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1.
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?
ďľ Understand what healthcare providers mean by transitions, and the
current state of our ability to deliver transition services to young
adults
ďľ Identify current barriers to transitions â both general and specific to
youth living with neurologic disease
ďľ Understand the primary care communityâs response to current
transition landscape
ďľ Become familiar with the neurologic communityâs current transition
effort
ďľ Feel empowered to set and utilize expectations to drive health care
change â especially re: transition
5. âJust the Facts, Mamâ
ďľ 18 million; 18-21 yo in U.S. will be
moving into adult healthcare
system in 2013
ďľ Only 40% of youth report (or per
caregiver report) discussing
transition with a healthcare
providers
ďľ 1 in 4 U.S. children live with
neurologic disease
ďľ One third or more of children with
epilepsy will continue to have
seizures through adulthood and
Ë20% never have a period of
remission.
ďľ 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
ďľRenal transplant loss Andreoni et al. 2013
ďľSickle cell disease complications Blinder et al. 2013
ďľIncreasing obesity Lee et al. 2011
Decline in health care during transition
ďľWorsened adherence Annunziato et al. 2007
ďľDecreased follow-up Devernay et al. 2009
ďľLapses in insurance coverage Goudie et al. 2011
7. Transitions
ďľ 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)
ďľ Transitions is an expected reality for youth with and
without special needs
ďľ Transition is NOT Transfer - the formal act of handing over
care from pediatric to adult health system
9. Transitions seems like an obvious benefit.
Why is it not getting done?
ďľ Patients, parents/caregivers unwilling to transition
ďľ Adult providers lack experience
ďľ Adult providers difficult to access
ďľ Difference in pediatric vs adult culture
ďľ Aging out, but still youth is unready/ unwilling to take adult
responsibility
ďľ Insurance changes
ďľ Transportation/ Access
ďľ Patient Seen by multiple providers without a medical home
(fragmentation of care)
ďľ No time to discuss transition
12. Child neurology considerations: Transitions
ďľ Formerly lethal disorders with new treatments that permit
long-term survival â Duchenne dystrophy
ďľ Static disorders that may progress (co-morbidities) â cerebral
palsy
ďľ Childhood disorders with increasing problems â tuberous
sclerosis
ďľ Permanent sequellae of disorders cured in childhood â brain
tumors
ďľ Potentially endangering disorders to self and societyâ 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
ďľ Intellectual disability
ďľ Intractable epilepsy
ďľ 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.
15. Primary Care Communityâs Response:
Consensus Statement on Transition
ďľ American Academy of Pediatrics, American Academy of Family Physicians
and American College of Physicians
ďľ Consensus statement provides EXPECTATIONS of primary care providers role in
health care transitions
ď Practical, detailed guidance on how to plan and implement better health
care transitions for all patients (algorithm)
ď Integrating transition planning into medical home care with ongoing
chronic care management
ď 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
Š2011 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
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
ďľ Pending co-sponsorship from
Child Neurology Society and
American Academy of Neurology
ďľ 15 international expert panel:
child and adult neurologists,
med/ped physician, nurse,
occupational therapist, patient,
caregiver, and medical
informatician
ďľ Launched June 2014
ďľ Expected completion April 2015;
submitted for publication
ďľ Dissemination plans with targeted
consumer education in discussion
ďľ Supported by Eisai, Inc.
ďľ Projected content:
ďľ Neurology-specific review of
literature and discussion
ďľ Core Principle recommendations
on primary and secondary
responsibilities of child and adult
neurologist
ďľ Discussion of co-management
between primary care provider
and specialist re: neurologic care
management
ďľ 5 disease-specific vignettes
illustrating Core Principles
implementation
27. Set Your Expectations
ďľ Get informed:
ďľ www.gottransitions.org
ďľ www.medicalhomeinfo.org
ďľ Check out Camfieldâs article on LGS transition considerations
ďľ Begin early
ďľ Importance of guardianship conversation/ documentation completion
ďľ Discussion of legal/ financial implications (i.e. Will, Trust)
ďľ 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.
ďľ Begin dialogue with self, family, and youth regarding transition expectations
(health care v. social)
ďľ Begin dialogue with your provider regarding transition expectations
ďľ Watch for CNFâs consensus statement publication in 2015!
28. Larry Brown, MD, likes to say:
âAs a neurologist, I must remember that for parents,
caring for a child with a neurological disorder can seem
like traveling through a long tunnelâŚ.
29. But I must also remember that for parents, caring for a child
with Lennox Gastaut Syndrome can seem like traveling
through a long tunnelâŚ.
