Balancing Hope and Risk Among Adolescent and Young Adult Cancer Patients with Late-Stage Cancer: A Qualitative Interview Study

Gray, Marlaine Figueroa; Ludman, Evette; Beatty, Tara; Rosenberg, Abby R.; Wernli, Karen J.

doi:10.1089/jayao.2018.0048

Cited by 35 publications

(19 citation statements)

References 33 publications

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“…Hope in cancer patients was reported by 60 (21.7%) articles. One study identified three main objects of hope for patients with cancer 68 : breakthrough treatments, cures, 69 , 70 and future children or family. 71–74 Hope was shown to predict resilience, 75 , 76 mitigate future distress, 77 and aid recovery.…”

Section: Resultsmentioning

confidence: 99%

Identification of Evidence for Key Positive Psychological Constructs in Pediatric and Adolescent/Young Adult Patients with Cancer: A Scoping Review

Wayant

Manquen

Wendelbo

et al. 2021

Journal of Adolescent and Young Adult Oncology

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Introduction: Children and adolescents/young adults (AYAs) with cancer are a vulnerable population susceptible to numerous late effects, such as fatigue and depression, which may diminish their long-term psychological, physical, spiritual, and emotional health. A well-rounded understanding of how positive psychological constructs affect the quality of care and treatment outcomes is therefore warranted. Methods: We conducted a scoping review of 15 positive psychological constructs in children and AYAs with cancer. The primary research questions were (1) what is known about positive psychological constructs in children and AYAs with cancer; (2) what value is ascribed to these constructs by patients?. Results: Two hundred seventy-six articles were included after database search and screening. These studies were mostly observational or qualitative and conducted in North America. Constructs were often poorly defined, and measurement tools used to gather data were wide ranging. Numerous factors were correlated with increased or decreased expression of certain constructs, but overall themes were difficult to identify. Similarly, patients often spoke of what increased or decreased expression of a construct, with less emphasis on what they implicitly value. Discussion: This scoping review found ample evidence for what increases or decreases expression of positive psychological constructs, but this evidence was observational and often conflicting. In the future, we recommend the development of a core set of psychological outcomes, with definitions and corresponding measurement tools. We further recommend an emphasis on randomized trials to more rigorously study how expression of constructs can be improved and what effect this has on the quality of life.

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Section: Resultsmentioning

confidence: 99%

Identification of Evidence for Key Positive Psychological Constructs in Pediatric and Adolescent/Young Adult Patients with Cancer: A Scoping Review

Wayant

Manquen

Wendelbo

et al. 2021

Journal of Adolescent and Young Adult Oncology

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“…The loss of control over their life and the psychological challenge of anticipatory grief over the life that has not yet been lived might be difficult for AYAs to process ( 10 , 11 , 13 ). Due to the prognostic uncertainty, AYAs are constantly balancing between hope and fear amidst uncertain treatment outcomes ( 14 ).…”

Section: Introductionmentioning

confidence: 99%

“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

et al. 2022

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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.

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“…This oscillation in the time of diagnosis suggests realities and understandings that can be different between the participants included in the study. According to a study (15) carried out in the United States, which sought to understand the perspectives of adolescents and young adults diagnosed with advanced cancer, it was seen that over the time of diagnosis and treatment, they became more resilient with regard to the disease condition experienced (15) .…”

Section: Resultsmentioning

confidence: 99%

“…The participants try to believe that everything will work out and that they will overcome the disease. Some individual factors can contribute to resilience in adolescents, such as: temperament, learning power, emotional stability, ability to control anger, overcome frustrations quickly, positive self-image, confidence, optimism and positive thinking, ability to solve problems, make decisions, resolve conflicts and manage stress, in addition to good social skills, such as assertiveness, showing concern, empathy, and humor (15) .…”

Section: Overcoming the Difficult Phase Of The Diseasementioning

confidence: 99%

Perceptions of adolescents with cancer undergoing palliative care about their illness process

Guimarães

Pacheco

Nunes

et al. 2020

Rev. Gaúcha Enferm.

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ABSTRACT Objective: To understand the perception of adolescents with cancer undergoing palliative cares about their illness process. Method: An exploratory and qualitative study, per formed at a federal public hospital specialized in oncology disease in Rio de Janeiro, through interviews with nine adolescents aged 12 to 20 years old, from July to August 2017. Data was submitted to thematic analysis and the theoretical framework was Hildegard Peplau's Theory of Interpersonal Relationships Results: Three categories emerged: Living the difficult moment of the trajectory of the disease; Feeling the social isolation and that life has stopped; and Overcoming the difficult stage of the disease. They addressed the trajectory of the disease since the diagnosis, with the awakening of feelings of isolation and stagnation of life. Moreover, they highlighted the overcoming power of these adolescents. Final considerations: The study made it possible to know the difficulties experienced during the course of the disease, providing subsidies for the practice of nurses to happen in a sensitive, individualized manner and focused on the individual's need thus enhancing comfort and quality of life.

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Balancing Hope and Risk Among Adolescent and Young Adult Cancer Patients with Late-Stage Cancer: A Qualitative Interview Study

Cited by 35 publications

References 33 publications

Identification of Evidence for Key Positive Psychological Constructs in Pediatric and Adolescent/Young Adult Patients with Cancer: A Scoping Review

Identification of Evidence for Key Positive Psychological Constructs in Pediatric and Adolescent/Young Adult Patients with Cancer: A Scoping Review

“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

Perceptions of adolescents with cancer undergoing palliative care about their illness process

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