Minnesota Title V MCH Needs Assessment Fact Sheets

Children with Special Health Needs

Condition Specific Health Information

Summer 2004

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Size of the Problem

Families are the most central and enduring influence in children's lives. Parents are also central in pediatric care.[1]

To effectively manage their child's 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 child's special health need or disability[3].


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 child's 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 child's 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 child's health professional may affect parents receptivity to receiving advice, how they oversee their child's 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 child's 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]


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]


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

Parent advocacy groups in Minnesota such as PACER and ARC MINNESOTA have 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.

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