“The simple life experiences that every other human gets”: Desire for normalcy among adolescents and young adults with advanced cancer

Umaretiya, Puja J.; Fisher, Lauren; Altschuler, Andrea; Kushi, Lawrence H.; Chao, Chun; Vega, Brenda; Rodrigues, Gilda; Josephs, Isabel; Brock, Katharine E.; Buchanan, Susan; Casperson, Mallory; Fasciano, Karen; Kolevska, Tatjana; Lakin, Joshua R.; Lefebvre, Anna; Schwartz, Corey M.; Shalman, Dov; Wall, Catherine B; Wiener, Lori; Bona, Kira; Mack, Jennifer W.

doi:10.1002/pbc.30035

Cited by 5 publications

(6 citation statements)

References 33 publications

(79 reference statements)

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“…AYAs also recognize the tenuousness of advanced cancer, previously described as simultaneously holding hope and despair 28 . Because of a relative lack of life experience and an ongoing development of personal identity, AYAs may struggle with managing uncertainty while prioritizing a sense of normalcy 2,29 . Our findings add that AYAs experiencing cancer a second time may use hopeful thought patterns as a way of coping with an uncertain future 30 .…”

Section: Discussionmentioning

confidence: 61%

“…28 Because of a relative lack of life experience and an ongoing development of personal identity, AYAs may struggle with managing uncertainty while prioritizing a sense of normalcy. 2,29 Our findings add that AYAs experiencing cancer a second time may use hopeful thought patterns as a way of coping with an uncertain future. 30 This is demonstrated by AYAs in our study describing a focus on silver lining of their experiences and living in the present moment.…”

Section: Discussionmentioning

confidence: 66%

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“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

Barton¹,

Steineck

Walsh

et al. 2023

Pediatric Blood & Cancer

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BackgroundIndividuals with advanced cancer face complex challenges, including prognostic uncertainty and evolving goals of care. Despite the unique psychosocial support needs of adolescents and young adults (AYAs), few studies have specifically examined AYA perspectives of and experiences with advanced cancer. The objective of this study was to describe the experience, needs, and perspectives of pediatric AYAs with advanced cancer.ProcedureWe invited English‐speaking AYAs (age 14–25 years) who were receiving treatment for advanced cancer at our single tertiary pediatric cancer center to participate in semi‐structured interviews. We used directed content analysis for codebook development and then applied in‐depth thematic network analysis to describe their perspectives and experiences with advanced cancer.ResultsA total of 32 AYAs (86% of approached) completed interviews. A slight majority were male (59%) and non‐Hispanic White (56%). Most were diagnosed with leukemia/lymphoma, had recurrent disease (84%), and were a mean 53 months from initial diagnosis. Organizing themes of “not being able to beat this,” “not wanting to miss out,” and “living each day” generated the global theme “do I have a future?” “Making tough medical decisions,” “adjusting life/plans/perspectives,” and “decisions about dying” were organized into the global theme “those decisions … were really hard.” “Feeling like there is no one to talk to,” “being away from family and friends,” and “feeling like a burden” generated the global theme “I felt very alone.”ConclusionsPediatric AYAs with advanced cancer describe unique challenges. Psychological support interventions are needed to empower AYAs to navigate difficult decisions and to cope with isolation.

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Section: Discussionmentioning

confidence: 61%

Section: Discussionmentioning

confidence: 66%

“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

Barton¹,

Steineck

Walsh

et al. 2023

Pediatric Blood & Cancer

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“…In addition, the inconsistent cues our participants perceived receiving from their healthcare providers made it more difficult for them to acknowledge the advanced nature of their illness and possibly less capable of accepting the duality of their circumstances. It is common among adults of any age to struggle to live within the dichotomy of double awareness ( Umaretiya et al, 2023 ; Avery et al, 2020a ). However, the inconsistent cues our participants perceived receiving from healthcare providers may be more common among the YA population ( Joad et al, 2022 ).…”

Section: Discussionmentioning

confidence: 99%

Advanced Cancer in Young Adults (YAs): Living in a Liminal Space

Avery,

Campbell,

Mosher

et al. 2023

Qual Health Res

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Young adults (YAs), defined as individuals between the ages of 18 and 39 years, experience unique challenges when diagnosed with advanced cancer. Using the social constructivist grounded theory approach, we aimed to develop a theoretical understanding of how YAs live day to day with their diagnosis. A sample of 25 YAs (aged 22–39 years) with advanced cancer from across Canada participated in semi-structured interviews. Findings illustrate that the YAs described day-to-day life as an oscillating experience swinging between two opposing disease outcomes: (1) hoping for a cure and (2) facing the possibility of premature death. Oscillating between these potential outcomes was characterized as living in a liminal space wherein participants were unsure how to live from one day to the next. The participants oscillated at various rates, with different factors influencing the rate of oscillation, including inconsistent and poor messaging from their oncologists or treatment team, progression or regression of their cancer, and changes in their physical functioning and mental health. These findings provide a theoretical framework for designing interventions to help YAs adapt to their circumstance.

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“…37 The result is that AYAs not only crave (if not envy) normalcy, they may also suffer existentially during and after their cancer treatment. 38 These psychosocial struggles are closely intertwined with communication challenges for AYAs with cancer and their clinician teams. AYAs report receiving unclear prognostic information, struggling to balance hope and risk in the face of their cancer diagnosis, and wanting support when facing their mortality.…”

Section: Aya Pc Needsmentioning

confidence: 99%

“…37 The result is that AYAs not only crave (if not envy) normalcy, they may also suffer existentially during and after their cancer treatment. 38…”

Section: Aya Pc Needsmentioning

confidence: 99%

Palliative Care in Adolescents and Young Adults With Cancer

Johnston,

Rosenberg

2024

JCO

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Palliative care (PC) aims to improve quality of life (QOL) for patients with serious illness and their families by recognizing and alleviating the physical, emotional, social, existential, and spiritual suffering of patients and their communities. Because adolescents and young adults (AYAs, age 15-39 years) with cancer commonly report distress across all these domains and because that distress translates to their QOL during and after their cancers, PC is particularly relevant for this population. Here, we review the evidence for PC among AYAs with cancer, including its rationale, gaps, opportunities, and implications for care delivery. For example, nearly 90% of AYAs with cancer report distressing symptoms during their treatment, those who survive report ongoing unmet psychosocial and physical health needs, and those who die from their cancers are highly likely to receive medically intense care that is discordant with their goals and values. AYA communication and decision making can be challenging because of ethical and developmental considerations regarding the patient's autonomy and competing priorities of patients and caregivers. PC interventions (including primary PC delivered by oncologists, routine PC subspecialty care, symptom tracking, advance care planning, and psychosocial programs promoting AYA resilience) are all associated with improved patient-centered outcomes. However, PC is inconsistently integrated into AYA oncology care, and access to PC programs is not equitable; marginalized groups continue to experience poorer outcomes. Ongoing and future research and clinical initiatives must continue to bridge these gaps. Improving the QOL of AYAs with cancer is a shared goal of the larger clinical oncology community, and including PC in AYA cancer care delivery can help attain that goal.

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“The simple life experiences that every other human gets”: Desire for normalcy among adolescents and young adults with advanced cancer

Cited by 5 publications

References 33 publications

“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

“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

Advanced Cancer in Young Adults (YAs): Living in a Liminal Space

Palliative Care in Adolescents and Young Adults With Cancer

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