What is not, but might be: The disnarrated in parents' stories of their child's cancer treatment

Abstract

The study of illness narratives is based on the premise that stories are told for a reason and storytellers make narrative decisions on what to include and leave out of a story, the style of narration, the place where the story is told and the audience. Through this narrative work, they situate themselves in particular ways and make sense of the illness and the world around them. In this article, we explore the disnarrated, a style of narration that features events that do not happen, but are nonetheless referred to in the story. The aim of the article is to illustrate the additional layers of meaning that can be uncovered from illness stories when attention is paid to what did not happen, but, yet, is still part of the story. We draw from a qualitative study carried out with 17 parents whose children were diagnosed with cancer and were receiving medical care in Argentina. We carried out narrative interviews with the parents and participant-observation in hospital areas and the hotels where they resided during treatment. The analysis of the interview transcripts was carried out using a holistic understanding of the narratives and focusing on the identification of themes that appeared disnarrated. The fieldnotes from the observations were used to contextualize the narrative analysis. The disnarrated, in its many manifestations, produced a layer of analysis of parents' stories of treatment patterned by parents' desires, hopes and fears. The disnarrated was used by parents to discuss alternative care trajectories and express fears regarding what the future would bring for the child and family. The disnarrated is a useful analytical tool for examining illness stories as it points to storytellers' views of what is acceptable or desirable in their world and their hopes and preferences for alternative realities.

The experience of hope in families of children and adolescents living with chronic illness: A thematic synthesis of qualitative studies

“…“ The participants hope that their child will be able to resume his previous way of life and live again in the realm of normality as defined before the illness onset” (Samson et al, , p. 108) . The possibility of living like healthy children and adolescents resides in the achievement of normality: going to school and college, choosing a profession for the future, marrying and having children (De Graves & Aranda, ; Dupas & Angelo, ; Granek et al, ; Hinds & Martin, ; Kylmä & Juvakka, ; Samson et al, ; Vindrola‐Padros & Brage, ).…”

“…For families living with cancer, the ideal future presents a cure, disease remission and full recovery for their ill child (Cornelio et al, ; De Graves & Aranda, ; Granek et al, ; Nicholas et al, ; dos Santos et al, ; Silva, Barros, & Hora, ; Vindrola‐Padros & Brage, ). This spectrum of possibilities is different for families living with other chronic diseases when the cure is not a real possibility.…”

Effectiveness of Psychoeducation Given to Mothers of Children with Cancer

“…[10] Sağlıklı kardeşlerin ihtiyaçlarının ve duygusal zorlanmalarının çoğunun farkında oldukları halde, zamanının ve enerjisinin çoğunu hasta olan çocuğa ayırmak zorunda kalmak, ebeveynlerin anneliğini/babalığını sorgulamalarına ve suçluluk hissetmelerine yol açabilmektedir. [7][8][32][33] Kanser tanısı alan çocuğun ebeveynlerine yönelik psikososyal müdahalelerin genellikle etkili baş etme becerilerinin öğretilmesi, problem çözme becerilerinin geliştirilmesi, hastalığa ilişkin bilgi düzeyinin artırılması ve rahatlama tekniklerinin öğretilmesi gibi içeriklere sahip oldukları görülmektedir. [13][14][15][16][17][18][19][20][21][34][35][36] Bu araştırmada diğer psikososyal müdahalelerden farklı olarak, sağlıklı kardeşlerin deneyimlerinden yola çıkarak annelerin sağlıklı ergen kardeşlerin yaşadıklarına ilişkin farkındalıklarının ve uygulanabilir önerilerle onlara yardım edebileceklerine ilişkin inançlarının artırılması amaçlandı.…”

Social work, cancer survivorship and liminality: meeting the needs of young women diagnosed with early stage breast cancer

“…Uncertainty regarding fertility was ongoing for many of the women, which makes the search to find 'who she is now' even more difficult. As part of the renegotiation of her identity the social worker may focus on the 'disnarrated', that is all of the events that do not happen though they could have (Vindrola-Padros & Brage, 2017, Prince, 1992.…”