To foster healing among adolescents and young adults with cancer: What helps? What hurts?

Zebrack, Brad; Chesler, Mark A.; Kaplan, Stuart L.

doi:10.1007/s00520-009-0719-y

Cited by 103 publications

(111 citation statements)

References 9 publications

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“…Production of this report has been made possible through a financial contribution from Health Canada through the Canadian Partnership Against Cancer, and through the support of the C 17 Council, the national network of Canadian pediatric hematology/oncology programs. The Canadian Partnership Against Cancer is an independent organization funded by the federal government to accelerate action on cancer control for all Canadians.…”

Section: Acknowledgmentsmentioning

confidence: 99%

“…The diagnosis and treatment of cancer in this age group may have a significant impact on quality of life, productivity, social and family relationships, cognitive functioning, and other aspects of development long after treatment completion. 1,4,5,17 Developmental tasks of young adulthoodincluding establishing meaningful relationships, completing higher education, becoming financially independent, and developing an autonomous identity-can be disrupted or delayed. AYA patients experience distress, anxiety, and depression, and require psychosocial and supportive care expertise.…”

Section: Psychosocial Needsmentioning

confidence: 99%

See 1 more Smart Citation

Principles and Recommendations for the Provision of Healthcare in Canada to Adolescent and Young Adult–Aged Cancer Patients and Survivors

Fernandez

Fraser²,

Freeman

et al. 2011

Journal of Adolescent and Young Adult Oncology

103

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Section: Acknowledgmentsmentioning

confidence: 99%

Section: Psychosocial Needsmentioning

confidence: 99%

Principles and Recommendations for the Provision of Healthcare in Canada to Adolescent and Young Adult–Aged Cancer Patients and Survivors

Fernandez

Fraser²,

Freeman

et al. 2011

Journal of Adolescent and Young Adult Oncology

103

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“…Research over the last 20 years has indicated that AYAs with cancer are a forgotten population who require closer study in order to understand their unique problems [1][2][3][4][5][6][7][8][9] prompting Michelagnoli, Pritchard and Phillip [3] to describe this group of people as a lost tribe. One factor identified to account for this disadvantage is the fragmentation of services [1,[10][11][12].…”

Section: Literature Reviewmentioning

confidence: 99%

Stories of Dying and Death as told by Family Members’ of Adolescents and Young Adults (AYAs) who have Died from Cancer

Barling¹,

Davis²

2016

J Palliat Care Med

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Research of AYAs with cancer has developed significantly over the last 20 years. The research has demonstrated that AYAs with cancer are a forgotten population, who require closer study in order to understand their unique issues. This paper examines family members' experiences of adolescents and young adults (AYAs) during the dying stage of their cancer trajectory. The results are drawn from a larger study titled 'From Go to Woe; Family Members' Stories of Adolescents and Young People Living with and Dying from Cancer, which storied the family members' experience of the diagnosis, treatment, dying and death of an AYA family member, utilizing Armstrong-Coster's (2004) four stages of the cancer trajectory. The principal researcher's motivation to understand and story these experiences was related to her own isolation and lack of information when her 16 year old son Anthony, was diagnosed with and eventually died of cancer at 17 years of age.The significance of this study is the contribution made to the identification of issues that can inform health policy/ guidelines. The findings have the potential to increase understanding of, and prepare family members and AYAs with cancer, for the experience of the death and dying stage of the cancer trajectory.Keywords: Adolescents and young adults; Cancer; Death and dying; End of life decision making Literature ReviewResearch over the last 20 years has indicated that AYAs with cancer are a forgotten population who require closer study in order to understand their unique problems [1][2][3][4][5][6][7][8][9] prompting Michelagnoli, Pritchard and Phillip [3] to describe this group of people as a lost tribe. One factor identified to account for this disadvantage is the fragmentation of services [1,[10][11][12].The fragmentation of services is a result of AYAs being cared for in two systems of care, the paediatric and the adult [13] with different goals and philosophies of care.The paediatric system has been described as mainly family focused and the adult system disease focused [14].This has implications not only for medical treatment of AYAs with cancer, but also presents problems in providing targeted support services. O'Brien, et al.,[15] identified the following issues that account for the lack of support services.Support services vary across adult hospitals and are fewer than those provided by specialist paediatric hospitals; support services provided both in paediatric or adult hospitals are not designed for the AYA age group, and the lack of critical mass in either system prevents optimal support service. These issues are amplified during the dying stage of the cancer journey.There is limited research on AYAs dying with cancer and their families. A review of literature found only four authors [16][17][18][19]. Wein, Pery and Zer [19] provided information specific to this group and their specific psychosocial needs whilst dying.Bisset et al. [16] identified the following needs for AYAs, their parents and siblings for palliative care services: "involvement in dec...

