"Queer people are excellent caregivers, but we're stretched so very thin": Psychosocial wellbeing and impacts of caregiving among LGBTQI cancer carers.

BACKGROUND: LGBTQI (lesbian, gay, bisexual, transgender, queer and/or intersex) communities are increasingly recognized as a vulnerable and high-risk population in oncology. LGBTQI cancer carers, including carers who are LGBTQI and other carers of LGBTQI people, experience many of the same stressors as LGBTQI patients but their support needs are often overlooked in the cancer literature. METHOD: This mixed-methods study examined distress and quality of life in LGBTQI cancer carers. Online surveys were completed by 129 carers and 31 carers took part in a one-to-one semi-structured interview. Analyses of variance (ANOVAs) tested for differences in psychosocial outcomes and carer experiences by gender, sexuality, age, carer relationship and carer/patient LGBTQI status. Reflexive thematic analysis of interviews and open-ended survey responses facilitated in-depth examination of subjective experiences. RESULTS: 42.6% of participants reported high or very high distress. Distress was significantly positively correlated with discrimination in cancer care, health impact, financial impact and lack of family support; it was negatively correlated with comfort in LGBTQI sexuality and gender identity, social support and quality of life. Four themes were identified in thematic analysis of qualitative data: (1) Identity on the sidelines: LGBTQI sexuality and gender pushed aside during cancer caregiving; (2) Fear of being shut-out: rejection and exclusion of LGBTQI cancer carers; (3) Lack of support for LGBTQI caregivers; and (4) Closer and stronger relationships due to a culture of mutual caregiving. CONCLUSIONS: LGBTQI cancer carers must contend with typical caregiving demands whilst also managing additional minority stressors, including discrimination, rejection from family, isolation from LGBTQI communities, and invisibility in healthcare and support services. Despite this, LGBTQI carers showed resilience in building their own mutually supportive networks to rally around the person with cancer, which were reported to ameliorate psychosocial vulnerabilities. Service providers need to recognize the needs of LGBTQI cancer carers through inclusive and reflective practices. This will facilitate trust and patient and carer sexuality and gender identity disclosure, with positive consequences for wellbeing and satisfaction with cancer care.

Disrupted identities, invisibility and precarious support: a mixed methods study of LGBTQI adolescents and young adults with cancer.

BACKGROUND: Lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) adolescents and young adults (AYAs) with cancer report higher levels of depression and anxiety and lower health related quality of life than non-LGBTQI AYAs with cancer, and LGBTQI adults with cancer. This mixed methods study examined LGBTQI AYAs' experiences of cancer and cancer care, to understand these health disparities. METHODS: Online surveys were completed by 95 LGBTQI AYAs with cancer (age 16-39 years); 19 AYAs took part in a one-to-one semi structured interview. Reflexive thematic analysis of interviews and open-ended survey responses facilitated in-depth examination of subjective experiences; descriptive statistics performed on individual closed-ended survey items identified the percentage of AYAs reporting experiences identified in the qualitative analysis. RESULTS: 63% of AYAs reported high or very high distress on the K10. Three themes were identified in the qualitative analysis: 1) "Identities in flux", included subthemes "Cancer disrupts developing identities, and involvement with LGBTQI communities"; "Internalized prejudice impacts identities"; and "Cancer facilitates identities and embodiment". 2) "Invisibility in cancer care", included subthemes "Navigating disclosure amongst cis-heteronormative assumptions", "Discrimination and paternalistic cancer care" and " Cis-heteronormativity within cancer information". 3) "Precarious social support for LGBTQI AYAs with cancer", included subthemes " Social support during cancer is helpful for LGBTQI AYAs", "LGBTQI AYAs navigate limited support", and" Finding cancer peer support networks is difficult for LGBTQI AYAs". CONCLUSIONS: LGBTQI AYAs with cancer experience psychosocial vulnerabilities related to identity development, experiences of care, and social support networks. These factors likely contribute to their previously evidenced elevated risk of distress, relative to both non-LGBTQI AYAs and LGBTQI older adults. AYAs affected by cancer may require additional, tailored supportive care, including targeted information resources, LGBTQI AYA specific cancer support groups, or partnerships and referrals to LGBTQI community organisations. Additionally, it is evident that health care professionals and cancer services have much work to do in ensuring LGBTQI AYAs receive affirming and appropriate care across paediatric and adult clinical settings. They must move beyond assuming all patients are cisgender, heterosexual and do not have intersex variations unless otherwise stated; work to signal inclusivity and facilitate disclosure; and be able to respond appropriately with tailored information and care, which is inclusive of LGBTQI partners, chosen family, and support systems.

