Illness, normality and identity: the experience of heart transplant as a young adult

Abstract

The need for support that recognizes specific challenges of transplant as a young adult is discussed (e.g. the development of age specific end of life pathways, improved communication between transplant recipients, their families and teams), including consideration of the impact of societal discourses (e.g. gift of life) which provided additional challenges for patients. IMPLICATIONS FOR REHABILITATION Heart transplant presents specific challenges according to the recipient's life stage. The needs of young adult recipients should be considered. Transplant professionals should consider providing opportunities for peer support and addressing the identities and values of young adult transplant recipients during rehabilitation.

Redefining a ‘new normality’: A hermeneutic phenomenological study of the experiences of patients with chronic heart failure

“…Previous studies have shown that having this possibility gives a sense of accomplishment to patients since it provides value and purpose to their lives, making them feel that they continue to contribute positively to their families and the community (Lewis et al, ; Thornhill, Lyons, Nouwen, & Lip, ). Additionally, coinciding with the results of Lewis et al () and Waldron et al (), the patients in our study noted the importance of maintaining their friendships and usual social relationships and activities and participation in their community. It is important that nurses are aware of the impact this social aspect has on patients’ lives and that they work together with patients, their families, and the community.…”

“…Chronic heart failure (CHF) has been defined as a global pandemic affecting approximately 26 million people worldwide (Ponikowski et al, ). Along with its growing prevalence, what makes this population a priority goal in health and social care is that patients with CHF are immersed in a complex situation substantially affecting their quality of life and general well‐being (Obieglo, Uchmanowicz, Wleklik, Jankowska‐Polańska, & Kuśmierz, ; Walthall, Malpus, Shearing, Sanchez, & Murray, ). In fact, this disease disrupts the normal course of life, causing multiple disorders and changes (Nahlén, Elfstrom, Bjorling, Persson, & Saboonchi, ).…”

“…The gap in the literature is remarkable, since research conducted among patients with other chronic conditions has revealed how the aspects surrounding the normalization of their situation greatly affect patients’ lives. For example, studies have addressed this aspect in patients suffering from cancer (Lewis, Willis, Yee, & Kilbreath, ; Maher & De Vries, ), chronic obstructive pulmonary disease (COPD) (Aasbo, Solbrække, Kristvik, & Werner, ; Fraser, Kee, & Minick, ), HIV (Mazanderani & Paparini, ), physical and visual disabilities (Taghizadeh & Jeppsson, ), diabetes (Mendenhall et al, ), asthma (Protudjer, Kozyrskyj, Becker, & Marchessault, ), diseases of the central and respiratory nervous systems (Peck & Lillibridge, ), rheumatoid arthritis (Sanderson, Calnan, Morris, Richards, & Hewlett, ), intestinal inflammatory diseases (Matini & Ogden, ) and in those undergoing kidney transplantation (Boaz & Morgan, ), and heart transplantation (Waldron et al, ), among others. These studies have shown the importance of understanding the experience of normality due to the strong influence that this perception has on the way patients experience their illnesses.…”

The experiences of adult heart, lung, and heart-lung transplantation recipients: A systematic review of qualitative research evidence

“…The identified themes, all concerning psychosocial aspects and practicalities of organ transplantation, were most efficiently categorised chronologically: Pre-transplant, Transplant, and Post-transplant. Papers from seven studies reported results from all three periods [32][33][34][35][36][37][38][39]; the remainder were concerned with one or two periods only, such as the post-transplant experience [29,30,[40][41][42][43][44][45][46][47] or the time surrounding transplantation [33,37,39,48]. Each chronological period had several sub-themes (often repeated in more than one chronological period and often interconnected), which are described below.…”

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“…"False alarms," where the patient had been called to hospital for a transplant that did not proceed, were reported by participants as provoking uncertainty, frustration, and disappointment [37,47]. Clinic visits could incite the same feelings in those waiting [48].…”