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Background: Family or friend carers of people with cancer report high levels of depression, anxiety, caregiving strain, and unmet needs. Limited strategies for identification and management of distress have been established among cancer carers. This paper describes the protocol of two linked studies: Study 1a, a distress screening and stepped care pathway feasibility study and Study 1b, a hybrid implementation-effectiveness Randomised Controlled Trial (RCT) to assess the benefit of a comprehensive, carer-centred online Cognitive Behavioural Therapy (iCBT) program for carers with anxiety and depression., Methods: For Study 1a, 300 cancer carers will be screened for distress. Carers with low distress will be referred to publicly available carer resources. Carers scoring 4 and higher on the distress thermometer will complete depression and anxiety measures. Carers with high anxiety/depression will be recommended psychological therapy. Carers with mild/moderate anxiety and/or depression will be allocated to the Carers iCBT Program, evaluated via a RCT with waitlist control group (Study 1b). For Study 1b, intervention group carers will receive access to a 6-lesson self-directed online iCBT program. Waitlist-controls will access the intervention at 14 weeks. Intervention and control groups will complete baseline, 6 week, and 14 week self-report measures; controls will complete additional measures at 20 and 28 weeks. A sample size of n = 166 carers in the iCBT RCT is needed., Conclusions: If acceptable, feasible and effective, this pathway and iCBT intervention could offer a sustainable, scalable and low-cost approach to identifying and managing distress in carers, and potentially improving patient and carer outcomes., Trial Registration: Australian and New Zealand Clinical Trial Registry number: ACTRN12623001341617p., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: While there is a clear need for psychosocial interventions that promote the well-being of carers of patients with cancer, the corresponding evidence base is disparate, complex, and difficult for end users to navigate and interpret. Carers remain undersupported with a lack of dedicated, effective, evidence-based programs. We will conduct a meta-review to synthesize this evidence and determine the state of science in this field., Objective: This study aims to address the question, "what psychosocial interventions are available to promote the well-being of carers for people with cancer?", Methods: A meta-review will synthesize the relevant reviews of psychosocial interventions that have been developed and evaluated with carers for people with cancer. A total of 4 electronic databases (PsycInfo, MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews) will be searched for reviews published between January 2013 and December 2023. A team-based approach will be taken for screening and assessment of the returned records against the eligibility criteria to determine inclusion. Included reviews will be critically appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Systematic Reviews and Research Syntheses. Relevant data on study characteristics, carer and patient populations, intervention details, and psychosocial outcomes will be extracted, synthesized, and the findings will be presented in a narrative format., Results: It is anticipated that the study will be completed by October 2024., Conclusions: Ensuring that carers have access to evidence-based programs that promote their well-being as they care for loved ones is critical. This meta-review will contribute to program development and translation efforts by providing a clear picture of the intervention evidence base of carers of patients with cancer and identifying notable strengths, weaknesses, and gaps across the literature. The findings are anticipated to offer future directions to advance research in the field., Trial Registration: PROSPERO (CRD42023403219); https://tinyurl.com/4tnzv49s., International Registered Report Identifier (irrid): DERR1-10.2196/56403., (©Brona Nic Giolla Easpaig, Bronwyn Newman, Judith Johnson, Rebekah Laidsaar-Powell, Ursula M Sansom-Daly, Lucy Jones, Lukas Hofstätter, Eden G Robertson, Stephen Mears, Kabir Sattarshetty, Reema Harrison. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 13.09.2024.)

Background: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill-equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers., Objective: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO-pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting., Methods: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including "think-aloud" interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3)., Results: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small "snackable" sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface., Conclusions: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care., (©Rebekah Laidsaar-Powell, Sarah Giunta, Phyllis Butow, Rachael Keast, Bogda Koczwara, Judy Kay, Michael Jefford, Sandra Turner, Christobel Saunders, Penelope Schofield, Frances Boyle, Patsy Yates, Kate White, Annie Miller, Zoe Butt, Melanie Bonnaudet, Ilona Juraskova. Originally published in JMIR Medical Education (https://mededu.jmir.org), 17.04.2024.)