Reinforcing or Disrupting Gender Affirmation: The Impact of Cancer on Transgender Embodiment and Identity.

There is a pressing need for greater understanding and focus on cancer survivorship and informal cancer caring of trans people (binary and non-binary), across tumor types, to inform culturally safe trans inclusive cancer information and care. This qualitative study, part of the mixed methods Out with Cancer project, examined experiences of trans embodiment and identity after cancer diagnosis and treatment. We drew on open-ended survey responses from 63 trans cancer survivors and 23 trans cancer carers, as well as interviews and a photo-elicitation activity with a subset of 22 participants (15 cancer survivors, 7 cancer carers). Reflexive thematic analysis identified three themes: Cancer enhances trans embodiment, through experiences of gender euphoria following cancer treatment, and acceleration of decisions about gender affirmation; cancer erases or inhibits gender affirmation; trans embodiment is invisible or pathologized in cancer care. These findings demonstrate that trans embodiment and identity, as well as the process of gender affirmation, may be disrupted by cancer or informal cancer caring. Conversely, cancer and cancer treatment can positively impact the embodied identity and lives of trans people, despite the anxiety and strain of negotiating medical procedures. However, if healthcare professionals operate within a cis-heteronormative framework and do not understand the meaning of embodied change following cancer treatment for trans individuals, these positive benefits may not be realized.

Evaluating Maybe Later Baby, a Fertility Information Resource for Adolescents and Young Adults Diagnosed with Cancer: A Randomized, Controlled Pilot Study.

Purpose: Fertility is a major concern for adolescents and young adults (AYAs, 15-30 years) diagnosed with cancer, yet they often report a lack of information and understanding about fertility impacts and preservation options. This study aimed to evaluate the acceptability and preliminary efficacy of Maybe Later Baby (MLB), an oncofertility information resource for AYAs diagnosed with cancer. Methods: In a randomized controlled trial, 13 participants received MLB alone and 10 received an augmented intervention involving an additional consultation with a health care professional (HCP). Pre- and postintervention surveys and interviews explored participants' well-being, fertility knowledge, health literacy, and experiences using the resource. Results: Participants indicated that the resource was accessible and understandable and provided valuable information without increasing distress. When averaged across conditions, functional health literacy (p = 0.006) and oncofertility knowledge (p = 0.002) increased, although there were no significant changes in fertility-related emotions (p > 0.05), and quality of life decreased (p = 0.014). While qualitative accounts suggested that HCP consultations were useful and validated participants' experiences and concerns, participants receiving the augmented intervention became more nervous/fearful about fertility treatment (p = 0.005). There were no other differences in outcomes between conditions. Conclusions: Young people diagnosed with cancer want and value information about oncofertility and resources such as MLB are acceptable and useful means of providing this information. This could be supplemented by clinical discussion to ensure that tailored situation-specific information is provided and understood and patient distress is appropriately managed. Clinical Trial Registration number: 12615000624583.

LGBTQI cancer patients' quality of life and distress: A comparison by gender, sexuality, age, cancer type and geographical remoteness.

