A Family Program to Encourage
Independence in Children with
Spina Bifida
Rachel Neff Greenley PhD
Assistant Professor of Psychology
Rosalind Franklin University of Medicine & Science
Rachel.Greenley@rosalindfranklin.edu
Disclosures
• Funded by a 2005 Spina Bifida Association of
America Young Investigator Award
Overview
• Definition and importance of self management
• Barriers to self management skill development among
families of children with spina bifida
• Overview of a program to teach families to identify and
resolve barriers to self management skill development
• Program evaluation results
• Practical suggestions for enhancing child involvement in
condition management
Defining Self Management
• Self management refers to the patient’s involvement in the
management of their medical condition
• An individual’s ability to manage the symptoms, treatment,
physical, and psychosocial consequences and life style
changes inherent in living with a chronic condition1
1Barlow,
J, Wright, C, Sheasby, J., Turner, A, Hainsworth, J. (2002). Self
management approaches for people with chronic conditions: A review.
Patient Educ Couns, 48, 177-187.
Defining Self Management
• The different tasks associated with self
management vary depending upon the type of
chronic condition that an individual has
• Different self management tasks may be required
of the same person depending upon the status of
their condition
Defining Self Management
• For families of youths with spina bifida, self
management may include the following:
–
–
–
–
–
–
–
–
–
–
Clean intermittent catheterization
Bowel program
Skin checks
Use of braces or wheelchair for ambulation
Medication to prevent urinary infections
Dietary modifications related to bowel program
Dietary modifications related to weight control
Monitoring for signs of illness, shunt malfunction
Scheduling and attending medical appointments
Arranging for medication to be administered at school
Barriers to Self Management in
Youths with Spina Bifida
• Many children and teens with spina bifida have gaps
in their knowledge about spina bifida1
– In order to successfully manage one’s condition, a person
must know:
•
•
•
•
•
1Greenley,
What they are supposed to do
How to perform the task correctly
When to carry out the task
Why it is important to carry out the task
What might happen if the task is not done
Coakley, Jandasek, & Holmbeck (2006)
Barriers to Self Management in
Youths with Spina Bifida
• Families’ expectations for independence decrease
over time2
– If parents don’t expect their children to be able to manage
their condition, they may provide fewer opportunities for
children to learn these skills
2Bruno,
Holmbeck, et al. (2005)
Barriers to Self Management in
Youths with Spina Bifida
• Parents of children with spina bifida use higher rates
of protective parenting than do parents of able bodied
youth3
– Protective parenting may make it more difficult for children
and teens with spina bifida to do things outside of the home
and learn to manage their condition when their parents are
not around
3Holmbeck,
Johnson, et al. (2002)
Barriers to Self Management in
Youths with Spina Bifida
• Youths with spina bifida are less involved in decision
making within the family than are able bodied youths3
– Because many children with spina bifida tend to be quiet and
speak up less often during family interactions, they may not
ask for opportunities to learn more about spina bifida or to be
more involved in taking care of themselves
3Holmbeck,
Johnson, et al. (2002)
Barriers to Self Management in
Youths with Spina Bifida
• Barriers to self management skill development are
normal
• Some families may experience more barriers than
others
• At certain times within an individual family there may
be more barriers present than at other times
• Some barriers are easier to change than others
Why Is It Important to Decrease
Barriers to Self Management?
• Teens and young adults with spina bifida are at risk
for low levels of independence in the domains of
independent living, employment, and community
functioning1-7
• Teaching children to gradually take on more condition
management responsibilities may help promote
independence in the long run
1Andren
& Grimby, 2004; 2Benjamin, 1984; 3Date, Yagyu, & Asari, 1993; 4Dillion et
al., 2000; 5Greenley, Holmbeck, Zukerman, & Buck, 2006; 6Lonton, Loughlin, &
O’Sullivan, 1984; 7McDonnell & McCann, 2000;
How might we improve self
management skills in
children with spina bifida?
Conceptual Framework
Confidence and
Knowledge about
Spina Bifida
Management
Family
Communication &
Decision Making
Parent
Protectiveness
Self
Management
Skills
Independence
How can we use this model
to create a program for
families?
