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

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.

Perspectives of solid organ transplant recipients on medicine-taking: Systematic review of qualitative studies

“…They struggled with the “larger size” of pills, and the “avalanche of medicines” taken each day 56 . The burden of the medication regimen and sourcing medications caused some to be “exhausted” and “sick of these pills and fed up.” 21‐25,35,50,55,57,71,82,88,95,100,101,109,121,122 In an attempt to make it palatable, one recipient “told [himself] that these pills are like pieces of chocolate.” 53 Those who struggled to adjust to the new routine felt this contributed to unintentional forgetfulness in taking their medication 24,43,56,57,66,68,89,95,109,113,126 …”

“…Adjusting to ongoing dependence on medications Some felt transplantation replaced one life with another different set of rules including the routine and regime of taking medications. 23,40,51,56,66,84,93,95,99,103,[120][121][122][123] Although patients often adjusted to the new medication regimens, some found it difficult to adjust and accept the need to take medications. 19,20,21,29,32,33,52,54,57,60,[65][66][67]70,93,94,96,97,102,118,124,125 They struggled with the "larger size" of pills, and the "avalanche of medicines" taken each day.…”

“…Experience or training in qualitative research20,23,35,37,46,55,57,60,68,72,77,81,87,92,96,101,103,105,114,116,124,125,130,162 Repeat interviews/observations26,29,30,32,36,44,52,65,81,83,88,89,91,93,98,111,114,118,119,121,122,130,167 thought about the side effects until I started coming out in spots. "88 "They told me nothing about side-effects but since the transplantation I've become diabetic and that was through the drugs.…”

Fatigue after heart transplantation – a possible barrier to self‐efficacy

“…This was somewhat surprising based on our clinical experience where HTRs are often viewed as being in a much better position than LuTRs in terms of survival, complications and the risk of graft rejection. However, previous studies in the SMATT project have revealed a tendency for HTRs to experience more pain than LuTRs [ 32 ] and that LuTRs seem to adapt and manage their symptoms faster than HTRs [ 35 , 36 ]. This highlights the importance of exploring the differences between HTRs and LuTRs to deeper the understanding of the struggles in their respective recovery processes.…”

The Meaning of Surviving Three Years after a Heart Transplant—A Transition from Uncertainty to Acceptance through Adaptation

“…Adapting to post-transplant limitations and a changed body is an inherent challenge for HTRs, which is also shown by Lundmark et al [ 24 ] who reported that lung recipients strive to adapt to a new normality by employing strategies such as comparing, accepting and adjusting. There are numerous self-management demands recommended by transplant professionals, e.g., being sufficiently active, adhering to medication and dietary guidelines, protecting oneself from infections and the sun, managing symptoms and mastering one’s role and emotions.…”