Facilitating life participation Financial I received an honorarium - PDF document

9/30/2018 Disclosure Facilitating life participation • Financial — I received an honorarium from CSHA for this across settings for individuals presentation and receive a salary from SCSU. with aphasia • Nonfinancial — I have no relevant nonfinancial relationships. Mary Purdy, Ph.D., BC-ANCDS Southern Connecticut State University October 11, 2018 Learner Outcomes: Time-ordered Agenda After attending this presentation, learner will be able to: 4:30-6:00: Life Participation Approaches to Aphasia (LPAA), rehabilitation frameworks, and functional assessment • Describe ICF and A-FROM models for assessment and treatment of aphasia 6:00-6:15: Break • Incorporate LPAA in the evaluation process 6:15-7:30: Setting functional goals and measuring outcomes • Develop functional life participation goals for acute care though 7:30-7:45: Questions and discussion community settings • Identify outcome measures to examine meaningful life changes Core Components of LPAA Life Participation Approach to Aphasia (LPAA)* • A consumer-driven philosophy and model of  The explicit goal is enhancement of life participation. service delivery- not a specific clinical approach.  All those affected by aphasia are entitled to service.  Both personal and environmental factors are targets of assessment and intervention.  Success is measured via documented life enhancement changes.  Emphasis is placed on availability of services as *LPAA Project Group (in alphabetical order) Roberta Chapey, Judith Duchan, Roberta Elman, Linda Garcia, Aura Kagan, Jon Lyon, Nina Simmons-Mackie needed at all stages of life with aphasia. 1

9/30/2018 Evidence (cont.) The Evidence for LPAA (Simmons-Mackie & Kagan, 2015) Patient-centered Goals What is needed to live successfully with aphasia after  Four qualitative studies collectively report on interviews stroke? with 50 PWA, 48 family members, & 34 SLPs  Five qualitative studies collectively report results of interviews with 40 PWA, 24 family members, and 25 SLPs  Goals of PWA and family were related to activity and  Key themes: engage in meaningful activities, have participation, SLP goals were related to impairment relationships, communicate with others, and feel positive early in rehab and moved toward activity/participation  Conclusions: Treatment should be holistic AND treatment later and research should report outcomes relating to key  Conclusion: PWA and families should be included in goal themes selection in order to achieve patient-centered goals Evidence (cont.) Rationale for a focus on life participation Information Needs 1. LPPA interventions have the potential to reduce the consequences of disease and injury that contribute to long-  Three studies surveyed or interviewed 368 PWA term health costs and/or carers • Social isolation • Depression  Conclusion: Accessible information should be • Loss of independence provided at onset and throughout the continuum of • Loss of relationships care • Loss of productive activity • Loss of pleasurable activities Rationale for a focus on life participation Rationale for a focus on life participation 2. Improve QOL 3. Time • Perceived QOL and social functioning are significantly restricted • Many individuals with aphasia will not have access to among individuals with aphasia- particularly severe aphasia long-term services (Hilari, 2011, Hilari & Byng, 2009) • Spouses also reported decreased life satisfaction at 1-year post- • Need to make use of the limited treatment resources aphasia (Forsberg-Warleby et al., 2004). that are available to make a potentially long-term • Social exclusion of persons with aphasia can be helped by impact • Communication support • An exclusively impairment based approach may not be • Acknowledgement and respect the most efficient way to maximize limited treatment • Opportunity and access time (Hinkley & Carr, 2005) • Attention to the environment (Parr, 2007) 2

