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2005 Title V Needs Assessment Fact Sheets
Maternal and Child Health (MCH) Section

Minnesota Children with Special Health Needs (MCSHN) Section
 

Minnesota Title V MCH Needs Assessment Fact Sheets
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Children with Special Health Needs
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Condition Specific Health Information
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Summer 2004

Printer-Friendly Version (PDF: 29KB/3 pages)
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Size of the Problem
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Families are the most central and enduring influence in childrens
lives. Parents are also central in pediatric care.1

To effectively manage their childs condition, families of children and
youth with special health needs must have specific information about
the chronic health conditions and disabilities affecting their
children.
Information about a child s health or health care can include things
such as the causes of any health problems, how to care for the child
now, and what changes to expect in the future.

Of those children with special health care needs in Minnesota who had
seen a doctor in the 12 months preceding the survey, 49% didn't always
get the information they need.2
In a survey of children enrolled in the MCSHN Treatment Program, 63%
indicated a need for information about their childs special health
need or disability3.

Seriousness
-----------
To work with professionals in making informed treatment choices,
parents must have the same facts and interpretation of those facts as
the professionals. This would include medical information presented in
meaningful formats, information about uncertainties surrounding
treatments, information from parents whose children have been in
similar medical situations, and access to the chart and rounds
discussions.4 Research has shown that parents, regardless of
literacy level, are capable of understanding their childs diagnosis,
medication name and purpose and are able to follow instructions for
medication administration. Literacy level, does however impact
parental perceptions of the severity of the childs illness with
low-literate parents considering their children more sick than those
who are literate.5

Physicians regularly underestimated parents' apparently insatiable
desire for information about the child's chronic condition(s) and its
implications. While parents state their desire for more information
consistently and independent of severity and diagnostic categories,
pediatricians seem to be more aware of this need for information among
children with neurologic conditions, and those whose conditions have
resulted in greater impact on the family ("intensity"), than among
other children.6
The quality of parents communication with their childs health
professional may affect parents receptivity to receiving advice, how
they oversee their childs compliance with treatment regimens, and
satisfaction with and outcomes of care.7

The single most important way parents can help prevent medical errors
is to be an active member of the child's health care team. In
addition, parents must make sure that all health care professionals
involved in the child's care have important health information about
him or her.8 To accomplish this, parents must have information about
their childs condition and treatment. Children and adolescents who
experience potential medical mistakes detected by Patient Safety
Indicators have 2 to 18 times higher hospital death rates and hospital
stays that are 2 to 6 times longer and 2 to 12 times more costly. The
rate of potential adverse drug events was three times higher for
children than for adults in a similar study. This suggests that
children are at greater risk than adults from potentially harmful
medication mistakes.9
Interventions
-------------

A review of 114 articles on issues related to patient education
concluded that parents appear to respond best to information that
focuses on their specific areas of concern. Media such as advertising
campaigns or office posters can be helpful for broadening parents'
range of interests. Verbal suggestions can be used alone for conveying
brief, concrete information, particularly when parents are not
stressed - a condition that deters recall. Written information should
be added when addressing more complex issues. Modeling and
role-playing appear especially useful when confronted with problematic
parenting or child behavior.10 To address anxiety-induced barriers
to learning, researchers recommended that pediatricians explore
parents' understanding of their child's condition, their worries about
the visit, any behavioral and developmental concerns, and refer
families as needed for supportive services (eg, advocacy, social work,
psychological counseling, etc). One simple and effective technique for
enhancing parental recall is a telephone call after the initial
consultation. This facilitated compliance in 90% of the experimental
group in contrast to 55% compliance in the control group.11
The process of patient education should be viewed as a joint venture.
The patient helps to determine what information should be provided.
The physician must consider not only what the patient needs to know,
but also what he or she wants to know. A helpful tactic is to speak in
language the patient can understand, keeping the message simple and
specific. Timing is also crucial; the physician must be able to judge
when a patient is ready to receive certain information. The degree of
detail offered will depend on the patient's needs and preferences.12

