Abstract Background The Michael J. Fox Foundation for Parkinson’s Research (MJFF) regularly gathers feedback from patients and families about their experiences with Parkinson’s disease (PD). We often hear that cognitive changes are among the most feared and troublesome symptoms. Participants in Fox Insight, MJFF’s online observational study, reported cognition as their third most bothersome symptom 1 and in an informal survey of 797 webinar attendees, more than 40 percent said cognitive changes always or often affect daily life, confirming known research. 2 Mild cognitive impairment affects 25 percent 3,4 and dementia impacts 40 percent 5 of people with Parkinson’s. Yet honest, relatable, actionable information on this topic is lacking. To fill this information gap, MJFF’s on‐staff movement disorder specialist facilitated question‐driven discussion with three groups: 1. Providers — four movement and cognitive specialists; 2. Patients — 23 people with PD; 3. Care partners — two social workers and seven care partners of people with Alzheimer’s disease or Lewy body dementia. Care partners also completed a 17‐item questionnaire. Sessions focused on understanding how participants think and talk about cognitive changes as well as what patients and care partners want to know about cognitive changes and how to manage them. Patients and families want early, honest information so they can be proactive and plan. Clinicians recognize the need to mitigate fear and denial and to address cognitive changes in compassionate, reassuring and useful ways. We used these insights to create accessible, practical resources including a 35‐page guide, a webinar and a video. These materials offer information on how thinking and memory can change in Parkinson’s, tips and treatments to promote brain health and ease cognitive symptoms, strategies for talking with loved ones and providers about cognitive changes, and connections with the latest research. Demonstrating the urgent need for this information, the guide and associated materials have been downloaded over 325,000 times in less than four months and over 3,400 people attended the webinar. MJFF’s resources convey a sensitive topic in a relatable and empathic manner to decrease fear and stigma, stimulate discussion, promote research participation, and help patients and families maintain quality of life with cognitive changes.
Abstract Undergraduate programs in engineering are demanding, time consuming, and inherently social endeavors for young adults. Strong social support networks and communities which foster success are frequently found to increase student retention and perseverance through their engineering degree programs. Students with marginalized identities in higher education are met with additional workloads – managing their social identity, negotiating stereotypes, and finding belonging. Existing research shows that a student's experience in in higher education is particularly shaped by gender interactions. This has been shown to be particularly true in engineering, whose gender demographics and professional culture is described as hegemonically masculine. Research on gender in engineering has typically framed gender within a rigid, essentialized cisgender binary. Current literature is lacking detail on the processes used by gender diverse students in the transgender and gender nonconforming (TGNC) community as they navigate the gendered engineering field. We wish to highlight the experiences that undergraduate engineering students have had in relation to their social support and perceptions of gender as it relates to engineering culture within their undergraduate programs. Two students participated in autoethnography as a method of data collection to meet this objective. Collaborative autoethnographic methods position the students as coauthors and coresearchers to ensure the validity of analysis alongside the project's primary investigators. Using a resiliency framework and critical autoethnographic analysis, the primary focus is on the ways these students have formed support systems and their perception of the social landscape in engineering. Through exploring how students persevere through their programs we may uncover points of intervention to strengthen these support systems.
