LGS Global Conference October 2014 LGS Foundation

2. Book-ending Change in
Transitions:
Re-setting Expectations
AMY BRIN MILLER, MSN, MA, PCNS-BC, ACHPN
CHILD NEUROLOGY FOUNDATION

3. What are we going to discuss
today?
 Understand what healthcare providers mean by transitions, and the
current state of our ability to deliver transition services to young
adults
 Identify current barriers to transitions – both general and specific to
youth living with neurologic disease
 Understand the primary care community’s response to current
transition landscape
 Become familiar with the neurologic community’s current transition
effort
 Feel empowered to set and utilize expectations to drive health care
change – especially re: transition

4. Understanding the landscape
WHAT’S CURRENTLY GOING ON

5. “Just the Facts, Mam”
 18 million; 18-21 yo in U.S. will be
moving into adult healthcare
system in 2013
 Only 40% of youth report (or per
caregiver report) discussing
transition with a healthcare
providers
 1 in 4 U.S. children live with
neurologic disease
 One third or more of children with
epilepsy will continue to have
seizures through adulthood and
˜20% never have a period of
remission.
 Seventy percent to 80% of
children with epilepsy have
cognitive, behavioral, or
psychological comorbidities.
Beghi, Camfield, & Camfield; 2014

6. Why else is transitions important?
Decline in health during transition
Renal transplant loss Andreoni et al. 2013
Sickle cell disease complications Blinder et al. 2013
Increasing obesity Lee et al. 2011
Decline in health care during transition
Worsened adherence Annunziato et al. 2007
Decreased follow-up Devernay et al. 2009
Lapses in insurance coverage Goudie et al. 2011

7. Transitions
 A fluid, expected process of a young adults maintain
access to medically and developmentally-appropriate
care; in order to attain life-long functioning and well-being.
(AAP, 2011)
 Transitions is an expected reality for youth with and
without special needs
 Transition is NOT Transfer - the formal act of handing over
care from pediatric to adult health system

8. Current transition reality for >40% of young adults
Transition
to
Adulthood
=
Pushed off the Cliff

9. Transitions seems like an obvious benefit.
Why is it not getting done?
 Patients, parents/caregivers unwilling to transition
 Adult providers lack experience
 Adult providers difficult to access
 Difference in pediatric vs adult culture
 Aging out, but still youth is unready/ unwilling to take adult
responsibility
 Insurance changes
 Transportation/ Access
 Patient Seen by multiple providers without a medical home
(fragmentation of care)
 No time to discuss transition

10. EXPECTATIONS
IN MY WORLD, ALL THOSE BARRIERS COME DOWN TO….

11. Child neurology has its own set of
challenges
BUT OF COURSE 

12. Child neurology considerations: Transitions
 Formerly lethal disorders with new treatments that permit
long-term survival – Duchenne dystrophy
 Static disorders that may progress (co-morbidities) – cerebral
palsy
 Childhood disorders with increasing problems – tuberous
sclerosis
 Permanent sequellae of disorders cured in childhood – brain
tumors
 Potentially endangering disorders to self and society– ADHD
Camfield P, Camfield C. Transition to adult care for children with chronic neurological disorders. 2011. Ann Neurol, 69: 437.

13. Transition Considerations:
Lennox-Gastaut Syndrome
 Intellectual disability
 Intractable epilepsy
 Complex co-morbidity needs (CP, hip dysplasia, metabolic, gastrostomy, bone
density)
Camfield, PR., Bahi-Buisson, N., & Trinka, E. 2014. Transition issues for children with diffuse cortical malformations, multifocal postnatal
lesions, Lennox-Gastaut and similar syndromes. Epilepsia. 55(3); 24-28.

14. Something needed to change.
ALL TALK. NO CHANGE. NO DEFINED EXPECTATIONS.

15. Primary Care Community’s Response:
Consensus Statement on Transition
 American Academy of Pediatrics, American Academy of Family Physicians
and American College of Physicians
 Consensus statement provides EXPECTATIONS of primary care providers role in
health care transitions
 Practical, detailed guidance on how to plan and implement better health
care transitions for all patients (algorithm)
 Integrating transition planning into medical home care with ongoing
chronic care management
 Called for specialist providers to outline same detailed guidance
American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring
Group Pediatrics 2011;128:182-200.