Background: There is growing acknowledgement of the psycho-social vulnerability of lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI) people with cancer. The majority of research to date has focused on cisgender adults with breast or prostate cancer. Study Aim: This study examined psycho-social factors associated with distress and quality of life for LGBTQI cancer patients and survivors, across a range of sexualities and gender identities, intersex status, tumor types, ages and urban/rural/remote location using an intersectional theoretical framework. Method: 430 LGBTQI people with cancer completed an online survey, measuring distress, quality of life (QOL), and a range of psycho-social variables. Participants included 216 (50.2%) cisgender women, 145 (33.7%) cisgender men, and 63 (14.7%) transgender and gender diverse (TGD) people. Thirty-one (7.2%) participants reported intersex variation and 90 (20%) were adolescents or young adults (AYA), aged 15-39. The majority lived in urban areas (54.4%) and identified as lesbian, gay or bisexual (73.7%), with 10.9% identifying as bisexual, and 10.5% as queer, including reproductive (32.4%) and non-reproductive (67.6%) cancers. Results: Forty-one percent of participants reported high or very high distress levels, 3-6 times higher than previous non-LGBTQI cancer studies. Higher rates of distress and lower QOL were identified in TGD compared to cisgender people, AYAs compared to older people, those who identify as bisexual or queer, compared to those who identify as lesbian, gay or homosexual, and those who live in rural or regional areas, compared to urban areas. Elevated distress and lower QOL was associated with greater minority stress (discrimination in life and in cancer care, discomfort being LGBTQI, lower outness) and lower social support, in these subgroups. There were no differences between reproductive and non-reproductive cancers. For the whole sample, distress and poor QOL were associated with physical and sexual concerns, the impact of cancer on gender and LGBTQI identities, minority stress, and lack of social support. Conclusion: LGBTQI people with cancer are at high risk of distress and impaired QOL. Research and oncology healthcare practice needs to recognize the diversity of LGBTQI communities, and the ways in which minority stress and lack of social support may affect wellbeing.

"Surviving Discrimination by Pulling Together": LGBTQI Cancer Patient and Carer Experiences of Minority Stress and Social Support.

Background: Lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI) people with cancer and their carers report poorer psychological outcomes than the general non-LGBTQI cancer population. There is growing acknowledgement that these health inequities can be explained by minority stress, which can be buffered by social support. Study Aim: To examine subjective experiences of minority stress and social support for LGBTQI people with cancer and their carers, drawing on qualitative findings from the Out with Cancer study. Method: An online survey including open ended items was completed by 430 LGBTQI cancer patients and 132 partners and other carers, representing a range of tumor types, sexual and gender identities, age and intersex status. A sub-sample of 104 patients and 31 carers completed an interview, with a follow-up photovoice activity and second interview completed by 45 patients and 10 carers. Data was thematically analysed using an intersectional theoretical framework. Results: Historical and present-day experiences of discrimination, violence, family rejection and exclusion created a legacy of distress and fear. This impacted on trust of healthcare professionals and contributed to distress and unmet needs in cancer survivorship and care. Social support, often provided by partners and other chosen family, including intimate partners and other LGBTQI people, buffered the negative impacts of minority stress, helping LGBTQI patients deal with cancer. However, some participants lacked support due to not having a partner, rejection from family of origin and lack of support within LGBTQI communities, increasing vulnerability to poor psychological wellbeing. Despite the chronic, cumulative impacts of minority stress, LGBTQI patients and carers were not passive recipients of discriminatory and exclusion in cancer care, demonstrating agency and resistance through collective action and advocacy. Conclusion: LGBTQI people have unique socio-political histories and present-day psycho-social experiences that contribute to distress during cancer. Social support serves to buffer and ameliorate this distress. There is a need for cancer healthcare professionals and support services to be aware of and responsive to these potential vulnerabilities, including the intersectional differences in experiences of minority stress and social support. There is also a need for recognition and facilitation of social support among LGBTQI people with cancer and their carers.

What helps distressed Australian adolescents impacted by cancer? Mechanisms of improvement of the PEER program.

PEER is a four-day residential program for adolescents impacted by their own or a relative's cancer, with both psychosocial (acceptance and commitment therapy, self-compassion) and recreational components. This study aimed to determine whether previously observed improvements in quality of life amongst highly distressed participants were mediated by improvements in processes targeted by psychotherapeutic elements of the program (psychological flexibility, mindfulness, self-compassion, peer support, distress). Adolescents attending PEER completed surveys assessing the quality of life and proposed mediator variables at pre-program, post-program and two-month follow-up. Adolescents experiencing high/very high levels of baseline distress (n = 52; 5 patients/survivors, 31 siblings/offspring, 13 bereaved siblings/offspring) were previously identified as experiencing clinically significant improvements in psychosocial well-being; here, mediation analyses explored whether these improvements were associated with improvements in process variables. Findings evidenced improvements in quality of life amongst distressed PEER participants, mediated by increases in psychological flexibility and self-compassion, and reductions in distress. Peer support and mindfulness were not significant mediators. Together, this suggests that the psychosocial benefits of PEER observed for highly distressed adolescents are linked to the specific therapeutic approaches used in the program, rather than being non-specific effects of peer connection or recreation. Findings from this evaluation provide further evidence for the efficacy and mechanisms of the effect of PEER for supporting distressed adolescents impacted by cancer. The study also demonstrates the viability and utility of the therapeutic approaches (acceptance and commitment therapy, self-compassion) used, showing that they have psychosocial benefits for this population.

