Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers.

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.

eTRIO trial: study protocol of a randomised controlled trial of online education modules to facilitate effective family caregiver involvement in oncology.

OBJECTIVE: Informal family caregivers play a crucial role in cancer care. Effective caregiver involvement in cancer care can improve both patient and caregiver outcomes. Despite this, interventions improving the caregiver involvement are sparse. This protocol describes a randomised controlled trial evaluating the combined effectiveness of novel online caregiver communication education modules for: (1) oncology clinicians (eTRIO) and (2) patients with cancer and caregivers (eTRIO-pc). METHODS AND ANALYSIS: Thirty medical/radiation/surgical oncology or haematology doctors and nurses will be randomly allocated to either intervention (eTRIO) or control (an Australian State Government Health website on caregivers) education conditions. Following completion of education, each clinician will recruit nine patient-caregiver pairs, who will be allocated to the same condition as their recruiting clinician. Eligibility includes any new adult patient diagnosed with any type/stage cancer attending consultations with a caregiver. Approximately 270 patient-caregiver pairs will be recruited. The primary outcome is caregiver self-efficacy in triadic (clinician-patient-caregiver) communication. Patient and clinician self-efficacy in triadic communication are secondary outcomes. Additional secondary outcomes for clinicians include preferences for caregiver involvement, perceived module usability/acceptability, analysis of module use, satisfaction with the module, knowledge of strategies and feedback interviews. Secondary outcomes for caregivers and patients include preferences for caregiver involvement, satisfaction with clinician communication, distress, quality of life, healthcare expenditure, perceived module usability/acceptability and analysis of module use. A subset of patients and caregivers will complete feedback interviews. Secondary outcomes for caregivers include preparedness for caregiving, patient-caregiver communication and caring experience. Assessments will be conducted at baseline, and 1 week, 12 weeks and 26 weeks post-intervention. ETHICS AND DISSEMINATION: Ethical approval has been received by the Sydney Local Health District Human Research Ethics Committee (REGIS project ID number: 2019/PID09787), with site-specific approval from each recruitment site. Protocol V.7 (dated 1 September 2020) is currently approved and reported in this manuscript. Findings will be disseminated via presentations and peer-reviewed publications. Engagement with clinicians, media, government, consumers and peak cancer groups will facilitate widespread dissemination and long-term availability of the educational modules. TRIAL REGISTRATION NUMBER: ACTRN12619001507178.

Improving breast cancer nurses' management of challenging situations involving family carers: Pilot evaluation of a brief targeted online education module (TRIO-Conflict).

OBJECTIVE: Given the stressful and emotional nature of cancer, challenging interactions between nurses, patients, and family frequently occur. Nurses are rarely equipped with strategies to avoid or de-escalate stressful situations with carers, which can include displays of conflict, anger, or dominance. A brief online education module (TRIO-Conflict) was developed to provide nurses with management strategies to use in situations of conflict. This study aimed to assess the feasibility, acceptability, and potential efficacy of TRIO-Conflict. METHODS: Nurses were recruited through an Australian breast cancer organisation (McGrath Foundation). Participants completed pre/post module measures of attitudes towards carers, confidence in their skills to effectively navigate challenging interactions with carers, and applied knowledge of management strategies. Data were analysed using Wilcoxon signed-rank tests. Qualitative feedback was analysed using content analysis. RESULTS: 52 nurses completed pre-/post- measures, with 4 semi-structured interviews conducted. Significant improvements in attitudes towards carers (p = .010) and confidence in one's own ability to manage challenging interactions with carers (p < .001) were found, but not knowledge of strategies. Most nurses found TRIO-Conflict very/extremely helpful (87%) and were satisfied with content (94%) and usability (93%). CONCLUSION: TRIO-Conflict utilised evidence-based learning techniques (provision of example phrases, video vignettes, reflective exercises) to improve nurses attitudes and confidence. PRACTICE IMPLICATIONS: TRIO-Conflict is a brief, targeted, clinically relevant, and easily accessible online training programme which could be widely disseminated to oncology nurses.

Improving treatment decision-making in bipolar II disorder: a phase II randomised controlled trial of an online patient decision-aid.

