PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = CAREGIVER BREAKOUT SESSION - PROVIDING PSYCHOSOCIAL SUPPORT JANE HARRISON, LCSW,CCTSW TAKING CARE OF YOURSELF: SHARED HEALTHCARE DECISION-MAKING NOVEMBER 12, 2015

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = Disease Management and Transplant Social Work Manager Inova Fairfax Hospital Falls Church, Virginia Support Group Co-Leader : ©2015 Pulmonary Fibrosis Foundation. All rights reserved.2

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = ©2015 Pulmonary Fibrosis Foundation. All rights reserved.3

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = ©2015 Pulmonary Fibrosis Foundation. All rights reserved.4 Is Psychosocial Support Important? Caregiver Studies for those dealing with lung disease suggest that it is. Predicting anxiety & depression among family caregivers of those with COPD. International Psychogeriatrics (2014), Christina Jacome, et al. Caregivers experience significant anxiety and depression symptoms.  their perceived burden  female gender  older age  activity limitation are predictors of distressing symptoms  further research should focus on the effectiveness of support for families psychological health

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = Carer’s experience of looking after a person with COPD Primary Health Care, July 2014,vol 24 No 6; Vincent,E;Scullion,J 1. Used validity tools; Caregiver Burden Scale (Zarit 1980) a questionnaire and Care Giver Self-Efficacy Scale, (Zeiss et al 1999) a scale in order to determine the carer’s ability to cope. 2. These tools were used to help home health agency personnel determine how much and when more caregiving help was needed. This is seen as beyond holistic, compassionate care and seen as an essential part of treating the individual/family in their environment. ©2015 Pulmonary Fibrosis Foundation. All rights reserved.5

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = ©2015 Pulmonary Fibrosis Foundation. All rights reserved.6 Living with breathlessness: A survey of caregivers of breathless patients with lung cancer or heart failure. Palliative Medicine 27 (7) 2013; Farida Malik et al. 1- Although breathlessness occurs in an overwhelming number of patients with cancer, heart, and lung disease, there is little focus on the caregivers perspective. It is also associated with low family well being. 2- Families experience more isolation with longer progression of illness and overall caregivers are not getting sufficient levels of practical and emotional support to enable them to fulfill the role of caregiver.

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = EXPLORE IPF SURVEY “The Explore IPF Survey is an assessment of the needs, experiences and feeling of patients and caregivers living with IPF. The survey was conducted by research company Taylor Nelson Sofres and sponsored by Boehringer Ingelheim. It was led by a multidisciplinary Advisory Committee that includes IPF thought leaders and advocates dedicated to addressing the unmet needs of the patient community. It was conducted between April 14, 2014 and May 15, 2014.” Respondents completed a 15 minute online survey exploring their IPF journeys, retrospectively.

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = ADVISORY COMMITTEE Jeffrey J. Swigris, DO,MS; Assoc. Professor of Medicine, National Jewish Health Richard Kradin, MD; Massachusetts General Hospital Dolly Kervitsky, RCP, CCRC; Patient Advocate Carolyn Spada, RN, BSN; ILD Coordinator, U of Washington Medical Center Jennifer Hayes, RN, BSN; ILD Coordinator, U of Washington Medical Center John Morthanos, IPF patient and advocate Craig Conoscenti, MD, FCCP; IPF Program Lead, Boehringer Ingelheim Pharmaceuticals, Inc Dale Baird, Assoc. Director, Market Research, Boehringer Ingelheim Pharmaceuticals, Inc.

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = EXPLORE IPF SURVEY “New Survey Uncovers Emotional and Physical Impact of Idiopathic Pulmonary Fibrosis, a Fatal Lung Disease” _release_archive/ self-reported patients and 100 caregivers 73% of patients and 82% caregivers did not understand the emotional toll IPF would have on them. 7 out of 10 (69%) who use O2 are embarrassed to be seen with their equipment. ©2015 Pulmonary Fibrosis Foundation. All rights reserved.9

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = EXPLORE SURVEY - CONTINUED Key Findings: 1.Coughing is common but embarrassing symptom.  93% are embarrassed because they can’t control it. 76% report people keep their distance because of it. 2.Getting diagnosed is a long journey 3.Caregivers need support.  8 in 10 caregivers reported satisfaction with their independence prior to diagnosis. 4.A disease management plan can improve overall wellbeing  Half of patients (53%) and caregivers (55%) feel that better understanding of steps to manage symptoms can help with overall well-being.  More than 7 in 10 (70%) patients and caregivers (75%) agreed that greater support and advocacy groups would be helpful ©2015 Pulmonary Fibrosis Foundation. All rights reserved.10

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = LET’S TALK ABOUT YOUR EXPERIENCE ©2015 Pulmonary Fibrosis Foundation. All rights reserved.11

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = Thank you.