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Strengthening the evidence for maternal and child health programs

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Items in this list may be obtained from the sources cited. Contact information reflects the most current data about the source that has been provided to the MCH Digital Library.


Displaying records 1 through 20 (25 total).

University Centers for Excellence in Developmental Disabilities in California, Massachusetts, Iowa, and Kentucky. n.d.. Your baby and Down Syndrome: Answers to questions you might have. Los Angeles, CA: University of Southern California University Center for Excellence in Developmental Disabilities at Children's Hospital, 2 pp.

Annotation: This brochure is intended to serve as a starting point for new parents looking for information about Down syndrome and related resources and support groups. It includes talking points to use during a diagnostic consultation with a physician and answers to frequently asked questions such as (1) What is Down syndrome? (2) Where do I begin to help my baby? (3) How might Down syndrome affect my baby's health? (4) Where can I find more information about Down syndrome? and (4) How can I find other parents of children with Down syndrome? The brochure is available in both English and Spanish.

Contact: University of Southern California University Center for Excellence in Developmental Disabilities at Children's Hospital Los Angeles, 46550 Sunset Boulevard, Mailstop #53, Los Angeles, CA 90027-0980, Telephone: (323) 361-2300 Secondary Telephone: (323) 480-4192 Fax: (323) 361-8305 E-mail: uscucedd@chla.usc.edu Web Site: http://www.uscucedd.org/ Available from the website.

Keywords: Consumer education materials, Down syndrome, Infants with special health care needs, Spanish language materials

Rady's Children's Hospital—San Diego, Anderson Center for Dental Care. [2014]. Healthy smiles for children with Down syndrome [flyer]. San Diego, CA: Rady's Children's Hospital—San Diego, Anderson Center for Dental Care, 1 p.

Annotation: This flyer for parents and health professionals provides oral health information specific to children with Down syndrome. Topics include oral characteristics of children with Down syndrome, oral sensitivities, and challenges and recommendations. The flyer provides tips on preventing dental caries in early childhood, including tips on toothbrushing, eating healthy snacks, and visiting the dentist. Information on finding a dentist and scheduling an in-home dental visit is included, along with a list of resources. The content is available in English and in Spanish.

Contact: Children's Hospital and Health Center, Anderson Center for Dental Care, 3020 Children's Way, San Diego, CA 92123, Telephone: (858) 576-1700 Secondary Telephone: (800) 788-9029 E-mail: refsvc@chsd.org Web Site: http://www.chsd.org/body.cfm?id=255 Available from the website.

Keywords: Children with special health care needs, Dental care, Dental hygiene, Down syndrome, Oral health, Spanish language materials, children

Rady's Children's Hospital—San Diego, Anderson Center for Dental Care. [2014]. Healthy smiles for children with Down syndrome [brochure]. San Diego, CA: Rady's Children's Hospital—San Diego, Anderson Center for Dental Care, 2 pp.

Annotation: This brochure provides information for parents and caregivers on how to help ensure good oral health for children with Down syndrome. The brochure provides information about how Down syndrome may affect children's mouths and teeth, how to keep the teeth of children with Down syndrome healthy, tips for overcoming toothbrushing difficulties, and other ways to help prevent tooth decay. The content is available in both English and Spanish.

Contact: Children's Hospital and Health Center, Anderson Center for Dental Care, 3020 Children's Way, San Diego, CA 92123, Telephone: (858) 576-1700 Secondary Telephone: (800) 788-9029 E-mail: refsvc@chsd.org Web Site: http://www.chsd.org/body.cfm?id=255 Available from the website.

Keywords: Children with special health care needs, Consumer education materials, Dental care, Dental hygiene, Down syndrome, Oral health, Spanish language materials

Special Care Advocates in Dentistry. 2013. SAID professional modules. [no place]: Special Care Advocates in Dentistry, multiple items.

Annotation: This curriculum provides oral health professionals with information about children with special health care needs and oral health, oral health supervision, prevention of oral disease, and behavior guidance. The curriculum can help fulfill dental education and dental hygiene education program requirements on the management and treatment of patients with special health care needs. The curriculum can be taken for continuing education credit at no charge or for no credit (self-assessment). [Funded by the Maternal and Child Health Bureau]

Contact: Special Care Advocates in Dentistry, Southern Association of Institutional Dentists, Web Site: http://saiddent.org Available from the website.