16. A Health care transition-planning algorithm for all youth and young adults within a
medical home interaction
©2011 by American Academy of Pediatrics

17. ©2011 by American Academy of Pediatrics

18. ©2011 by American Academy of Pediatrics

19. ©2011 by American Academy of Pediatrics

20. THE SIX CORE ELEMENTS of Health Care Transitions
OR
THE SIX CORE PROVIDER EXPECTATIONS of Health Care Transitions
1. Policy
2. Registry
3. Readiness assessment
4. Planning transition
5. Transfer of care
6. Graduation/completion
7. Policy
8. Registry

21. What about consumer
expectations?
BOOK-ENDING CHANGE.

22. Balanced expectations.

23. Family Professional Partnership Model
This can happen. Really . Starts with expectations.

24. Remember the call to specialty
community?
NEUROLOGY WILL BE THE FIRST TO FORMALLY RESPOND.

25. Child Neurology Foundation: Outlining
the Role of Child Neurologist in Transitions
 Pending co-sponsorship from
Child Neurology Society and
American Academy of Neurology
 15 international expert panel:
child and adult neurologists,
med/ped physician, nurse,
occupational therapist, patient,
caregiver, and medical
informatician
 Launched June 2014
 Expected completion April 2015;
submitted for publication
 Dissemination plans with targeted
consumer education in discussion
 Supported by Eisai, Inc.
 Projected content:
 Neurology-specific review of
literature and discussion
 Core Principle recommendations
on primary and secondary
responsibilities of child and adult
neurologist
 Discussion of co-management
between primary care provider
and specialist re: neurologic care
management
 5 disease-specific vignettes
illustrating Core Principles
implementation

26. But what can you do on Tuesday?

27. Set Your Expectations
 Get informed:
 www.gottransitions.org
 www.medicalhomeinfo.org
 Check out Camfield’s article on LGS transition considerations
 Begin early
 Importance of guardianship conversation/ documentation completion
 Discussion of legal/ financial implications (i.e. Will, Trust)
 Camfield, PR., Bahi-Buisson, N., & Trinka, E. 2014. Transition issues for children with diffuse cortical malformations,
multifocal postnatal lesions, Lennox-Gastaut and similar syndromes. Epilepsia, 55(3); 24-28.
 Begin dialogue with self, family, and youth regarding transition expectations
(health care v. social)
 Begin dialogue with your provider regarding transition expectations
 Watch for CNF’s consensus statement publication in 2015!

28. Larry Brown, MD, likes to say:
“As a neurologist, I must remember that for parents,
caring for a child with a neurological disorder can seem
like traveling through a long tunnel….

29. But I must also remember that for parents, caring for a child
with Lennox Gastaut Syndrome can seem like traveling
through a long tunnel….
…. and there may not be daylight at the other side.

30. We can always
find the light.
TOGETHER. KNOWING WHAT IS EXPECTED AND WHAT IS INTENDED.
WE CAN DEFINE THE LIGHT FOR EVERY YOUTH AND FAMILY.

31. Thank you!
AMILLER@CNFMAIL.ORG

32. Thank you!
AMILLER@CNFMAIL.ORG

34. Caring for the Caregiver
& Siblings
Jill Karnes, MS, MSW, LISW-S
Nationwide Children’s Hospital

35. Objectives
• Define caregiver stress and burden related to having
a child with Lennox-Gastaut syndrome
• Identify factors that influence caregiver burden and
sibling adjustment
• Identify ways to lessen the impact of caregiver
burden
• Identify ways to help siblings adjust to having a
brother or sister with Lennox-Gastaut syndrome

36. Welcome to Holland
by Emily Perl Kingsley
When you’re going to have a baby, it’s like
planning a fabulous vacation trip to Italy.
You buy a bunch of guide books and make
your wonderful plans. The Coliseum, the
Sistine Chapel, Gondolas. You may learn
some handy phrases in Italian. It’s all very
exciting. After several months of eager
anticipation, the day finally arrives. You
pack your bags and off you go. Several
hours later, the plane lands. The
stewardess comes in and says, “Welcome
to Holland!” “Holland?” you say. “What
do you mean, Holland? I signed up for
Italy.”

37. Caregivers
Child
Communit
y
Children diagnosed with
Lennox-Gastaut syndrome
Family
Siblings
School
Healthcare
System
Friends
“But there’s been a
change in the flight
plan. They’ve landed
in Holland and there
you must stay.”