LGBTQI Inclusive Cancer Care: A Discourse Analytic Study of Health Care Professional, Patient and Carer Perspectives.

Background: Awareness of the specific needs of LGBTQI cancer patients has led to calls for inclusivity, cultural competence, cultural safety and cultural humility in cancer care. Examination of oncology healthcare professionals' (HCP) perspectives is central to identifying barriers and facilitators to inclusive LGBTQI cancer care. Study Aim: This study examined oncology HCPs perspectives in relation to LGBTQI cancer care, and the implications of HCP perspectives and practices for LGBTQI patients and their caregivers. Method: 357 oncology HCPs in nursing (40%), medical (24%), allied health (19%) and leadership (11%) positions took part in a survey; 48 HCPs completed an interview. 430 LGBTQI patients, representing a range of tumor types, sexual and gender identities, age and intersex status, and 132 carers completed a survey, and 104 LGBTQI patients and 31 carers undertook an interview. Data were analysed using thematic discourse analysis. Results: Three HCP subject positions - ways of thinking and behaving in relation to the self and LGBTQI patients - were identified:'Inclusive and reflective' practitioners characterized LGBTQI patients as potentially vulnerable and offered inclusive care, drawing on an affirmative construction of LGBTQI health. This resulted in LGBTQI patients and their carers feeling safe and respected, willing to disclose sexual orientation and gender identity (SOGI) status, and satisfied with cancer care. 'Egalitarian practitioners' drew on discourses of ethical responsibility, positioning themselves as treating all patients the same, not seeing the relevance of SOGI information. This was associated with absence of LGBTQI-specific information, patient and carer anxiety about disclosure of SOGI, feelings of invisibility, and dissatisfaction with healthcare. 'Anti-inclusive' practitioners' expressed open hostility and prejudice towards LGBTQI patients, reflecting a cultural discourse of homophobia and transphobia. This was associated with patient and carer distress, feelings of negative judgement, and exclusion of same-gender partners. Conclusion: Derogatory views and descriptions of LGBTQI patients, and cis-normative practices need to be challenged, to ensure that HCPs offer inclusive and affirmative care. Building HCP's communicative competence to work with LGBTQI patients needs to become an essential part of basic training and ongoing professional development. Visible indicators of LGBTQI inclusivity are essential, alongside targeted resources and information for LGBTQI people.

The Clinical Utility of the Adolescent and Young Adult Psycho-Oncology Screening Tool (AYA-POST): Perspectives of AYA Cancer Patients and Healthcare Professionals.

Objective: Routine psychosocial screening and assessment of people diagnosed with cancer are crucial to the timely detection of distress and provision of tailored supportive care; however, appropriate screening tools have been lacking for adolescents and young adults (AYAs), who have unique needs and experiences. One exception is the recently validated AYA Psycho-Oncology Screening Tool (AYA-POST) for use with young people aged 15-29 years, which comprises a distress thermometer and age-specific needs assessment. This study investigates the clinical utility of this measure, as well as the subsequent service responsiveness within the Australian Youth Cancer Services. Method: In total, 118 AYAs and 29 healthcare professionals: (HCPs) completed surveys about the clinical utility of the AYA-POST; a subset of 30 AYAs completed a 3-month follow-up survey assessing service responsiveness. Descriptive statistics (frequencies/means) were computed for all items, with chi-square analyses used to explore whether perceived clinical utility varied with AYA age, AYA sex, HCP discipline or HCP length of time using the AYA-POST. Results: Participants' responses demonstrate high levels of satisfaction with the tool, evidencing its appropriateness, practicability and acceptability. Moreover, the AYA-POST was reported to facilitate communication about psychosocial needs and prompt referrals, indicating good service responsiveness. Ratings of clinical utility did not differ significantly between AYA and HCP groups. Conclusion: This study demonstrates that the AYA-POST is an appropriate tool in the psychosocial screening of AYAs with cancer, facilitating the identification of distress and unique concerns in this population and valuable in triaging and tailoring care for young cancer patients.

Attitudes, knowledge and practice behaviours of oncology health care professionals towards lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) patients and their carers: A mixed-methods study.

