Recovery, symptoms, and well-being one to five years after lung transplantation - A multi-centre study.

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.

Self-efficacy in the context of heart transplantation - a new perspective.

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.

Recovery after lung transplantation from a patient perspective - proposing a new framework.

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.

Health transition after lung transplantation - a grounded theory study.

AIMS AND OBJECTIVES: To investigate lung recipients' process of transition from prior the transplantation to one year afterwards, as well as what their main concerns are and how they deal with these concerns. BACKGROUND: During the last three decades, lung transplantation has been established as an effective treatment for patients with end-stage pulmonary disease. Towards the end of the 20th century, the concept of survival expanded to also include improving health-related quality of life (HRQoL). Although many studies have been published regarding lung recipients' HRQoL, aspects of health and everyday life remain understudied. Lung transplantation demands some kind of transition. However, very little is known about this transitional process. DESIGN: A qualitative inductive approach using Grounded Theory (GT) was used. METHODS: A total of ten adult males and five adult females (n = 15) with a mean age of 55 years were included in the study and interviewed one year after transplantation. The open-ended interviews were digitally recorded and transcribed verbatim after each interview. The analysis of the material was performed consistent with Charmaz contructivistic approach of GT. RESULTS: The core category Reconstructing daily occupations summarises a process wherein the generated GT is present through four main categories: Restricting, Regaining, Reorganising and Enriching. The process of reconstructing daily occupations is necessary to regain health. CONCLUSIONS: A trajectory of health transition is evident, starting pretransplant with the lung disease and severe illness and proceeding at least up to one year after the transplantation with experienced health. RELEVANCE TO CLINICAL PRACTICE: The result enables a unique possibility to enhance the lung recipients' striving for everyday life and thereby promote health. There is a need for change in the existing multidisciplinary transplant team to also include an occupational therapist to support and guide the lung recipients in changing their occupational patterns.

Developing a Grounded Theory on Adaptation After Lung Transplantation From Intermediate-Term Patient Experiences.

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.

The Meaning of Being a Living Kidney, Liver, or Stem Cell Donor-A Meta-Ethnography.

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 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 and 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 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. CONCLUSIONS: 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.

The meaning of being in uncertainty after heart transplantation - an unrevealed source to distress.

BACKGROUND: 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. AIM: An in-depth exploration of the meaning of uncertainty during the first year after a heart transplantation (HTX). METHOD: 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). RESULTS: 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. CONCLUSION: 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.