Written Care Plans for Children with Chronic Conditions: What Do Families Think?

1. Written Care Plans for Children with Chronic Conditions: What Do Families Think? Linda Barnhart Shervin Churchill Jean Popalisky Nanci Villareale June 24, 2006

2. Purpose of Presentation • Briefly describe Washington State Children with Special Health Care Needs Program • Share results of Parent Survey on Written Care Plans

3. CSHCN Program in Washington State • The Children with Special Health Care Needs Program (CSHCN) is one of several programs in the Office of Maternal and Child Health in the Division of Community and Family Health.

4. The CSHCN Program serves children with special health care needs and their families in many ways…

5. Develop and promote resource materials for families and professionals

6. Support Public Health Nurses in LocalHealthDepartments to provide: nursing assessment, interventions & care coordination

7. AAP Policy Statement on Care Coordination • “A process that links children with special health care needs and their families to services and resources in a coordinated effort to maximize the potential of the children and provide them with optimal health care.”

8. Input from providers • “Care Coordination for CSHCN in Washington State is fragmented.” WISE Grant 2001-2005 finding • “Care Coordination is needed but is time-consuming…” Medical Home Survey of providers 2005

9. Input from families • Kate’s story “The agencies did not coordinate or communicate with each other… we were mired in paperwork.”

10. Receiving input from parents Care Plan Survey for parents of children with special health care needs -- 2006

11. Objectives Survey parents of children with special health care needs (CSHCN) to explore: • Perceptions about written care plans (WCP) including purposes and uses • Beliefs about developing and maintaining a WCP • Resources that would be useful for parents

12. Methods • Web-based survey • Parents of CSHCN, birth to 21 years • Washington State residents • Conducted Feb-March 2006 (9 weeks) • Publicized through • Parent organizations and support groups • Public health nurses • Selected clinics at Children’s Hospital

13. Limitations • Web based survey • Available only in English • Self-selected participants • Impossible to calculate response rate • Results are descriptive and qualitative, no statistical significance is associated with any of the reported results.

14. Results – Sample Description 134 respondents • Place of residence: • Western WA: 79% • Central WA: 8% • Eastern WA: 13% • Female: 94% • 30-50 yrs old: 87% • Post secondary education: 86%

15. Child Characteristics – Age Distribution

16. Child’s chronic condition description • Main diagnosis • Indicate if parent felt the child had • physical health needs • emotional or behavioral needs, and/or • developmental delay or developmental disability. • How long child has had special health care needs • How often their child’s condition changes

17. Condition Classification by Parent* • Developmental delay 80% • Emotional/behavioral 54% • Physical health needs 51% * Not mutually exclusive

19. Results- Questions on care planning • Parent had main duty to coordinate the care of their child: 95% • Had WCP at the time of the survey: 31% • Physical Health Needs* 40% • Emotional Behavioral* 35% • Developmental Delay* 30% *Not mutually exclusive

20. Proportion with WCP by age group Age Group: Percent with WCP 0 – 36 months 18% 37 months – 5 years 32% 6 – 10 years 21% 11 – 14 years 37% 15 – 21 years 48%

21. Who Developed the WCP? • Parent alone developed WCP: 26%* • Parent had help: 74%** • 34% had help from doctor’s office • 28% had help from DDD • 24% had help from a school nurse or school personnel * Of those who had WCP’s (n=40, 31% of sample) ** 44% had some help, 30% someone developed entire WCP

22. How did the WCP help the parents? • Helped keep all the important information in one place • Did not have to repeat the information • Helped all the health care providers understand the plan • A few parents said the plan did not help them

23. Importance of written care plans to families and its uses* • 86% believed it was important to have a WCP • 67% thought a WCP would help the quality of health care their child receives in different settings such as home, school and health care settings * All survey participants, regardless of whether or not they had a WCP

24. How families would use WCP’s

25. How families would use WCP’smore ways …

26. Development and maintenance of written care plans • Who should be in charge of developing WCP? • Parent working with health care professional 82% • Parent alone 15% • Health care professional alone 2%

27. Development and maintenance of written care plans • Who should be in charge of updating WCP? • Parent working with health care professional 77% • Parent alone 18% • Health care professional alone 2%

28. Development and maintenance of written care plans • How often should the WCP be updated? • As child’s needs change 57% • Annually 14% • Every 3 months 9% • Every 6 months 9% • Every time child in seen by doctor 7%

29. Development and maintenance of written care plans Where should the WCP be?

30. Learning how to Develop a WCP

31. Learning how to Develop a WCP more ways …

32. Theme from parent thoughts and comments General Perceptions: • Supportive of the idea of WCP’s • Thought WCP’s would be beneficial “This would be most helpful when seeing the different doctors my son sees every month.“

33. “We find ourselves visiting a dizzying array of medical professionals … I realized there were tests called for long ago that never occurred. If a web-based site were developed that could alert me of the need for follow-up testing, perhaps … these important tests wouldn't be missed. “ --a parent

34. Theme from parent thoughts and comments Practical suggestions: • Simple, brief, flexible • Templates and examples would help • Web-based or on a computer for easy use & updates (Potential bias of web survey population ) • Need for training

35. Theme from parent thoughts and comments A few parents had concerns: • Who controls the plan • Are WCP’s somehow tied to funding? • Recommended services may not be available

36. Discussion and Recommendations • Training parents and professionals about WCP’s as a Planning and Communication Tool • Research where WCP’s could be kept, where they could be secure and accessible

37. Resources and Information • www.cshcn.org • Can find complete results of care plan survey • Care coordination resources • www.doh.wa.gov/cfh/mch/cshcnhome2.htm • Links to resources and information about CSHCN in Washington State

38. Contact information • Washington State Department of Health Linda.Barnhart@doh.wa.gov • Children’s Hospital & Regional Medical Center Jean.Popalisky@seattlechildrens.org