BACKGROUND: Many patients with bipolar II disorder (BPII) prefer to be more informed and involved in their treatment decision-making than they currently are. Limited knowledge and involvement in one's treatment is also likely to compromise optimal BPII management. This Phase II RCT aimed to evaluate the acceptability, feasibility, and safety of a world-first patient decision-aid website (e-DA) to improve treatment decision-making regarding options for relapse prevention in BPII. The e-DA's potential efficacy in terms of improving quality of the decision-making process and quality of the decision made was also explored. METHODS: The e-DA was based on International Patient Decision-Aid Standards and developed via an iterative co-design process. Adults with BPII diagnosis (n = 352) were recruited through a specialist outpatient clinical service and the social media of leading mental health organisations. Participants were randomised (1:1) to receive standard information with/without the e-DA (Intervention versus Control). At baseline (T0), post-treatment decision (T1) and at 3 months' post-decision follow-up (T2), participants completed a series of validated and purpose-designed questionnaires. Self-report and analytics data assessed the acceptability (e.g., perceived ease-of-use, usefulness; completed by Intervention participants only), safety (i.e., self-reported bipolar and/or anxiety symptoms), and feasibility of using the e-DA (% accessed). For all participants, questionnaires assessed constructs related to quality of the decision-making process (e.g., decisional conflict) and quality of the decision made (e.g., knowledge of treatment options and outcomes). RESULTS: Intervention participants endorsed the e-DA as acceptable and feasible to use (82.1-94.6% item agreement); most self-reported using the e-DA either selectively (51.8%; relevant sections only) or thoroughly (34%). Exploratory analyses indicated the e-DA's potential efficacy to improve decision-making quality; most between-group standardised mean differences (SMD) were small-to-moderate. The largest potential effects were detected for objective treatment knowledge (- 0.69, 95% CIs - 1.04, - 0.33 at T1; and - 0.57, 95% CIs - 0.99,-0.14 at T2), decisional regret at T2 (0.42, 95% CIs 0.01, 0.84), preparation for decision-making at T1 (- 0.44, 95% CIs - 0.81, - 0.07), and the Decisional Conflict Scale Uncertainty subscale (0.42, 95% CIs 0.08, 0.08) and Total (0.36, 95% CIs 0.30, 0.69) scores, with all SMDs favouring the Intervention over the Control conditions. Regarding safety, e-DA use was not associated with worse bipolar symptoms or anxiety. CONCLUSION: The e-DA appears to be acceptable, feasible, safe and potentially efficacious at improving patients' decision-making about BPII treatment. Findings also support the future adoption of the e-DA into patient care for BPII to foster treatment decisions based on the best available evidence and patient preferences. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12617000840381 (prospectively registered 07/06/2017).

Online resources for family caregivers of cognitively competent patients: A review of user-driven reputable health website content on caregiver communication with health professionals.

OBJECTIVE: Most patients want their family involved in consultations and decisions, however some family caregivers report feeling overwhelmed and unsure of their role. As caregivers are increasingly looking to medical websites for guidance, this study aimed to review reputable web-resources available to inform family caregivers on how to be involved in medical consultations and decisions. METHODS: Google searches were performed using lay search strings, to imitate how a cancer caregiver may locate information. Relevant webpages were included if they were directed at caregivers and from a reputable health organisation. Qualitative content analyses were performed on the included webpages. RESULTS: 22 webpages were included and 8 were directed at caregivers of cancer patients. Six key categories of information were identified: preparing for consultations, helping during consultations, advocating for the patient, decision-making, communicating in hospital settings, and communicating with family and friends. CONCLUSION: A range of online resources were found to guide family caregivers, particularly cancer caregivers, on involvement in consultations. However, few provided information to caregivers on complex situations such as treatment decision-making, advocating for patient's needs, and communicating in a hospital setting. PRACTICE IMPLICATIONS: Clinicians can actively refer family caregivers to online resources that support caregiver communication in medical settings.

Exploring head and neck cancer patients' experiences with radiation therapy immobilisation masks: A qualitative study.

OBJECTIVE: Head and neck cancer (HNC) patients commonly undergo radiation therapy requiring immobilisation by a mask. Some find the mask distressing, and this can disrupt treatment sessions. This study aimed to explore the patient experience of immobilisation masks in the Australian and New Zealand (ANZ) context, to guide possible intervention. METHODS: Semi-structured interviews were conducted with HNC patients who had completed radiation therapy, recruited via hospitals and social media. Interviews continued until data saturation; then, three further interviews were conducted for member-checking purposes. Qualitative methodology with thematic analysis was used to identify themes in the data. RESULTS: Twenty HNC survivors participated in interviews, and seven themes were identified: information received by participants, potential predictors of mask anxiety, participant reactions to the mask, trajectories of mask anxiety, supportive behaviour and communication of health professionals, coping with the mask, and thoughts and feelings about the mask. CONCLUSIONS: Participant experiences of the immobilisation mask were diverse. The findings fit with Lazarus and Folkman's (Stress, appraisal, and coping. New York, NY: Springer Pub. Co) transactional model of stress and coping, as participants appeared to make cognitive appraisals of the mask and their coping abilities throughout treatment, resulting in varied levels of mask-related distress. Complex intervention is recommended to reduce mask anxiety in HNC patients across ANZ.