Lost and stranded: the experience of younger adults with advanced cancer

Knox, Matthew K.; Hales, Sarah; Nissim, Rinat; Jung, Judy; Lo, Christopher; Zimmermann, Camilla; Rodin, Gary

doi:10.1007/s00520-016-3415-8

Cited by 38 publications

(63 citation statements)

References 29 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…99,100 A Canadian interview study among AYAs aged 18 to 35 years with advanced cancer showed that patients experience their diagnosis as isolating (eg, feeling misunderstood or alienated) and unexpected (eg, cancer is a disease of older adults) and feel forcefully removed from the normal life trajectory. 101 In an American interview study, AYAs (20-40 years) reported anticipatory grief over their lives that have not yet been lived, 102 a psychological state that may be difficult for AYAs to process; they may be reluctant to face the irreversibility and progression of their disease. 102 This may lead to delays in the receipt of appropriate palliative and end-of-life care.…”

Section: End-of-life Challengesmentioning

confidence: 99%

Psychosocial challenges and health-related quality of life of adolescents and young adults with hematologic malignancies

Husson

Huijgens

Graaf

2018

Blood

View full text Add to dashboard Cite

Adolescents and young adults (AYAs) occupy a unique place within the hematologic malignancy community due to the challenges they face related to their disease biology and physical, psychosocial, and economic circumstances, as well as issues related to access to care and long-term follow-up. Efforts to define age-specific (supportive) care needs and targets for intervention in these areas are evolving. This review discusses the psychosocial issues AYAs with hematologic malignancies are dealing with, how these might affect their health-related quality of life, and the challenges in delivering high-quality supportive care to this underserved population.

show abstract

Section: End-of-life Challengesmentioning

confidence: 99%

Psychosocial challenges and health-related quality of life of adolescents and young adults with hematologic malignancies

Husson

Huijgens

Graaf

2018

Blood

View full text Add to dashboard Cite

show abstract

“…AYA with terminal and life-threatening illnesses may be extre-mely conscious of losing out on the adulthood their peers are approaching and never being able to achieve adult status, independence, and autonomy themselves (Davies et al, 2015;Greydanus, 2016). AYA who receive a terminal diagnosis have to grieve the loss of the future they have envisioned for themselves, as well as the future that friends and families expect for them (Knox et al, 2017). Common rite of passage milestones for AYA, such as going away to college, often are unobtainable for AYA with a life-threatening or terminal illness, yet the youth watch their healthy peers reaching these milestones knowing they cannot (Knox et al, 2017).…”

Section: Adjusted Developmental Tasks and Identity Formationmentioning

confidence: 99%

“…AYA who receive a terminal diagnosis have to grieve the loss of the future they have envisioned for themselves, as well as the future that friends and families expect for them (Knox et al, 2017). Common rite of passage milestones for AYA, such as going away to college, often are unobtainable for AYA with a life-threatening or terminal illness, yet the youth watch their healthy peers reaching these milestones knowing they cannot (Knox et al, 2017).…”

Section: Adjusted Developmental Tasks and Identity Formationmentioning

confidence: 99%

“…Coping skills, in regards to painful physical and psychological symptoms, are vitally important. Psychotherapy that introduces AYAs to creative and nonpharmacological coping skills, such as guided imagery, massage, and expressive arts tend to be effective (Jones et al, 2006;Knapp et al, 2010;Knox et al, 2017;Pritchard et al, 2011).…”

Section: Psychological Needsmentioning

confidence: 99%

“…Social interaction and peer relationships are extremely important to AYA (Bates & Kearney, 2015;Knox et al, 2017). AYA with life-threatening illnesses frequently experience severe social isolation because their disease and sometimes embarrassing symptoms, prevents them from making new friends and sustaining previous friendships (Carter, Qualter, & Dix, 2015).…”

Section: Social Needsmentioning

confidence: 99%

See 2 more Smart Citations

Bio-psycho-social-spiritual needs of adolescents and young adults with life-threatening illnesses: Implications for social work practice

Beerbower

Winters

Kondrat

2018

Social Work in Health Care

View full text Add to dashboard Cite

This paper explores the biopsychosocial and spiritual needs of adolescents and young adults (AYA) with life-threatening or terminal illnesses. AYA are situated between childhood and adulthood (ages 15-25) and have distinct biopsychosocial and spiritual needs unique to their developmental stage. Having a life-threatening or terminal illness directly challenges normal AYA developmental tasks and identity formation. AYA experience more troubling physical symptoms during the dying process compared to other age groups, which leads to significant psychological distress and an increased need for pharmacological treatments. In general, AYA desire to be fully informed and involved in the health care decision-making process, leading to ethical dilemmas when the AYA is a minor and their wishes differ from the wishes of their legal guardian(s). Social workers are especially well-equipped to serve this population due to aligning professional standards and ability to advocate for holistic care within interdisciplinary teams. Additional research is needed to tailor holistic interventions to meet the needs of this population.

show abstract

Social isolation and social connectedness among young adult cancer survivors: A systematic review

Fox,

Armstrong,

Gaumond

et al. 2023

Cancer

View full text Add to dashboard Cite

BackgroundSocial isolation and connectedness are social determinants of health that have demonstrated effects on cancer‐related outcomes. These constructs have been systematically evaluated among pediatric and older adult cancer populations. In this review, the authors evaluated the prevalence, correlates, and psychosocial implications of social isolation and connectedness among young adult (YA) cancer survivors aged 18–39 years.MethodsPeer‐reviewed articles published in English before June 2021 were identified from database searches and included articles' reference lists according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta‐Analyses) guidelines. Included articles described studies that assessed social isolation and/or connectedness among YA cancer survivors.ResultsIn total, 5094 unique records were identified; 4143 were excluded after title/abstract screening, and 907 were excluded after full‐text review. Forty‐four articles were included. Few studies used validated measures or directly assessed social isolation or connectedness. Social isolation was similarly prevalent among YAs and older cancer survivors and noncancer populations. Demographic, clinical, and behavioral risk and protective factors for social isolation were identified. Social isolation was related to worse psychological well‐being, whereas social connectedness was often, but not always, related to better psychological well‐being.ConclusionsThis growing literature underscores the relevance of social isolation and connectedness as important health determinants among YA cancer survivors. The identified risk and protective factors can identify YAs who especially may benefit from screening for social isolation. Future studies are needed that directly, reliably, and validly evaluate social isolation and connectedness to inform the development of interventions to decrease isolation and increase connectedness.

show abstract

Lost and stranded: the experience of younger adults with advanced cancer

Abstract: Advanced cancer in younger adults was perceived by them as isolating and as interfering with age-appropriate developmental tasks. Creative and flexible psychosocial support programs are needed to engage this population with limited expected survival.

Cited by 38 publications

References 29 publications

Psychosocial challenges and health-related quality of life of adolescents and young adults with hematologic malignancies

Psychosocial challenges and health-related quality of life of adolescents and young adults with hematologic malignancies

Bio-psycho-social-spiritual needs of adolescents and young adults with life-threatening illnesses: Implications for social work practice

Social isolation and social connectedness among young adult cancer survivors: A systematic review

Contact Info

Product

Resources

About