Leaving the Experts: Experiences of Liver Transplant Recipients in New Zealand/te Wehe Atu I Nga Tautohito: Nga Wheako O Te Hunga Whiwhi Ate Hou I Aotearoa

Abstract

IntroductionOrthoptic liver transplantation surgery commenced in New Zealand in 1998 (Gane et al., 2002), and is now the treatment of choice for people with end-stage liver failure, with a total of 36 liver transplantations performed in 2015 (Organ Donation New Zealand, 2015). However, there is a scarcity of studies investigating the experiences of liver transplant recipients' recovery - a concept which has only recently started to mean something different from survival. An early Australian study, exploring the experiential issues of one woman, a liver transplant recipient, concluded that although survival had many dimensions, going home did not appear to be one of them (Lumby, 1997). Rather, the subject of this study, Maree, explored the paradox of confronting both "life and death at the same time and doing so as a nurse, a mother, a wife and a daughter" (Lumby, 1997, p. 232),noting that her family appeared to expect that she would resume her previous roles as though there had been no changes. In a study exploring the first five years of the Australian National Liver Transplant Unit, established in 1985, survival was defined as going home, but absent from this study were the perceptions patients held of their experiences from "diagnosis to survival and beyond" (Lumby, 1997, p. 232).Leaving the hospital, and thereby leaving the experts, following a liver transplantation has many unique facets that up to this point in time have not been widely investigated from a patient's perspective. This article reports on the findings of a doctoral research project that sought to understand the experiences of liver transplant patients and the specific aspects that ensue following discharge from a clinical facility. Nurses are pivotal in assisting patients to broaden their view and understanding of liver transplantation recovery, beyond mere survival, to surviving and thriving. They provide essential preparatory information and patient education to assist transplant recipients as they transition from admission through to discharge and on to returning home.Research by Blanch and colleagues (2004) noted that studies have consistently found that a patient's psychosocial or emotional adjustment following a major illness is as important as physical health status. In their study of liver transplant recipients in Spain, they found that gender was the only factor that predicted a poor adjustment. An earlier study in relation to bone marrow transplant had found that women reported higher psychiatric morbidity, more medical problems and were less active (Prieto et al., 1996). In their study, Blanch et al. (2004) found that women demonstrate more dysfunction in their attitude to health care, sexual relationships, extended family relationships and psychological distress. Women seemed to be more impacted by their illness status. The authors hypothesised that this might be because men more readily assume support from their partner, while women are expected to not only care for themselves, but also care for their families. This inequality was reflected in the Spanish benefit and pension arrangements. Men were considered disabled and received state support, but women were expected to resume their family duties (Blanch et al., 2004). While men expected to be cared for by their partners, women might not receive the same care unless they had daughters.Kim and Suh (2003) described the structure of five liver transplant recipients' lives in Korea. Although they identified nine themes, going home did not appear to be a focus of the research. In Jones's (2005) longitudinal study of 20 liver transplant recipients, she too made no specific comments on going home. In contrast to these studies, Forsberg, Backman, and Moller (2000) found that going home, or leaving the experts, was one of seven themes emerging from their analysis of interviews conducted with 12 liver transplant recipients, a year after their transplantation. This theme was evident for both men and women, irrespective of whether they were discharged to a local hospital or returned directly to their own homes. …