Background: Improved survival means that cancer is increasingly becoming a chronic disease. Understanding and improving functional outcomes are critical to optimising survivorship. We quantified physical and mental health-related outcomes in people with versus without cancer, according to cancer type., Methods: Questionnaire data from an Australian population-based cohort study (45 and Up Study (n = 267,153)) were linked to cancer registration data to ascertain cancer diagnoses up to enrolment. Modified Poisson regression estimated age- and sex-adjusted prevalence ratios (PRs) for adverse person-centred outcomes-severe physical functional limitations (disability), moderate/high psychological distress and fair/poor quality of life (QoL)-in participants with versus without cancer, for 13 cancer types., Results: Compared to participants without cancer (n = 244,000), cancer survivors (n = 22,505) had greater disability (20.6% versus 12.6%, respectively, PR = 1.28, 95%CI = (1.25-1.32)), psychological (22.2% versus 23.5%, 1.05 (1.02-1.08)) and poor/fair QoL (15.2% versus 10.2%; 1.28 (1.24-1.32)). The outcomes varied by cancer type, being worse for multiple myeloma (PRs versus participants without cancer for disability 3.10, 2.56-3.77; distress 1.53, 1.20-1.96; poor/fair QoL 2.40, 1.87-3.07), lung cancer (disability 2.81, 2.50-3.15; distress 1.67, 1.46-1.92; poor/fair QoL 2.53, 2.21-2.91) and non-Hodgkin's lymphoma (disability 1.56, 1.37-1.78; distress 1.20, 1.05-1.36; poor/fair QoL 1.66, 1.44-1.92) and closer to those in people without cancer for breast cancer (disability 1.23, 1.16-1.32; distress 0.95, 0.90-1.01; poor/fair QoL 1.15, 1.05-1.25), prostate cancer (disability 1.11, 1.04-1.19; distress 1.09, 1.02-1.15; poor/fair QoL 1.15, 1.08-1.23) and melanoma (disability 1.02, 0.94-1.10; distress 0.96, 0.89-1.03; poor/fair QoL 0.92, 0.83-1.01). Outcomes were worse with recent diagnosis and treatment and advanced stage. Physical disability in cancer survivors was greater in all population subgroups examined and was a major contributor to adverse distress and QoL outcomes., Conclusions: Physical disability, distress and reduced QoL are common after cancer and vary according to cancer type suggesting priority areas for research, and care and support.

Purpose: Returning to work (RTW) after cancer treatment can be challenging, but when desired, has many benefits. While there are many qualitative studies (reviews and recent studies) available on cancer survivors' experience of returning to work, synthesis of these qualitative studies is lacking. We aimed to summarise the existing qualitative reviews and recent studies following the last published review, to examine cancer survivors' motivations for and experiences of RTW, and to highlight factors within both the survivors and his or her environment that influence RTW., Method: A set of systematic reviews focusing on RTW were identified. A systematic search for individual papers published on RTW since the last review was also completed. Data extraction and bias assessment were conducted, with 25% double-coded to ensure reliability. A meta-ethnographic approach was utilised to synthesise the findings of each., Results: Seven systematic reviews and 12 individual papers between 2017 and 2019 were identified. Quality was variable. Most reviews and studies focused on women with breast cancer. Three major themes were identified: person factors, employment factors and wider contextual factors including family, social and cultural variables., Conclusions: We identified gaps in research on the RTW experiences of people with cancers other than breast, men, those with low incomes and more diverse populations., Implications for Cancer Survivors: Cancer survivors need to consider personal, employer and wider contextual factors when deciding whether and when to RTW. Future interventions to support survivors should be informed by these findings, addressing the diverse range of potential factors related to RTW in an individual survivor.

Purpose: The number of qualitative studies exploring cancer survivor experiences has significantly increased in recent years, with a large number of systematic reviews now published. This meta-review (systematic review of systematic reviews) aimed to assess the evidence base-summarising existing qualitative findings and identifying gaps for further research., Methods: Systematic reviews published from 1950 to 2018 were identified via database searches (MEDLINE, Embase, CINAHL, PsycINFO). Two authors assessed eligibility and extracted data. Review quality was assessed using the JBI Critical Appraisal Checklist for Systematic Reviews., Results: A total of 1465 titles were retrieved, and 60 reviews were included in the final review. All included reviews were conducted between 1998 and 2018. Whilst many reviews included mixed cancer types (21), the majority included only one cancer type (breast (19), gynaecological (10), prostate (5), haematological (2), colorectal (1), bladder (1) and melanoma (1)). Reviews focused on several survivorship topic areas including quality of life, experiences of survivors from ethnic minorities, returning to work and experiences of survivorship healthcare services. Less frequently reviewed topics included fertility, body image, coping strategies and spirituality., Conclusions: This meta-review provides insight into the areas of research density and paucity. Breast and gynaecological cancer survivors are strongly represented. Gaps in synthesis include reviews for other common cancers (e.g. lung, colorectal, melanoma, haematological) as well as survivorship topic areas such as side/late effects, psychological issues, financial toxicity and health behaviours., Implications for Cancer Survivors: Qualitative research into cancer survivor experiences can guide intervention development, as well as provide survivors with insight into the experiences and challenges faced by others with cancer.

