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Background: Access to timely, age-appropriate palliative care services and end-of-life communication are two standards of care for adolescents and young adults (AYAs) living with cancer where cure is uncertain or unlikely. Health professionals' capacity to facilitate these standards is critical. This study aimed to understand AYA oncology health professionals' experienced practices in, and barriers to, delivering these standards of care across palliative care and end-of-life communication in Australia, New Zealand, and the United Kingdom (UK). Procedure: We invited health professionals to complete a survey examining access, barriers to, and practices around these standards of care. Tailored to local settings, our survey assessed current delivery of palliative care and end-of-life communication services (including advance care planning [ACP]) and barriers to implementation of these. Results: In total, 148 interdisciplinary health professionals participated (89% female overall; 83% female in Australia, 88% female in New Zealand, and 98% female in the UK). Across countries, participants reported that most institutions had an AYA cancer program (74% overall). Introduction to palliative care services was most often prognosis dependent or "not at any uniform time." ACP was less frequently introduced than palliative care. The most endorsed barrier to palliative care team introduction, as well as ACP, was "some team members not knowing how to introduce the topic." Conclusions: Our results indicate that there are common barriers to AYAs receiving palliative care, end-of-life communication, and ACP. Given that health professionals' confidence in this area can enable facilitation of early, age-appropriate communication, resources and training are urgently needed to bridge these practice gaps. [ABSTRACT FROM AUTHOR]

Introduction: Health services rely upon carers to provide care for loved ones with cancer, yet many carers often feel ill‐prepared for this role. Despite a multitude of programmes to support carer mental health, programmes that help carers feel better equipped to support a person with cancer are lacking. This study aimed to address this need by adapting an evidence‐based intervention to be suitable for carers of people with cancer. Methods: This study used an exploratory, qualitative design consisting of experienced‐based co‐design and an in‐depth stakeholder engagement strategy. An existing evidence‐based programme to promote resilience in the context of providing care was adapted for relevance to carers for people with cancer via two co‐design workshops with carers and healthcare professionals (n = 8). The resulting prototype programme was refined based on stakeholder consultations with staff and consumer members of cancer and carer support organisations across Australia (n = 16). Transcripts of the workshops, meetings and written feedback from carers were thematically analysed. Results: Major programme developments were guided by three themes that emerged from the co‐design workshops: 'creating value for carers', 'multiple contributors to carer distress' and 'the need for flexible implementation'. Analysis of the stakeholder consultation data showed that the themes of 'diversity in carer journeys' and 'creating impact for carers' were key to further tailoring the programme for applicability to practice. An adapted programme called 'iCanSupport' resulted from the process, with key adaptations being more relevant case study scenarios for carers and greater flexibility in accessing and engaging with the intervention to accommodate a range of carer circumstances. Conclusion: Programmes to build skills for becoming a carer for someone with cancer are absent, yet they are desired by carers. Using co‐design provided a user‐centric approach to adapt an existing evidence‐based programme. Programme evaluation is required to determine the effectiveness of the co‐designed approach in improving carer preparedness among a range of cohorts. Patient or Public Contribution: Carers and consumers with lived experience and others involved in supporting consumers made valuable contributions to co‐designing and refining the programme in addition to providing ongoing guidance in the unfolding analysis and reporting of this research. [ABSTRACT FROM AUTHOR]

