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

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.

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, 91-99.

Benefits

Include:

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?)

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.

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.

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

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.

Answering parents’ questions and providing diagnostic

information about their child’s disability

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

Helping parents cope emotionally with the

knowledge of their child’s diagnosis

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, 102-110.

Noonan, K., Reichman, N. E., & Corman, H. (2005) New fathers’ labor supply: does child health matter? Social Science Quarterly, 86, 1399–1417(&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, 265–286.

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, 473–479 .

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, 1496-1502.

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, 810-821.

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, 229-245.

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. Child: Health, care, and

development. 28:1, 65-71.

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, 534-541.

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, 476-480. Norbury, C. F. & Sparks, A. (2013). Difference or disorder? Cultural issues in understanding neurodevelopmental disorders. Developmental Psychology. 49:1 45-58. 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, 311-319.

QUICKPOLL QUESTION #2

How much information is remembered from a doctor’s appointment?

A) 75 – 100 %

B) 50 – 75 %

C) 20 – 50 %

Lipkin Jr., M., Putnam, S. M., & Lazare, A. (2011). The Medical Interview. Springer, New York, NY.

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

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.

Parents Worry About

What Now??... whether or not

they get a diagnosis.

What Now??... whether or not

they get a diagnosis.

Is it my fault? Is it my fault? Is it your fault? Is it your fault? Can I handle this? Can I handle this?

Will I ever get “my” life back?

Will I ever get “my” life back?

What about the rest of my family??

What about the rest of my family??

Can I have more kids?

Can I have more kids?

What if I miss a therapy?

What if I miss a therapy?

Will my parents/friends

understand/help?

Will my parents/friends

understand/help?

Do I have to quit my job?

Do I have to quit my job?

Everything... Everything...

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.

A Diagnosis as a Road Map .

Point A is the Diagnosis and B is Best Outcome/Future for the person

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

On a road trip there are lots of variables beyond

point A and point B

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.

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

Guidance

Trusted online resources, Travel Agents for the journey.

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

Better maps, new ideas

B out there somewhere...

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Comments, questions?

CONTACT US:CONTACT US:

Amy Amy CarlsenCarlsen, , carlsacarlsa@@uw.eduuw.edu

Sue Adelman, Sue Adelman, adelms@uw.eduadelms@uw.edu

Joel Domingo,Joel Domingo, jdomingo@ujdomingo@uw.eduw.edu

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, 1496-1502.

Austin H., Katz T. , & Reyes J. P. M. (2011). A clinician’s guide to providing effective feedback to families affected by autism.

Retrieved from https://www.autismspeaks.org/sites/default/files/docs/sciencedocs/atn/delivering_feedback_manual.pdf.

Bartolo, P.A. (2002). Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation

frameworks. Child: Health, care, and development. 28:1, 65-71.

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, 810-821.

Goldfarb, F. D., et al. (2010). Partnering with professionals: Family-centered care from the parent perspective. Journal of

Family Social Work. 13:2, 91-99.

Juckett, G. & Unger, K. (2014). Appropriate use of medical interpreters. American Family Physician. 90:7, 476-480.

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, 102-110.

Noonan, K., Reichman, N. E., & Corman, H. (2005) New fathers’ labor supply: does child health matter? Social Science

Quarterly, 86, 1399–1417(&1419) .

References:

Noonan, K., Reichman, N. E., & Corman, H. (2005) New fathers’ labor supply: does child health matter? Social

Science Quarterly, 86, 1399–1417(&1419) .

Norbury, C. F. & Sparks, A. (2013). Difference or disorder? Cultural issues in understanding neurodevelopmental

disorders. Developmental Psychology. 49:1 45-58.

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, 311-319.

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, 265–286.

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 265-288.

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, 473–479.

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, 534-541.

Wright, D. B. (2002). Delivering the hard news of mental retardation well. NASP Communiqué. 30:5. Retrieved from

http://www.nasponline.org/resources/special_populations/MRConf-Checklist.pdf.