âŚ. 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.
34. Caring for the Caregiver
& Siblings
Jill Karnes, MS, MSW, LISW-S
Nationwide Childrenâs 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 youâre going to have a baby, itâs 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. Itâs 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, âWelcome
to Holland!â âHolland?â you say. âWhat
do you mean, Holland? I signed up for
Italy.â
37. Caregivers
Child
Communit
y
Children diagnosed with
Lennox-Gastaut syndrome
Family
Siblings
School
Healthcare
System
Friends
âBut thereâs been a
change in the flight
plan. Theyâve landed
in Holland and there
you must stay.â
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 âhealthy
childâ
⢠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 â
walking
⢠24-30 months â
speech
⢠6 years â school entry
⢠Adolescence
⢠Transition to adult roles
& health care
43. Ongoing Health Care Needs
Reason for stress
⢠Chronic burden of care
⢠Financial burden
⢠Balancing childâs 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 childâs
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
âWhat 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?â
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
âAnd you will meet a whole new group of people you would never
have met. Itâs just a different place. Itâs slower paced than Italy, less
flashy than Italy.â
48. âBut after youâve 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 theyâre all bragging
about what a wonderful time they had
there. And for the rest of your life you
will say, âYes, thatâs where I was
supposed to go. Thatâs what I had
planned.â And the pain of that
experience will never, ever, ever, go
away. The loss of that dream is a very
significant loss.â
50. Common Developmental Reactions to Loss
0-2 Years of Age - Infant
Physical â feeding, sleeping, toileting
difficulties
Emotional â lengthy separation from
key caregiver may lead to despair
and detachment.
Cognitive â need for distraction,
play, and stimulation.
Behavioral â Regression to an earlier
stage of development. Protests
against separation
3-5 years of age -
Preschool
Physical â feeding, sleeping, toileting
difficulties. Concern about routines.
Emotional â Fears about separation and
abandonment.
Cognitive â Will want to know what
happened and may feel it is their fault.
Behavioral â Regression to infant needs.
Aggressive, rejecting behaviors,
and/or withdrawn and/or clinging
behaviors.
51. Common Developmental Reactions to Loss
6-9 Yearsâ Elementary
Physical â may exhibit psychosomatic symptoms (stomachaches, headaches).
They may want to be âof useâ practically.
Emotional â Experience the full range of emotions as any adult.
Cognitive â Limited life exposure, has difficulty understanding whatâs
happening. Often assume they were to blame. Possible learning difficulties.
Behavioral â Regression may accompany stress. May become withdrawn or
act out in anger. May exhibit behavioral difficulties at home or school.
May become the âperfect childâ.
52. Common Developmental Reactions to Loss
9-12 years â Early adolescence
Physical â may exhibit psychosomatic symptoms and/or depression.
Emotional â usually manifest a more stable and accepting response.
Thoughts are more available than feelings. They do not want to lose
control.
Cognitive â Concerned with how their world will change and the implications
for the future.
Behavioral â will normally respond appropriately, although may be some
change behaviors.
53. Common Developmental Reactions to Loss
13-18 years â Adolescence
Physical â may exhibit psychosomatic symptoms and/or depression.
Increased concern and distress regarding physiological body changes.
Emotional â regression and dependence and/or taking on an adult role.
Feelings of loneliness, sadness, despair, anger, guilt, hostility, rejection.
Cognitive â try to make sense out of life. Need to make meaning of their
tears. Difficulty in concentration. Poor or changed motivation in learning.
Behavioral â 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 Childrenâs 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 ânormalâ daily activities into siblingâs 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 childâs view; can use several
books and pick out relevant chapters/ segments that relate to family situation; can open
up further discussion, good way to âbreak the ice,â 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 Childrenâs Hospital
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, âthe glueâ 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 âPhilosophy of Careâ
⢠Framework of care goals and values to help you
make the best choices for your child and your family
⢠Familyâs 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
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. âBut if you spend your
life mourning the fact
that you didnât get to
Italy, you may never be
free to enjoy the very
special, the very lovely
things about Holland.â
70. Helpful Audio CDâs & Websites
⢠Mindfulness for Beginners (www.soundstrue.com )
⢠Guided Mindfulness Meditation Practice CDâs 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/
Bobbyâs Books â 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
⢠OâHanlon, 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) 809â828.
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74. References
⢠Oâhara, 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, 395â404.
⢠Rodenburg, R., Meijer, A.M., Dekovic, M. & Aldenkamp, A.P. (2007). Parents of children with
enduring epilepsy â 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