At the end of this lecture, participants will be able to:

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2 Our human compassion binds us the one to the other-not in pity or patronizingly, but as human beings who have learnt how to turn suffering into hope for the future. Nelson Mandela

3 At the end of this lecture, participants will be able to: State three goals for a successful case conference. List two strategies for engaging parents/families in shared decision making. Consider one way that your own experience influences how you interact with families. Note: We use the terms parent and family interchangeably to denote all adults that care for children and play a role in their development.

4 What is Family Centered Care? Family Centered Care (FCC) in an approach to health care that engages patients, families, and staff as partners to shape policies, programs, facility design, and day to day interactions. FCC is a process whereby help is defined by the family that is being supported. It is both an attitude about the process as well as a philosophy of practice. Goldfarb, F. D., et al. (2010). Partnering with professionals: Family-centered care from the parent perspective. Journal of Family Social Work. 13:2,

5 Benefits Include:

6 Family Systems Framework Family Structure (Who is in the family?) Family Functions (Why do we have families?) Family Interactions (Who talks to whom?) Family Life Cycle (How do families change over time?)

7 What does the parent want from this process? (Shared decision making) Good feedback starts at the beginning of the evaluation by: Establishing what the parents knows and what they are trying to figure out Exploring any diagnoses parent s suspect, their understanding of the diagnoses, and how they feel about them Engaging with the child and family to start to foster an environment of trust and mutual respect.

8 Who are we responsible to? Professionals bear the responsibility for ensuring that parents receive complete information, emotional support, and concrete help from the conference. Parents thoughts and feelings are as important as professionals test results do we believe this? Child-Give parents information about what we know about their child in a way that is compassionately delivered, understandable by the parents and respectful of current and future adult/child mutual attachment issues.

9 Ways to set the stage for a successful case conference Position of seating Number of professionals in the room Sufficient time to give information and answer questions Coming prepared Be present

10 Goals of the Case Conference: 1. Answering parents questions and providing diagnostic information about their child s disability 2. Helping parents begin to cope emotionally with the knowledge of their child s diagnosis 3. Assisting parents in making plans to carry out recommendations.

11 Answering parents questions and providing diagnostic information about their child s disability

12 QUICK POLL QUESTION #1 What is a common impact on a family due to having a child with a disability? A) Work hours reduced B) Decreased social participation C) Increased anxiety from extended family members D) Increased home responsibilities

13 Helping parents cope emotionally with the knowledge of their child s diagnosis

14 Helping parents cope emotionally with the knowledge of their child s diagnosis Impact to family has multiple ripple effects: Increased likelihood of divorce, living apart, or one parent not being able to work outside the home (Swaminathan, et al., 2006) Likelihood of a reduction in parental work hours (Noonan, et al., 2005) Lower rates of social participation in activities; less likely to have large families (Seltzer, et al., 2001) Other family members (i.e grandparents, extended family) feeling the need to carry the burden (Miller, Buys, & Woodbridge, 2012) Miller, E., Buys, L. & Woodbridge, S. (2012). Impact of disability of families: grandparents perspectives. Journal of Intellectual Disabilities Research, 56:1, Noonan, K., Reichman, N. E., & Corman, H. (2005) New fathers labor supply: does child health matter? Social Science Quarterly, 86, (&1419). Seltzer, M. M., Greenberg, J. S., Floyd, F., Pettee, Y., Hong, J. (2001) Life course impacts of parenting a child with a disability. American Journal on Mental Retardation, 106, Swaminathan, S., Alexander, G., Boulet, S. (2006). Delivering a very low birth weight infant and the subsequent risk of divorce or separation. Maternal and Child Health Journal, 10,

