AC2017 PPT11_Total Health for brain injury

Total Health for Chronic Moderate-to-Severe Brain Injury: Maximizing Function and Quality of Life through Community-Based Physical, Cognitive and Social Programming Presenters: Laura Lorenz, PhD, MEd - Director Research & Education, Supportive Living Peter J Noonan, MSA - Executive Director, Supportive Living Therese M O’Neil-Pirozzi, ScD, CCC-SLP - Northeastern University, Spaulding/Harvard TBI Model System, and Supportive Living Research Council Total Health is a series of health and wellness programs created by Supportive Living, along with many collaborating individuals and organizations, to improve life for survivors of brain injury These collaborating partners are all members of the SLI Brain Injury Research Council and have created, tested, researched and studied the effectiveness of these physical, cognitive and social fitness programs The objective of this work is to share evidence based positive outcomes of health and wellness programs that can be replicated in an effort to help serve more survivors of brain injury Total Health program partners include: • Advocates, Inc • Access Sport America • The Center for Balance, Wellness and Mobility • Krempels Center • The Real School of Music Total Health program research has been sanctioned by (IRB approved): • Brandeis University • Northeastern University • MCPHS University • Some of the studies referenced throughout this presentation have been done by us and some by others • We have provided “recommended readings” and “references” to support the concept of a “Total Health” approach to programming for chronic moderate to severe brain injury • We hope they will be useful to you as you consider using or developing Total Health programming for people with chronic brain injury and advocate for participation, collaboration and funding Total Health Internship relationships include: • • • • • • Boston University Brandeis University Gordon College Merrimack College Northeastern University University of Massachusetts Lowell Supportive Living SLI was formed in 1991 with a mission to raise the quality of life for survivors of brain injury To achieve this mission SLI: • Develops appropriate, affordable, supportive housing • Provides life-long physical, cognitive and social fitness through “Total Health” programming • Fosters research aimed at improving the lives of those affected by brain injury Affordable Housing SLI has developed residential communities providing affordable housing and support services for survivors of brain injury • • • • Warren House – 1997, 16 residents McLaughlin House – 2002, residents Douglas House – 2008, 15 residents Old Farm Rockport – 2014, residents Brain Injury Wellness Center and Programs • • • • • Established 2012 Physical Fitness study and programming – 2013 Cognitive fitness study – 2013 Social fitness studies – 2011 and 2014 Center for Balance, Mobility and Wellness – satellite physical fitness program – established 2014 • Horticulture Center and program – 2015 • Summer Camp – 2016 - combining physical, cognitive, social fitness & other therapeutic offerings Total Health from Supportive Living Health and Wellness Programs for Survivors of Brain Injury • Total Health is a comprehensive, holistic approach to meet the unique needs of people living with chronic brain injury • Total Health approaches the brain and body as integrated and inseparable, and offers complementing physical, cognitive and social fitness programs to help improve life for survivors of brain injury Types of Creative Arts Programming • Visual Arts help people express experiences difficult to put into words9 • Music therapy calms neural activity in the brain, reduces anxiety and restores immune system function10,11,12,13 • Expressive writing can improve physical health, reduce healthcare visits and improve immune system function14,15 Group Activities Create art that tells a group story16 and encourages social interaction – and interaction with the knowledge produced!17 Almost everyone can make a small picture that becomes part of a group picture Individual Activities Create art that reflects and communicates something of importance to the individual 17 Even people with serious impairments can create with support Let participants lead the process and make decisions about topic, colors, content, form as you collaborate