OBJECTIVE: There is growing recognition that health care professionals (HCPs) and policy makers are insufficiently equipped to provide culturally competent care to lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) cancer patients and their families. We examined HCP attitudes, knowledge, and practices regarding LGBTQI cancer care using a mixed-methods research design. METHOD: Surveys were completed by 357 oncology HCPs in nursing (40%), medical (24%), allied health (19%), and clinical leadership roles (11%); 48 of the surveyed HCPs were interviewed. RESULTS: Most HCPs reported being comfortable treating LGBTQI patients, but reported low levels of confidence and knowledge and systemic barriers to LGBTQI cancer care. Most wanted more education and training, particularly on trans and gender-diverse people (TGD) and those born with intersex variations. CONCLUSION: Education of HCPs and health system changes are required to overcome barriers to the provision of culturally competent cancer care for LGBTQI patients. PRACTICE IMPLICATIONS: These findings reinforce the need for inclusion of LGBTQI content in HCP education and professional training curricula, and institutional support for LGBTQI-inclusive practice behaviours. This includes administrative and visual cues to signal safety of LGBTQI patients within cancer care, facilitating inclusive environments, and the provision of tailored patient-centred care.

Interventions available to adolescents and young adults bereaved by familial cancer: a systematic literature review.

OBJECTIVES: To assess the availability and efficacy of interventions open to adolescents and young adults (AYAs; 15-25 years) bereaved by a parent's or sibling's cancer. METHODS: A systematic review of peer-reviewed literature on interventions available to AYAs bereaved by a parent's or sibling's cancer was conducted through searches of six online databases (PsycINFO, Medline, Scopus, Embase, SWAB and Web of Science Core Collection). RESULTS: Database and reference searches yielded 2985 articles, 40 of which were included in the review. Twenty-two interventions were identified that were available for bereaved young people. However, only three were specific to young people bereaved by familial cancer, and none were specific to AYAs. Interventions primarily provided opportunities for participants to have fun, share their experiences and/or memorialise the deceased; psychoeducation about bereavement, grief and coping was less common. Only six interventions had been satisfactorily evaluated, and no intervention targeted or analysed data for AYAs separately. Overall, some evidence suggested that interventions (especially those that were theoretically grounded) had positive effects for bereaved young people. However, benefits were inconsistently evidenced in participants' self-reports and often only applied to subgroups of participants (eg, older youths and those with better psychological well-being at baseline). CONCLUSIONS: Considering the very limited number of interventions specific to bereavement by familial cancer and the lack of interventions targeting AYAs specifically, it is unclear whether currently available interventions would benefit this population. The population of AYAs bereaved by familial cancer is clearly under-serviced; further development and evaluation of interventions is needed.

The Australian Youth Cancer Service: Developing and Monitoring the Activity of Nationally Coordinated Adolescent and Young Adult Cancer Care.

Adolescents and young adults (aged 15-25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016-17 and 2019-20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults.

Defending victims of cyberbullying: The role of self-efficacy and moral disengagement.

Cyberbullying is a significant problem worldwide that affects adolescents' social relations, academic achievement, and mental health. As this form of bullying is typically viewed by a large audience it is important to understand the role of observers as they may hold a key for reducing bullying. The aim of this study was to investigate the role of the socio-cognitive factors of defending self-efficacy (i.e., belief in one's capability to defend) and moral disengagement (i.e., justifications for aggressive behavior) associated with general cyber defending behavior and cyber defending response types: constructive and aggressive. Participants were 540 male and female students of diverse racial identity between the ages of 11 and 15 years who completed a questionnaire comprising multiple measures. Regression analyses revealed that at low levels of defending self-efficacy, moral disengagement was unrelated to general cyber defending behavior. However, at high levels of defending self-efficacy, moral disengagement was positively associated with general cyber defending. Further regression analyses revealed that the results for constructive cyber defending were the inverse of those obtained for aggressive defending. Defending self-efficacy was positively associated with constructive defending and negatively associated with aggressive defending. Moral disengagement was negatively associated with constructive defending and positively associated with aggressive defending. These results address the perplexing issue of why moral disengagement has been related to defending in some studies and not in others. As with most measures of defending, the general cyber defending measure confounds constructive and aggressive defending.

Initial validation of a needs instrument for young people bereaved by familial cancer.

