Our human compassion binds us the patronizingly,...
Transcript of Our human compassion binds us the patronizingly,...
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
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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.
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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, [email protected]@uw.edu
Joel Domingo,Joel Domingo, jdomingo@[email protected]
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.