Program Overview
• Two 60-90 minute meetings
– Child and at least 1 parent present
– Trained interventionist leads each session
– Meetings held individually with each family
• Meetings involved
–
–
–
–
–
–
Reviewing barriers for the individual family
Providing education
Teaching problem solving skills
Practice with problem solving during the meeting
Home practice with problem solving
Setting goals to increase child involvement in managing
spina bifida
Session Outline
• Introduce/Review Problem Solving Model
• Educate about Selected Barrier
– Family Communication/Decision Making
– Condition Knowledge/Efficacy Beliefs
• Apply Problem Solving Model to Family Issue
• Develop Plan for Home Practice
Program Goal: Altering this Pathway
Kate wants
more
responsibility
in condition
management
Parents
worried,
maintain
sole
responsibility
Teen refusal &
regression,
increased
family conflict
Reduced Teen
Autonomy
Formulating Shared Problem
Definition
Kate should be more involved in
taking her daily medication than
she currently is.
Generating & Evaluating
Solutions
Solution
Kate takes her medication on her own when a timer
goes off.
Mom
Dad
-
-
Kate
+
Kate puts medication in pill box at the beginning of
each week with parent supervision, but parents do
the rest.
+
+
-
Family posts a list of pills to take at which times and
Kate follows this schedule.
+
+
+
Kate tracks on calendar when takes meds and
parents check this twice a day to supervise
+
+
+
Developing Plan for
Implementing Solution
Our plan:___________________________
__________________________________
Where to be done?___________________
When to be done? _______________________
Who will be involved?_____________________
Parent responsibilities:____________________
Child responsibilities:_____________________
Monitoring Successfulness of
Solution
Goal/Solution:_______________________
Days I Tried the Solution
Day
Tried Solution?
Any Problems?
How Well Did it Work?
1 = Did Not Work At All
2 = Worked A Little
3 = Worked Pretty Well
4 = Worked Very Well
Sunday
Y
N
1
2
3
4
Monday
Y
N
1
2
3
4
Tuesday
Y
N
1
2
3
4
Wednesday
Y
N
1
2
3
4
Thursday
Y
N
1
2
3
4
Friday
Y
N
1
2
3
4
Saturday
Y
N
1
2
3
4
Results of the Program
Evaluation
Participants
• Eligibility criteria:
– Diagnosis of spina bifida
– Age 8-17 years
– English speaking
– Able to read and understand
questionnaires
– Parent available to participate in all visits
Preliminary Results:
What are the barriers to
participation?
Reasons for Refusal & Discontinuation
•
Declined to Participate
(n= 23)
Unspecified
47%
Too Busy
26%
No Help
Needed
11%
16%
•
Distance/Trans
portation/Locat
ion Issues
16%
Discontinued Study after Consenting (n=3)
– Too far to travel for repeated visits
– Child did not want to continue study
– Family too busy to schedule more appointments
Preliminary Results:
Who are the families that
agree to participate?
Participant Characteristics
•14 families participated
•Children ranged in age from 8 to 15 years
•About equal numbers of boys (6) and girls (8)
participated
•Most families were Caucasian (11), a few were African
American (2) or Biracial (1)
•Family annual income varied from under $30,000 to
over $100,000
Participant Characteristics
• All children had the myelomeningocele type of spina bifida
• 71% of children (n = 10) had a shunt
• 86% of children (n = 12) had lumbar lesions. The rest
(14%) had thoracic lesions.
• 57% (n = 8) of children used a wheelchair as their primary
method of ambulation
• Most children needed to catheterize (86%, n = 12)
• Most children had daily bowel management programs
(64% n = 9)
• Most children needed to take daily medication (93% n =
13)
Preliminary Results:
What did families think of
the program?
Enjoyment of Program
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Neutral
Agree
Strongly Agree
Parent
Child
“I enjoyed participating in this program.”
% Agree or Strongly Agree
Perceived Helpfulness of
Intervention in Improving Selected
Areas
100
90
80
70
60
50
40
30
20
10
0
Child
Parent
Child Self
Mgmt
Fam Prob
Solv
Fam
Comm
Knowledge
Perceived Stressfulness of
Changes
% Agree or Strongly Agree
• “The changes that we were asked to make were stressful”
50
45
40
35
30
25
20
15
10
5
0
36%
29%
Child
Parent
Preliminary Results:
Did the program work?
