Listening through Narratives: Using a Narrative Approach When Discussing Fertility Preservation Options with Young Cancer Patients

Abstract

Despite clinical practice guideline recommendations mandating that fertility preservation be discussed with young cancer patients, many providers fail to initiate such discussions with adolescents. Researchers and clinicians often focus on system-level changes to improve access to fertility preservation for adolescents and young adults in Canada. However, little of the available information considers the way in which health care providers approach those discussions.Research has shown that, even when fertility preservation options are broached with adolescents, survivors often report dissatisfaction with those conversations, thus raising additional concerns about their content and quality. Here, we consider how a narrative approach-and the Frank narrative typology in particular-could improve the quality of such conversations by helping providers to more accurately and thoughtfully respond to the needs of adolescent patients when discussing the possibility of fertility preservation. Based on findings from a qualitative research project, we provide concrete suggestions for how to more sensitively approach fertility preservation conversations with male adolescent cancer patients and survivors.

Ways of understanding the ability to have children among young adult survivors of childhood cancer — A phenomenographic study

“…If their understanding is not in parity with the cancer treatment's impact on fertility, the survivor should receive information about this in a sensitive manner. This suggestion is in line with results from another qualitative study which point out that using narratives help professionals to better understand an adolescent's perception of their fertility (Roher et al, 2017). Information is most probably a key factor to reduce anxiety and worries about fertility (Jacobs and Pucci, 2013), but it requires a lot of psychological support and therefore referral to psychooncology units or other support services may be needed for those who have difficulties in dealing with confirmed or unconfirmed infertility.…”

“…The risk of infertility among childhood cancer survivors is associated with increased psychosocial distress (Schmidt et al, 2014) such as depression (Gorman et al, 2014), sexual dysfunction (Jacobs and Pucci, 2013), relationship problems (Crawshaw, 2013;Dryden et al, 2014), females feeling unfeminine (Dryden et al, 2014) and males experiencing reduced masculinity (Crawshaw, 2013). However, many childhood cancer survivors receive little or no information about fertility issues (Lehmann et al, 2017(Lehmann et al, , 2018Salih et al, 2015) and if they do get information survivors often report dissatisfaction with such conversations (Roher et al, 2017). More knowledge is needed as to what can help healthcare personnel when they conduct a conversation about fertility issues with adult childhood cancer survivors, who often have not even contemplated becoming a parent.…”

Exploring illness identity among children and youth living with cancer: A narrative review

“…Narrative medicine is a medical practice that recognizes, integrates, and addresses the “stories and plight of others” 45 (p.11). It offers communicative and therapeutic benefits for patients as they navigate their medical and illness journeys 45 . In the past, scholars such as Woodgate 46 have noted how approaches that integrate the stories of children and families were specifically lacking within the realm of pediatric cancer research.…”

“…In the past, scholars such as Woodgate 46 have noted how approaches that integrate the stories of children and families were specifically lacking within the realm of pediatric cancer research. However, narrative methodologies have recently grown in popularity within the field 45,47,48 and the research by Slocum et al 23 . is a testament to this.…”

Illness Narratives Through the Eyes of Parents of Children With End-Stage Renal Disease

“…While chaos and quest narratives appear in most stories and have been adopted by researchers (Bally et al, 2014; De Clercq et al, 2017; Diver et al, 2013; Ezzy, 2000; France et al, 2013; Nosek et al, 2012; Rimmon-Kenan, 2002; Roher et al, 2017; Sparkes & Smith, 2002, 2008), the restitution narrative has, nonetheless, been criticized for representing the voice of medicine and not the voice of the patients (see Thomas-MacLean, 2004). Restitution stories reflect the biomedical culture of western societies which is modeled on machinery: a machine breaks, it is repaired and then reassembled.…”