Background We aimed to define levels of unmet supportive care needs in people with primary brain tumor and to reach expert consensus on feasibility of addressing patients' needs in clinical practice. Methods We conducted secondary analysis of a prospective cohort study of people diagnosed with high-grade glioma (n = 116) who completed the Supportive Care Needs Survey-Short Form during adjuvant chemoradiation therapy. Participants were allocated to 1 of 3 categories: no need ("no need" for help on all items), low need ("low need" for help on at least 1 item, but no "moderate" or "high" need), or moderate/high need (at least 1 "moderate" or "high" need indicated). Clinical capacity to respond to the proportion of patients needing to be prioritized was assessed. Results Overall, 13% (n = 5) were categorized as no need , 23% (n = 27) low need , and 64% (n = 74) moderate/high need. At least 1 moderate/high need was reported in the physical and daily living domain (42%) and the psychological (34%) domain. In recognition of health system capacity, the moderate/high need category was modified to distinguish between moderate need ("moderate" need indicated for at least 1 item but "high" need was not selected for any item) and high need (at least 1 "high" need indicated). Results revealed 24% (n = 28) moderate need and 40% (n = 46) high need. Those categorized as high need indicated needing assistance navigating the health system and information. Conclusions Using four step allocations resulted in 40% of patients indicating high need. Categories may facilitate appropriate triaging and guide stepped models of healthcare delivery. [ABSTRACT FROM AUTHOR]

Talking about dying when faced with end-of-life may be important for achieving optimal outcomes for young people and their families. Given the lack of research on young people's communication around end-of-life and death, this analogue study examined the role of attachment theory in conversations about dying. Experiment 1 assessed attachment security of 80 healthy young adults and randomised them to receive either an induction that raised awareness of one's attachment figures or a neutral induction, and then primed them with an imagined scenario where they were diagnosed with an incurable illness. Participants then completed a self-report measure of their willingness to discuss end-of-life topics with family, friends, or a psychologist. The experimental attachment induction did not increase willingness to talk about end-of-life concepts. Experiment 2 extended this design and asked participants to describe these conversations and assessed the content of their imagined end-of-life conversations. Experiment 2 replicated the finding that enhancing individuals' awareness of key attachment figures did not increase participants' willingness to engage in end-of-life conversations. However, heightened attachment awareness led participants to talk more about their relationship with the person they were hypothetically talking with. Across both experiments, avoidant attachment tendencies reduced the likelihood that participants receiving the attachment prime would want to engage in end-of-life conversation. Overall, it seems there are important differences between individuals on willingness to talk about death, and this may be influenced by one's attachment style. These results raise implications for the importance of attachment in the therapeutic relationship for healthcare professionals working with young people with life-limiting illnesses, such as cancer. Further research may shed light on how an individually tailored approach, taking into account attachment security, achieves the best outcomes for individuals who require end-of-life conversations. [ABSTRACT FROM AUTHOR]

Objective: Post‐traumatic growth (PTG) describes perceived positive changes following a traumatic event. We describe (i) PTG in parents of long‐term childhood cancer survivors (CCS‐parents) compared to parents of similar‐aged children of the general population (comparison‐parents), (ii) normative data for the Swiss population, and (iii) psychological, socio‐economic, and event‐related characteristics associated with PTG. Methods: CCS‐parents (aged ≤16 years at diagnosis, ≥20 years old at study, registered in the Childhood Cancer Registry Switzerland (ChCR), and the Swiss population responded to a paper‐based survey, including the PTG‐Inventory (total score 0–105). We carried out (i) t‐tests, (ii) descriptive statistics, and (iii) multilevel regression models with survivor/household as the cluster variable. Results: In total, 746 CCS‐parents (41.7% fathers, response‐rate = 42.3%) of 494 survivors (median time since diagnosis 24 (7–40) years), 411 comparison‐parents (42.8% fathers, 312 households), and 1069 individuals of the Swiss population (40.7% male, response‐rate = 20.1%) participated. Mean [M] total PTG was in CCS‐parents M = 52.3 versus comparison‐parents M = 50.4, p = 0.078; and in the Swiss population M = 44.5). CCS‐parents showed higher 'relating‐to‐others' (18.4 vs. 17.3, p = 0.010), 'spiritual‐change' (3.3 vs. 3.0, p = 0.038) and 'appreciation‐of‐life' (9.3 vs. 8.4, p = 0.027) than comparison‐parents, but not in 'new‐possibilities' and 'personal‐strength'. Female gender, older age, higher post‐traumatic stress, and higher resilience were positively associated with PTG. Individuals reporting events not typically classified as traumatic also reported growth. Conclusions: Our findings highlight that mothers and fathers can experience heightened growth many years after their child's illness. Being able to sensitively foreshadow the potential for new‐possibilities and personal development may help support parents in developing a sense of hope. [ABSTRACT FROM AUTHOR]

