The adult survivors of childhood liver transplant
Professor Karen Lowton
This study sought to understand how adult life was experienced by the first, pioneering, cohort of childhood liver transplant recipients in the UK. We conducted in-depth interviews with adults who had their first liver-only transplant between 1984-1994 (aged 13 or younger at the time) and also with retired or practising clinicians.
This project raised many ethical issues requiring us to formulate plans in advance of data collection. We had a flexible research design that allowed us to respond to unanticipated ethical issues, for example identifying and approaching participants; interviewing relevant clinicians; ensuring confidentiality; and communicating our findings to a broad audience.
We followed the British Sociological Association’s Statement of Ethical Practice (external website) and the Social Policy Association’s Guidelines on Research Ethics (external website). Potential participants were identified by Liver Unit staff in two NHS hospitals we needed both NHS Research Ethics and NHS management (R&D) approval. Our letter of introduction and invitation which was sent to the participants by their hospital staff stressing that the research team would not know anything about them until they indicated that they would like to know more about the study. We were interested in hearing patients’ stories rather than checking any medical information. We did not therefore seek NHS and patient permission to access patients’ medical information.
The study aimed at asking participants about potentially very sensitive and distressing issues, therefore each prospective participant was sent a topic guide, set out as a list of possible questions, together with a letter of invitation and information sheet. We encouraged them to consider any issues they wanted to discuss.
We explained that we did not have any connections with clinical care; we would not be able to answer any clinical questions; we would not discuss information about any patient participant with clinical staff and that patients should contact their clinical team if they had any health concerns.
The UK Data Service (UKDS) waived our obligation to deposit the interview data because it was not possible to anonymise the NHS organisations and as the participants were recruited from a small population, the risk of their identification was high.
We were mindful that participants (patients and clinicians) should not know who else took part in our study, unless they themselves chose to disclose this. Participating patients, however, expressed interest in meeting other now-adult recipients, so we hosted a private lunch for them to meet each other.
Many patient participants were interested in sharing their story, despite this meaning that they would reveal themselves as a liver transplant recipient. We worked with NHS Choices to make a series of short films; ensuring informed consent was given. We also worked with a respected health journalist to ensure national media covered their story responsibly.
Despite this being a very sensitive area, participants were keen to tell their story and interviews were neither stopped, nor subsequent data withdrawn. We are aware that potentially only participants who evaluated their experience positively may have agreed to participate; there may be an ‘untold’ story for those who feel their lives have been very difficult and for those who did not survive the transplant.
Although our study focused on the recipients of transplant and clinicians, we were initially unaware of the extent to which parents of these transplant recipients were still affected by what had happened 20-30 years earlier. Collecting their stories was not part of our research, but we were mindful of acknowledging their experiences and their need to talk about the emotions they continue to feel.
We also found that we were unprepared for the question of whether and how to maintain confidentiality of participants in different situations after formal participation in the study had ended. There is a need to be flexible within this dynamic situation, and to be aware that some participants do not want to keep their involvement in research, or their stories, confidential.