A Family Program to Encourage Independence in Children with Spina Bifida

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 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.

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 bifida1 • 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 1Greenley, Coakley, Jandasek, & Holmbeck (2006)

8. 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)

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 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)

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 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)

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 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;

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

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

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 Parents worried, maintain sole responsibility Teen refusal & regression, increased family conflict Reduced Teen Autonomy

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

20. Generating & Evaluating Solutions

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 Goal/Solution:_______________________ Days I Tried the 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% 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” 36% 29% % Agree or Strongly Agree

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