One approach to educating parents about complicated topics is to use
videotapes. Mothers who watched a short culturally sensitive videotape
(meaning that the speakers were other African-American, low-income,
adolescent mothers) of best practices in infant developmental
stimulation and feeding were far more likely than were control group
mothers (those instructed verbally by white professionals) to
communicate with their infant during feeding. Other studies also
support the effectiveness of videotapes when they are culturally
sensitive.13
Information handouts are less expensive and generally more available
than videotapes. One study compared videotaped counseling to
information handouts. Both were found to be equally effective in
improving parents' disease-specific knowledge. Information handouts
have been demonstrated to be effective in improving outcomes such as
compliance, satisfaction with care, and parent knowledge. For example,
in a study of 11,000 patients were given information handouts on
tetanus vaccines and then followed for 7 months. Vaccination rates
increased threefold. Handouts also increased compliance with treatment
recommendations. Providing parents with written information on fevers
and urinary tract infections decreased by half the number of
inappropriate telephone calls and reduced by one half to three fourths
unnecessary office visits. In a comparison of oral versus written
information, parents receiving written information were better able to
follow through with medical instructions.14

Status
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Although service providers may be aware of the need for accurate and
appropriate information for families of children with special health
needs regarding their childs care and programming data suggests
families are not getting needed information.

Parent advocacy groups in Minnesota such as PACER and ARC
MINNESOTAhave developed vast quantities of information for families.
The Maternal and Child Health Bureau and other federal agencies (such
as www.healthfinder.gov Attn: Non-MDH Link) have developed information
about specific chronic illnesses and disabilities as well as best
practice in sharing information with families.

The Information and Assistance Line is a toll-free line located within
Minnesota Children With Special Health Needs at the Minnesota
Department of Health is a resource for families as well as providers.
The Information and Assistance staff links families and professionals
to needed services and sources of information.
The Minnesota Department of Health has developed public health
strategies that discuss family centered care as well as cultural
sensitivity and competency, which can serve as guides for
information-deliverers.

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1. Report of the Task Force on the Family. Family Pediatrics.
Pediatrics 2003; 111 (6); 1541-1571.
2. Centers for Disease Control and Prevention, National Center for
Health Statistics, State and Local Area Integrated Telephone Survey,
National Survey of Children with Special Health Care Needs, 2001
3. Minnesota Children with Special Health Needs Survey of Treatment
Program Participants
4. Harrison, H. The Principles for Family-Centered Neonatal Care
(1993). Pediatrics. 92 (5) 643-50.
5. Moon RY, Cheng TL, Patel KM, Baumhaft K, Scheidt PC. Parental
Literacy Level and Understanding of Medical Information . Pediatrics.
1998 Aug;102(2):e25. http://pediatrics.aappublications.org. Accessed
7/24/04.
6. Perrin, E., Lewkowitz, C., Young, M., Shared Vision: Concordance
Among Fathers, Mothers, and Pediatricians About Unmet Needs of
Children With Chronic Health Conditions. Pediatrics (2000) 105(1)
277-285.
7. Leatherman, S., McCarthy, D., (2004) Quality of Health Care for
Children and Adolescents. University of North Carolina. Commonwealth
Fund.
8. Agency for Healthcare Research and Quality. 20 Tips to Help Prevent
Medical Errors in Children. Patient Fact Sheet. AHRQ Publication No.
02-P034, September 2002. Agency for Healthcare Research and Quality,
Rockville, MD. http://www.ahrq.gov/consumer/20tipkid.htm Attn:
Non-MDH Link
9. ibid
10. Glascoe, F., Oberklaid, F., Dworkin, P., Trimm, F. Brief
Approaches to Education Patients in Primary Care. Pediatrics (1998).
101(6), e10. www.pediatrics.org. Attn: Non-MDH Link Accessed
7/24/2004.
11.Glascoe, F., Oberklaid, F., Dworkin, P., Trimm, F. Brief Approaches
to Education Patients in Primary Care. Pediatrics (1998). 101(6), e10.
www.pediatrics.org. Attn: Non-MDH Link Accessed 7/24/2004.
12. Korsch, BM. What do patients want to know? What do they need to
know? (1984) Pediatrics 74 (5 Pt 2):917-9.
13. ibid
14. ibid

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Updated: Wednesday, 27-Sep-2006 08:46:04 CDT
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