Book-ending Change in

Transitions:

Re-setting ExpectationsAMY BRIN MILLER, MSN, MA, PCNS-BC, ACHPN

CHILD NEUROLOGY FOUNDATION

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

Understanding the landscapeWHAT’S CURRENTLY GOING ON

“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

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

Why else is transitions important?

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

Transition

to

Adulthood

Current transition reality for >40% of young adults

=

Pushed off the Cliff

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

EXPECTATIONSIN MY WORLD, ALL THOSE BARRIERS COME DOWN TO….

Child neurology has its own set of

challengesBUT OF COURSE

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.

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.

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

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.

A Health care transition-planning algorithm for all youth and young adults within a medical home interaction

©2011 by American Academy of Pediatrics

©2011 by American Academy of Pediatrics

©2011 by American Academy of Pediatrics

©2011 by American Academy of Pediatrics

THE SIX CORE ELEMENTS of Health Care TransitionsOR

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

What about consumer

expectations?BOOK-ENDING CHANGE.

Balanced expectations.

Family Professional Partnership Model

This can happen. Really . Starts with expectations.

Remember the call to specialty

community?NEUROLOGY WILL BE THE FIRST TO FORMALLY RESPOND.

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

But what can you do on Tuesday?

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!

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….

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.

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.

Thank you!AMILLER@CNFMAIL.ORG

Thank you!AMILLER@CNFMAIL.ORG

Caring for the Caregiver & SiblingsJill Karnes, MS, MSW, LISW-SNationwide Children’s Hospital

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

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.”

Children diagnosed with Lennox-Gastaut syndrome

Child

Caregivers

Family

Siblings

SchoolHealthcare

System

Friends

Communit

y

“But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.”

Caregiver Stress & Burden

CulturalSpiritual

Patient preferences

Family Dynamics

Interested Parties

Burdens of Treatment

Pain & other symptoms

Uncertainty

Quality of Life

MedicalIndications

Care Decisions

Caregiver Stress Categories

I. Time of Diagnosis

II. Developmental Transitions

III. Ongoing health care needs of the child

IV. Illness exacerbations and hospitalizations

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

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

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

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

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

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

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.”

“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.”

Sibling Adjustment & Coping

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.

Common Developmental Reactions to Loss

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”.

6-9 Years– Elementary

Common Developmental Reactions to Loss

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.

9-12 years – Early adolescence

Common Developmental Reactions to Loss

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.

13-18 years – Adolescence

Transactional Stress & Coping Model - Siblings

Illness ParametersFamily Adaptational

Processes

Sibling Adaptational

ProcessesWell-Being

Sibling

AdjustmentSibling Coping

Family

CopingDemographics

Family Parameters

Family

Function

ing

Sibling Self Efficacy

& Perceived Social

Support

Ecological Variables

Mediating Variables

Outcome Variables

Gold, Treadwell, Weissman, & Vichinsky, 2008

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, CCLSNationwide Children’s Hospital

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, CCLSNationwide Children’s Hospital

Caregiver Interventions

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?

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

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

Caregiver Quality of Life

Posttraumatic

Growth

Caregiver

Burden

Burnout

Positive reappraisal

Revised Goals

Self-Care

Social Support

Positive Events

Self-Care Plan

• Self-Nurture

• Spirituality/Faith traditions

• Creativity

• Attitude

• Relationships

Self-NurtureExercise

Guided Imagery Meditation Relaxation Visualization

Sleep

Diet

Massage

Garden

Shop

Spiritual/Faith Traditions

WorshipPrayer / MeditationSpiritual ReadingGroup StudiesConnection with a Higher Power through nature

Music, Arts, StorytellingListen to music

Play an instrument

Draw, paint

Journal, tell your story

Needlework

Attitude

Relationships

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

“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.”

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

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

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.

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

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

Contact Information

Jill Karnes, MS, MSW, LISW-S

Nationwide Children’s Hospital

Jill.karnes@nationwidechildrens.org

614-722-1818

www.nationwidechildrens.org