
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46.
  • Mamode, N., et al. (författare)
  • Donor Autonomy and Self-Sacrifice in Living Organ Donation: An Ethical Legal and Psychological Aspects of Transplantation (ELPAT) View
  • 2022
  • Ingår i: Transplant International. - : Frontiers Media SA. - 0934-0874 .- 1432-2277. ; 35:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Clinical teams understandably wish to minimise risks to living kidney donors undergoing surgery, but are often faced with uncertainty about the extent of risk, or donors who wish to proceed despite those risks. Here we explore how these difficult decisions may be approached and consider the conflicts between autonomy and paternalism, the place of self-sacrifice and consideration of risks and benefits. Donor autonomy should be considered as in the context of the depth and strength of feeling, understanding risk and competing influences. Discussion of risks could be improved by using absolute risk, supra-regional MDMs and including the risks to the clinical team as well as the donor. The psychological effects on the donor of poor outcomes for the untransplanted recipient should also be taken into account. There is a lack of detailed data on the risks to the donor who has significant co-morbidities.
  •  
47.
  • Meyer, Käthe B., et al. (författare)
  • Long-term experiences of Norwegian live kidney donors: Qualitative in-depth interviews
  • 2017
  • Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 7:2
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: Live kidney donation is generally viewed as a welcome treatment option for severe kidney disease. However, there is a disparity in the body of research on donor experiences and postdonation outcome, and lack of knowledge on long-term consequences described by the donors. This study was conducted to provide insight into donorsī subjective meanings and interpretation of their experiences ∼10 years after donation. Design: Qualitative explorative in-depth interviews. The sampling strategy employed maximum variation. Setting Oslo University Hospital is the national centre for organ transplantation and donation in Norway, and there are 26 local nephrology centres. Participants: 16 donors representing all parts of Norway who donated a kidney in 2001-2004 participated in the study. The interviews were analysed using an interpretative approach. Results: The analysis resulted in 4 main themes; the recipient outcome justified long-term experiences, family dynamics-tension still under the surface, ambivalence-healthy versus the need for regular follow-up, and life must go on. These themes reflect the complexity of live kidney donation, which fluctuated from positive experiences such as pride and feeling privileged to adverse experiences such as altered family relationships or reduced health. Conclusions: Live kidney donors seemed to possess resilient qualities that enabled them to address the long-term consequences of donation. The challenge is to provide more uniform information about long-term consequences. In future research, resilient qualities could be a topic to explore in live donation.
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48.
  • Nilsson, Madeleine, 1964, et al. (författare)
  • Coping in relation to perceived threat of the risk of graft rejection and Health-Related Quality of Life of organ transplant recipients
  • 2013
  • Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 1471-6712 .- 0283-9318. ; 27:4, s. 935-944
  • Tidskriftsartikel (refereegranskat)abstract
    • The most serious risk connected with transplantations besides infection is graft rejection. Organ transplant recipients (OTRs) perceive graft rejection as a stress factor and a threat. The primary aim of the present study was to examine types of coping used to handle the threat of the risk of graft rejection among OTRs and to investigate relations between coping and perceived threat as well as Health-Related Quality of Life (HRQoL). A second aim was to test the General Coping Questionnaire (GCQ) for reliability in relation to the threat of the risk of graft rejection. Three different questionnaires, the Perceived Threat of the Risk of Graft Rejection (PTGR), GCQ and the SF-36, were mailed to 229 OTRs between 19 and 65years old. Patients were transplanted with a kidney, a liver or a heart and/or a lung. All patients with follow-up time of 1year +/- 3months and 3years +/- 3months were included. With an 81% response rate, the study comprised of 185 OTRs. The differences between the transplanted organ groups in their use of coping were small. Likewise, coping related weakly with sex, age, time since transplantation and whether they had experienced graft rejections or not. The respondents tended in general to use more of the positive' coping (strategies related to positive well-being). The measured coping in relation to the perceived threat of the risk of graft rejection seem to be relatively stable over time and quite independent of demographic and clinical variables.
  •  
49.
  • Nilsson, Madeleine, et al. (författare)
  • The perceived threat of the risk for graft rejection and health-related quality of life among organ transplant recipients
  • 2011
  • Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 20:1-2, s. 274-282
  • Tidskriftsartikel (refereegranskat)abstract
    • Aims. This study was primarily aimed for developing and testing a valid and reliable instrument that measures perceived threat of the risk for graft rejection after organ transplantation. A second aim was to report descriptive data regarding graft rejection and Health-Related Quality of Life. Background. The most serious risk connected with transplantations besides infection is graft rejection. Design. Non experimental, descriptive involving instrument development and psychometric assessment. Method. Questionnaires about perceived threat of the risk for graft rejection and Health-Related Quality of Life were mailed to 229 OTRs between 19-65 years old. The items were formed from a previous interview study. Patients were transplanted with a kidney, a liver or a heart and/or a lung. All patients with follow-up time of one year +/- three months and three years +/- three months were included. Results. With an 81% response rate, the study comprised of 185 OTRs, who had received either a kidney (n = 117), a liver (n = 39) or heart or lung (n = 29). Three homogenous factors of perceived threat for graft rejection were revealed, labelled 'intrusive anxiety', 'graft-related threat' and 'lack of control'. Tests of internal consistency showed good item-scale convergent and discriminatory validity. A majority of the OTRs scored low levels for 'intrusive anxiety'. The kidney transplant recipients experienced more 'graft-related threat' by acute graft rejection than those transplanted with a liver, heart or lung. Conclusion. In conclusion, this study suggests that it is possible to measure the perceived threat of the risk for graft rejection in three homogenous factors. Relevance to clinical practice. The instrument perceived threat of the risk for graft rejection, might be usable to measure the impact of fear of graft rejection, to predict needs of pedagogical intervention strategies to reduce fear and to improve Health-Related Quality of Life related to graft rejection.
  •  
50.
  • Nordén, Gunnela, 1945, et al. (författare)
  • Low absolute glomerular filtration rate in the living kidney donor. A risk factor for graft loss
  • 2000
  • Ingår i: Transplantation. - 0041-1337. ; 70:9, s. 1360-2
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: There is no defined lower acceptable level of glomerular filtration rate (GFR) in potential living kidney donors. Considerations focus on the risk for the donor. We wanted to evaluate the outcome in the recipient in relation to the GFR of the living donor. METHODS: There were 344 living donated kidney transplantations performed January 1985 through February 1997 which were evaluated. Two thirds of the donors shared one haplotype with the recipient and 15% shared both. Of the donors 18% were above age 60. The median follow-up time (until graft loss) was 63 months. Before nephrectomy, the donors' GFR had been measured by isotope clearance. RESULTS: Twenty-six donors (7.6%) had an absolute GFR below 80 ml/min, i.e. not adjusted to 1.73 m2 body surface area (BSA). Cumulative graft survival, censored for graft loss because of death of the patient, was significantly reduced in recipients of grafts from donors with GFR <80 ml/min. A significant correlation between GFR and donor age was observed, but donor age per se was not identified as a risk factor for graft loss. In a Cox stepwise proportional hazards analysis, the relative risk for graft loss was 2.28 with a GFR below 80 ml/min (confidence interval 1.183-4.383, P=0.014) and with sharing one or both haplotypes 0.56 (0.313-0.988, P=0.046) and 0.36 (0.139-0.912, P=0.03), respectively. CONCLUSIONS: An absolute GFR below 80 ml/min in the living donor more than doubles the risk of graft loss. This fact should be considered when definitions of acceptable limits for donor GFR are discussed. PMID: 11087153 [PubMed - indexed for MEDLINE]
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