Family Centered Practice

1. Family Centered Practice Elizabeth Ridgway OTR Carol Terilli PT, DPT

2. Objectives • Discuss Family Centered Practice related to CERC and HIRIG • Understand each individual as unique with the factors that comprise their “wholeness” • Differentiate between models of Patient- Centered Medical Home, and Patient-Centered Practice • Inform multiple disciplines to consider the whole person in their practice

3. Children’s Evaluation & Rehabilitation Center (CERC) Rich multidisciplinary environment Clinical site of Albert Einstein College of Medical (Einstein) Member of Association of University Centers on Disabilities (AUCD) with national influence for advocacy, policy, training & funding One of 67 University Centers for Excellence in Developmental Disabilities (UCEDD) One of 34 Leadership Education in Neurodevelopmental Disabilities (LEND) Programs Einstein CERC OT & PT AUCD LEND UCEDD

4. OT & PT impact on increased Family-Centered Practice at CERC Opportunity for bridging multidisciplinary direct patient care and more inclusive family & community involvement Community CERC LEND Multi-disciplinary Teams DOE-school system National & State Professional Organizations: OMRDD, AUCD Families and Clients

5. CERC & HIRIG Demographics ↑FOC, SES – advocates for change Underrepresented/served People with Developmental Disabilities ↓access to health care Possibilities in research improve outcomes improve access & compliance

6. Family Body Systems & Structures Mental Health Person’s fundamental nature Culture Environment Person’s Fundamental Nature Physical Health Abilities & Limitations Interventions The “Whole Person” Model

7. CERC Mission Statement "Our Center's mission is to help children with disabilities reach their full potential and to support parents in their efforts to get the best care, education, and treatment for their children."Herbert J. Cohen, M.DDirector Emeritus C.E.R.C

8. Family Centered Care Maternal and Child Health (2005) Family Centered Care: “assures the health and well being of children through a respectful family-professional partnership… It honors the strengths, cultures, traditions and expertise that everyone brings to the relationship… Family centered care is the standard of practice which results in high quality services”

9. Family Centered Framework (National Center for Family Care Service, 1990)

10. “Parents know their children best and want the best for their children” People/families know themselves best and … (finish this statement related to your practice) Thoughts: “Nice ideal, not always reality” Opportunity to exercise FCP: amount of time during sessions, person in decision making role, conservator or guardianship

11. Comparing Terms Patient-Centered Medical Home (NCQA.org, 2010) Client/Family Centered Practice (Blue-Banning et al, 2004; Sumsion & Law, 2006) Defining who is the client Patient, Family Partnership with the client in decision making Ongoing flexible process Considers the whole patient/family (refers to illustration) Patient responsibility for their health Considers limited resources Effects choices available • Ongoing relationship with Personal Physician • Strengthens physician-client relationship • Physician led care team • Coordinated centralized care • Enhanced Care • Convenient flexible hours, • Communication between patient/professionals/staff

12. Patient-Centered Practice Primary Care Physician • Explore disease & patient’s experience Patient’s: • feelings about being ill • ideas of what’s wrong • Impact on daily function • expectation of what should be done • Understand the whole person • Find common ground regarding management • Enhance the physician-patient relationship Stewart et al (2000)

13. Patient-Centered PracticeStewart et al (2000) 39 randomly selected family physicians, and 315 of their patients audio-taped office visits scored for patient-centered communication. Patient-Centered practice was associated with improved health care including utilization of services, patient perceptions of finding common ground, better recovery from discomfort and concern, better emotional health, and fewer diagnostic tests and referrals that followed.