Objective: Family caregivers regularly attend medical consultations and are often involved in decision-making; however, there are few practical strategies to guide effective communication for the clinician-patient-family trio. We aimed to develop and evaluate the first comprehensive guidelines for oncology physicians and nurses, on how to positively and effectively involve family caregivers of adult patients in consultations and patient care (TRIO Guidelines-1) and how to manage challenging interactions with family caregivers (TRIO Guidelines-2)., Methods: The TRIO Guidelines were based on a comprehensive literature review and input from an expert advisory group (n = 10). They underwent two rounds of formal evaluation via an online Delphi consensus process involving international experts (n = 35), and a subset were piloted with 24 breast cancer clinicians in a workshop format., Results: TRIO Guidelines-1 incorporate strategies and sub-strategies on facilitating collaborative and effective family involvement (6 topics). Example wording, behaviours, and level of evidence are provided throughout. All 24 clinicians rated the guidelines as helpful after the pilot workshop., Conclusion: These guidelines will be a useful educational tool for clinicians and medical/nursing students., Practice Implications: By equipping clinicians with strategies to facilitate effective and collaborative family engagement, the TRIO Guidelines have the potential to transform communication in clinical practice., (Copyright © 2018 Elsevier B.V. All rights reserved.)

Objective: Family caregivers can, at times, add complexity to clinical encounters. Difficult family caregivers and dynamics may: derail consultation communication, reduce patient autonomy, and compromise effective clinical care. A paucity of practical strategies guiding effective clinician-family communication exists. This study aimed to develop and evaluate the first comprehensive, evidence-based guidelines (the TRIO guidelines) for oncology physicians and nurses to better manage several complex/challenging situations involving family members., Methods: TRIO Guidelines were based on a comprehensive review of literature, relevant guidelines, and feedback from an expert advisory group (n = 10). Draft guidelines underwent two rounds of evaluation via an online Delphi consensus process involving international experts (n = 35)., Results: Guidelines incorporate topic areas, strategies, and sub-strategies on managing challenging family involvement (7 topics). Example wording, behaviours and level of evidence are provided., Conclusion: Challenging triadic interactions require skillful navigation, and the TRIO Guidelines provide clear, specific, and evidence-based strategies for clinicians to utilise in these potentially stressful encounters. Training based on these guidelines may improve both patient care and clinician confidence., Practice Implications: Implementation of these guidelines into medical/nursing curricula and as a component of continuing professional development programs will likely be highly beneficial., (Copyright © 2018 Elsevier B.V. All rights reserved.)

Objective: Family caregivers are regularly involved in cancer consultations and treatment decision-making (DM). Yet there is limited conceptual description of caregiver influence/involvement in DM. To address this, an empirically-grounded conceptual framework of triadic DM (TRIO Framework) and corresponding graphical aid (TRIO Triangle) were developed., Methods: Jabareen's model for conceptual framework development informed multiple phases of development/validation, incorporation of empirical research and theory, and iterative revisions by an expert advisory group., Results: Findings coalesced into six empirically-grounded conceptual insights: i) Caregiver influence over a decision is variable amongst different groups; ii) Caregiver influence is variable within the one triad over time; iii) Caregivers are involved in various ways in the wider DM process; iv) DM is not only amongst three, but can occur among wider social networks; v) Many factors may affect the form and extent of caregiver involvement in DM; vi) Caregiver influence over, and involvement in, DM is linked to their everyday involvement in illness care/management., Conclusion: The TRIO Framework/Triangle may serve as a useful guide for future empirical, ethical and/or theoretical work., Practice Implications: This Framework can deepen clinicians's and researcher's understanding of the diverse and varying scope of caregiver involvement and influence in DM., (Copyright © 2017 Elsevier B.V. All rights reserved.)