15 Helping parents cope emotionally with the knowledge of their child s diagnosis Acknowledging families differing attitudes and expectations around a Dx A majority will receive it as negative (Ashtiani, 2013) Some parents will take it as a gain, not loss and become an even stronger advocate for Dx to other parents (Russell & Norwich, 2012) Consideration of the differences among family members mothers tend to be concerned with child s characteristics and fathers concerned with long term social acceptance (Bostrom & Broberg, 2014) Ashtiani, S., et al. (2013). Parents experience of receiving their child s genetic diagnosis: A qualitative study to inform clinical genetics practice. American Journal of Medical Genetics. 164A, Bostrom, P.K & Broberg, M. (2014). Openness and avoidance: A longitudinal study of fathers of children with intellectual disability. Journal of Intellectual Disability Research. 58:9, Russell, G. & Norwich, B. (2012). Dilemmas, diagnosis and de-stigmatization: Parental perspectives on the diagnosis of autism spectrum disorders. Clinical Child Psychology and Psychiatry. 17:2,

16 Building a trusting relationship As a clinician, a trusting relationship with the family is necessary before individuals in crisis feel safe to express feelings, and feelings must be ventilated before rational thinking can resume. Regardless of style, two key components of a successful feedback session are: A personal connection with the family; a feeling that the clinician genuinely cares A parent-friendly frame (Bartolo, 2002) The clinician is honest A hopeful-diagnostic formulation (Bartolo, 2002) and gives hope (Waxler, et al., 2013) Bartolo, P.A. (2002). Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks. development. 28:1, Child: Health, care, and Waxler, J. L., et al. (2013). Hearing from parents: The impact of receiving the diagnosis of Williams syndrome in their child. American journal of medical genetics. 161:3,

17 Cultural issues and disability Cultural dynamics Cultural beliefs shape explanations of (Norbury & Sparks, 2013) and responses to a diagnosis/disability and influence what responses, interventions and treatments are (Ravindran & Myers, 2012) Language Appropriate use of medical interpreters (i.e. not using children, untrained professionals) (Juckett & Unger, 2014) Juckett, G. & Unger, K. (2014). Appropriate use of medical interpreters. American Family Physician. 90:7, Norbury, C. F. & Sparks, A. (2013). Difference or disorder? Cultural issues in understanding neurodevelopmental disorders. Developmental Psychology. 49: Ravindran, N. & Myers, B. J. (2012). Cultural Influences on Perceptions of Health, Illness, and Disability: A Review and Focus on Autism. Journal of Child and Family Studies. 21:2,

18 QUICKPOLL QUESTION #2 How much information is remembered from a doctor s appointment? A) % B) % C) % Lipkin Jr., M., Putnam, S. M., & Lazare, A. (2011). The Medical Interview. Springer, New York, NY.

19 Using Decision Aids Increases Retention Relationship/compassion, understandable terms, stories and hope help increase retention and comprehension Parents are under so much stress about this diagnosis visit 19

20 Our story so far... I remember the OB that gave the preliminary Dx, not the geneticist. I remember the fear for the future. I remember She will never be able to walk up stairs I do not know what was actually said... I remember they are such loving people not watch out she is going to be stubborn... The family wants you to remember the child not the diagnosis.

21 Parents Worry About What Now??... whether or not they get a diagnosis. Is it my fault? Is it your fault? Can I handle this? Will I ever get my life back? What about the rest of my family?? Can I have more kids? What if I miss a therapy? Will my parents/friends understand/help? Do I have to quit my job? Everything...

22 Getting a Dx at birth has different challenges than most of the Dx given here at the CHDD The Diagnosis Odyssey, they want answers Unready for Diagnosis, they are not ready for answers If this had been our vision of Down syndrome we may not have been so scared.

23 A Diagnosis as a Road Map. Point A is the Diagnosis and B is Best Outcome/Future for the person

24 On a road trip there are lots of variables beyond point A and point B who is driving Mom, Dad, Teacher the child type of vehicle Type of Diagnosis type of fuel Lots of Energy, or Running on Empty time schedule Delay vs Long Term Impact distance - Impact of Disability stops along the way Other family member needs road conditions - Well traveled or uncharted

25 Point B is a moving target for everyone. Typical or with a Diagnosis Raising a child with special needs ID/DD/ASD involves lots of detours, but the goal is the same. Happy, Loved, Part of Society It is our responsibility to help get the journey started.

the journey. Bare bones to Designer most offer help.

