1. 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

2. Disclosures Funded by a 2005 Spina Bifida Association of America Young Investigator Award

3. 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

4. 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 condition 1 1 Barlow, 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.

5. 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

6. 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

7. Barriers to Self Management in Youths with Spina Bifida Many children and teens with spina bifida have gaps in their knowledge about spina bifida 1 –In order to successfully manage one’s condition, a person must 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 1 Greenley, Coakley, Jandasek, & Holmbeck (2006)

8. Barriers to Self Management in Youths with Spina Bifida Families’ expectations for independence decrease over time 2 –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 2 Bruno, Holmbeck, et al. (2005)

9. 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 youth 3 –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 3 Holmbeck, Johnson, et al. (2002)

10. 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 youths 3 –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 3 Holmbeck, Johnson, et al. (2002)

11. 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

12. 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 functioning 1-7 Teaching children to gradually take on more condition management responsibilities may help promote independence in the long run 1 Andren & Grimby, 2004; 2 Benjamin, 1984; 3 Date, Yagyu, & Asari, 1993; 4 Dillion et al., 2000; 5 Greenley, Holmbeck, Zukerman, & Buck, 2006; 6 Lonton, Loughlin, & O’Sullivan, 1984; 7 McDonnell & McCann, 2000;

13. How might we improve self management skills in children with spina bifida?

14. Conceptual Framework Family Communication & Decision Making Confidence and Knowledge about Spina Bifida Management Parent Protectiveness Self Management Skills Independence

15. How can we use this model to create a program for families?

16. 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

17. 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

18. Program Goal: Altering this Pathway Kate wants more responsibility in condition management Reduced Teen Autonomy Parents worried, maintain sole responsibility Teen refusal & regression, increased family conflict

19. Formulating Shared Problem Definition Kate should be more involved in taking her daily medication than she currently is.

20. Generating & Evaluating Solutions SolutionMomDadKate 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 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 +++

21. Developing Plan for Implementing Solution Our plan:___________________________ __________________________________ Where to be done?___________________ When to be done? _______________________ Who will be involved?_____________________ Parent responsibilities:____________________ Child responsibilities:_____________________

22. Monitoring Successfulness of Solution DayTried Solution?How Well Did it Work? 1 = Did Not Work At All 2 = Worked A Little 3 = Worked Pretty Well 4 = Worked Very Well Any Problems? SundayYNYN12 3 4 MondayYNYN12 3 4 TuesdayYNYN12 3 4 WednesdayYNYN12 3 4 ThursdayYNYN12 3 4 FridayYNYN12 3 4 SaturdayYNYN12 3 4 Days I Tried the Solution Goal/Solution:_______________________

23. Results of the Program Evaluation

24. 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

25. Preliminary Results: What are the barriers to participation?

26. 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 47% 26% 11% 16%

27. Preliminary Results: Who are the families that agree to participate?

28. 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

29. 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)

30. Preliminary Results: What did families think of the program?

31. Enjoyment of Program “I enjoyed participating in this program.”

32. Perceived Helpfulness of Intervention in Improving Selected Areas % Agree or Strongly Agree

33. Perceived Stressfulness of Changes “The changes that we were asked to make were stressful” % Agree or Strongly Agree 29% 36%

34. Preliminary Results: Did the program work?

35. 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

36. Take Home Message Teaching families problem solving skills may be a way to help encourage greater child involvement in their own condition management

37. Practical Suggestions for Enhancing Child Involvement in Their Own Care

38. Suggestion 1: Talk with your child to figure out what they know about spina bifida and what they don’t know

39. 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?

40. 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?

41. 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?

42. 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?

43. 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?

44. 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)?

45. 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?

46. 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

47. Suggestion 2: Teaching about Spina Bifida Should Start Early and Occur Multiple Times

48. 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

49. Suggestion 3: Encourage your Child to Be An Active Participant in Their Care

50. 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

51. Suggestion 4: Remember that Disagreements are Normal…Especially During the Teen Years

52. 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

53. 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! –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

54. 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

55. Suggestion 5: Sometimes Kids and Teens May Need a Little Extra Push To Do The Right Thing

56. 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

57. 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

58. 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

59. 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

60. 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

61. Suggestion 7: Develop and Maintain High Expectations for Your Child

62. 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 school 1 –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 school 1 1 Greenley, R. N. (2010). Health professional expectations for self-care skill development in youth with spina bifida. Pediatric Nursing, 36, 98-102.

63. 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 Reserve University School of Medicine –Alexandra Jeanblanc –Dennis Drotar –Spina Bifida Clinic Providers Participating Families Research Assistants and Collaborators:

64. Acknowledgements Spina Bifida Association of America 2005 Young Investigator’s Award PI = Rachel Neff Greenley, Ph.D.