Clinical Trial Participation: A Qualitative Study of Adolescents and Younger Adults Recently Diagnosed with Cancer

Mobley, Erin M.; Schlüter, Thomas; Brailsford, Jennifer; Ochoa, Christian; Miller, Kimberly A.; Applebaum, Anise; Milam, Joel; Freyer, David R.

doi:10.1089/jayao.2022.0050

Cited by 3 publications

(22 citation statements)

References 22 publications

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“…In the included studies, supporters were exclusively parents. Included studies in their totality spanned the cancer trajectory: at diagnosis (n = 10), 23,24,31,37,38,[43][44][45][46][47] on treatment (n = 5), 25,26,35,36,39 survivorship (n = 3), 32,41,50 end of life care (n = 4) 22,24,27,37 or were across multiple parts of the trajectory (n = 7). 28,30,33,34,40,42,48 Studies used predominantly qualitative methods (n = 23) but there were two mixed methods studies and four using quantitative methods (see Table 1).…”

Section: First Author (Year)mentioning

confidence: 99%

“…24,33,37,38 Others were keen on collaborative decision making with parents and healthcare professionals or wanted to be the sole decision maker. 36,38,48 As AYACs were navigating cancer treatment, they also needed to be empowered to move towards independence and therefore communication needs were not static. 34,35,48,51 The high frequency of decision making in a short time period (such as at diagnosis) can result in AYACs avoiding non-essential decisions such as trial involvement.…”

Section: Involvementmentioning

confidence: 99%

“…AYACs can retrospectively identify their preferences for inclusion in medical decisionmaking, and even when preferring involvement, they value the input of trusted others. The results include international representation from the United States of America (USA) (n = 17), [22][23][24][25][26][27][28][29][30][31][32][33][34][35][36][37][38] Europe (n = 9), [39][40][41][42][43][44][45][46][47] Asia (n = 1), 48 Mexico (n = 1) 49 and Australasia (n = 1). 50 There was a range of ages spanning 13-24 years across the included studies, with most participants aged 15-19 years.…”

Section: First Author (Year)mentioning

confidence: 99%

“…This 'surreal' state inhibited their ability to engage in communication and retain information. 23,33,37,38,43 Healthcare professionals need to be cognisant of this at diagnosis, but how to navigate this was challenging and complex. Some AYACs wanted active responses from healthcare professionals in response to their distress, whereas others did not want to discuss emotions.…”

Section: Heightened Emotions At Diagnosis Often Inhibit Ayacs Ability...mentioning

confidence: 99%

“…24,27,28,40 Notably, some AYACs wanted to abdicate the responsibility of decision making to the medical team and their supporters. 24,33,37,38 Others were keen on collaborative decision making with parents and healthcare professionals or wanted to be the sole decision maker. 36,38,48 As AYACs were navigating cancer treatment, they also needed to be empowered to move towards independence and therefore communication needs were not static.…”

Section: Involvementmentioning

confidence: 99%

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Is there scope to do better? Clinical communication with adolescents and young adults with cancer—A scoping review

Critoph,

Cable,

Farmer

et al. 2024

Psycho-Oncology

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IntroductionHow to communicate effectively with adolescent and young adults with cancer (AYACs) is a research priority. In a UK‐wide survey of young people with cancer's research priorities, communication was a striking cross‐cutting theme. It is increasingly recognised that AYACs have experiences and communication needs that differ significantly from those of younger children and older adults. The purpose of this review is to explore the features of effective clinical communication with AYACs.MethodsA literature search was undertaken to identify and map the available evidence using a broad scope to get an overview of the pertinent literature, identify knowledge gaps and clarify concepts. The searches yielded 5825 records, generating 4040 unique articles. These were screened and 71 full articles were read by four researchers with disagreements resolved by discussion leaving 29 included articles. Narrative synthesis was undertaken in relation to each of the research questions.ResultsThree key themes were identified: being an adolescent/young adult, supporters, and healthcare professionals (HCPs). AYACs need to feel that HCPs understand their unique perspective. They want to be involved, this changes over time and in different contexts. Supporters are a central tenet, are most often parents and undertake several roles which are not always universally supportive. HCPs enable involvement of AYACs, and this needs to be actively promoted. AYACs preference for their level of involvement requires continual assessment. The three themes are interlinked and exist within the wider scope of the triadic encounter and cancer experience.ConclusionSupporters, most often parents were a key feature across the data and were seemingly paradoxical in nature. Triadic communication, the presence of a third person, is a central tenet of communication with AYACs and we propose a conceptual model to represent the nuances, components, and facets of this complex communication.