14. Key Components of FCP • Choice - client’s awareness of choices & options • Hope - optimism & realism • Listening/communicating- shared &understood • Partnership/Power - equalize power & being an ally • Respect/Equality - valuing & honoring individuals • Time/Commitment - worthwhile investment • Trust/Honesty – build and foster , bidirectional • Knowledge/Skills -Providers (specialty expertise); Families and clients (expertise about themselves and their goals) (Blue-Banning et al, 2004; Sumsion & Law, 2006)

15. Barriers Practitioner: Preconceived ideas Resistance to change Difficulty with shared power & control Client: Fear Trust Age Insight Cultural issues Reluctance to be involved Facilitators Practitioner: • Collaborative • Open, flexible • Persistence & patience Client: • Expectations • Empowerment • Insight • Responsibility Facilitator or Barrier? System: Medical Model vs FCP Institution: Rules, regulations, traditions (Sumsion & Law, 2006)

16. CERC programs: Research • Conduct interdisciplinary training programs • Design studies to measure changes in outcomes • Conduct Participatory – Action Research • Client collaborates in the study design • Promote inclusion of children and adults with disabilities in community activities • - Design collaborative programs and research within/beyond Einstein resource

17. Review of Evidence Rosenbaum et al(1998) reviewed 5 class 1 studies finding: • Children of parents provided with developmental education achieved more skills than those not educated (Moxley-Haegert and Serbin, 1983) • FCP such as providing information to parents, building parents’ skills, individualizing services, resulted in more positive outcomes and parental involvement (Parker et al, 1992) • Using one of three methods of assessment and evaluation involving FCP that assist families in identifying their strengths and needs resulted in high approval of the service (Davis and Gettinger, 1995) • Using a FCP approach “infusing biomedical and psychosocial approaches” with pediatric home care resulted in greater parental satisfaction, better psychological adjustment of the child, significantly higher scores on four of six subscales on the Personal adjustment and Role Skills scale (Stein and Jessop, 1991) • Nurses trained in using FCP to collaborate with child and family to identify needs and strengths, build on strengths and obtain services resulted in better measures of parental function and roles, Child’s better psychosocial adjustment and self-worth (Pless et al, 1994)

18. Review of Evidence • Blue-Banning et al (2004) qualitative inquiry to determine common themes in family and professional partnerships to develop means for measurement and future research.

19. References Blue-Banning, M., Summers, J., Frankland, H., Nelson, L., Beegle, G. (2004) Dimensions of Family and Professional Partnerships: Constructive Guidelines for Collaboration. Exceptional Children 70(2), 167-184. Chiarello, L. (2008). Foundations in Family and Person-centered care: PowerPoint lecture. Unpublished manuscript. Kolobe, T, Sparling, J., Daniels, L. Family –Centered Intervention. In. S. Campbell, D. Linden, & R. Palisano (Eds). Physical Therapy for Children 2nd Ed. (pp.881-909). Philadelphia: W.B. Saunders. Meilahn, K. (1993). Promoting Partnerships Between Health care Providers and Parents of Children with Special Health Care Needs. Nutrition Focus, 8(3), 1-6. Maternal and Child Health Bureau (2005). Definition and Principles of Family-Centered Care. Department of Health and Human Services, Rockville, MD National Committee for Quality Assurance (2010). www.ncqa.org

20. References Rosenbaum, P., King, S., Law, M., King, G., Evans, J. (1998). Family-Centred Service: A Conceptual Framework and Research Review. Physical and Occupational Therapy in Pediatrics 18(1), 1-20. Steward, M., Brown, J. B., Donner, A., McWhinney, I. R., Oates, J., Weston, W. & Jordan, J. (2000). The impact of patient-centered care on outcomes. The Journal of Family Practice, 49, 796-804. Sumsion, T. (Ed.). (2006). Client-centered practice in occupation therapy: A guide to implementation. Edinburgh, UK: Churchill Livingstone. Sumsion, T & Law, M. (2006). A review of evidence on the conceptual elements informing client-centered practice. Canadian Journal of Occupational Therapy, 73, 153-162 Viscardis, L. (1998). The family-centered approach to providing services: A parent perspective. Physical & Occupational Therapy in Pediatrics, 18(1), 41-53.