together They want to more – so let them! Evaluating Outcomes • Standardized measures18 • Focus group discussions • Written evaluations • Individual interviews • Physical health • Brain injury function19 Challenges to Outcomes Challenge for facilitators Finding a balance between control and support Give people choices! • • • • • Need for one-to-one supports Inability to focus on task Uneven participation (scheduling conflicts) Comorbidities (anxiety, pain) Inconsistent implementation A Story You don’t have to go home, you can stay here! You can get in this bathroom at a local medical facility, but you can’t get out Once you are inside, you are at the mercy of someone else to come let you out I use paper towels or something as a door jam, but where you have a brain injury it’s easy to forget Bathrooms should all have handicapped buttons Bathrooms are something everyone needs Think “community” before you design and build! This participant increased his Satisfaction with Life Scale (SWLS) scores by 33% (4 points) between pre-test and posttest In sum • Creative Arts programming requires investments – in therapists, supplies, interns • Blending group and individual activities means being person-centered • To understand return on investment, evaluation is needed • Outcomes can be improvements in emotional health, social health, physical health, cognitive health • Consistent opportunities throughout the year may build potential for improved outcomes over time Creative Arts = Expressive Arts Whatever name you choose, the goal is similar: help people to create along with others – and enjoy the process and interactions Total Health - Summary: • Research has proven that the chances of leading a healthy life, with or without a brain injury, will improve if you: Exercise regularly - Maintain a healthy diet - Spend time with friends - Engage in new activities -Laugh, have fun • Unfortunately for many survivors of brain injury these basic activities for a healthy life are limited Many of the obstacles to these activities have been identified The challenge is overcoming them • Our goal for Total Health is to find creative collaborative ways to provide these opportunities Our overall objective is to find ways to replicate Total Health programs for as many survivors as possible Physical Fitness Social Fitness Total Health Cognitive Fitness A Plea! • We hope that this presentation inspires YOU to adapt this Total Health model to your clients and to help people with more severe injuries have better access to meaningful recreational activities • The result? People with chronic brain injury who have better access to quality programming will maintain and improve their overall health function and their quality of life Q&A Some suggested questions/food for thought: • What you already have in place that is meeting the needs of community-based individuals with more severe injuries? • What, if any, Total Fitness programming could you adapt to your clients? • What types of supports could help your efforts? There is much experience and knowledge in this room Let’s be resources for each other! Recommended Readings Exercise (Physical Fitness) • • • Hassett L, Moseley AM, Tate R, Harmer AR Fitness training for cardiorespiratory conditioning after traumatic brain injury Cochrane Database System Review 2008;CD006123 Saunders DH, Sanderson M, Brazzelli M, Greig CA, Mead GE Physical fitness training for stroke patients Cochrane Database System Review 2013;CD003316 Charrette, AL, Lorenz, LS, Fong, J, O’Neil-Pirozzi, TM, Demore-Taber, M, Lamson, KS, Lilley, R (2016) Pilot study of intensive exercise on endurance, advanced mobility, and gait speed in adults with chronic severe acquired brain injury Brain Injury, DOI:10.1080/02699052.2016.1187766 Published online 28 Jul 2016 Cognitive (Cognitive Fitness) • • • Cicerone KD, Langenbahn DM, Braden C., et al Evidence-based cognitive rehabilitation: updated review of the literature from 2003 through 2008 Archives of Physical Medicine and Rehabilitation, 2011;92:519-530 Lebowitz MS, Dams-O’Connor K, Cantor JB Feasibility of computerized brain plasticity-based cognitive training after traumatic brain injury Journal of Rehabilitation Research and Development, 2012;49:1547–1556 O’Neil-Pirozzi TM, Hsu H Feaasibility and benefits of computerized cognitive exercise to adults with chronic