Experiences of adolescents with cancer from diagnosis to post-treatment: a scoping review

Greenblatt, Andrea; Saini, Michael

doi:10.1080/00981389.2019.1640338

Cited by 4 publications

(4 citation statements)

References 44 publications

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“…A growing body of quantitative and qualitative work has considered AYA's experiences of cancer, diagnosis and treatment/care. [2][3][4][5][6][7][8][9][10][11][12][13] That work suggests the experiences and needs of this age group differ both from those of older adults, who comprise the majority of cancer patients/service users, and of younger children.…”

Section: Introductionmentioning

confidence: 99%

Adolescents and young adults’ (AYA) views on their cancer knowledge prior to diagnosis: Findings from a qualitative study involving AYA receiving cancer care

Hart

Cowie

Jesudason

et al. 2020

Health Expectations

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Background Cancer is rare amongst adolescents and young adults (AYA). Previous research has reported (healthy) AYA’s knowledge of risk factors and symptoms as limited, with this potentially leading to delays in help‐seeking and diagnosis. Objectives We explored AYA’s views on their cancer knowledge prior to diagnosis and if/how they perceived this as having affected their experiences of diagnosis and care. Methods We interviewed 18 AYA diagnosed with cancer (aged 16‐24 years). Interviews were recorded and transcribed verbatim. We undertook qualitative descriptive analysis, exploring both a priori topics and emergent themes, including cancer knowledge prior to diagnosis. Results Adolescents and young adults characterized their knowledge of cancer and treatment prior to diagnosis and treatment initiation as limited and superficial. AYA perceived gaps in their knowledge as having profound consequences throughout their cancer journey. These included: hindering recognition of symptoms, thereby delaying help‐seeking; impeding understanding of the significance of tests and referrals; amplifying uncertainty on diagnosis; and affording poor preparation for the harsh realities of treatment. Conclusions Adolescents and young adults perceived their limited cancer knowledge prior to diagnosis as affecting experiences of diagnosis and initial/front‐line care. These findings prompt consideration of whether, when and how, AYA’s knowledge of cancer might be improved. Two broad approaches are discussed: universal education on AYA cancer and/or health; and targeted education (enhanced information and counselling) at and after diagnosis. Patient or Public Contribution Our work was informed throughout by discussions with an advisory group, whose membership included AYA treated for cancer.

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Section: Introductionmentioning

confidence: 99%

Adolescents and young adults’ (AYA) views on their cancer knowledge prior to diagnosis: Findings from a qualitative study involving AYA receiving cancer care

Hart

Cowie

Jesudason

et al. 2020

Health Expectations

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“…The views of adolescents about their cancer experience have already been published. [6][7][8][9][10][11][12][13][14][15][16][17][18][19][20][21][22] However, most of this literature was studies from high-income countries. Moreover, there were no published studies from India expounding on this phenomenon, justifying the conduct of this study.…”

Section: Article In Pressmentioning

confidence: 99%

Experiences of Adolescents with Cancer Attending a Tertiary Care Cancer Centre: A Thematic Analysis

Salins

Muckaden

Ghoshal

et al. 2022

IJPC

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Introduction: Adolescents with cancer experience several psychosocial concerns. Cancer among adolescents contributes to one-fifth of cancers in India. Most of the published empirical literature on adolescents’ views about their cancer experience is from high-income countries. Objectives: The objectives of the study were to explore the experiences of adolescents with cancer in India. Materials and Methods: Twenty-eight adolescents were purposively recruited and participated in prospectively conducted qualitative interviews conducted at the Tata Memorial Hospital, Mumbai, between 2013 and 2015. Interview data were transcribed and analysed using Braun and Clarke’s reflexive thematic analysis. Results: Two themes and several subthemes were generated during the analysis. The transition to the new reality of illness was traumatic. It embodied fear about the unknown, disease and symptoms. The experience was isolating and disfigurement further led to peer separation. Inadequate information made the adolescents anxious and worried, and children and parents experienced moments of severe distress. The love and support received from parents, siblings and extended family facilitated positive coping. Peer support was reassuring and enabled them to have a normalising experience. Discovering their inner strength, acceptance of the situation and faith in God made them resilient and hopeful. Conclusion: Adolescents with cancer experience significant emotional concerns, which are often unexplored and unaddressed. An adolescent-specific communication framework and psychosocial programme contextual to the Indian setting may be developed based on the study findings.

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“…Missing school and classmates can be distressing, especially at a time when peers play an important role in social development and social support. In a scoping review on the importance of the school setting in connecting adolescents with cancer to peers, disruption in peer relationships was a major worry for adolescents on treatment (Greenblatt & Saini, 2019). For many youths with cancer, school attendance is significantly lower during treatment and for some, absences continue even after therapy has been completed (French et al, 2013).…”

Section: Introductionmentioning

confidence: 99%

A Dimensional Analysis of School Connectedness in Adolescents Newly Diagnosed With Cancer

Giugliano

2024

Journal of Pediatric Hematology/Oncology Nursing

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Background: Adolescents newly diagnosed with cancer must navigate medical, psychosocial, and educational issues when confronting this life-threatening illness. Frequent hospitalizations and intense therapy disrupt attendance at school and social events. Research supports that school connectedness is a protective factor associated with improved adolescent health, psychological, and academic outcomes. However, this phenomenon is understudied in adolescents newly diagnosed with cancer. Method: This qualitative inquiry used a dimensional analysis method to uncover the nature of school connectedness in adolescents newly diagnosed with cancer prior to school reentry. Semistructured interviews with 19 adolescents explored school relationships and experiences at the time of cancer diagnosis. Data collection and inductive analysis occurred simultaneously. Results: Analysis revealed four key dimensions: “School Days and Ways,” “The Boom,” “The Pause,” and “Connection Reconciliation: Me, You, and Learning.” Additionally, “Social Scenes,” “Shared Experiences,” and “Seeing and Being With” emerged as subdimensions of “School Days and Ways.” All adolescents in this study described being negatively impacted by the cancer experience with universal disruption in school relationships and diminished school connections. However, the desire to restore unraveled or broken relationships and reconcile connections with self, others from the school, and learning were highly salient. Discussion: This research uncovers the meaning and context of school connectedness prior to and following a cancer diagnosis, illuminating a deeper understanding of the impact of a cancer diagnosis on adolescents, school relationships, and learning. The findings provide direction in supporting adolescents as they confront the physical, psychosocial, and educational disruptions caused by their cancer.

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Experiences of adolescents with cancer from diagnosis to post-treatment: a scoping review

Cited by 4 publications

References 44 publications

Adolescents and young adults’ (AYA) views on their cancer knowledge prior to diagnosis: Findings from a qualitative study involving AYA receiving cancer care

Adolescents and young adults’ (AYA) views on their cancer knowledge prior to diagnosis: Findings from a qualitative study involving AYA receiving cancer care

Experiences of Adolescents with Cancer Attending a Tertiary Care Cancer Centre: A Thematic Analysis

A Dimensional Analysis of School Connectedness in Adolescents Newly Diagnosed With Cancer

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