Including the Perspective of the Adolescent in Palliative Care Preferences

Christenson, Kathy; Lybrand, Sandra; Hubbard, Claudia Ricks; Hubble, Rosemary; Ahsens, Leslie; Black, Phil

doi:10.1016/j.pedhc.2009.07.001

“…21 They understand that such endeavors will ultimately help improve not only their own quality of life, 22,52,73 but also that of their family and other AYAs who may be affected by cancer in the years to come. 36,52,53 Researchers must strive to conduct rigorous studies to ultimately improve the palliative-care experience and standard of care for AYAs with cancer.…”

Section: Overview Of the Problems Associated With The Palliative Carementioning

confidence: 99%

Palliative care in adolescents and young adults with cancer

Pritchard

¹

,

Cuvelier

²

,

Harlos

³

et al. 2011

Cancer

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Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities.

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“…4,11 Clinicians must account for the interaction of psychosocial, emotional, physical, and existential issues that AYAs face. The most important tool when communicating with AYAs, especially regarding PC, is honest communication 5,6,11,13 -a style that encourages the normal psychosocial development of AYAs while also acknowledging the abnormality of death at this age. 16 The normal changes of adolescence, including both physical maturation and psychosocial development, are often stunted by illness, especially terminal cancer.…”

Section: Developmental Considerationsmentioning

confidence: 99%

“…To this point, while a 17.9‐year‐old adolescent may not be different in their decision‐making abilities when compared to an 18‐year‐old, they do not hold the sole autonomy for decision making due to their legal age. As such, their families remain involved 1,2,6,7,18 . While younger AYAs (ie, 12‐17‐year olds) need the involvement of parents and siblings, older AYAs (ie, 18‐25‐year olds)may prioritize spouses, significant others, and friends in assisting with decision making.…”

Section: Autonomy and Decision Makingmentioning

confidence: 99%

“…While much medical advancements have occurred in pediatric oncology, challenges in functioning, quality of life, and living with a poor prognosis contribute to symptom burden and suffering within this population 1 . Interdisciplinary palliative care (PC) teams aim to provide specialized care to patients with serious illness, and help their families to improve symptom control, ease suffering, and attend to associated psychological challenges 2–7 . When caring for adolescents and young adults (AYAs) with cancer diagnoses, there are unique considerations given their stage of psychosocial development.…”

Section: Introductionmentioning

confidence: 99%

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Palliative care considerations and practices for adolescents and young adults with cancer

Upshaw

¹

,

Roche

²

,

Gleditsch

³

et al. 2020

Pediatric Blood & Cancer

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The definition of adolescents and young adults (AYAs) in oncology varies with upper limits up to age 39. Younger AYAs, ages 12-24 years, are often cared for within pediatrics. In caring for AYAs with cancer, there are unique considerations that become even more important to recognize, acknowledge, and address in AYAs with lifethreatening cancer receiving palliative care. This review highlights important factors such as psychosocial development, cultural considerations, and support structure, which should be considered when providing palliative care to AYAs with cancer during the various stages of care: introduction of palliative care; symptom management; advanced care planning (ACP); end-of-life (EOL) care; and bereavement. K E Y W O R D S adolescent and young adult, end-of-life care, palliative care, pediatric oncology, support care 1 INTRODUCTION While much medical advancements have occurred in pediatric oncology, challenges in functioning, quality of life, and living with a poor prognosis contribute to symptom burden and suffering within this population. 1 Interdisciplinary palliative care (PC) teams aim to provide specialized care to patients with serious illness, and help their families to improve symptom control, ease suffering, and attend to associated psychological challenges. 2-7 When caring for adolescents and young adults (AYAs) with cancer diagnoses, there are unique considerations given their stage of psychosocial development. In this study, AYA is defined as ages 12-24 years, 8 per the World Health Organization (WHO) definition. While the upper age range of AYAs can be defined as up to 39 years, 9 the intended audience of this study paper is pediatric

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“…Finally, AYA oncology patients are willing to participate in clinical trials regarding palliative or end-of-life care. 21 They understand that such endeavors will ultimately help improve not only their own quality of life, 22 , 52 , 73 but also that of their family and other AYAs who may be affected by cancer in the years to come. 36 , 52 , 53 Researchers must strive to conduct rigorous studies to ultimately improve the palliative-care experience and standard of care for AYAs with cancer.…”

Section: Overview Of the Problems Associated With The Palliative Carementioning

confidence: 99%

Palliative care for adolescents and young adults with cancer

Rosenberg¹,

Wolfe²

2013

COAYA

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Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities.

show abstract

Including the Perspective of the Adolescent in Palliative Care Preferences

Cited by 19 publications

References 5 publications

Palliative care in adolescents and young adults with cancer

Palliative care in adolescents and young adults with cancer

Palliative care considerations and practices for adolescents and young adults with cancer

Palliative care for adolescents and young adults with cancer

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