Program Outcomes
• There was a large increase in parent report of child
self management skills from before to after the
intervention
•There was a medium size decrease in parent burden
from before to after the intervention
•There was only a small increase in parents’ positive
beliefs about their child’s ability to be independent in the
future from before to after the intervention
Take Home Message
• Teaching families problem solving skills may
be a way to help encourage greater child
involvement in their own condition
management
Practical Suggestions for
Enhancing Child
Involvement in Their Own
Care
Suggestion 1:
Talk with your child to figure
out what they know about spina
bifida and what they don’t know
Key Things Your Child Should Know about
Spina Bifida
For Children with Shunts
•
•
•
•
What is a shunt?
What does a shunt do?
How does it feel when a shunt is not working right?
What should you do if you think there is a problem
with your shunt?
Key Things Your Child Should Know about
Spina Bifida
For Children who Must Catheterize
• Why do some kids with spina bifida need to perform
clean intermittent catheterization?
• What might happen if kids don’t catheterize often
enough?
• What are the steps for catheterization?
• Why is using sterile equipment important?
Key Things Your Child Should Know about
Spina Bifida
For Children who Have Bowel Programs
• Why do some kids with spina bifida need to follow a
bowel program?
• What might happen if kids don’t do their bowel
program often enough?
• What are the steps for completing the bowel
program?
• How does the food you eat influence your bowel
health?
Key Things Your Child Should Know about
Spina Bifida
For Children who Have Latex Sensitivities:
• What are some of the major products that contain
latex?
• What might happen if you come into contact with
latex?
• What should you do if you come into contact with
latex?
Key Things Your Child Should Know about
Spina Bifida
For Children who Take Medication:
•
•
•
•
•
•
•
•
What are the names of the medications you take?
How often are you supposed to take each medicine?
How much medicine should you take each time?
What does each medication do?
What pharmacy do you use?
What are the steps for getting your medication refilled?
What should you do if the pharmacy can’t refill the prescription?
What should you do if you think your medicine isn’t working right
or is making you feel bad?
Key Things Your Child Should Know about
Spina Bifida
For Children at Risk for Skin Breakdowns:
•
•
•
•
How often should you check your skin?
What might happen if you don’t check your skin?
What are the steps to checking your skin?
What are the signs that something might be wrong
with your skin?
• What should you do if you are worried there is a
problem with your skin?
• What are things you can do to prevent skin
breakdowns (besides checking your skin)?
Tips on Assessing Knowledge
• Ask open ended questions rather than closed ended questions
• Open ended questions
– Tell me how you might feel if your shunt isn’t working right?
– How many times a day have the doctors said you should
catheterize?
– Why do the doctors want you to check your skin each day?
• Closed ended questions
– You know the catheterization steps, right?
– You know that a bad headache can mean that your shunt isn’t
working right, don’t you?
Tips on Assessing Knowledge
• Reassure your child that it is ok if they don’t
understand something and encourage them to let you
know if they don’t
• Determine if your child has the necessary skills to
carry out different tasks
– Start by having them help you with different steps—at first
the simplest parts, later more complex tasks
– Eventually have them carry out the task on their own while
you watch
Suggestion 2:
Teaching about Spina Bifida
Should Start Early and Occur
Multiple Times
Ideas for Where to Find Educational Information
• Within your spina bifida clinic
• SBA online resources or handouts
• Local spina bifida organizations
• Spinabilities: A Young Person’s Guide to Spina Bifida
by Marlene Lutkenhoff & Sonya Oppenheimer
– Available through SBA website
Suggestion 3:
Encourage your Child to Be
An Active Participant in
Their Care
Tips for Promoting Child
Involvement in Their Care
• Hold family meetings to discuss important topics
• Resist the urge to keep important decisions from your child in
hopes of reducing their worry or fear
• Praise your child for coming to you with questions or for
speaking up about his/her opinion
• Help your child to make a list of questions that he/she has for
the doctor prior to the appointment
• Encourage your child to ask those questions
– Can role play at home to practice what to say
• Make lists/diagrams of the different steps involved in completing
a given task and post these in places where your child can see
them
Suggestion 4:
Remember that Disagreements
are Normal…Especially During
the Teen Years
Tips on Resolving Family Disagreements
• Include all relevant family members in the process
• Get input from all family members about what they
think the problem is
• Come to an agreement together on what the problem
is
• Brainstorm solutions to the problem
– Let everybody give solutions
– Don’t judge whether the solutions are good or bad at this
point
• Once you have a number of solutions, let each family
member have a vote on which solutions they like and
don’t like
Tips on Resolving Family Disagreements
• Choose a solution that all family members think is a
good idea
• Make a specific plan for implementing the solution &
write it down!