OBJECTIVE: This study aimed to validate the Bereaved Cancer Needs Instrument (BCNI), an instrument designed to assess the unmet psychosocial needs of adolescents and young adults (AYAs, 12-25 years) who have experienced the death of a parent or sibling to cancer. METHODS: In total, 335 participants aged 12 to 25 (M = 15.80, SD = 3.32) who had experienced the death of a parent (N = 297) or sibling (N = 38) from cancer took part in this study. Participants completed the BCNI, the Kessler-10 psychological distress scale (K10), and several items assessing the acceptability of the BCNI. RESULTS: Exploratory factor analysis indicated that a seven-factor structure best fit the BCNI, accounting for 56.65% of the variance in unmet psychosocial needs of cancer-bereaved AYAs. The measure had good psychometric properties, high levels of internal consistency for all domains, and correlated strongly with the K10 (r = .59, p < .001). Item response theory analysis demonstrated that the response scale was appropriate, with strong discrimination indices. Analyses also indicated the potential to reduce the BCNI from 58 items to a 37-item short-form, although this will require further validation. CONCLUSIONS: The BCNI is the first psychometrically validated instrument to identify the unmet psychosocial needs of bereaved AYAs who have experienced the death of a parent or sibling to cancer. The instrument can be used in research and health care settings to identify the unmet needs of young people bereaved by cancer and provide targeted support to reduce psychological distress.

Understanding and Improving Survivorship Care for Adolescents and Young Adults with Cancer.

Purpose: To explore and highlight the opportunities and challenges that underlie the development of survivorship care for adolescent and young adult cancer. Methods: A multimethod approach was used, with perspectives of survivors, relatives, and health care professionals elicited through an online survey, focus group, and semistructured interviews. Results: Four themes were identified using thematic analysis: adjusting to life after cancer, transition to community-based care, ongoing change and reform of health care, and supporting survivorship services. Adolescents and young adults (AYAs) and their families struggled with the transition from active treatment, which was complicated by ongoing disease/treatment impacts and a collective dearth of knowledge and resources on how to support AYAs during this time. Limited confidence and communication in patient-general practitioner relationships complicated the transition to community-based care, with treatment summaries and survivorship care plans an underused resource. A growing movement toward integrated, holistic, and equitable survivorship care was identified, but progress has been fragmented and under-resourced. Further research, funding, and advocacy are needed to support ongoing survivorship initiatives. Conclusions: Although some survivorship concerns are common across age groups, others are specific to AYAs' developmental stage, emphasizing the need for integrated, age-appropriate, and targeted survivorship services for AYAs. The transition from active treatment to longer term survivorship presents challenges for ongoing clinical care and support; change is needed at individual, service, and system levels to provide quality, sustainable, and integrated care to AYA cancer survivors.

An invisible patient: Healthcare professionals' perspectives on caring for adolescents and young adults who have a sibling with cancer.

The impact of a young person's cancer diagnosis extends to siblings, yet support services to address siblings' needs are limited. This study explores healthcare professionals' (HCPs') perspectives on engaging and supporting adolescent and young adult (AYA, 12-25 years) siblings of young cancer patients in hospital settings. Semi-structured interviews with nine HCPs explored participants' views on models of care, engagement and assessment of siblings, available services, barriers to care, and future directions. Participants understood the impact of cancer and need to support AYA siblings, but were unclear how these responsibilities fit in with existing models of care and clinical roles. Siblings' absence from hospitals complicated processes of engagement, assessment and provision of care, challenging some participants to engage siblings outside the clinical context. In the absence of direct contact, HCPs largely relied on patients and parents to report or refer siblings for care. Service and resource limitations further restricted the provision of support to siblings. Despite HCPs' recognition of the need to support siblings, their "invisibility," lack of standardised assessment and service constraints complicate the provision of care in hospital settings. Integrating hospital-based care with community services may better facilitate the engagement and support of AYA siblings.

General practitioners' management of cancers in Australian adolescents and young adults.

