Preliminary Findings of Focus Group Analysis to Support the Needs of Adolescent and Young Adult Patients and Survivors of Cancer: Steps Toward a National Adolescent and Young Adult Supportive Care Program

Vora, Tushar; Chapman, Stacy; Uppal, Serena; Shanawaz, Shaayini; Emanuele, Cristina; Gupta, Abha; Avery, Jonathan

doi:10.1089/jayao.2021.0151

Cited by 3 publications

(2 citation statements)

References 10 publications

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“…Several studies have shown that the desire for peer-led support is highly significant for young cancer patients, who can derive substantial benefits from such interactions [ 29 , 30 ]. Interaction with peers on an eye-to-eye level can help maintain normality and cope with upcoming developmental tasks such as identity formation or the development of a positive self-image [ 31 , 32 ].…”

Section: Introductionmentioning

confidence: 99%

Peer2Me – evaluation of a peer supported program for adolescent and young adult (AYA) cancer patients: study protocol of a randomised trial using a comprehensive cohort design

Brock,

Dwinger,

Bergelt

et al. 2024

BMC Cancer

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Background Developing cancer in young adulthood is a non-normative life event and associated with adverse physical, social and psychological consequences. High psychological distress is common in AYA cancer patients including anxiety, depression or fear of recurrence. At the same time, it is well known that AYA often report unmet needs for support, particularly in terms of informational exchange and emotional support from peers in order to benefit from shared experiences and enhance self-efficacy. Especially in the AYA group, interactions with other same-aged cancer patients may represent an essential resource in terms of coping with the disease, as family members and friends are often overwhelmed and struggling with helplessness. Currently, there is a lack of professional support services using peer support (e.g. psycho-oncological support, aftercare consultations, social legal counselling) or evaluated peer support interventions in Germany. Our aim is to assess the effectiveness of the Peer2Me intervention for AYAs, in which acute patients (mentees) are accompanied by an AYA survivor (mentor) over a period of three months. Methods A prospective Comprehensive Cohort Design with repeated measures will be used to evaluate the effectiveness of Peer2Me for AYA. A sample of 180 patients in active cancer treatment aged 18 to 39 years will be enrolled and randomized to the intervention or control condition (a single AYA-specific consultation). Following mentor training, mentees and mentors are matched by diagnosis, age, and gender. The primary outcome is self-efficacy; secondary outcomes include measures of anxiety, depression, health literacy, life satisfaction and social support life. Outcomes will be measured at baseline before the intervention (t1), immediately after completion of the three-month intervention (t2) and three months after completion the intervention (t3). For the final analyses, we will use an intention-to-treat approach (ITT) and compare patients in the assigned treatment groups. Discussion Peer2Me might be an important addition to existing professional psychosocial support services for young cancer patients. At the end of the study, a psycho-oncological intervention for young cancer patients undergoing acute treatment should be available, from which both mentors and mentees could benefit. The long-term continuity of Peer2Me should be ensured through collaboration with different partners. Trial Registration The study was retrospectively registered on February 4, 2022 at clinicaltrials.gov (NCT05336318).

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Section: Introductionmentioning

confidence: 99%

Peer2Me – evaluation of a peer supported program for adolescent and young adult (AYA) cancer patients: study protocol of a randomised trial using a comprehensive cohort design

Brock,

Dwinger,

Bergelt

et al. 2024

BMC Cancer

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“…A collaborative partnership between the Canadian Cancer Society (CCS) and the AYA Program at the Princess Margaret Cancer Centre (Toronto, ON, Canada) emerged to understand the concerns of AYA survivors and the type of support they require, independent of locus of care. Building on our earlier work [ 5 ] the main objective of our study was to explore the gaps and barriers to accessing oncological and supportive cancer care and preferences on future types of solutions at a national level.…”

Section: Introductionmentioning

confidence: 99%

The Transformation of Adolescent and Young Adult Oncological and Supportive Care in Canada: A Mixed Methods Study

et al. 2022

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Background: Due to ongoing disparity in the specialized care available to adolescents and young adults (AYAs) with cancer, this study aimed to understand the gaps and barriers to accessing care and preferences on types of solutions at a national Canadian level. Methods: A mixed-methods study involving an online survey and focus groups (FGs) was conducted among AYAs residing in different regions of Canada. Results: There were a total of 174 survey respondents, of whom the majority were between 30–39 years of age (n = 125, 71.8%). Of the 174 respondents, 36 (20.7%) participated in one of seven FGs. Triangulation of the results illustrated that AYAs are not appropriately informed about the long-term health risks of being treated for cancer and where/how to seek support. These results culminated into three themes: (1) the need for AYA relevant and timely information about health risks; by (a) producing health risk-related content with the AYA life stage in mind; (b) providing a guided “map” to help AYAs anticipate what they may experience, and (c) providing checklists to help AYAs navigate their experience; (2) need for tailored and timely supportive care including (a) establishing ongoing check-ins and (b) receiving navigation support, and (3) need for enhanced connections by creating (a) a space to gather, connect and seek mentorship and (b) a hub to access information. Conclusion: AYAs continue to lack sufficient support both during and following cancer and mechanisms are required to ensure longitudinal support is provided across jurisdictions and in all stages of the cancer journey.

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Adolescent Young Adult Acute Lymphoblastic Leukemia Survivors Develop Innovative Solutions for Unmet Needs

Brown¹,

Ramocan²,

Block³

et al. 2023

Journal of Adolescent and Young Adult Oncology

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Preliminary Findings of Focus Group Analysis to Support the Needs of Adolescent and Young Adult Patients and Survivors of Cancer: Steps Toward a National Adolescent and Young Adult Supportive Care Program

Cited by 3 publications

References 10 publications

Peer2Me – evaluation of a peer supported program for adolescent and young adult (AYA) cancer patients: study protocol of a randomised trial using a comprehensive cohort design

Peer2Me – evaluation of a peer supported program for adolescent and young adult (AYA) cancer patients: study protocol of a randomised trial using a comprehensive cohort design

The Transformation of Adolescent and Young Adult Oncological and Supportive Care in Canada: A Mixed Methods Study

Adolescent Young Adult Acute Lymphoblastic Leukemia Survivors Develop Innovative Solutions for Unmet Needs

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