What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients

Cheung, Christabel K.; Zebrack, Brad

doi:10.1007/s00520-016-3396-7

Cited by 87 publications

(61 citation statements)

References 20 publications

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“…In this situation, their own well‐being might be compromised and relationships with other family members such as parents and siblings may become strained. Cheung and Zebrack () identify the most common resources desired by young people who have been treated for cancer and these resonate with the supportive role offered by partners and include help with loneliness and creating a sense of community and belonging.…”

Section: Discussionmentioning

confidence: 99%

The experience of partners supporting adolescents and young adults with cancer

Davies

Hannigan

Kelly

2019

Journal of Advanced Nursing

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Aims In a larger study where the aim was to investigate choice and control in decision making, the role of partners was significant. Reported here are the experiences of those partners of young people with cancer. Design A qualitative, exploratory case study approach was used. Methods In the larger study, 22 participants were recruited including five adolescents and young adults with cancer, two sets of parents/carers and three individual parents, five healthcare professionals linked to the adolescent or young adult with cancer and five friends or partners. Data were collected between February 2014 and February 2015 and included interviews, non‐participant observation and documentary analysis. Results Three themes were identified relating to partner experience derived from partner and patient interview data: “practical support”, “putting your partner first” and “acting as a confidante/ally”. Conclusion These findings reveal new knowledge of partner experience when adolescents and young adults have cancer. Richer in‐depth understandings of partner experience are required to improve the care of adolescents and young adults with cancer and those around them. Impact These findings will inform the development of guidance and further research which will enhance the knowledge of partner experience for those involved in cancer care in the adolescent and young adult age group.

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Section: Discussionmentioning

confidence: 99%

The experience of partners supporting adolescents and young adults with cancer

Davies

Hannigan

Kelly

2019

Journal of Advanced Nursing

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“…The findings can also be used to provide information and suggestions to AYA cancer patients, as well as their friends and family members. AYAs frequently describe feeling isolated and ostracized during their cancer experience [7,10,40]; therefore, having this data can help normalize and validate their experiences and remind them that other patients share similar experiences. Providing this information for AYA patients also allows them to concretely identify ways that others can help and reinforces how they may already be helping.…”

Section: Implications For Educationmentioning

confidence: 99%

The Role of Social Support in Adolescent/Young Adults Coping with Cancer Treatment

et al. 2019

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Adolescents/young-adult (AYA) cancer patients are a psychosocially at-risk group as they are often less well-studied than other age cancer cohorts. Therefore, they experience disparities in access to developmentally informed treatment. Social support has been determined as an important aspect of AYAs' cancer experience, but additional research was needed to describe specific behaviors AYAs found helpful and to explore how AYAs seek opportunities for additional support. As part of a larger qualitative study, study aims were to determine how AYAs (ages 15-26) cope during cancer treatment and examine how social support interacts with individual AYA coping. Participants included 10 AYA cancer patients undergoing treatment (mean age = 18.9 years) and 10 parents (mean age = 45.6 years). Descriptively, participants scored within the normal to high range on measures of hope, depression/anxiety/stress, quality of life, and social support. Participants completed semi-structured, audio-recorded interviews that were transcribed and coded as generated. Qualitative analysis was guided by principles of grounded theory and utilized the constant comparative approach. Themes within social support groups included presence, distraction, positive attitude, and maintaining AYA autonomy, communication, and advocacy. Results suggest social supports provide additional coping resources for AYAs with cancer through supplementing individual coping strategies. Future directions/implications for intervention/treatment are discussed.Children 2020, 7, 2 2 of 25 quality of life [3,4], lower scores of health competence (e.g., health perceptions, cognitive competence, and autonomy), significantly greater psychological distress, fewer positive health beliefs [5], and more social problems [6] than individuals diagnosed during school age (ages 6-12) or earlier. Even for medically healthy and typically developing individuals, the adolescent developmental stage poses distinct challenges, which can be further complicated by the introduction of a chronic illness such as cancer [6][7][8].Social support through family, friends, healthcare providers, and other individuals [8] appears to be one of the most important and beneficial aspects for adolescents and young adults undergoing cancer treatment. Both parental and friend/peer support appear to have a unique and important influence on AYAs coping with cancer, but findings are mixed about which of these relationships are most meaningful [9][10][11][12][13]. Social support has been shown to be important for most cancer populations; however, few studies have explicitly examined which actions and behaviors are the most helpful, particularly for AYAs undergoing treatment. Furthermore, fewer studies describe behaviors from a wide variety of social supports, and even fewer examine findings communicated directly from AYAs themselves.As part of a larger qualitative project focused on coping and hope theory in AYA cancer patients, researchers examined how a wide range of social supports provide assistance for this d...

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“…In developing relationships, identity is revealed though personal history, emotions, thoughts and body. The disclosure of cancer and its impact may result in rejection and compound negative perceptions of the body, self and emerging sexuality . Hence, the process of dating and relationship formation management becomes even more stressful and uncertain, potentially resulting in deprived companionship, support and loneliness …”

Section: The Impact Of Cancer On Adolescents’ and Young Adults’ Sexuamentioning

confidence: 99%

Sexuality and cancer: The experience of adolescents and young adults

Soanes

White

2018

Pediatric Blood & Cancer

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There are many components affecting the experience of sexuality for adolescents and young adults living with and beyond cancer. For patients, the interruption to normal socialization creates gaps in information and experience that potentially hinder development. In clinical practice, conversations relating to sexual consequences of illness or treatment are rare, as are age-appropriate assessment and intervention. In service design, the collaborative approach of oncofertility has yet to be replicated for sexuality. This paper considers how these obstacles can be overcome through local service development to address unmet need and promote sexual well-being for this group of patients.

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What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients

Cited by 87 publications

References 20 publications

The experience of partners supporting adolescents and young adults with cancer

The experience of partners supporting adolescents and young adults with cancer

The Role of Social Support in Adolescent/Young Adults Coping with Cancer Treatment

Sexuality and cancer: The experience of adolescents and young adults

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