Written Care Plans for
Children with Chronic
Conditions: What Do
Families Think?
Linda Barnhart
Shervin Churchill
Jean Popalisky
Nanci Villareale
June 24, 2006
Purpose of Presentation


Briefly describe Washington State
Children with Special Health Care
Needs Program
Share results of Parent Survey on
Written Care Plans
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.
The CSHCN Program
serves children with
special health care needs
and their families in many
ways…
Develop
and promote
resource
materials for
families and
professionals

Support
Public Health
Nurses in
Local
Health
Departments
to provide:
nursing assessment, interventions &
care coordination
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.”
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
Input from families

Kate’s story
“The agencies did not
coordinate or
communicate with
each other… we were
mired in paperwork.”
Receiving input from
parents
Care Plan Survey for parents of
children with special health care
needs -- 2006
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
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
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.
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%
Child Characteristics – Age Distribution
35
28%
n=37
30
30%
n=39
Percent of parents
25
20
15%
n=19
15
10
18%
n=23
9%
n=12
5
0
0-36 Months 37 mo - 5 yrs
6-10 yrs
Age of Children
11-14 yrs
15-21 yrs
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
Condition Classification by Parent*
• Developmental delay
80%
• Emotional/behavioral
54%
• Physical health needs
51%
* Not mutually exclusive
Comparison with NS-CSHCN, WA sample:
"Which of these statements best describes your child's
health care needs?"
66%
70%
60%
50%
40%
37%
36%
33%
27%
30%
Care Plan survey
NS-CSHCN
20%
10%
6%
4%
1%
0%
change all the
time
change only
once in a while
are usually
stable
9-don’t
know/other
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:
 Physical Health Needs*
 Emotional Behavioral*
 Developmental Delay*
31%
40%
35%
30%
*Not mutually exclusive
Proportion with WCP by age group
Age Group:
Percent with WCP
0 – 36 months
37 months – 5 years
6 – 10 years
11 – 14 years
15 – 21 years
18%
32%
21%
37%
48%
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
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
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
How families would use WCP’s
* Assist with transitions hospital to home,
school, camp, or new doctor
74%
* Educate health care professionals
73%
* Facilitate communication between
myself and health care professionals
77%
* Keep a list of care givers and contacts
58%
* Organize care for my child
73%
How families would use WCP’s
more ways …
* Share with others involved in care of
my child
77%
* Summarize health information such as
medications, therapies and treatments
79%
* Summarize other information such as
how my child communicates or his
likes and dislikes
64%
* Use as a tool to plan for the future
59%
* Use in emergency situations
81%
Development and maintenance
of written care plans

Who should be in charge of developing
WCP?
– Parent working with health care
professional
– Parent alone
– Health care professional alone
82%
15%
2%
Development and maintenance
of written care plans

Who should be in charge of updating
WCP?
– Parent working with health care
professional
– Parent alone
– Health care professional alone
77%
18%
2%
Development and maintenance
of written care plans

How often should the WCP be
updated?
– As child’s needs change
– Annually
– Every 3 months
– Every 6 months
– Every time child in seen by doctor
57%
14%
9%
9%
7%
Development and maintenance
of written care plans
Where should the WCP be?
Electronic, on a private computer at home
Electronic, on private computer at the doctor's
office
36%
On paper, at home
54%
On paper, at the doctor's office in medical chart
Web-based with password access for parent,
doctor and others chosen by parent
41%
23%
56%
Learning how to Develop a WCP
• A form or forms that could be filled
out
80%
• Information from a health care
provider
47%
• Information from a parent with
experience
44%
Learning how to Develop a WCP
more ways …
• A class for parents
46%
• Web site with information about
care plans
70%
• Samples of written care plans
78%
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.“
“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
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
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
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
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
Contact information


Washington State Department of Health
Linda.Barnhart@doh.wa.gov
Children’s Hospital & Regional Medical
Center
Jean.Popalisky@seattlechildrens.org