greenley family sba presentation 6.21.10

8/8/2019 Greenley Family Sba Presentation 6.21.10

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A Family Program to Encourage

Independence in Children with

Spina Bifida

Rachel Neff Greenley PhDAssistant Professor of Psychology

Rosalind Franklin University of Medicine & Science

[email protected]



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 amongfamilies of children with spina bifida

• Overview of a program to teach families to identify andresolve barriers to self management skill development

• Program evaluation results

• Practical suggestions for enhancing child involvementin condition management



Defining Self Management

• Self management refers to the patient’s involvement in themanagement of their medical condition

• An individual’s ability to manage the symptoms, treatment,physical, and psychosocial consequences and life style changesinherent 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.




• 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 requiredof the same person depending upon the status of their condition




• 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 gapsin their knowledge about spina bifida1

– In order to successfully manage one’s condition, a personmust know:

• 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

1Greenley, Coakley, Jandasek, & Holmbeck (2006)





• 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 tolearn these skills

2

Bruno, Holmbeck, et al. (2005)





• Parents of children with spina bifida use higher rates of protective parenting than do parents of able bodiedyouth3

– Protective parenting may make it more difficult for childrenand teens with spina bifida to do things outside of the homeand learn to manage their condition when their parents are notaround

3Holmbeck, Johnson, et al. (2002)





• Youths with spina bifida are less involved in decision makingwithin 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 tolearn more about spina bifida or to be more involved in taking care of themselves

3Holmbeck, Johnson, et al. (2002)





• Barriers to self management skill development arenormal

• Some families may experience more barriers thanothers

• 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 lowlevels of independence in the domains of independent living,employment, and community functioning1-7

• Teaching children to gradually take on more conditionmanagement responsibilities may help promoteindependence 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

FamilyCommunication &Decision Making

Confidence andKnowledge about

Spina BifidaManagement

ParentProtectiveness

Self

ManagementSkills 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 managingspina 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 wantsmore

responsibilityin conditionmanagement

Reduced TeenAutonomy

Parentsworried,maintain

soleresponsibility

Teen refusal &regression,

increasedfamily conflict



Formulating Shared Problem

DefinitionKate should be more involved in

taking her daily medication thanshe currently is.

G i & E l i



Generating & Evaluating

SolutionsSolution Mom Dad Kate

Kate takes her medication on her own when a timer goes off.

- - +

Kate puts medication in pill box at the beginning of each week with parent supervision, but parents do therest.

+ + -

Family posts a list of pills to take at which times andKate follows this schedule.

+ + +

Kate tracks on calendar when takes meds and parents

check this twice a day to supervise+ + +

D l i Pl f



Developing Plan for

Implementing Solution

Our plan:___________________________

__________________________________

Where to be done?___________________

When to be done? _______________________ Who will be involved?_____________________

Parent responsibilities:____________________

Child responsibilities:_____________________

M i i S f l f



Monitoring Successfulness of

Solution

Day Tried Solution? How Well Did it Work?1 = Did Not Work At All2 = Worked A Little3 = Worked Pretty Well

4 = Worked Very Well

Any Problems?

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

Days I Tried the Solution

Goal/Solution:_______________________



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 toparticipation?



Reasons for Refusal & Discontinuation

• Declined to Participate

(n= 23)

• 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

Unspecified

Too Busy

No HelpNeeded

Distance/Tranportation/Locaion Issues

47%

26%

11%

16%

16%




Who are the families thatagree 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 AfricanAmerican (2) or Biracial (1)

•Family annual income varied from under $30,000 to

over $100,000




What did families think of the program?



Enjoyment of Program

0%10%20%30%40%50%

60%70%80%90%

100%

Parent Child

Neutral

Agree

Strongly Agree

“I enjoyed participating in this program.”

P i d H l f l f



Perceived Helpfulness of

Intervention in Improving Selected

Areas

0

1020

30

40

50

6070

80

90

100

Child Self

Mgmt

Fam Prob

Solv

Fam

Comm

Knowledge

Child

Parent

%

Agr

eeorStrongly

Agree




Did the program work?



Program Outcomes

• There was a large increase in parent report of childself management skills from before to after theintervention

•There was a medium size decrease in parent burdenfrom before to after the intervention

•There was only a small increase in parents’ positivebeliefs about their child’s ability to be independent in thefuture from before to after the intervention



Take Home Message

• Teaching families problem solving skills maybe a way to help encourage greater childinvolvement 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 aboutspina bifida and what they

don’t know

hi hild h ld b



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 problemwith your shunt?

K Thi Y Child Sh ld K b




Spina Bifida

For Children who Must Catheterize

• Why do some kids with spina bifida need to performclean intermittent catheterization?

• What might happen if kids don’t catheterize oftenenough?

• What are the steps for catheterization?

• Why is using sterile equipment important?





Spina Bifida

For Children who Have Bowel Programs

• Why do some kids with spina bifida need to follow abowel program?

• What might happen if kids don’t do their bowelprogram often enough?

• What are the steps for completing the bowelprogram?

• How does the food you eat influence your bowelhealth?





Spina Bifida

For Children who Have Latex Sensitivities:

• What are some of the major products that containlatex?

• What might happen if you come into contact withlatex?

• What should you do if you come into contact withlatex?





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 rightor is making you feel bad?

K Thi Y Child Sh ld K b t




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 withyour skin?

• What are things you can do to prevent skin breakdowns (besideschecking your skin)?



Tips on Assessing Knowledge

• Reassure your child that it is ok if they don’tunderstand something and encourage them to let youknow if they don’t

• Determine if your child has the necessary skills tocarry 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 whileyou watch



Suggestion 2:

Teaching about SpinaBifida 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 BeAn Active Participant in

Their Care

Tips for Promoting Child



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 inhopes 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 completinga given task and post these in places where your child can seethem



Suggestion 4:

Remember that Disagreementsare Normal…Especially

During the Teen Years



Tips on Resolving Family Disagreements

• Choose a solution that all family members think is agood idea

• Make a specific plan for implementing the solution &write it down!

– 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



Suggestion 5:

Sometimes Kids and Teens

May Need a Little ExtraPush 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 asufficient 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 apoint/chip/sticker

• After accumulating a predetermined number of points/chips/stickers, they can “cash them in” for some desiredreward

– Trip to the dollar store to buy a toy

– Special outing with parent

– Have a friend over





Teens to Learn Self Care Skills

• Might need to consider giving a concretereinforcement (at least temporarily) – For older children or teens:

• Could use a calendar to check off each day they perform thetask 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 ChildInvolved 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 newskills, 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





Child More Involved

• Remind yourself of the long term benefits of gettingyour 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 asneeded



Suggestion 7:

Develop and Maintain HighExpectations for Your

Child

i i i i h i



Maintaining High Expectations

• Pay attention to unhelpful thoughts that might creep up and replacethem 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 theend of elementary school1

– Children with more severe impairments (e.g., thoracic lesion, wheelchair

bound, shunted hydrocephalus, mild cognitive impairment) can achieve independence 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.

A k l d



Acknowledgements

• 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 ReserveUniversity School of Medicine

– Alexandra Jeanblanc – Dennis Drotar

– Spina Bifida ClinicProviders

Participating Families

Research Assistants and Collaborators:

A k l d



Acknowledgements

Spina Bifida Association of America

2005 Young Investigator’s Award

PI = Rachel Neff Greenley, Ph.D.

greenley family sba presentation 6.21.10

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