Keywords: Advocacy, Cerebral palsy, Culturally competent services, Disabilities, Down syndrome, Health care delivery, Interdisciplinary approach, Mental disorders, Multidisciplinary teams, Oral health, Research, Resources for professionals, Special health care needs

National Coalition for Health Professional Education in Genetics. 2012. Non-invasive prenatal testing (NIPT) factsheet. [Lutherville, MD]: National Coalition for Health Professional Education in Genetics, 4 pp.

Annotation: This fact sheet describes a procedure to analyze cell-free fetal DNA circulating in maternal blood as a noninvasive prenatal screening and testing effort for trisomy 21 and other fetal chromosome abnormalities. It outlines test characteristics, detection rate and accuracy, reporting results and their implications for pregnant women, testing costs and insurance coverage, what to ask laboratories offering the test, performance comparison to other forms of prenatal testing or screening, counseling women about screening and testing options, and general background.

Contact: National Coalition for Health Professional Education in Genetics, 2360 West Joppa Road, Suite 320, Lutherville, MD 21093, Telephone: (410) 583-0600 Fax: (410) 583-0520 E-mail: info@nchpeg.org Web Site: http://www.nchpeg.org Available from the website.

Keywords: Congenital abnormalities, Down syndrome, Genetic screening, Prenatal care, Trisomy

U.S. Government Accountability Office. 2010. Children with Down Syndrome: Families are more likely to receive resources at time of diagnosis than in early childhood. Washington, DC: U.S. Government Accountability Office, 41 pp.

Annotation: This report provides information on the effectiveness of current health care and family support programs for families of children with Down syndrome. Using analyses of data from a large health insurance company, Medicaid, and the 2005-2006 National Survey of Children with Special Health Care Needs, as well as interviews with specialists and advocacy groups, the report examines (1) what is known about the the extent to which children with Down syndrome receive medical care during early childhood and (2) what resources families with Down syndrome receive through their health professionals and what barriers families face to using these resources.

Contact: U.S. Government Accountability Office, 441 G Street, N.W., Washington, DC 20548, Telephone: (202) 512-3000 Secondary Telephone: E-mail: contact@gao.gov Web Site: http://www.gao.gov Available from the website.

Keywords: Access to health care, Children with special health care needs, Chronic illnesses and disabilities, Costs, Down syndrome, Families, Family support programs, Infants with special health care needs, Medicaid, Research, Statistical data, Young children

Knight GJ. 2004. Improved prenatal Down Syndrome screening: Paired testing [Final report]. Scarborough, ME: Foundation for Blood Research, Prenatal Screening Laboratory, 41 pp.

Annotation: This report describes a project that sought to establish that the integrated serum test can be successfully implemented in a variety of primary care settings through a centrally administered program, with a resulting reduction in false positive results from diagnostic procedures undertaken to identify Down syndrome. The integrated serum test identifies women whose pregnancy is at sufficiently high risk for Down syndrome to justify a diagnostic procedure. The report, which includes an executive summary, also provides a review of the literature, a description of the study design and methods, a presentation of the findings, and a discussion. A list of products by the lead author is included, along with a list of works cited and a list of abbreviations and terms. Statistical information is presented in figures and tables throughout the paper. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org Available from the website.

Keywords: Costs, Diagnosis, Down syndrome, Final reports, Genetic screening, MCH research, Neonatal screening, Pregnancy, Primary care, Risk factors, Screening tests

Knight JR, Frazer C, Emans SJ, eds. 2001. Bright Futures case studies for primary care clinicians: Child development and behavior. Boston, MA: Bright Futures Center for Pediatric Education in Growth and Development, Behavior, and Adolescent Health, 269 pp. (xxx)

Annotation: This manual is part of a three volume set designed to provide information to teachers about the many facets of the Bright Futures Pediatric Education Project. The first section of this manual presents case studies in child development, specifically delays in development, Down syndrome, and an atypical behavior situation. Section two focuses on the school environment: school readiness, learning disorders, attention deficit/hyperactivity disorder, and recurrent abdominal pain. The third section addresses case studies in physical and sexual abuse, as well as child neglect. The resources section contains sample forms with evaluation questions. [Funded by the Maternal and Child Health Bureau and the Genentech Foundation for Growth and Development]

Contact: Maternal and Child Health Library at Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Contact Fax: xxx E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org Contact for cost information. Document Number: HRSA Info. Ctr. MCHN100 (3 vol set.).