General practitioners (GPs) are often the first point of contact adolescents and young adults (AYAs, aged 10-29) with cancer have with the health system, and they are well-placed to coordinate their complex medical and psychosocial care. This study is the first to report characteristics of patients, GPs and cancers involved in AYA cancer management consultations in Australia, using data from a nationally representative sample of 972,100 patient-GP encounters in 2006-2016. AYA cancers were managed in 212 encounters, equating to approximately 137 per 100,000 AYA consultations. This rate was higher in older AYAs (25-29 years) and those who held a concession card. Approximately 30% of cancers managed were classified as "new", with GPs primarily providing counselling, education, and referrals to specialist care, imaging and pathology. This suggests that GPs are involved in the ongoing care of AYAs with cancer from diagnosis, in conjunction with other healthcare professionals. This is an encouraging indication of the potential for integrated multidisciplinary care extending from active treatment into survivorship; however, further work is needed to explore the changing role of GPs across the cancer trajectory.

Australian Adolescents and Young Adults-Trends in Cancer Incidence, Mortality, and Survival Over Three Decades.

PURPOSE: Cancer is a significant health concern for adolescents and young adults (AYAs; aged 15-24 years). Monitoring population-level changes in incidence, mortality, and survival is complicated by the lack of published data presenting statistics separately for AYAs. This study synthesizes and reviews data on AYA cancers in Australia, including trends in incidence and mortality. METHODS: National data were extracted for 1980-2012, primarily from the Australian Cancer Database and Australian National Mortality Database. Incidence, mortality, and survival trends are described, and incidence and mortality projections are reported. RESULTS: In 2000-2009, the annual all-cancer incidence was 31.7 cases per 100,000 population, and the mortality rate was 4.1 per 100,000. Incidence, mortality, and survival varied widely, indicating areas of concern. Melanoma was the most common cancer, and bone cancer had the highest mortality and poorest survival rates. All-cancer incidence rates peaked in the late 1990s, but then declined, largely due to melanoma. All-cancer mortality decreased throughout the study period, but showed no improvements for some common sites (i.e., brain, bone, soft tissue). Further reductions in all-cancer incidence and mortality are projected for the next decade, although specific cancers (colorectal cancers and lymphomas) were projected to increase in incidence. CONCLUSIONS: Observed Australian cancer trends are largely consistent with trends for other high-income populations. While overall decreases in incidence and mortality are encouraging, consistently high mortality and poor survival for some cancers remain concerning. Planned data initiatives for AYAs with cancer will aid in resolving whether trends continue and projections are realized in the future.

How does parental cancer affect adolescent and young adult offspring? A systematic review.

OBJECTIVES: To i) identify and synthesise evidence published since 2007 regarding the impact of parental cancer on adolescent and young adult offspring, ii) identify methodological and evidence gaps addressed during this period and iii) highlight those requiring further attention. DESIGN: A systematic review and thematic synthesis of peer reviewed literature regarding the impact of parental cancer upon AYA offspring. DATA SOURCES: Online searches of CINAHL, Embase, Medline, PsychInfo and Scopus databases were conducted. Reference lists of included articles were screened and additional searches by prominent authors were performed. REVIEW METHODS: Study selection, data extraction and quality analysis was undertaken by three independent researchers. Extracted study data was iteratively reviewed and discussed to achieve consensus regarding thematic synthesis of included studies. RESULTS: Database and hand-searching yielded 1730 articles, 54 of which were included in the final synthesis. Included studies are discussed with respect to the following themes: i) study design and quality; ii) measurement and sampling; iii) positive and negative aspects of parental cancer; iv) needs; v) communication and information; vi) coping strategies; vii) interventions; and viii) family functioning and other predictors. Twenty-nine studies reported negative impacts related to parental cancer, while eight identified positive outcomes related to post-traumatic growth. Five returned null or mixed findings. Unmet needs were frequently explored and a new validated measure developed. Communication and information were particularly important for offspring, though these needs were often unmet and parents wanted guidance regarding discussions with their children. Offspring may adopt a variety of coping strategies, some of which appear maladaptive, and may cycle between different approaches. Few evaluations of interventions were identified, and further work in this area is needed. Further evidence has emerged that poorer family functioning and other family and illness-related factors predict worse psychosocial outcomes for offspring, however evidence for other predictors such as age and gender remain mixed. CONCLUSIONS: Additional evidence for the negative psychosocial impact of parental cancer on adolescent and young adult offspring, their needs, and factors predicting psychosocial outcomes has emerged in the last decade. However, substantial gaps and methodological issues remain and evidence for the development, efficacy or implementation of interventions for this population is very limited. There is also a clear need for greater focus on bereaved and young adult offspring and those from non-western cultural groups, who remain under-represented in research conducted to date.