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“…hematopoietic stem cell transplantation) [125], have the potential to influence adherence. Peer support and dedicated support groups may help deal with some of these psychosocial barriers in AYAs with cancer [112,125]. A comprehensive care framework, addressing linguistic, cultural, social and other issues, results in high adherence in certain populations, such as children and adolescents with SCD [78].…”

Section: Adolescents and Young Adultsmentioning

confidence: 99%

“…This technology base may enable effective, standardized and cost-effective assessment of adherence and intervention [110], especially in AYAs who are highly engaged in media-based social networking and seeking health information [111]. Web-based interventions can disperse educational material and facilitate tailored health promotion, peer support [112] and attendance of clinic appointments, as shown, for example, in AYA cancer survivors [113] and AYAs with SCD [26,50]. …”

Section: Adolescents and Young Adultsmentioning

confidence: 99%

Adherence-Related Issues in Adolescents and Young Adults with Hematological Disorders

Leader

Raanani²

2014

Acta Haematol

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Nonadherence to medical recommendations is a widespread problem well documented in a multitude of clinical settings. Nonadherence may adversely affect clinical outcomes such as survival and quality of life and increase health-care-related costs. An understanding of the factors driving nonadherence is key to developing effective adherence-enhancing interventions (AEIs). There are ongoing attempts in contemporary adherence research to better define the various components of adherence, to find optimal measures of adherence and correlations with clinical outcomes, and to create a classification system for AEIs. Nonadherence is also widely prevalent among adolescents and young adults (AYAs) with chronic hematological diseases, affecting up to 50% of patients and increasing with age. Combined use of objective (i.e. electronic monitoring, EM) and subjective (i.e. self-report) measures of adherence may be the preferred approach to assess adherence. The unique physical, social and emotional aspects of the AYA life stage are closely related to intricate causes of nonadherence in AYAs such as problems in transition to adult care. Until proven otherwise, the empirical target in AYAs with hematological disorders should be perfect adherence. Multilevel AEIs, EM feedback and behavioral interventions are among the most effective types of AEIs. Despite the magnitude of the problem, only a handful of AEIs have been evaluated among AYAs with hematological disorders. Thus, this is a field with unmet needs warranting high-quality trials using standardized and well-specified assessment methods and interventions. This review discusses the prevalence, definition, causes and clinical implications of nonadherence among AYAs with hematological disorders, along with strategies to measure and improve adherence.

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To foster healing among adolescents and young adults with cancer: What helps? What hurts?

Cited by 103 publications

References 9 publications

Principles and Recommendations for the Provision of Healthcare in Canada to Adolescent and Young Adult–Aged Cancer Patients and Survivors

Principles and Recommendations for the Provision of Healthcare in Canada to Adolescent and Young Adult–Aged Cancer Patients and Survivors

Stories of Dying and Death as told by Family Members’ of Adolescents and Young Adults (AYAs) who have Died from Cancer

Adherence-Related Issues in Adolescents and Young Adults with Hematological Disorders

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