Fighting Invisible Battles: The Ripple Effect of Mental Illness, Substance Abuse, and Familial Relationships

Although significant progress has been made regarding mental illness within recent years, systemic shortcomings from decades past have negatively impacted the lives of those living with mental illness and in turn, the family members that love and care for them. This session follows the life of a man with bipolar disorder, how factors relating to this diagnosis led him to substance abuse, and how his family helped him navigate the barriers he faced throughout the years. When fighting invisible battles, academia can be a powerful outlet for exploring personal struggles, and allows students to take control of their grief and contribute to causes that right the wrongs they were once witness to. Resources: National Alliance for Caregiving On Pins and Needles report: Safehouse Philadelphia Harm Reduction Action Center Submit a Question to Michell

Developing an Integrated Caregiver Patient-Portal System

We have developed an integrated caregiver patient-portal system (i.e., patient–caregiver portal) that (1) allows a patient to identify their primary caregiver and their communication preferences with that caregiver in the healthcare setting; (2) connects the caregiver to a unique portal page to indicate their needs; and (3) informs the healthcare team of patient and caregiver responses to aid in integrating the caregiver. The purpose of this manuscript is to report on the formative phases (Phases I and II) of system development. Phase I involved a pre-assessment to anticipate complexity or barriers in the system design and future implementation. We used the non-adaption, abandonment, scale-up, spread, and sustainability (NASSS) framework and rubric to conduct this pre-assessment. Phase II involved exploring reactions (i.e., concerns or benefits) to the system among a small sample of stakeholders (i.e., 5 palliative oncology patients and their caregivers, N = 10). The purpose of these two phases was to identify system changes prior to conducting usability testing among patient/caregiver dyads in palliative oncology (phase III). Completion of the NASSS rubric highlighted potential implementation barriers, such as the non-uniformity of caregiving, disparities in portal use, and a lack of cost–benefit (value) findings in the literature. The dyads’ feedback reinforced several NASSS ratings, including the benefits of connecting caregivers and allowing for caregiver voice as well as the concerns of limited use of patient-portals by the patients (but not the caregivers) and the need for user assistance during stressful health events. One change that resulted from this analysis was ensuring that we provided research participants (users) with detailed guidance and support on how to log in and use a patient–caregiver portal. In future iterations, we will also consider allowing more than one caregiver to be included and incorporating additional strategies to enable caregivers to interact in the system as part of the care team (e.g., via email)