“Finding my way in a maze while the clock is ticking”: The daily life challenges of adolescents and young adults with an uncertain or poor cancer prognosis

Abstract

IntroductionIncreasingly more adolescent and young adult (AYA, aged 18–39 years) patients with an uncertain and/or poor cancer prognosis (UPCP) are gaining life-years because of novel treatments or refinement of established therapies, and sometimes even face the prospect of long-term disease control. This study aims to examine the challenges of AYAs with a UPCP in daily life to inform the development of AYA care programs.MethodsSemi-structured in-depth interviews were conducted among AYAs with a UPCP. Since we expected differences in experiences between three AYA subgroups, we interviewed patients of these subgroups (1): traditional survivors (2), low-grade glioma survivors, and (3) new survivors. Interviews were analyzed using elements of grounded theory. AYA patients were actively involved as research partners.ResultsIn total 46 AYAs with UPCP participated and shared their challenges in daily life. They were on average 33.4 years old (age range 23–44) and most of them were women (63%). The most common tumor types were low-grade gliomas (16), sarcomas (7), breast cancers (6), and lung cancers (6). We identified five primary themes: (1) feeling inferior to previous self and others (e.g. feeling useless, who wants me in a relationship), (2) feeling of being alone (e.g. lonely thoughts, nobody really gets me), (3) ongoing confrontation (e.g. it is always there, own decline), (4) grief about life (e.g. grief about life I did not get, grief about old life), and (5) loss of control over the future (e.g. not able to make future plans, waiting for growth). Although all of the challenges were identified in the three AYA subgroups, the perceived intensity of the challenges differed slightly between the subgroups.DiscussionAYAs living with a UPCP experience challenges associated to their sense of altered identity, their position in the social network, and the future uncertainties. This study highlights the importance to recognize and acknowledge the unique challenges of this group. To provide age-specific care, it is important to embed acceptance and commitment therapy and AYA peer support within the healthcare system and other care programs to support AYAs to live well with their disease.

“I won't get to live my life the way I planned it”: A qualitative analysis of the experiences of adolescents and young adults with advanced cancer

“…In this qualitative study of the pediatric AYA experience with advanced cancer, we found that AYAs remain future‐oriented despite a poor or uncertain prognosis and that AYAs struggle with decisions about treatment and changing plans. Consistent with prior research, we also found that they consider the advanced cancer experience to be isolating, both physically and emotionally, from both peers and family 26 . The present study adds that these themes persist in an era of oncology care where targeted agents and other novel therapeutics draw out the advanced cancer experience.…”

“…Consistent with prior research, we also found that they consider the advanced cancer experience to be isolating, both physically and emotionally, from both peers and family. 26 The present study adds that these themes persist in an era of oncology care where targeted agents and other novel therapeutics draw out the advanced cancer experience. Additionally, our study adds insight into coping strategies AYAs employ to overcome their own challenges via the advice they hope to share with others facing similar circumstances.…”

“Double awareness”—adolescents and young adults coping with an uncertain or poor cancer prognosis: A qualitative study

“…This study presents a secondary analysis, a more detailed description of the methods can be found in Burgers et al (2022) . The Consolidation Criteria for Reporting Qualitative Studies guideline was followed to guarantee quality and transparency of reporting ( Tong et al, 2007 ; Supplementary material 1 ).…”

“…Most AYAs have not yet reached all milestones of an adult life and have less life experience to deal with their uncertain cancer diagnosis ( García-Rueda et al, 2016 ; Bradford et al, 2022 ). A recent study shows that AYAs with a UPCP are confronted with ongoing and unique age-specific challenges, such as feeling inferior to previous self and others, sense of grief about life and not being able to make life plans ( Burgers et al, 2022 ). This forms a tremendous burden and major life disruption for this young vulnerable patient group ( Burgers et al, 2021 , 2022 ).…”

“…A recent study shows that AYAs with a UPCP are confronted with ongoing and unique age-specific challenges, such as feeling inferior to previous self and others, sense of grief about life and not being able to make life plans ( Burgers et al, 2022 ). This forms a tremendous burden and major life disruption for this young vulnerable patient group ( Burgers et al, 2021 , 2022 ). Given the “life-threatening” situation, that will likely not change during the rest of their lives, this group of AYAs must find a way to deal with cancer and its consequences for often a relatively long period.…”