38. Caregiver Stress & Burden

39. Cultural
Spiritual
Patient
preferences
Family Dynamics
Interested Parties
Burdens
of Treatment
Quality of Life
Pain
Uncertainty
& other symptoms
Medical
Indications
Care Decisions

40. Caregiver Stress Categories
I. Time of Diagnosis
II. Developmental Transitions
III. Ongoing health care needs of the
child
IV. Illness exacerbations and
hospitalizations

41. Time of Diagnosis
Reason for stress
• Loss of “healthy
child”
• Fear of potential and
future losses
• Being unable to care
for, protect, and
parent child
Responses
• Shock
• Guilt
• Decrease
Self-Worth
• Lack of
Confidence
• Disbelief
• Anger
• Despair
• Depression
• Frustration
• Confusion
• Denial

42. Developmental Transitions
Reason for stress
• Chronic sorrow
• Comparison with
healthy peers
• Periodic Grieving
High Stress Risk
Periods
• 12-15 months –
walking
• 24-30 months –
speech
• 6 years – school entry
• Adolescence
• Transition to adult roles
& health care

43. Ongoing Health Care Needs
Reason for stress
• Chronic burden of care
• Financial burden
• Balancing child’s care
needs with demands of
daily responsibilities as
parent
Responses
• Role & relationship strain
• Effects on family life
• Overwhelming feelings of
guilt and inadequacy
• Exhausting
• Depression, anxiety

44. Illness Exacerbations and
Hospitalizations
Reason for stress
• Deterioration in child’s
functioning
• Decrease in quality of
life
Response
• Lack of control
• Powerlessness
• Fear of future
• Fear of unknown

45. Negative Impact of Caregiver Stress & Burden
• Physical health
• Psychological & Emotional health
• Tangible effects (finances)
• Subjective well-being/Spiritual
• Relationships/Parenting
• Burnout = A state of physical, emotional, and mental exhaustion caused by
long term involvement in emotionally demanding situations

46. Positive Aspects of Caregiving
“What are the factors that allow parents who
are caring for a child with a chronic medical
condition survive and even grow in the face of
adversity?”
Resilience = ability to adapt to, cope with, and even be
strengthened by adverse circumstances
Posttraumatic growth = Positive changes that people
experience as a result of adverse circumstances

47. Caregiving Growth Possibilities
I. Growth Alongside Distress
II.Building Connections
III.Becoming an Advocate
IV.Growth through Self-Care
“And you will meet a whole new group of people you would never
have met. It’s just a different place. It’s slower paced than Italy, less
flashy than Italy.”

48. “But after you’ve been there for a while
and you catch your breath, you look
around. You begin to notice that Holland
has windmills. Holland has tulips. And
Holland even has Rembrandts. But
everyone you know is busy coming and
going from Italy, and they’re all bragging
about what a wonderful time they had
there. And for the rest of your life you
will say, “Yes, that’s where I was
supposed to go. That’s what I had
planned.” And the pain of that
experience will never, ever, ever, go
away. The loss of that dream is a very
significant loss.”

49. Sibling Adjustment & Coping

50. Common Developmental Reactions to Loss
0-2 Years of Age - Infant
Physical – feeding, sleeping, toileting
difficulties
Emotional – lengthy separation from
key caregiver may lead to despair
and detachment.
Cognitive – need for distraction,
play, and stimulation.
Behavioral – Regression to an earlier
stage of development. Protests
against separation
3-5 years of age -
Preschool
Physical – feeding, sleeping, toileting
difficulties. Concern about routines.
Emotional – Fears about separation and
abandonment.
Cognitive – Will want to know what
happened and may feel it is their fault.
Behavioral – Regression to infant needs.
Aggressive, rejecting behaviors,
and/or withdrawn and/or clinging
behaviors.

51. Common Developmental Reactions to Loss
6-9 Years– Elementary
Physical – may exhibit psychosomatic symptoms (stomachaches, headaches).
They may want to be “of use” practically.
Emotional – Experience the full range of emotions as any adult.
Cognitive – Limited life exposure, has difficulty understanding what’s
happening. Often assume they were to blame. Possible learning difficulties.
Behavioral – Regression may accompany stress. May become withdrawn or
act out in anger. May exhibit behavioral difficulties at home or school.
May become the “perfect child”.

52. Common Developmental Reactions to Loss
9-12 years – Early adolescence
Physical – may exhibit psychosomatic symptoms and/or depression.
Emotional – usually manifest a more stable and accepting response.
Thoughts are more available than feelings. They do not want to lose
control.
Cognitive – Concerned with how their world will change and the implications
for the future.
Behavioral – will normally respond appropriately, although may be some
change behaviors.

53. Common Developmental Reactions to Loss
13-18 years – Adolescence
Physical – may exhibit psychosomatic symptoms and/or depression.
Increased concern and distress regarding physiological body changes.
Emotional – regression and dependence and/or taking on an adult role.
Feelings of loneliness, sadness, despair, anger, guilt, hostility, rejection.
Cognitive – try to make sense out of life. Need to make meaning of their
tears. Difficulty in concentration. Poor or changed motivation in learning.
Behavioral – exaggerated acting out behaviors, often masking fears with
joking, sarcasm, or withdrawal.