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–
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–
–
What is the child’s responsibility?
What is the parent’s responsibility?
When will you implement the solution?
Where will you implement the solution?
How long will you try the solution?
• Come up with a way to track if the solution is working
– Keeping track on a calendar or chart
Tips on Resolving Family Disagreements
• After trying the solution for a while, meet as a family
to figure out if it is working
– If it is, talk about a plan to continue this solution
– If it isn’t, talk about some changes that might help it to work
better
Suggestion 5:
Sometimes Kids and Teens
May Need a Little Extra Push
To Do The Right Thing
Suggestions for Helping to Motivate Kids and
Teens to Learn Self Care Skills
• Knowing that it is good for their health often isn’t a
sufficient motivator
• Might need to consider giving a concrete
reinforcement (at least temporarily)
– For young children:
• Each time they perform the desired task, they can earn a
point/chip/sticker
• After accumulating a predetermined number of
points/chips/stickers, they can “cash them in” for some desired
reward
– Trip to the dollar store to buy a toy
– Special outing with parent
– Have a friend over
Suggestions for Helping to Motivate Kids and
Teens to Learn Self Care Skills
• Might need to consider giving a concrete
reinforcement (at least temporarily)
– For older children or teens:
• Could use a calendar to check off each day they perform the
task they are supposed to
• After reaching a certain number of days of performing the task,
they earn a reward
– Have a friend sleep over
– Rent/go to a movie
– Get out of a disliked chore
– Go to the mall
Suggestion 6:
Remember that in the Short
Term, Getting your Child
Involved May Cause Added
Stress…But in the Long Term It
is What is Best for Them
Tips on Minimizing Stress While Getting Your
Child More Involved
• When setting aside time for teaching your child new
skills, choose “low stress” times
– When you don’t have many other tasks to do
– When you don’t have other people competing for your
attention
– Eliminate other distractions like TV, etc.
• Remember that some opportunities for child
involvement are better than no opportunities
– Ok to have child perform task at less busy times (e.g.,
weekends) and for you to do it when in a time crunch
Tips on Minimizing Stress While Getting Your
Child More Involved
• Remind yourself of the long term benefits of getting
your child involved can be helpful
– Could make and post a list of these as a reminder
• Seek support when needed
– Helping your child learn these skills is hard work. Get
support from family, friends, health care providers as needed
Suggestion 7:
Develop and Maintain High
Expectations for Your Child
Maintaining High Expectations
•
Pay attention to unhelpful thoughts that might creep up and replace
them with more helpful thoughts
– This is too hard for my child. Vs. This is hard now, but it will get easier with
practice.
– My child will never be able to do this alone, so it is pointless to try to teach
them now. Vs. Even if my child needs some help with this in the future that
is ok. It is still important for them to learn how to do it.
•
Most health care professionals believe that:
– Children with moderate impairments (e.g., lumbar lesion, braces for
ambulation, shunted hydrocephalus, some bowel and bladder sensation)
can achieve independence in key bowel bladder and skin care tasks by the
end of elementary school1
– Children with more severe impairments (e.g., thoracic lesion, wheelchair
bound, shunted hydrocephalus, mild cognitive impairment) can achieve in
dependence in most key bowel, bladder, and skin care tasks by the end of
high school1
1Greenley,
R. N. (2010). Health professional expectations for
self-care skill development in youth with spina bifida. Pediatric
Nursing, 36, 98-102.
Acknowledgements
Participating Families
Research Assistants and Collaborators:
• Medical College of
Wisconsin & Children’s
Hospital of Wisconsin
– Spina Bifida Clinic
Providers
– Tera Bartelt
– Heidi Miranda
– Karen Rauen
• University of Wisconsin
Milwaukee
– Kathleen Sawin
– Jessica Joseph
– Katherine Simon
• Case Western Reserve
University School of Medicine
– Alexandra Jeanblanc
– Dennis Drotar
– Spina Bifida Clinic
Providers
Acknowledgements
Spina Bifida Association of America
2005 Young Investigator’s Award
PI = Rachel Neff Greenley, Ph.D.