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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. (Less)

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. (Less)

Purpose Perceived Threat of the Risk of Graft Rejection (PTRGR) is prominent in organ transplant recipients’ lives. When asked about what they fear most, the commonest response is graft rejection. A reasonable assumption is that this perceived threat is also relevant for heart recipients and involves various psychological reactions, such as efforts to cope with the perceived threat. There are no published data on heart recipients’ PTRGR. Therefore, the aim of the present study was to explore the perceived threat of the risk of graft rejection and its relationship to psychological general well-being and self-efficacy one to five years after heart transplantation. Methods A total of 79 heart recipients due for their yearly follow-up one to fiveyears after heart transplantation were included. The key instrument used was the Perceived Threat of the Risk of Graft Rejection (PTGR) covering three factors. The meaning of the first factor, graft-related threat (GRT), is a perception that the primary disease will return, leaving one as ill as before the transplantation and facing re-transplantation. The second factor, intrusive anxiety (IA), means being constantly aware of the risk of graft rejection and thinking about it all the time. It also means experiencing great anxiety, which is elevated when taking immunosuppressive medication or undergoing a biopsy. Finally, the third factor, lack of control (LOC), involves perceptions that the threat of the risk of graft rejection is beyond one's control, revealing the degree of belief that one can control and protect oneself from the threat. Additional instruments used were the Psychological General Well-being (PGWB) and Self-efficacy in chronic illness. Results Heart recipients younger than 50 years reported more graft related threat than those older than 50 years. Further, those who had experienced one or more graft rejection reported less graft related threat. Patients with good psychological well-being reported both less intrusive anxiety and higher control than those with poor psychological well-being. Conclusion Fear of graft rejection, especially intrusive anxiety seems related to psychological general well-being after heart transplantation. Successful experience from graft rejection might reduce the graft related threat.

Purpose The knowledge is scarce regarding how recovery and well-being after lung transplantation is affected by various symptoms. Thus, little is known about self-management support for these recipients. Since fatigue is a symptom that severely impair well-being, the aim of this study was to explore associations between fatigue and influencing factors as perceived self-efficacy, social and psychological well-being, and recovery. Methods Cross-sectional, multi-center cohort study. Lung recipients (n=117) due for an annual follow-up one to five years after transplantation were screened with The Multidimensional Fatigue Inventory-20, Self-Efficacy for Managing Chronic Disease scale, Postoperative Recovery Profile questionnaire and the Organ Transplant Symptom and Well-being Instrument. Results Totally, 56% reported high general fatigue regardless of follow-up time. Regardless of time after transplantation patients reported high levels of fatigue. Lung recipients at the four-year follow-up reported most severe fatigue in all dimensions except for mental fatigue. There was no relationship between lung function (FEV1) and any of the five dimensions of fatigue. There was a weak relationship between mental fatigue and the grade of Bronchiolitis obliterans syndrome (rs-.202*). A strong negative correlation (range -.66- -.73; p Conclusion A high level of fatigue is related to impaired self-efficacy causing a risk of impaired self-management ability and an increased demand for self-management support. Self-perceived recovery might be a matter of the lung recipient's experienced fatigue. Fatigue should be a preferred target of interventions in clinical practice due to its association to self-efficacy and recovery.

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&ndash, 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 na&iuml, ve 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.

BackgroundCellular 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.AimThe 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.MethodsIn 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.ResultsTwenty-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.ConclusionA 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.

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. (Less)

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.

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.To investigate the main concerns associated with social function after SOT and how solid organ transplant recipients (SOTRs) deal with these concerns.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.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.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.

The aim of this study was to investigate the meaning of social adaptation among solid organ transplant recipients one year after transplantation. We analysed in-depth interviews from 16 solid organ transplant recipients by means of phenomenological hermeneutics. The informants comprised 11 men and five women with a mean age of 54 years, who had received a kidney, a liver or a heart. We found the organ recipients adjusted their everyday life in order to adapt socially and achieve a normal everyday life. The meaning of social adaptation comprised six main themes revealed by one structural analysis: being restricted, changing habits, re-evaluating one’s body image, redesigning life expectations and life goals, enjoying and expanding the social network and being disappointed in others. We conclude that the core meaning of social adaptation is living a normal life. Social support can be emotional or instrumental and is highly valued when it helps the organ recipient to adapt and achieve normality.

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.

Aim: To explore the perceived threat of the risk of graft rejection and its relationship to psychological general well-being and self-efficacy 1–5 years 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 5 years (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 (β = −497; p ≤ 0.001) unique contribution to the overall psychological general well-being (95%CI 3.004—1.515). (Less)

Background People's experiences of living with assisted peritoneal dialysis (aPD) have not been studied previously. Assisted PD is successfully used as renal replacement therapy for elderly and disabled patients with end-stage renal disease. To be treated with aPD implies being dependent on lifelong treatment at home. The aim of this study was to explore adults’ experiences of living with aPD. Methods In-depth interviews were conducted with 10 participants with aPD, median age 82.5 years. The text was analyzed using a phenomenological-hermeneutical method. Results The participants experienced limitations and an uncertain future, but through different strategies and participation in healthcare, they could still enjoy what was important in life for them. The analysis of the text resulted in 4 main themes; 1) Facing new demands, 2) Managing daily life, 3) Partnership in care, and 4) Experiencing a meaningful life, leading to the comprehensive understanding: ‘Striving for maintaining wellbeing’. Conclusion The participants expressed that they experienced a good quality of life despite being physically frail, severely ill, and in need of home-based lifesaving treatment. The findings suggest that aPD should be available everywhere where PD is offered. Integrating the model of person-centered care may greatly improve the care for persons living with aPD.

Anonymity of donors or recipients in living-donor transplantation is a complex issue and practice varies widely. There are compelling arguments for maintaining anonymity of both parties before unspecified donor transplantation and specified indirect transplantation. After transplantation, there are still good reasons to avoid disclosure of identities. Although anonymity could be lifted if both parties explicitly request it, there are significant, potentially negative consequences of such an approach. Both donor and recipient should be counseled regarding these, and transplant teams should consider the considerable financial and psychosocial costs if problems are encountered as a result of contact. Given the recent rise in the number of unspecified living-donor transplants and through paired exchange schemes, it is vital that data are collected regarding the effects of maintaining or revoking anonymity after transplantation.

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. ispartof: Transplant International vol:26 issue:2 pages:145-53 ispartof: location:Switzerland status: published

AIMS AND OBJECTIVES: An in-depth exploration of self-efficacy among heart transplant recipients by means of Bandura's self-efficacy theory.BACKGROUND: 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.DESIGN: A directed content analysis using Bandura's self-efficacy theory.METHODS: Open-ended, in-depth interviews were conducted with 14 heart transplant recipients at their 12-month follow-up after heart transplantation.RESULTS: 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.CONCLUSIONS: 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.RELEVANCE TO CLINICAL PRACTICE: 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.

AIMS: The aims of this study were two-fold: to develop the concept analysis by Allvin et al. 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. (Less)