Purpose: Family members (FMs) often provide support to patients, regularly attend cancer consultations and are often involved in medical decision-making. Limited research has been conducted to date to understand patients' and FMs' perceptions about family involvement in cancer consultations. Therefore, this study aimed to qualitatively explore the attitudes and experiences of Australian cancer patients and FMs regarding (1) family attendance at consultations, (2) family roles in consultations and (3) the challenges of family involvement., Methods: Thirty patients and 33 FMs, recruited through either a tertiary metropolitan oncology clinic or national cancer patient advocacy group, participated in semi-structured interviews. Interviews were transcribed and qualitatively analysed using Framework analysis methods., Results: Four relevant themes were identified: (1) negotiating family involvement, (2) attitudes towards the roles FMs assume, (3) challenges of family involvement and (4) family-clinician interactions. Overall, patients appreciated family involvement and valued FMs' provision of emotional and informational support, and FMs also found benefit from participating in consultations. Some patients appreciated their FM assuming the role of 'messenger' between the consultation and extended family. However, a number of challenges were also reported by patients (e.g. maintaining privacy, mismatched patient-family information needs) and FMs (e.g. emotional toll of supportive roles, negative behaviours of clinicians towards FMs)., Conclusions: FMs appear to make valuable contributions to cancer consultations, and their presence can benefit both the patient and the FM themselves in many ways. However, for some FMs, attending consultations can be challenging. Study findings point to the need for psychosocial support addressing FMs' needs and the development of communication strategies for oncology clinicians to positively engage with FMs. Further research is needed in these areas.

Objective: Little is known about how family are involved in cancer treatment decision-making. This study aimed to qualitatively explore Australian oncology clinicians', patients', and family members' attitudes towards, and experiences of, family involvement in decision-making., Methods: Semi-structured interviews were conducted with 30 cancer patients, 33 family members, 10 oncology nurses and 11 oncologists. Framework analysis methods were used., Results: Three main themes were uncovered: (i) how family are involved in the decision-making process: specific behaviours of family across 5 (extended) decision-making stages; (ii) attitudes towards family involvement in the decision-making process: balancing patient authority with the rights of the family; and (iii) factors influencing family involvement: patient, family, cultural, relationship, and decision., Conclusion: This study highlighted many specific behaviours of family throughout the decision-making process, the complex participant attitudes toward retaining patient authority whilst including the family, and insight into influencing factors. These findings will inform a conceptual framework describing family involvement in decision-making., Practice Implications: Clinicians could ascertain participant preferences and remain open to the varying forms of family involvement in decision-making. Given the important role of family in the decision-making process, family inclusive consultation strategies are needed., (Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.)

Background: Family members (FMs) regularly attend oncology consultations. However, limited studies have assessed actual behaviours of oncologists, patients and FMs - particularly during decision-making. The current study aimed the following: (i) to rigorously develop a family (kin) interaction coding system (KINcode) capturing communication and decision-making behaviours of FMs and family-relevant behaviours of oncologists and patients and (ii) to apply KINcode to initial oncology consultations., Methods: The 80-item KINcode system was developed and applied to 72 transcripts of audiotaped medical/radiation oncology consultations including an FM, collected as part of two previous studies., Results: The role of the FM varied considerably within the one encounter, with 33% of FMs assuming three or more roles across the four consultation stages. Whilst most FMs asked treatment decision questions (71%), a minority engaged in other behaviours such as prompting patient questions (4%) or providing information relevant to the decision to the oncologist (18%). Although oncologists rarely initiated interaction with FMs such as in rapport building (18%) or asking FMs questions (25%), they were typically fully responsive to FM questions (90%). Many patients asked their FM a question (42%), but few elicited the FM's decision preferences (4%)., Conclusions: This study provides novel insights into the complex nature of family involvement. The findings highlight potentially positive FM-focused consultation behaviours such as oncologist responsiveness to family questions and potential areas for improvement such as rapport building, invitation of questions and validation of the family's role. Family-specific communication skills training should be considered in medical student and professional education settings. Copyright © 2015 John Wiley & Sons, Ltd., (Copyright © 2015 John Wiley & Sons, Ltd.)