Mary Jo Cooley Hidecker, Ph.D., CCC-A/SLP

1. Family-Centered Evidence-Based Practice: Is the family paradigms framework useful to communication disorders professionals? Mary Jo Cooley Hidecker, Ph.D., CCC-A/SLP Assistant Professor, Department of Speech-Language Pathology University of Central Arkansas E-mail: MJCHidecker@uca.edu Web: http://faculty.uca.edu/mjchidecker

2. What roles do families play in your therapy or research? • Do you find “star” families with whom you work great? • Do you find “problem” families with whom you struggle? • What are the issues and questions you have about working with a client and his/her family? • What does “family-centered” intervention mean to you?

3. Clinical expertise Client/Family Values & Preferences Individuals with Communication Needs: Evidence-Based Practices? Research

4. Applying WHO ICF Model Health Condition (Disorder or Disease) Body Functions & StructuresSpeech, language, & hearing subsystems Participation Within and outside the family ActivityCommunication Environmental FactorsFamily & Community Personal Factors Age Sex WHO, 2001

5. Steps to Evidence-Based Practice (EPB) Traditional EBP Family-Centered EBP Identify questions important to the family decision-making. Find relevant research related to the questions(s). Evaluate the research evidence for its validity, family relevance, and family/clinical applicability. Integrate the client’s and family’s values and preferences with research evidence and clinical experiences. Evaluate the family-professional collaborative process and family-relevant outcomes. • Determine question(s) to be answered to inform a client-specific decision. • Search for research evidence related to the questions(s). • Evaluate the research evidence for its validity, relevance, and clinical applicability. • Integrate the research evidence with clinical experience and client preferences to answer the question(s). • Assess performance of the previous EBP steps as well as outcomes in order to improve future decisions.

6. How to help families identifyimportant factors? • Consider family science theories • Family paradigms (developed in U.S.) Constantine, 1986; Imig, 2005; Kantor & Lehr, 1975

7. Family Ecosystem Concepts Resources are transformed for goals. Control How do important things get done? Time How is it used? Family Members may act as one entity, in small groups, individually, according to theirfamily paradigm Space How are physical and personal space used? Affect How are caring & support expressed? Energy How much effort to get things done? Meaning What do you value? Material How are possessions viewed? Content How do you determined what is real? Feedback Mechanism

8. Family Paradigm=family’s view of the world. Each family's behavior is guided by its paradigm(s). • Closed Paradigm • Time Plan & follow schedule • Space Structured with only traditional ideas accepted • Energy Constant, predictable flow • Material Important & valued • Control By organization & structure • Affect Privately, conventionally • Meaning Follow “traditional” values • Content Time-tested rules • Random Paradigm • Time Spontaneous & changing • Space Flexible & all ideas acceptable • Energy Fluctuating; enthusiastic flow • Material Avoided when possible due to how they complicate relationships • Control Individually-determined • Affect Spontaneous, demonstrative, & individually-oriented • Meaning Follow own instincts • Content Individually-created • Open Paradigm • Time Balance individual/group • Space Practical; exploring ideas OK if any conflict is resolved. • Energy Changing & adapting to need • Material Practical & useful • Control Discussion & consensus action • Affect Sensitive & responsive • Meaning Do what’s effective • Content Ask, share, & agree. • Synchronous Paradigm • Time Subconsciously understood • Space Integrated & seamless • Energy Peaceful & harmonious flow • Material Preserve for their inherent value • Control implicitly know & complete • Affect Understood without words • Meaning Timeless universals • Content Absolutes, “what is, is”

9. Stability through tradition and loyalty • Closed Paradigm • TimePlan & follow schedule • SpaceStructured with only traditional ideas accepted • EnergyConstant, predictable flow • MaterialImportant & valued • ControlBy organization & structure • AffectPrivately, conventionally • MeaningFollow “traditional” values • ContentTime-tested rules

10. Variety through innovation & individuality • Random Paradigm • TimeSpontaneous & changing • SpaceFlexible & all ideas acceptable • EnergyFluctuating; enthusiastic flow • MaterialAvoided when possible due to how they complicate relationships • ControlIndividually-determined • AffectSpontaneous, demonstrative, & individually-oriented • MeaningFollow own instincts • ContentIndividually-created

11. Adaptability through negotiation & collaboration • Open Paradigm • TimeBalance individual/group • SpacePractical; exploring ideas OK if any conflict is resolved. • EnergyChanging & adapting to need • MaterialPractical & useful • ControlDiscussion & consensus action • AffectSensitive & responsive • MeaningDo whatever is effective • ContentAsk, share, & agree.

12. Harmony through perfection & identification • Synchronous Paradigm • TimeSubconsciously understood • SpaceIntegrated & seamless • EnergyPeaceful & harmonious flow • MaterialPreserve for inherent value • ControlImplicitly know & complete • AffectUnderstood without words • MeaningTimeless universals • ContentAbsolutes, “what is, is”

14. Are family paradigms relevant to people in other cultures? • Carribean Islands (Heck, Owens & Rowe, 1995) • N=674 homeworking households • 28.0% Closed-Open • 21.7% Open • 16.9% Closed-Random • 14.1% Random • 11.4% Random-Open • 7.9% Closed • Closed-open better than average managing both home & work • Random families worst • China (Imig, email) • N=14 Extension directors • 93% Closed-Synchronous (n=13) • 7% Random-Open (n=1)

15. Questions & Discussions

16. Family Paradigms and Augmentative and Alternative Communication Satisfaction in Families with Young Children Client-Family Values Research

17. How to help families implement AAC with their young children? • Apply existing family theory to AAC intervention • Search for a systematic framework • Family paradigms theory • Multiple views of the world Constantine, 1986; Imig, 2005; Kantor & Lehr, 1975

18. Family Paradigms Research into AAC Families • Identify the then current (Post-AAC) paradigm orientation(s) of the AAC family. • Determine if family believes that its paradigm(s) have changed from • Before- to after-diagnosis. • After-diagnosis to Post-AAC • Explore satisfaction with the family’s paradigm and the AAC system.