54. Transactional Stress & Coping Model - Siblings
Illness Parameters
Family Adaptational
Processes
Sibling Adaptational
Processes
Well-Being
Sibling
Adjustment
Sibling Coping
Family
Coping
Demographics
Family Parameters
Family
Function
ing
Sibling Self Efficacy
& Perceived Social
Support
Ecological
Variables
Mediating
Variables
Outcome
Variables
Gold, Treadwell, Weissman,
& Vichinsky, 2008

55. Sibling Interventions
• Journaling: especially with older school age and teens; they can write down feelings if not
able to express them or use pictures or voice recording if non reader.
• Artwork: open ended activities are great ways for children to explore and express
themselves in a creative way. Start with open ended question or general theme; gives
child control by allowing them to lead the activity.
• Games: Incorporate opportunities to express and identify feelings through games.
Examples: expressive board games such as the feelings game, adventure park
• Dramatic Play: Puppets, Barbies, Doll house (Can show in play what they may be
experiencing at home. This is a good way to engage child in problem solving and or to
express situation in a playful manner. Misconceptions may come out in this type of play
and they can be explained in developmentally appropriate language).
• Music: writing song lyrics, listening to music
Karen McHugh-Fornadel, CCLS
Nationwide Children’s Hospital

56. Sibling Interventions
• Peers: support groups, church, play dates, sporting events, school activities,
neighbor/friends, and opportunities for physical activity
• Family Activities: try to incorporate “normal” daily activities into sibling’s life as much as
possible such as (dinner, movie night, play outside, bike ride, etc.), any activity that will
enhance communication among family members
• Bibliotherapy: books are a great way to explain things in a child’s view; can use several
books and pick out relevant chapters/ segments that relate to family situation; can open
up further discussion, good way to “break the ice,” when the book is read together
http://www.bobbysbooks.org/aws/BB/pt/sp/home_page
Siblings Camp & Family Camp @ Flying Horse Farm (http://flyinghorsefarms.org/ )
Karen McHugh-Fornadel, CCLS
Nationwide Children’s Hospital

57. Caregiver Interventions

58. What are your Strengths?
• What are your 3 greatest strength?
• What are some compliments you have received from
family & friends?
• What have you done in your life of which you are
proud?
• What are some times in the past when you felt you
have been at your best?
• What qualities did you show during those times?

59. What are your Beliefs & Values?
Meaningful Symbols
• Clear off a space in your room. Maybe the top of a table. Or on the top of a
dresser. On that space, place 1, 2, 3 or 4 objects that symbolize your beliefs and
values, “the glue” that holds your world together, that which makes you want to
get up each morning.
• Possible objects:
• A book or books
• Photograph or photographs
• Religious/spiritual objects
• Mementos
• Art work
• Materials gathered from nature
• Letter, letters, or other personal documents Doug C. Smith, MA, MS, MDiv

60. Finding your “Philosophy of Care”
• Framework of care goals and values to help you
make the best choices for your child and your family
• Family’s goals & philosophy of care may change over
time
• Parents become the experts on their children and
will trust their own ability to know what their child
is telling them

61. Caregiver Quality of Life
Posttraumatic
Growth
Caregiver
Burden
Burnout
Positive reappraisal
Revised Goals
Self-Care
Social Support
Positive Events

62. Self-Care Plan
• Self-Nurture
• Spirituality/Faith traditions
• Creativity
• Attitude
• Relationships

63. Self-Nurture
Exercise
Guided Imagery Meditation
Relaxation Visualization
Sleep
Diet
Massage
Garden
Shop

64. Spiritual/Faith Traditions
Worship
Prayer / Meditation
Spiritual Reading
Group Studies
Connection with a Higher Power
through nature

65. Music, Arts, Storytelling
Listen to music
Play an instrument
Draw, paint
Journal, tell your story
Needlework

66. Attitude

67. Relationships

68. Mindfulness for Caregivers
When the Caregivers Need
Healing
http://www.nytimes.com/2014/07/29/health/when-the-caregivers-
need-healing.html?emc=eta1&_r=2

69. “But if you spend your
life mourning the fact
that you didn’t get to
Italy, you may never be
free to enjoy the very
special, the very lovely
things about Holland.”