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Section: First Author (Year)mentioning

confidence: 99%

Section: Involvementmentioning

confidence: 99%

Section: First Author (Year)mentioning

confidence: 99%

Section: Heightened Emotions At Diagnosis Often Inhibit Ayacs Ability...mentioning

confidence: 99%

Section: Involvementmentioning

confidence: 99%

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Is there scope to do better? Clinical communication with adolescents and young adults with cancer—A scoping review

Critoph,

Cable,

Farmer

et al. 2024

Psycho-Oncology

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Improving supportive, palliative and end of life care for teenagers and young adults with cancer in adult haematology services

Lewis-Norman,

Vidrine,

Thistlethwayte

2024

Current Opinion in Supportive &Amp; Palliative Care

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Purpose of review Adolescents with haematological malignancies within adult services, in the UK from 16 years old, have unique needs and require developmentally targeted services and approaches to care delivery. High-risk intensive treatments are common for this cohort and a better understanding of what individualised supportive and palliative care means in this context is required. Recent findings Being known and understood as an emerging adult, with particular recognition of developmental stage, is an essential component of quality measures and underpins the adolescent, and caregiver, experience when faced with an uncertain or poor cancer prognosis (UPCP). Healthcare professionals (HCPs) can experience increased emotional labour and feelings of professional inadequacy when caring for adolescents with UPCP. Therapeutic alliance improves HCPs understanding of optimum individualised care by improving communication and supported decision making. Access to training and support for HCPs is required to address the emotional impact of therapeutic alliance with teenage/adolescent and young adults (T/AYAs) with advanced cancer. Summary Investment in therapeutic alliance, alongside robust support mechanisms and targeted training, can improve the skills, confidence and wellbeing for HCPs, and can also ensure optimum individualised care for T/AYAs with UPCP. Evidence for optimum care for adolescents with advanced cancer is relatively scarce, especially for younger T/AYAs (16–24) in the UK who sit within adult services. Further evaluation of the impact of current UK expertise, services and programs are needed to inform future development.

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Triadic communication with teenagers and young adults with cancer: a systematic literature review – ‘make me feel like I’m not the third person’

Critoph,

Taylor,

Spathis

et al. 2024

BMJ Open

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ObjectivesClinical communication needs of teenagers and young adults with cancer (TYACs) are increasingly recognised to differ significantly from younger children and older adults. We sought to understand who is present with TYACs, TYACs’ experiences of triadic communication and its impact. We generated three research questions to focus this review: (1) Who is present with TYACs in healthcare consultations/communication?, (2) What are TYACs’ experiences of communication with the supporter present? and (3) What is the impact of a TYAC’s supporter being present in the communication?DesignSystematic review with narrative synthesis.Data sourcesThe search was conducted across six databases: Medline, CINAHL, Embase, PsycINFO, Web of Science and AMED for all publications up to December 2023.Eligibility criteria for selecting studiesIncluded papers were empirical research published after 2005; participants had malignant disease, diagnosed aged 13–24 years (for over 50% of participants); the research addressed any area of clinical communication.Data extraction and synthesisThree independent reviewers undertook full-text screening. A review-specific data extraction form was used to record participant characteristics and methods from each included paper and results relevant to the three review questions.ResultsA total of 8480 studies were identified in the search, of which 36 fulfilled the inclusion criteria. We found that mothers were the most common supporter present in clinical communication encounters. TYACs’ experiences of triadic communication are paradoxical in nature—the supporter can help or hinder the involvement of the young person in care-related communication. Overall, young people are not included in clinical communication and decisions at their preferred level.ConclusionTriadic communication in TYACs’ care is common, complex and dynamic. Due to the degree of challenge and nuances raised, healthcare professionals need further training on effective triadic communication.PROSPERO registration numberCRD42022374528.

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Clinical Trial Participation: A Qualitative Study of Adolescents and Younger Adults Recently Diagnosed with Cancer

Cited by 3 publications

References 22 publications

Is there scope to do better? Clinical communication with adolescents and young adults with cancer—A scoping review

Is there scope to do better? Clinical communication with adolescents and young adults with cancer—A scoping review

Improving supportive, palliative and end of life care for teenagers and young adults with cancer in adult haematology services

Triadic communication with teenagers and young adults with cancer: a systematic literature review – ‘make me feel like I’m not the third person’

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