9/30/2018 Rationale for a focus on life participation Rationale for a focus on life participation 4. Regulatory Compliance- JACHO (cont.) 4. Regulatory Compliance- JACHO • Patients with communication problems are 3 times more likely to experience a preventable adverse effect than “ A hospital must embed effective communication, cultural patients with out such problems (Bartlett et al., 2008). competence, and patient- and family-centered care practices • Obtaining informed consent to medical procedures may into the core activities of its system of care delivery — not be compromised in patients with aphasia (Penn et al., considering them stand-alone initiatives — to truly meet the 2009). needs of the patients, families, and communities served .” • Communication among patients with aphasia and hospital staff can be improved with staff training training (Jensen, • Those actively involve in their care often have better et al., 2015). outcomes. (Joint Commission International Center for Patient Safety, 2006). Rehabilitation Frameworks • The World Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF) • A framework to address functioning and disability related to a health condition within the context of the individual’s activities and participation in everyday life. • Aphasia Framework for Outcome Measurement (A-FROM) (Kagan, et al., 2011) • Based on WHO-ICF, but specifically for aphasia and addresses factors related to QOL Living with Aphasia: Framework for Outcome Measurement (A-FROM) (Kagan, et al., 2007) ICF and LPAA- more than “functional” Activity Participation • Completion of a task in a • Performance of task in “real - life” structured environment ( capacity ) • Make a phone call to museum • Role-play a phone call to a • Go to bank and fill out museum deposit form • Fill out deposit form • Order at a restaurant • Orally read items on a menu • Converse at a party • Converse in aphasia group 3

9/30/2018 Patient-Centered Model of Assessment and Pt/Fam Identify Goals/Priorities Goal Setting* Pt/Fam Collaborative Outcome Clinical Identify Goal Setting Reporting Assessment Goals/Priorities * Adapted from Leach, Fleming, & Haines, 2010 Acute Care “Mr. F.” Acute Care “Mr. F.” • 64 years old Activities and Participation Environmental and Personal • Admitted to hospital 3 days ago with left-hemisphere stroke Factors • Exhibits characteristics of Wernicke’s aphasia o Take medication o Impatient nurses • Refuses medications • Seems “confused” o Communicate his food o Patient frustration • Angry that he does not get the food that he likes- wife concerned not preferences getting the nutrition he needs to recover Hinkley, 2018 Inpatient Rehab- “Mary” Inpatient Rehab- “Mary” • 45 years old Activities and Participation Environmental and Personal • Moderate-severe Broca’s aphasia, AOS, and R-hemiparesis following a stroke Factors • 6 weeks post onset o Participate in divorce o Family/attorney/public • Admitted to rehab unit proceedings unfamiliar with aphasia • Two teenage girls; responsible job as a paralegal; in the o Find new place to live o Patient need for emotional process of divorce, selling her house and finding a new place o Support children at school support to live Kagan et al., 2007 4

9/30/2018 Outpatient rehab- “Mr. L” Outpatient rehab- “Mr. L” • 64 years old, retired Activities and Environmental and Personal • Moderate aphasia Participation Factors • Previously very social- he and wife went out to eat with friends 2-3 times /week o Read o Wife supportive but frustrated • Read a book each week, the newspaper daily o Go out to eat o Friends don’t understand aphasia • Currently, socially isolated, wife often can’t understand his attempts to communicate • Just started OP therapy- has 12 sessions Acute Care Assessment LPAA Dynamic Approach Tasks Traditional • Capitalize on topics/objects in During meal- (ICF Activity-Participation) (ICF body structures/fx) • Match spoken word to food item the environment that are • Match printed word on menu to food item personally relevant • Informal- use stimuli in environment • Steer away from • Serve food without a utensil- patient must request it • BDAE • Consider multi-modal communication • Read consent form, ask questions explicit/didactic tasks • BNT • Level of participation in conversation • Incorporate automatic/implicit • Provide a form and ask for signature and important discussions • RCBA-2 tasks During medication administration- • Note favored response modality • Select pill bottle by name • Perspective on psychosocial • WAB-R • Note clarity of responses in • Identify medication by attribute (white, round) dimensions (control of their life, QOL, • Identify by purpose (…for high blood pressure) each modality social relationships) Hinkley, 2013 Assessment for Living with CADL-3 Aphasia – 2 (ALA) (Kagan et al., 2007) • Assessment of functional • A pictographic, self-report measure of aphasia -related quality-of-life. communication • Provides quantitative and qualitative data from the perspective of the • Doctor’s office person living with aphasia • Calendar usage • Grocery store • Uses pictographic approach which allows for participation across a full • 0, 1, 2 point scoring range of severity • Full credit for fully • Based on Living with Aphasia: Framework for Outcome Measurement A- communicative responses, FROM regardless of modality (e.g. pointing, gesturing) • Captures real-life issues for planning and evaluating aphasia treatment and making funding decisions 5