70. Helpful Audio CD’s & Websites
• Mindfulness for Beginners (www.soundstrue.com )
• Guided Mindfulness Meditation Practice CD’s with Jon
Kabat-Zinn (www.mindfulnesscds.com )
• The World of Relaxation (www.betterlisten.com)
• Guided Imagery & Meditation by Belleruth Naparstek
(www.healthjourneys.com)
• Reflective Writing
http://homepage.psy.utexas.edu/homepage/faculty/Pennebaker
/Home2000/WritingandHealth.html

71. Recommended Websites
National Parent Network on Disabilities
• http://bryanking.net/national-parent-network-on-disabilities-npnd/
Family Voices:
• http://www.fv-impact.org/resources/special-health-care-needs/
Parent to Parent USA
• http://www.p2pusa.org/p2pusa/sitepages/p2p-home.aspx
Sibling Support Project
• http://www.siblingsupport.org/
Bobby’s Books – Books for Siblings
• http://www.bobbysbooks.org

72. Recommended Books for Caregivers
• Brantley, J. & Millstone, W. (2006) Five good minutes in the evening: 100
mindful practices to help you unwind for the day
• Borysenko, J. (2003) Inner peace for busy people: 52 simple strategies for
transforming your life.
• Fanning, P. & Mitchener, H. (2001) The 50 best ways to simplify your life
• Jeffers, S. (1987) Feel the fear and do it anyway.
• Kabat-Zinn, J. (2012) Mindfulness for Beginners: Reclaiming the present
moment and your life.
• Kushner, H. (1981) When Bad Things Happen to Good People
• O’Hanlon, B. (1999) Do one thing different: 10 simple ways to change your life.
• Posen, D. (2003) Little book of stress relief.
• Richardson, C. (1998) Take time for your life.

73. References
• Cadell, S., Kennedy, K. & Hemsworth, D. (2012) Informing Social Work Practice Through Research With
Parent Caregivers of a Child With a Life-Limiting Illness. Journal of Social Work in End-Of-Life &
Palliative Care, 8:4, 356-381, DOI: 10.1080/15524256.2012.732021
• Cousino, M.K. & Hazen, R.A. (2013). Parenting Stress Among Caregivers of Children With Chronic Illness:
A Systematic Review. Journal of Pediatric Psychology, 38(8) 809–828.
• Dykens E M, Fisher M H, Taylor J L, Lambert W, and Miodrag N. (2014). Reducing Distress in Mothers
of Children With Autism and Other Disabilities: A Randomized Trial. Pediatrics, pii: peds.2013-3164.
• Folkman, S. (1997). Positive psychological states and coping with severe stress. Social Science Medicine,
45 (8), 1207-1221.
• Gold, Treadwell, Weissman, and Vichinsky (2008). An expanded Transactional Stress and Coping Model
for siblings of children with sickle cell disease: family functioning and sibling coping,self-efficacy and
perceived social support. Child: care, health and development, 34, 4, 491–502
• Knapp, C. A. & Contro, N. (2009). Family support services in pediatric palliative care. American Journal
of Hospice & Palliative Medicine,26, 6, 476-482.
• Minor, H.G., Carlson, L.E., Mackenzie, M.J., Zernicke, K. & Jones, L. (2006). Evaluation of a
Mindfulness-Based Stress Reduction (MBSR) Program for Caregivers of Children with Chronic Conditions,
Social Work in Health Care, 43:1, 91-109

74. References
• O’hara, R., Hull, J.G., Lyons, K.D., Bakitas, M., Hegel, M.T., Li, Z., & Ahles, T.A. (2010). Impact on
caregiver burden of a patient-focused palliative care intervention for patients with advanced cancer.
Palliative and Supportive Care, 8, 395–404.
• Rodenburg, R., Meijer, A.M., Dekovic, M. & Aldenkamp, A.P. (2007). Parents of children with
enduring epilepsy – Predictors of parenting stress and parenting. Epilepsy & Behavior, 11, 197-
207.
• Singh, N. N., Lancioni, G. E., Winton, A. S. W., Wahler, R. G., Singh, J., & Sage, M. (2004). Mindful
caregiving increases happiness among individuals with profound multiple disabilities. Research in
Developmental Disabilities, 25, 207-218.
• Tedeschi, R. & Calhoun, L.G. (1996). The posttraumatic growth inventory: Measuring the positive
legacy of trauma. Journal of Traumatic stress, 9 (3) 455-471.
• Trowbridge, K. & Mische-Lawson, Lisa (2014). Families With Children With Medical Complexity and
Self-Management of Care: A Systematic Review of the Literature, Social Work in Health Care, 53:7,
640-658, DOI: 10.1080/00981389.2014.916776

75. Contact Information
Jill Karnes, MS, MSW, LISW-S
Nationwide Children’s Hospital
Jill.karnes@nationwidechildrens.org
614-722-1818
www.nationwidechildrens.org