26 You cannot answer ALL of the questions, but you can listen and provide some guidance Provide 1-2 immediate items for to work on such as: Access to the System -- The Shopping Malls along the journey. Bare bones to Designer most offer help. There is a direct road if diagnosed before the age of 5. Support groups, especially if they are overwhelmed The Rest Stops on the trip

27 Guidance Trusted online resources, Travel Agents for the journey. Better maps, new ideas Help with the School Systems. School Systems are like the Roads of the map. Some are well traveled, some are unpaved, some have lots of pot holes. 27

28 Our road map B out there somewhere...

Comments, questions? CONTACT US: Amy Carlsen, carlsa@uw.

29 Comments, questions? CONTACT US: Amy Carlsen, Sue Adelman, Joel Domingo,

30 References: Ashtiani, S., et al. (2013). Parents experience of receiving their child s genetic diagnosis: A qualitative study to inform clinical genetics practice. American Journal of Medical Genetics. 164A, Austin H., Katz T., & Reyes J. P. M. (2011). A clinician s guide to providing effective feedback to families affected by autism. Retrieved from Bartolo, P.A. (2002). Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks. Child: Health, care, and development. 28:1, Bostrom, P.K & Broberg, M. (2014). Openness and avoidance: A longitudinal study of fathers of children with intellectual disability. Journal of Intellectual Disability Research. 58:9, Goldfarb, F. D., et al. (2010). Partnering with professionals: Family-centered care from the parent perspective. Journal of Family Social Work. 13:2, Juckett, G. & Unger, K. (2014). Appropriate use of medical interpreters. American Family Physician. 90:7, Lipkin Jr., M., Putnam, S. M., & Lazare, A. (2011). The Medical Interview. Springer, New York, NY. Miller, E., Buys, L. & Woodbridge, S. (2012). Impact of disability of families: grandparents perspectives. Journal of Intellectual Disabilities Research, 56:1, Noonan, K., Reichman, N. E., & Corman, H. (2005) New fathers labor supply: does child health matter? Social Science Quarterly, 86, (&1419).

31 References: Noonan, K., Reichman, N. E., & Corman, H. (2005) New fathers labor supply: does child health matter? Social Science Quarterly, 86, (&1419). Norbury, C. F. & Sparks, A. (2013). Difference or disorder? Cultural issues in understanding neurodevelopmental disorders. Developmental Psychology. 49: Ravindran, N. & Myers, B. J. (2012). Cultural Influences on Perceptions of Health, Illness, and Disability: A Review and Focus on Autism. Journal of Child and Family Studies. 21:2, Seltzer, M. M., Greenberg, J. S., Floyd, F., Pettee, Y., Hong, J. (2001) Life course impacts of parenting a child with a disability. American Journal on Mental Retardation, 106, Shea, V. (1984). Explaining mental retardation and autism to parents. In E. Schopler and G.B. Mesibov (Eds.) The Effects of Autism on the Family. N.Y. Plenum, pp Swaminathan, S., Alexander, G., Boulet, S. (2006). Delivering a very low birth weight infant and the subsequent risk of divorce or separation. Maternal and Child Health Journal, 10, Waxler, J. L., et al. (2013). Hearing from parents: The impact of receiving the diagnosis of Williams syndrome in their child. American journal of medical genetics. 161:3, Wright, D. B. (2002). Delivering the hard news of mental retardation well. NASP Communiqué. 30:5. Retrieved from

For a certificate or if you have any questions about the information included in this Journal summary, please contact:

For a certificate or if you have any questions about the information included in this Journal summary, please contact: Date: May 26-27, 2010 Topic: How to Talk with Families about a Diagnosis of Autism Hosts: Jen Brown & Mary Zaremba Early Childhood Learning Network Guest Facilitators: Judy Ledman, MD, and Mareth Williams,