Objectives: To synthesize current evidence on the association between anticipatory anxiety, defined as apprehension‐specific negative affect that may be experienced when exposed to potential threat or uncertainty, and cancer screening to better inform strategies to maximize participation rates. Methods: Searches related to cancer screening and anxiety were conducted in seven electronic databases (APA PsycINFO, Scopus, Web of Science, Embase, Cochrane Library, PubMed, CINAHL), with potentially eligible papers screened in Covidence. Data extraction was conducted independently by multiple authors. Barriers to cancer screening for any type of cancer and relationships tested between anticipatory anxiety and cancer screening and intention were categorized and compared according to the form and target of anxiety and cancer types. Results: A total of 74 articles (nparticipants = 119,990) were included, reporting 103 relationships tested between anticipatory anxiety and cancer screening and 13 instances where anticipatory anxiety was reported as a barrier to screening. Anticipatory anxiety related to a possible cancer diagnosis was often associated with increased screening, while general anxiety showed no consistent relationship. Negative relationships were often found between anxiety about the screening procedure and cancer screening. Conclusion: Anticipatory anxiety about a cancer diagnosis may promote screening participation, whereas a fear of the screening procedure could be a barrier. Public health messaging and primary prevention practitioners should acknowledge the appropriate risk of cancer, while engendering screening confidence and highlighting the safety and comfort of screening tests. [ABSTRACT FROM AUTHOR]

Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery. Participants (n = 190) were aged 15–29 years and received cancer treatment from 2014 to 2019. Australians (n = 118) were recruited nationally by health care professionals. U.S. participants (n = 72) were recruited nationally via social media. The survey included demographic and disease variables, and questions regarding medical treatment, information and support provision, care coordination, and satisfaction across the treatment pathway. Sensitivity analyses examined the possible contribution of age and gender. Most patients from both countries were satisfied or very satisfied with their medical treatment (chemotherapy, radiotherapy, and surgery). There were significant differences between countries in the provision of fertility preservation services, age-appropriate communication, and psychosocial support. Our findings suggest when a national system of oversight with both state and federal funding is implemented, as is the case in Australia but not in the United States, significantly more AYAs with cancer receive age-appropriate information and support services, and improved access to specialist services such as fertility care. A national approach with government funding and centralized accountability appears to be associated with substantial benefits for the well-being of AYAs undergoing cancer treatment. [ABSTRACT FROM AUTHOR]

Objectives: This study aimed to scope the psychological support practices of Australian health professionals providing supportive care to adults with primary brain tumor. Method: Health professionals from multidisciplinary organizations and cancer support services completed an online survey focused on psychological support for people with brain tumor (PwBT) and family members, and perceived barriers or gaps in support provision. Results: 107 professionals, mainly from psychology (45%), nursing (20%), and social work (10%) backgrounds, completed the survey. Scope of practice differed according to discipline, with psychologists and nurses most likely to screen for psychological distress (71%–76%), and psychologists more typically providing at least one psychological support session (78%). Psychologists were more likely to screen for cognitive impairment (31%), whereas nurses and social workers more commonly provided family‐based support (62%–73%). Psychological support was more frequently provided in the long‐term management phase (78%) than early post‐diagnosis/treatment (45%). System‐level barriers to accessing psychological support were most frequently identified, which included limited resources and funding, insufficient staff time, lengthy waitlists and costs, poor service coordination, and lack of staff with brain tumor‐specific training. Conclusions: The provision of psychological support for PwBT varies according to discipline, setting and management phase. Further research on different models of psychosocial care is needed to inform strategies to address organizational and policy factors impacting professionals' scope of practice. [ABSTRACT FROM AUTHOR]