Educational Needs of Health Professionals Caring for Adolescents and Young Adults with Cancer

Bradford, Natalie; Greenslade, Rebecca; Edwards, Rachel; Orford, Rebekah; Roach, Jane; Henney, Roslyn

doi:10.1089/jayao.2017.0082

Cited by 20 publications

(19 citation statements)

References 17 publications

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“…A lack of availability in relation to developmentally appropriate information and about a variety of physical concerns, including post-treatment side-effects and fertility, was reported. A lack of physiotherapy and dietetics support both during and after treatment was also identified (quotes [15][16][17][18][19]. Participants also reported a lack of available psychological supports, including access to emotional coping and management strategies, support to cope with relationships, and carer support (quotes [20][21][22][23][24][25].…”

Section: Service-related Factorsmentioning

confidence: 99%

“…The QYCS aims to provide holistic medical, nursing, and allied health care to AYAs living with cancer and their families; secondary consultation; state-wide education, and; a state-wide research program. 13,18,19 However, delivery of care across both Australia and Queensland remains complicated by the dispersion of patients over large geographical areas and across several pediatric and adult; public and privately funded; metropolitan, regional, and rural health care services. 7,13 This results in inconsistency in access to care and divergent experiences for young people.…”

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confidence: 99%

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Adolescents and Young Adults with Cancer: Barriers in Access to Psychosocial Support

Holland

Walker

Henney

et al. 2021

Journal of Adolescent and Young Adult Oncology

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Purpose: Adolescents and young adults (AYAs) experience cancer at a time of significant developmental transition. Both disease and treatment impact psychosocial well-being in significant, persistent ways. While the impacts are now described, and the need for psychosocial care is increasingly well recognized, to date, the barriers in access to care have not been well delineated. This is essential to understand to facilitate access to appropriate care and improve outcomes. Methods: This study explored the barriers in access to psychosocial care for young people. Semistructured, audio-recorded interviews were undertaken with 16 AYAs aged 15-25 years. Eligible participants were diagnosed within the previous 24 months and recruited through the Queensland Youth Cancer Service (QYCS). Transcribed interviews were analyzed using content analysis. Results: Barriers in access to support were related to person-centered, service-related, and systemic factors. Barriers experienced at diagnosis and during treatment were less common compared with barriers after treatment; these were significant and largely related to a lack of holistic, multidisciplinary survivorship care. Conclusion: Barriers in access to psychosocial care are multifactorial, although most can be addressed through health-service responses. Ensuring standardized referral and repeated introduction of psychosocial care for young people is imperative, regardless of location of treatment. Flexible services are especially important for patients treated across different facilities. The development of comprehensive post-treatment survivorship models of care is also essential. Continued evaluation of the experience of young people and the barriers they face is also crucial to ensure responsive service development and promote optimal care.

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Section: Service-related Factorsmentioning

confidence: 99%

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confidence: 99%

Adolescents and Young Adults with Cancer: Barriers in Access to Psychosocial Support

Holland

Walker

Henney

et al. 2021

Journal of Adolescent and Young Adult Oncology

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“…There were also issues about having the time to access support, associated costs and the lack of visibility and advocacy from senior HCPs for accessing support. In addition, support was not integrated into training or ongoing professional practice and for some senior HCPs it may have been regarded as compromising their role or authority 31. Self-care in the palliative care workforce is known to be essential, yet rarely is education or training available 32 33.…”

Section: Discussionmentioning

confidence: 99%

Understanding care when cure is not likely for young adults who face cancer: a realist analysis of data from patients, families and healthcare professionals

et al. 2019

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ObjectivesTo understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16–40 years and how this might affect care.DesignWe used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care.SettingThree cancer centres and associated palliative care services across England.ParticipantsWe aimed for a purposive sample of 45 people with cancer from two groups: those aged 16–24 years for whom there may be specialist cancer centres and those 16–40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16–24 years and 30 people 25–40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma; central nervous system tumours) with a clinician-estimated prognosis of <12 months along with nominated family carers and healthcare professionals. 19 bereaved family members and 47 healthcare professionals participated in workshops.ResultsData were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals; and financial concerns.ConclusionsCurrent care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16–40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.

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“…Provision of education and training for hospital staff by AYA staff helps build capacity outside of the AYA program as well as promoting cultural change . Several institutions (e.g., Coventry University, University of Melbourne) offer postgraduate courses that can also foster AYA expertise beyond the immediate team…”

Section: Elements Of Aya Cancer Carementioning

confidence: 99%

Models of care for adolescent and young adult cancer programs

Osborn

Johnson

Thompson

et al. 2019

Pediatric Blood & Cancer

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This review draws on the experience of adolescent and young adult (AYA) cancer clinicians from Australia, the United States, and the United Kingdom to summarize common aspects of models of care implemented in their countries. The principles underpinning these models include patient‐ and family‐focused care informed by an understanding of normal AYA development, enhancing existing adult or pediatric cancer services to meet the needs of AYA, and promoting collaboration between pediatric and adult oncologists. Common elements of AYA cancer care include establishing an AYA multidisciplinary team that integrates medical and psychosocial care, efforts to centralize complex care, providing access and equity for all AYA, promoting clinical trials, and helping facilitate transition to healthy survivorship. Several organizational approaches are described, noting that local program development depends on resources, infrastructure, and assessment of unmet needs within the region. The development of national networks provides opportunities for shared learning and approaches to evaluation.

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Educational Needs of Health Professionals Caring for Adolescents and Young Adults with Cancer

Abstract: To provide high-quality healthcare to AYAs with cancer, health professionals require ongoing opportunities for education and training.

Cited by 20 publications

References 17 publications

Adolescents and Young Adults with Cancer: Barriers in Access to Psychosocial Support

Adolescents and Young Adults with Cancer: Barriers in Access to Psychosocial Support

Understanding care when cure is not likely for young adults who face cancer: a realist analysis of data from patients, families and healthcare professionals

Models of care for adolescent and young adult cancer programs

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