The Lived Experiences With Hope From Adolescents and Young Adults Who Have Advanced Cancer

Bennett, Claire; Coats, Heather; Hendricks-Ferguson, Verna L.; Gauthier, Kristine; Sousa, Karen H.

doi:10.1016/j.jpainsymman.2021.11.016

Cited by 9 publications

(9 citation statements)

References 30 publications

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“…Four main themes emerged from the narrative analyses in the larger study (Bennett, 2021a); Light for Moving Forward, Simple Supports of Hope, Hope as a Motivational Source, and Transitions of Hope. A board-certified art therapist (LG) experienced with AYAs who have cancer and had no knowledge of themes derived in the larger study independently performed a secondary post hoc thematic analysis of participants' drawings and verbatim descriptions of their meanings.…”

Section: Discussionmentioning

confidence: 99%

“…Semistructured interviews engaged participants in a unique experience as content experts about their lived experiences with hope (Doyle et al, 2020). The results of this study were derived from a larger qualitative research study (Bennett, 2021a) that aimed to conceptualize hope based on the lived experiences of AYAs who have AC and illustrate how hope evolves through participants' verbal and artistic depictions of their lived experiences with hope.…”

Section: Methodsmentioning

confidence: 99%

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Art Unfolds Words: Expressing Hope Through Creative Art Among Adolescents and Young Adults Who Have Advanced Cancer

Bennett

Raybin

Glinzak

et al. 2023

Journal of Pediatric Hematology/Oncology Nursing

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Hope's role in the care of adolescents and young adults (AYAs) who have advanced cancer (AC) is not well understood. This study aimed to conceptualize the essence of hope among AYAs who have AC based on their lived experiences and illustrate hope through verbal and artistic depictions of the AYA's lived experiences. Fifteen AYAs, aged 12 to 21 years, diagnosed with AC completed two semistructured interviews to share their lived experiences of hope perspectives in the form of a descriptive narrative and a creative-art outcome. Participants who chose to draw pictures narrated the conceptual meanings based on elements of each picture. A board-certified art therapist performed a post hoc analysis of the drawings and participants’ verbatim descriptions of their meanings. Five of the 15 AYA participants created drawings depicting their lived experiences of hope. The artistic process of mapping their cancer journey revealed distinct views of hope through nature landscapes and metaphors. Participants provided titles for their drawings such as “Over the Rainbow,” “Growth in the Valley,” and “The Light at the End of the Tunnel.” The pictures embodied the AYAs’ thoughts, perceptions, and lived experiences related to hope and its role during their cancer journey. Drawing is one simple art form that can facilitate an AYA's expression of well-being (including hope) beyond what may be verbally articulated. Creative art should be further researched as a screening tool to assess how AYAs with AC cope with an uncertain future and psychological and/or existential distress symptoms.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Art Unfolds Words: Expressing Hope Through Creative Art Among Adolescents and Young Adults Who Have Advanced Cancer

Bennett

Raybin

Glinzak

et al. 2023

Journal of Pediatric Hematology/Oncology Nursing

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“…For AYAs facing relapsed or refractory cancer, prior experiences seem to build hope that they may overcome these challenges again. 27 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.…”

Section: Discussionmentioning

confidence: 99%

“…Prior experiences shape our expectation of current circumstances. For AYAs facing relapsed or refractory cancer, prior experiences seem to build hope that they may overcome these challenges again 27 . AYAs also recognize the tenuousness of advanced cancer, previously described as simultaneously holding hope and despair 28 .…”

Section: Discussionmentioning

confidence: 99%

“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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“…In a systematic review by Sisk, Harvey, et al (2022), Sisk, Keenan, et al (2022) it is suggested that for the improvement in communication between healthcare professionals and children and their families in pediatric oncology, there needs to be a greater identification of barriers and facilitators to communication and the development of interventions to ease the communication. Furthermore, upon reviewing the literature in the field of pediatric oncology, qualitative studies have utilized the method of photovoice to visually convey meanings, ideas, and experiences that are not easily communicated through words (Arora et al, 2021; Bennett et al, 2023; Donovan et al, 2022; Ebrahimpour et al, 2021; Kim et al, 2021). This method is noted to be particularly supportive in exploring sensitive topics, as it adds an extra layer of richness and depth to verbal responses from participants.…”

Section: Introductionmentioning

confidence: 99%

Realities and ideals: Experiences and needs of pediatric oncology nurses in communication processes with children and their families at the end‐of‐life period: A photovoice qualitative study

Özdemir Koyu,

Algül,

Kilicarslan Törüner

2023

Nursing & Health Sciences

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Effective communication in end‐of‐life care for pediatric cancer patients is crucial. Yet, limited research focuses on the communication experiences of pediatric oncology nurses during this period. This study aims to investigate the communication experiences and needs of these nurses with children and their families during the end‐of‐life period. A qualitative study design with photo voice methodology was followed. The research was conducted with 16 pediatric oncology nurses working in the pediatric oncology wards of a university hospital between January and May 2023. Data were collected the “Characteristic Information Form”, “Semi‐Structured Interview Form”, and photovoice methodology. Data were analyzed through reflexive thematic analysis. Most of the nurses are at the undergraduate level, and their working experience in pediatric oncology wards ranges from 4 months to 17 years. Seven main themes emerged: Optimistic Communication‐Interaction, Mindfulness, Active Coping, Behavioral Actions, Death Uncertainty Dilemma, Interpersonal and Environmental Factors, and Discrepancy between Ideals and Reality. The study sheds light on the importance of pediatric oncology nurses' ideals versus realities upstream approach in communicating with end‐of‐life children and their families, empowering pediatric oncology nurses on the journey to ideal end‐of‐life care.

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The Lived Experiences With Hope From Adolescents and Young Adults Who Have Advanced Cancer

Cited by 9 publications

References 30 publications

Art Unfolds Words: Expressing Hope Through Creative Art Among Adolescents and Young Adults Who Have Advanced Cancer

Art Unfolds Words: Expressing Hope Through Creative Art Among Adolescents and Young Adults Who Have 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

Realities and ideals: Experiences and needs of pediatric oncology nurses in communication processes with children and their families at the end‐of‐life period: A photovoice qualitative study

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