None listed
Conditions
Brief summary
Many cancer patients and families strive to maintain hope in the face of adversity. Thus discussions on future care should be timed to follow adjustment to the diagnosis, recognise the capacity to integrate hope with truthful communication, and accommodate the preferences from those who hold diverse values and beliefs. Our research program aims to promote a patient and family centred approach to ACP, respectful of individual patient preferences and values. We have previously described the iterative and dynamic nature of decision-making in cancer, the caregiver role in decision-making, the benefit of patient-caregiver dyads as an entity in ACP and introduced the vignette technique as an approach to facilitate discussions. More recently, innovative approaches such as the use of video decision support tools (VDST) have been used to elicit EOL care preferences. We aim to explore this novel way by modelling values-based EOL decision-making conversations between patient-caregiver dyads, to assist patients and their families to reach shared-decision making. We were awarded a Bethlehem Research Griffith Foundation Grant in 2018. To date 87 patient-caregiver dyads have been randomized to an intervention or control arm. Our preliminary statistical analysis suggest that we have to expand our sample size to ensure more meaningful outcomes
Interventions
1. Video vignettes will be developed from findings of our preliminary research into ACP in cancer patients and made into a 10-15 minute video. The video vignettes will depict scenarios of dyads communicating across three stages of a cancer trajectory, with each stage introducing considerations for the completion of different sections of an ACP (Medical Treatment Decision Maker, Statment of Values, Instructional Directives). A total of 6 vignettes will be created. Professional actors will be sour
1. Video vignettes will be developed from findings of our preliminary research into ACP in cancer patients and made into a 10-15 minute video. The video vignettes will depict scenarios of dyads communicating across three stages of a cancer trajectory, with each stage introducing considerations for the completion of different sections of an ACP (Medical Treatment Decision Maker, Statment of Values, Instructional Directives). A total of 6 vignettes will be created. Professional actors will be sourced from known professional college and university sources, and a pilot video will be created prior to the filming of the final videos. The video vignettes will be circulated to a multidisciplinary team for validation and approval and further editing before the final video intervention is created. 2. the sessions will be facilitated by a trained nurse and administered to patient-caregiver dyads – a patient with a diagnosis of incurable cancer and a nominated caregiver. In this study, caregivers are defined as a relative, partner, or friend who has a significant relationship with the patient and who provides them with social, psychological, and/or physical assistance. 3. The total duration of the intervention will be for 45 minutes. Participants will receive two telephone call prompts at two-week intervals following the intervention as a reminder to return the completed documents. 4. The project team will meet monthly to review the progress of the study. Adherence to the research protocol will be monitored throughout the study through field notes and diaries managed by the researchers. Protocol violations or operational issues will be discussed and resolved at project team meetings. The study steering committee will monitor the study and provide ongoing oversight into early results. If necessary, modifications of the study will be made.
Sponsors
Cabrini Foundation
Study design
Allocation
Randomised controlled trial
Intervention model
Parallel
Primary purpose
Educational / counselling / training
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
Patients • Patients with a diagnosis of cancer will be recruited from the oncology and palliative care services of Cabrini Health and the palliative care services of Calvary Bethlehem Hospital. • Participants will be aged at least 18 years • Sufficiently proficient in English to complete questionnaires • Cognitively intact • Not having previously completed all components of an ACP/AD • Able to provide consent Caregiver • Caregiver of a patient participant • Aged at least 18 years of age • Sufficiently proficient in English to complete questionnaires • Able to provide consent
Exclusion criteria
Patient • Too unwell to participate in the study as determined by the patient’s treating physician • Currently participating in more than 2 other studies in the hospital Caregiver • Known or demonstrated cognitive or psychological difficulties
Outcome results
None listed