5:25 - 6:10 pmSaturday, September 6
Plenary Hall
Depression in chronic illness and coping through online communities
Plenary Hall
Depression in chronic illness and coping through online communities
ePatient Scholar; CEO/Chairman & Founder, FMD Chat
ePatient Delegate
ePatient, Data Liberation Advocate
ePatient; Family Partner, Cincinnati Children's Hospital Medical Center; Blogger, 66 Roses
Professor, University of Massachusetts Boston
Psychologist
Studies have shown that depression is a common co-morbidity with chronic illness and that social support systems positively impact patients' symptoms of depression and those relating to chronic illness.... Read more

Description

Studies have shown that depression is a common co-morbidity with chronic illness and that social support systems positively impact patients' symptoms of depression and those relating to chronic illness. Per the American Psychological Association, "Social support was associated with high self-esteem, which in turn increased optimism and was related to decreased depression" (Symister, Friend, Health Psychology Vol 22(2), Mar 2003, 123-129). We propose a panel discussion from the patient perspective regarding the prevalence of depression across chronic disease states. 

The panel's goal is to bring attention to the role mental health plays in the overall management of one's health.

Topics for discussion are as follows:

mental health's social and physical impacts;

general/family medicine's role in diagnosing and managing mental health;

how different disease communities approach mental health and related attitudes;

where patients tend to discuss mental health—within their primary chronic illness community or in a separate community specifically for mental health;

how the issues of mental health and chronic illness play out in social media-based communities versus face-to-face support groups or counseling;

strategies for patients, online community leaders, and physicians dealing with mental health issues as related to chronic illness.

Q & A session to follow panel discussion. 

Sarah Kucharski, or AfternoonNapper, blogs as a health advocate fostering the patient voice in medicine. Special interests include the patient experience in healthcare settings, the doctor-patient relationship, the patient-caregiver relationship, chronic illness, health literacy, advance planning and end-of-life issues. She is CEO/Chairman and Founder of FMD Chat, a nonprofit organization supporting those around the world affected by a rare vascular disease. As FMD Chat’s leader, she oversees the organization's consistent achievement of its mission and financial objectives; fundraising; publicity and media relations; domestic and international partnerships; volunteer recruitment and development. She also serves on the ePatient Advisory Board (2012, 2013) for Stanford University's Medicine X conference.

Speaking engagements have focused on the role ePatients are playing in healthcare at the Doctors 2.0 & You healthcare and social media conference in Paris, France; and to med school students at both Stanford and UC Irvine regarding the ePatient experience. Additional conference participation includes HealthCamp DC; Partnership With Patients; HealthCamp Kansas City; ScienceOnline 2013, and Rare Disease Day at the National Institutes of Health. Her work has been recognized with Health Advocate Award nominations from Wego Health, state newspaper and international blog write ups, a Rare Disease Legislative Advocates scholarship to participate in Congressional lobbying on behalf of the rare disease community, and a scholarship to Medicine 2.0 at Stanford University.

Individually she is a member of the Society for Participatory Medicine, National Organization for Rare Disorders, Rare Disease UK, Cleveland Clinic Patient Advisory Panel, and Regina Holliday's Walking Gallery of Healthcare. FMD Chat is a partner organization of the N.C. Center for Nonprofits, Global Genes, EURORDIS, and Rare Disease UK.

AfternoonNapper's day-job is as an award-winning writer and editor of a nationally-published, regional lifestyle magazine covering Western North Carolina, East Tennessee, North Georgia, and Southwest Virginia. She is responsible for the magazine's overall editorial concept and content in addition to business operations including freelancer relations, marketing, sponsorships, and social media.

As her moniker would imply, AfternoonNapper enjoys ruminating from a prone position and napping—mostly in the afternoon, but any time will do.

Scott Strange has been a Type 1 diabetic since 1970. Strangely Diabetic is his story of how diabetes has affected his life and how his life was changed when he learned that he wasn’t alone in this chronic condition. Scott wants to share his experiences with other diabetics, so they can hopefully avoid some of the things that made him truly suffer.  Diabetes was probably the least of those things.

He advocates for patients to become actively engaged, not only in managing their condition, but in stepping forward to lead their healthcare team and to communicate with others either online or in person.

It took him nearly 40 years to realize that he was not alone in living with diabetes. At the time, Scott didn't even know that he needed the support of other diabetics who truly understand, but he finally found the support he needed and it has changed his life.

Blogging and participating in the Diabetic Online Community is Scott's way of giving a little back to all those who have helped him.

Hugo Campos is a patient advocate who is passionate about participatory medicine. He has been featured on NPR and spoken at TEDX. Hugo also advocates for the rights of patients with pacemakers and implantable defibrillators to gain electronic access to the data collected by their cardiac devices. He moved to the United States from Rio de Janeiro in the early '90s to study graphic arts.

Erin Moore's work in the cystic fibrosis community began when her son was born in 2010. Her initial involvement was in fundraising and then she began working at the State Advocacy Chair for the Ohio Chapter of the Cystic Fibrosis Foundation. In 2012, Erin started working with Cincinnati Children's Hospital in their Pulmonary Department on quality improvement work, bringing all stakeholders to the table in designing systems and tools to better meet the needs of patients, clinicians and researchers to improve health and care in the cystic fibrosis community. Erin is a member of the Committee for Patient Engagement at the Cystic Fibrosis Foundation and works on the Committee for Patient & Clinician Engagement on the New York CDRN. She also leads the patient engagement work for the development of a Collaborative Chronic Care Network (C3N) for Cystic Fibrosis. 

Gonzalo Bacigalupe, EdD (University of Massachusetts Amherst), MPH (Harvard University), is Professor of the Master of Science in Family Therapy Program and the PhD in Counseling PsychologyCollege of Education & Human Development at the University of Massachusetts Boston, and is Ikerbasque Research Professor at the Deusto Stress and Resilience Research Team at the University of Deusto.  Bacigalupe is President of the American Family Therapy Academy. Bacigalupe is co-principal investigator of a Patient-Centered Outcomes Research Institute Pilot research project: Influence and evidence: Understanding consumer choices in preventive care. He is research faculty in the Health Equity Scholars Program of the UMass Center for Health Equity Intervention Research, an NIMHHD P-60 5 years grant for a joint effort by the UMass Medical School and UMass Boston. He is also an Adjunct Professor with the University at Distance in Spain (UNED). Bacigalupe is strategic consultant of Regroup Therapy.  His research with colleagues in Spain, Turkey, Mexico, and the USA, focuses on the impact of emerging media adoption on families,  transnational/immigrant families, family health, and e-health. In conjunction with the Basque Institute for Healthcare Innovation (o+Berri) and the Population Health Management Research Team atKronikgune, he evaluated the role of healthcare virtual communities of practice and the role of social networks in supporting patients with multiple chronic illness. As part of the Basque Prevención y Vida Saludable (PVS) research team, he collaborates in a practice outcome based research project to instill a population health model in primary care. 

Ann Becker-Schutte is a licensed counseling psychologist practicing in the midtown area of Kansas City, MO. Her goal in therapy is to create a safe, supportive environment for her patients and caregivers affected by serious illness.

Her practice specialties include the intersection of physical & emotional health, grief & loss, and infertility. She firmly believes that our emotional and physical health are strongly related. There is great research supporting this belief. So one of her primary goals in her practice is to create a space for those who are coping with serious or chronic health issues to receive support and gain understanding of how their mind and body affect one another.

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