19. Participants • Parent of a young AAC user • AAC user age 1-6 years and had not started kindergarten • Current AAC system for 6-24 months • Primary caregiver (self-described as having primary home and/or child care responsibilities) • Convenience Sample • No comprehensive lists or numbers of AAC preschoolers so relied on families volunteering

20. Participants • 54 families with 55 AAC preschoolers • Mother self-identified herself as the primary caregiver

21. Method • 3 Instruments • Case History • AAC Family Paradigm Assessment Scale (AACF-PAS; based on the R-PAS, Imig, 2001) • AAC in Families (based on the AAC Family Survey by Angelo, 2000) • Available as paper or web versions • Paid $15 for 60-90 minutes participation

22. Results Summary • An open family paradigm was most frequently used post-AAC. • Open families reported smaller total paradigm difference scores among judgments. • Random families reported higher AAC satisfaction while closed families reported lower AAC satisfaction.

23. Results Summary

24. Is family paradigms framework useful to your work? Why or why not?

25. Future directions • Pilot AAC clinical interventions using family paradigms to explore goodness-of-fit. • Conduct demographics studies of families who have children with typical development and with special needs. • Improve family paradigm tools. • Measuring test-retest reliability of F-PAS • Train speech-language pathologists and audiologists to use family paradigms in EBP

26. Getting to Participation • Participation = Desired intervention outcome? • What does ICF participation mean for young children? • How does a child’s communication performance affect participation? • How to measure participation outcomes that are meaningful to families?

27. Questions & Discussions

28. Acknowledgements My thanks to the families who have shared their journeys with me. Michigan State University Faculty Rebecca Jones, David Imig, Francisco Villarruel, Jill Elfenbein, John Eulenberg, Ida Stockman Funding NIH postdoctoral fellowship (NIDCD 5F32DC008265-02)NIH predoctoral fellowship (NIDCD 1 F31 DC05443-01A1)

29. References American Speech-Language-Hearing Association (2004). Evidence-based practice in communication disorders: An introduction [Technical Report]. Available from www.asha.org/policy. American Speech-Language-Hearing Association (2005). Evidence-based practice in communication disorders [Position Statement]. Available from www.asha.org/policy. Bamm, E. L., & Rosenbaum, P. (2008). Family-centered theory: origins, development, barriers, and supports to implementation in rehabilitation medicine. Archives of Physical Medicine and Rehabilitation, 89, 1618-1624 Constantine, L. L. (1986). Family paradigms: The practice of theory in family therapy. New York: The Guilford Press. Crais, E. R., Roy, V. P., & Free, K. (2006). Parents' and professionals' perceptions of the implementation of family-centered practices in child assessments. American Journal of Speech-Language Pathology, 15, 365-377. Denes & Pinson (1993). The speech chain: The physics and biology of spoken speech. 2nd ed. New York: WH Freeman. Entwistle, V., & O'Donnell, M. (2001). Evidence-based health care: What roles for patients? In A. Edwards & G. Elwyn (Eds.), Evidence-based patient choice: Inevitable or impossible? (pp. 34-49). Oxford; New York: Oxford University Press. Guyatt, G., Montori, V., Devereaux, P. J., Schunemann, H., & Bhandari, M. (2004). Patients at the centre: In our practice, and in our use of language. Evidence-based Medicine, 9, 6-7. Heck, R.K.Z., Owens & Rowe, (1996). Home-Based Employment and Family Life. Westport, CN: Auburn House pp. 118-121, 129, 130. Hidecker, M.J.C., Jones, R.S., Imig, D.R., & Villarruel, F.A. (2009). Using family paradigms to improve evidence-based practice. American Journal of Speech-Language Pathology, 18(3), 212-221. Imig, D. R. (2005). Family paradigms, interpersonal relationships, and family systems. Venice, CA: ETEXT.net Electronic Textbook Publishing. Kantor, D., & Lehr, W. (1975). Inside the family Toward a theory of family process.San Francisco, CA: Jossey-Bass. Schlosser, R. W., & Raghavendra, P. (2004). Evidence-based practice in augmentative and alternative communication. AAC: Augmentative & Alternative Communication, 20, 1-21. Straus, S. E., Richardson, W. S., Glasziou, P., & Haynes, R. B. (2005). Evidence-based medicine: How to practice and teach EBM (3rd ed.). Edinburgh ; New York: Elsevier/Churchill Livingstone. Villarruel, F. A., Imig, D. R., & Kostelnik, M. J. (1995). Diverse families. In E. E. Garcia & B. M. McLaughlin (Eds.), Meeting the challenge of linguistic and cultural diversity in early childhood education (Vol. 6, pp. 103-124). New York: Teachers College Press. World Health Organization (2002). Towards a common language for functioning, disability and health: ICF, The International Classification of Functioning, Disability and Health. Geneva: World Health Organization.

30. For more information Mary Jo Cooley HideckerMJCHidecker@uca.edu Accepting graduate and postdoctoral students

31. WHO ICF Model The World Health Organization’s (WHO) International Classification of Functioning, Disability and Health (ICF) Health Condition (Disorder or Disease) Body Functions & Structures Participation Activity Environmental Factors Personal Factors WHO, 2001

32. The Speech Chain = ICF Body/Structure Function Level Denes & Pinson, p.5

33. The Communication Model= ICF Activities/Participation Levels Message Sender Receiver CommunicationEnvironment