Facilitating Advance Care Planning Discussions Between Patients with Advanced Cancer and Their Family Caregivers Using a Resilience-Building Intervention

University Of Illinois At Chicago, Chicago IL

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Abstract

This project aims to assess the feasibility and preliminary efficacy of a web-based resilience-building intervention to address advance care planning (ACP) and dyadic coping among people with advanced cancer and their family caregivers. ACP is a process to facilitate decision-making for future medical care. Helping patients understand and communicate their values and goals with family caregivers can lead to care that aligns with patient wishes, reduce caregiver emotional burden, and improve patient satisfaction with end-of-life care and the quality of death. Avoidance of ACP can delay introduction of palliative and hospice care and lead to costly and aggressive goal-discordant care that also increases family caregivers’ anxiety and depression. Building resilience has shown promising results in reducing cancer distress and anxiety in adults with cancer and family caregivers. The rationale for the proposed web-based resilience-building intervention is that increasing resilience skills for ACP can empower patients and family caregivers to become aware of their resilience resources and use appropriate coping strategies to engage in ACP discussions and complete advance directives. Our preliminary qualitative data highlighted the characteristics of resilience needed during ACP discussions among people with cancer who have completed advance directives. Guided by this interview data and existing literature in positive psychology and dyadic intervention design, we developed a prototype of a web-based resilience-building intervention for patients with advanced cancer and their family caregivers. Participants with prior ACP experience endorsed the website for its simplicity, clarity, and ease of navigation without technical support and said that the intervention was easy to understand and helpful for facilitating ACP discussions and completing advance directives. Our next step is to assess the feasibility, acceptability, and usability of the intervention among 76 dyads of patients with advanced cancer and their family caregivers (Aim 1). We will conduct a randomized controlled trial in a cancer center setting to evaluate the preliminary efficacy of the intervention (n = 38 dyads) compared to usual care (n = 38 dyads) on changes in completion of advance directives (primary outcome) and on patient and caregiver resilience, optimism, dyadic communication and coping, knowledge, self-efficacy, anxiety, and depression (secondary outcomes) (Aim 2). We will conduct assessments at baseline and 8 weeks post-randomization. Finally, we will use the actor-partner interdependence model to explore the dyadic effects of resilience on self-efficacy, optimism, dyadic communication and coping, anxiety, and depression (Aim 3). The expected outcomes are demonstration of the web-based resilience-building intervention’s feasibility, acceptability, usability, and preliminary efficacy and data that provide a strong foundation for further implementation of the intervention for R01 applications and future research.