moderate-to-severe cognitive impairments following an acquired brain injury: A pilot study Brain Injury, 2016;1-9 Expressive Arts (Social Fitness) • • • Boydell KM, Gladstone BM, Volpe T, Allemang B, & Stasiulis E The Production and Dissemination of Knowledge: A Scoping Review of ArtsBased Health Research Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 2012, 13(1) http://www.qualitativeresearch.net/index.php/fqs/article/view/1711/3328 Lorenz, LS and Jon Chilingerian Using visual and narrative methods to achieve fair process in clinical care Journal of Visualized Experiments, 2011, 48, e2342, doi:10.3791/2342 http://www.jove.com/video/2342/using-visual-narrative-methods-to-achieve-fairprocess-clinical Stuckey, HL and Nobel, J The Connection Between Art, Healing, and Public Health: A Review of Current Literature American Journal of Public Health 2010, 100(2), pp 254-263 doi: 10.2105/AJPH.2008.156497 References – Physical Fitness CDC (Centers for Disease Control and Prevention) Report to Congress on traumatic brain injury in the United States: Epidemiology and rehabilitation Atlanta, GA: CDC;2014 Langlois JA, Rutland-Brown W, Wald MM The epidemiology and impact of traumatic brain injury: a brief overview The Journal of head trauma rehabilitation 2006;21(5):375-378 Pawlowski J, Dixon-Ibarra A, Driver S Review of the status of physical activity research for individuals with traumatic brain injury Archives of physical medicine and rehabilitation 2013;94(6):1184-1189 Lorenz L, Charrette A, Doucett J, O'Neil-Pirozzi T, Carmichael J Barriers, supports and sustainability of exercise programming for adults with moderate-tosevere brain injury: A qualitative exploration under development Carmichael J, Chinn R, Lorenz L "I feel better being active": Motivations to exercise among group home residents with chronic brain injury under development Charrette AL, Lorenz LS, Fong J, et al Pilot study of intensive exercise on endurance, advanced mobility and gait speed in adults with chronic severe acquired brain injury Brain injury 2016;30(10):1213-1219 Langhammer B, Stanghelle JK, Lindmark B Exercise and health-related quality of life during the first year following acute stroke A randomized controlled trial Brain injury 2008;22(2):135-145 Hassett LM, Moseley AM, Tate R, Harmer AR Fitness training for cardiorespiratory conditioning after traumatic brain injury The Cochrane database of systematic reviews 2008(2):Cd006123 Mossberg KA, Amonette WE, Masel BE Endurance training and cardiorespiratory conditioning after traumatic brain injury The Journal of head trauma rehabilitation 2010;25(3):173-183 10 Bateman A, Culpan FJ, Pickering AD, Powell JH, Scott OM, Greenwood RJ The effect of aerobic training on rehabilitation outcomes after recent severe brain injury: a randomized controlled evaluation Archives of physical medicine and rehabilitation 2001;82(2):174-182 11 Killington MJ, Mackintosh SF, Ayres M An isokinetic muscle strengthening program for adults with an acquired brain injury leads to meaningful improvements in physical function Brain injury 2010;24(7-8):970-977 12 Decaria JE, Sharp C, Petrella RJ Scoping review report: obesity in older adults International journal of obesity (2005) 2012;36(9):1141-1150 13 Carlson DJ, Dieberg G, Hess NC, Millar PJ, Smart NA Isometric exercise training for blood pressure management: a systematic review and meta-analysis Mayo Clinic proceedings 2014;89(3):327-334 14 Giangregorio L, El-Kotob R Exercise, muscle, and the applied load-bone strength balance Osteoporosis international : a journal established as result of cooperation between the European Foundation for Osteoporosis and the National Osteoporosis Foundation of the USA 2017;28(1):21-33 15 Hayes HA, Gappmaier E, LaStayo PC Effects of high-intensity resistance training on strength, mobility, balance, and fatigue in individuals with multiple sclerosis: a randomized controlled trial Journal of neurologic physical therapy : JNPT 2011;35(1):2-10 References – Cognitive Fitness Jak AJ, Seelye AM, Jurick SM Crosswords to computers: a critical review of popular approaches to cognitive enhancement Neuropsychological Review 2013;23:13–26 O’Neil-Pirozzi TM, Hsu H Feaasibility and benefits of computerized cognitive exercise to adults with chronic moderate-to-severe cognitive impairments following an acquired brain injury: a pilot study Brain