Inquiries of discomfort: Cancer experiences in young adulthood

Abstract

Young adults with cancer are regarded as an emerging field for research. Because of the particular life phase they are in they are particularly vulnerable, as they are often both marginalised and individualised and their experiences are seldom described due to their small numbers. By using an on-line free association narrative inquiry and an experimental writing format, the purpose of this paper is to explore the subjective perspective of what it means to be a young adult living with cancer, and to discuss whether this approach contributes something new to the emerging field. Seven condensed poetic products emerged from the analysis: 1) It came from nothing, 2) It sets off a chain reaction, 3) Being a bit into adult life, 4) No one shares your experiences, 5) Go on with your life, 6) My new me and 7) Maybe the lucky ones die? The results empirically support the emerging body of research regarding young adults with cancer. They stress the need for more specific research, clinically and politically appropriate services to this group of cancer patients. Thanks to technology, young people living with cancer, now have an opportunity to actively participate in providing information regarding their subjective experiences. This will challenge the traditional hierarchy of knowledge, where healthcare professionals and researchers reign over the power of knowledge and decisions.

Meeting Reality

“…34,39 The unexpected apparent mismatch that the informants experienced was highly correlated with late effects. 25,27 This proposition is confirmed by Hølge-Hazelton, 50 as one of her main findings of discomfort in young adult cancer survivors is that no one shares their experiences. This finding highlights the possible interactions between late effects and clusters of symptoms rather than single symptoms.…”

Sexual and romantic challenges among young Danes diagnosed with cancer: Results from a cross‐sectional nationwide questionnaire study

“…Correspondingly, a survey among American oncologists revealed that less than half believed that AYA patients needed counselling on sexuality/intimacy/body image disturbances . Several studies have emphasized that young cancer patients request a direct, frank, and honest dialogue with health providers about all dimensions of their disease . However, sexuality still seems to be a taboo in youth oncology, as is also the case for health maintenance visits aimed at young people in general …”

“Teško mi je palo odvajanje od obitelji, društva i škole. Nedostajao mi je moj dom.” – “preživjeti” malignu bolest iz perspektive izliječenih mladih osoba

“…Liječenje uključuje zahtjevan medicinski tretman tijekom kojeg su i djeca i roditelji izloženi višestrukom i sveprisutnom stresu (Pai i sur., 2007), a po završetku aktivnog liječenja suočavaju se s kompleksnim rehabilitacijskim zadacima (Elad, Yagil, Cohen i Meller, 2003). Zbog specifične razvojne dobi u kojoj se nalaze, prisutan je povećan empirijski interes za iskustvo oboljenja od maligne bolesti iz perspektive preživjelih mladih (Hølge-Hazelton, 2011). Istraživačka pitanja oblikuju se oko teme identiteta (Jones, Parker-Raley i Barczyk, 2011;Madan-Swain i sur., 2000), psihosocijalnih potreba (Keegan i sur., 2012;Beerbower, 2018), psihosocijalnih posljedica oboljenja (Bellizzi i sur., 2012;Mattsson, Lindgren i Von Essen, 2008), kvalitete života (Castellano i sur., 2013;Klassen, Anthony, Khan, Sung i Klaassen, 2011), zdravstvenog statusa (Tai i sur., 2012;Oeffinger i sur., 2004), posttraumatskog rasta (Tobin i sur., 2018; pozitivne koje mladi prepoznaju kroz povećanu zrelost i osobnu snagu te angažman u organizacijama civilnog društva koje se bave vršnjačkom podrškom oboljelima.…”

“…Given the specific developmental phase during which the disease has occurred, there is an increased interest in examining empirical data in order to understand the experience of children suffering from a malignant disease, especially from the perspective of those who have been cured (Hølge-Hazelton, 2011). Previous studies have addressed the theme of identity (Jones, Parker-Raley and Barczyk, 2011;Madan-Swain et al, 2000), psychosocial needs (Keegan et al, 2012;Beerbower, 2018), psychosocial consequences of falling ill (Mattsson, Lindgren and Von Essen, 2008;Bellizzi et al, 2012), quality of life (Klassen, Anthony, Khan, Sung and Klaassen, 2011;Castellano et al, 2013), health status (Oeffinger et al, 2004;Tai et al, 2012), post-traumatic growth (Turner-Turner-Sack, Menna i Setchell, 2012), zdravstvene skrbi tijekom i nakon aktivnog tretmana liječenja (Berg, Stratton, Esiashvili i Mertens, 2016;Earle, Davies, Greenfield, Ross i Eiser, 2005) i sl.…”