Injury, 2016;1-9 Cicerone KD, Langenbahn DM, Braden C., et al Evidence-based cognitive rehabilitation: updated review of the literature from 2003 through 2008 Archives of Physical Medicine and Rehabilitation, 2011;92:519-530 Lebowitz MS, Dams-O’Connor K, Cantor JB Feasibility of computerized brain plasticity-based cognitive training after traumatic brain injury Journal of Rehabilitation Research and Development, 2012;49:1547–1556 Owen AM, Hampshire A, Grahn JA, Stenton R, Dajani S, Burns AS, Howard JH, Ballard CG “Putting Brain Training to the Test,” Nature 2010;465:775-779 Marin RS, Wilkosz PA Disorders of diminished motivation Journal of Head Trauma Rehabilitation 2005;20:377–388 Norcross JC, Mrykalo MS, Blagys M Auld Lang Syne: success predictors, change processes, and self-reported outcomes of New Year’s resolvers and nonresolvers Journal of Clinical Psychology 2002;58:397–405 References – Social Fitness Levin T, Scott BM, Borders B, Hart K, Lee J, Decanini A Aphasia Talks: photography as a means of communication, self-expression, and empowerment in persons with aphasia Topics in stroke rehabilitation 2007;14(1):72-84 Colantonio A, Kontos PC, Gilbert JE, Rossiter K, Gray J, Keightley ML After the crash: research-based theater for knowledge transfer The Journal of continuing education in the health professions 2008;28(3):180-185 Keen S, Todres L Strategies for disseminating qualitative research findings: Three exemplars Forum Qualitative Sozialforschung / Forum: Qualitative Social Research 2007;8(3):Art 17 Dyches T, Cichella E, Olsen S, Mandleco B Snapshots of life: Perspectives of school-aged individuals with developmental disabilities Journal of Continuing Education in the Health Professions 2004;28(3):180-185 Oliffe JL, Bottorff JL Further than the eye can see? Photo elicitation and research with men Qualitative health research 2007;17(6):850-858 Gross J, Swartz R The effects of music therapy on anxiety in chronically ill patients Music Ther 1982;2:43-52 Pennebaker, JW (1997) Writing about emotional experiences as a therapeutic process Psychol Sci 8(3):162-166 VHA (Veterans Health Administration) (2015) Rehabilitation and Prosthetic Services: Recreation Therapy, Creative Arts Therapies http://www.rehab.va.gov/PROSTHETICS/factsheet/RecTherapy-Creative-Arts-FactSheet.pdf Accessed March 10, 2017 Stuckey HL, Nobel J The connection between art, healing, and public health: a review of current literature American journal of public health 2010;100(2):254-263 10 Krout R Music listening to facilitate relaxation and promote wellness: integrated aspects of our neurophysiological response to music Arts Psychother 2006;34(2):134-141 11 Mettner J Creative medicine Minnesota medicine 2005;88(7):15-16 12 Rohner S, Miller R Degrees of familiar and affective music and their effects on state anxiety J Music Ther 1980;17:2-15 13 Petterson M Music for healing: the creative arts program at the Ireland Cancer Center Alternative therapies in health and medicine 2001;7(1):88-89 14 Esterling BA, L'Abate L, Murray EJ, Pennebaker JW Empirical foundations for writing in prevention and psychotherapy: mental and physical health outcomes Clinical psychology review 1999;19(1):79-96 15 McArdle S, Byrt R Fiction, poetry and mental health: expressive and therapeutic uses of literature Journal of psychiatric and mental health nursing 2001;8(6):517524 16 Lorenz LS Visual metaphors of living with brain injury: Exploring and communicating lived experience with an invisible injury Visual Studies 2010;25(3):210-223 17 Lorenz LS, Kolb B Involving the public through participatory visual research methods Health Expect 2009;12(3):262-274 18 https://www.commondataelements.ninds.nih.gov/TBI.aspx#tab=Data_Standards 19 http://www.tbims.org/combi/mpai/ ... a “Total Health? ?? approach to programming for chronic moderate to severe brain injury • We hope they will be useful to you as you consider using or developing Total Health programming for people... social fitness & other therapeutic offerings Total Health from Supportive Living Health and Wellness Programs for Survivors of Brain Injury • Total Health is a comprehensive, holistic approach to... with friends - Engage in new activities -Laugh, have fun • Unfortunately for many survivors of brain injury these basic activities for a healthy life are limited Many of the obstacles to these activities