Keywords: Attention deficit disorder, Bright Futures, Case studies, Child behavior, Child development, Child health supervision, Child neglect, Delayed development, Diagnosis, Down syndrome, Educational materials, Hyperactivity, Learning disabilities, Physical abuse, Professional education, Program evaluation, School readiness, Sexual abuse

Shonkoff J. 2001. Early Intervention Collaborative Study: Age 10 Followup: [Final report]. Waltham, MA: Brandeis University, 24 pp.

Annotation: The broad goals of this study were to: 1) identify predictors and mediators of child development and family adaptation over time, and 2) construct an integrated, empirically validated conceptual framework to inform public policy, aid the design of service programs, and guide further research for children with special health needs and their families. The study also aimed to elucidate predictors of long-term vulnerability and resilience among recipients of early intervention services in order to inform policy decisions regarding short-term resource allocation and long-term service planning for children with special health needs and their families. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, U.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: customerservice@ntis.gov Web Site: http://www.ntis.gov Document Number: NTIS PB2002-101956.

Keywords: Data Analysis, Data Collection, Delayed Development, Down Syndrome, Early Intervention, MCH Research, Parents, Research, School Age Children, School–age children

Southern Association of Institutional Dentists. 2001. Modules [self study course]. [no place]: Southern Association of Institutional Dentists,

Annotation: This set of 15 modules provides information to help oral health professionals care for individuals with developmental disabilities, mental retardation (MR), and mental illness. Each module contains a brief review of the purpose and learning objectives, an introduction, and references. Topics include reviews of MR and other conditions such as Down syndrome, cerebral palsy, maladaptive behaviors, genetic syndromes, and mental illness; the use of dental sedation, immobilization and positioning devices, and general anesthesia; clinical concerns in dental care; treatment planning for the severely disabled and the impact on prosthetic, restorative, and surgical services; the provision of services to disabled individuals residing in the community; administrative issues in the practice of dentistry in the MR or mental health (MH) institutional setting; and a review of research needs and opportunities in MH/MR facilities.

Contact: Special Care Advocates in Dentistry, 400 Olde Smithfield Road, Goldsboro, NC 27530, Web Site: http://saiddent.org Available from the website.

Keywords: Cerebral palsy, Dental care, Dentistry, Developmental disabilities, Distance education, Down syndrome, Mental retardation, Oral health, Patient care management, Resources for professionals, Special health care needs, Training materials

Knight G. 1998. Free-B and hCG in screening for Down syndrome. Arlington, VA: National Center for Education in Maternal and Child Health, 3 pp. (Research roundtable summary; no. 19)

Annotation: This abstract summarizes a project to compare the relative performance of free-B subunit and hCG measurements in prenatal screening for Down syndrome.

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.ncemch.org Photocopy available at no charge; also available from the website.

Keywords: Down syndrome, Genetic screening, MCH research, Prenatal screening

Knight G. 1997. Free Beta and hCG in Screening for Down Syndrome: [Final report]. Scarborough, ME: Foundation for Blood Research, 26 pp.

Annotation: In the U.S., some 2 million pregnancies are screened for fetal Down syndrome each year. These measurements include alpha-fetoprotein (AFP), alone or in combination with human chorionic gonadotropin (hCG) and unconjugated estriol (uE3). In 1990, the free beta-subunit of hCG was reported to be superior to the intact hCG molecule as a marker for Down syndrome. This study aimed to develop accurate estimates of performance for free beta-subunit measurements in detecting Down syndrome and to compare these with estimates derived from intact hCG measurements, as a step toward providing a basis for rational decision-making by State health departments, laboratories, physicians, and pregnant women. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, U.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: customerservice@ntis.gov Web Site: http://www.ntis.gov Document Number: NTIS PB98-126642.

Keywords: Asians-All Others, Asians–Chinese, Asians–Filipinos, Blacks, Down Syndrome, Hispanics-All others, Pregnant women (not otherwise defined as adolescents), Prenatal screening

Horsley JW, Allen ER, Daniel PW. 1996. Nutrition management of school age children with special needs: A resource manual for school personnel, families, and health professionals = Nutrition management of handicapped and chronically ill school children: A resource manual for school personnel, families and health professionals. (2nd ed.). Richmond, VA: Virginia Department of Health and Virginia Department of Education, 93 pp.

Annotation: This manual, a product of an interagency project between the Virginia Departments of Health and Education, is a guide for parents and professionals on the management of nutrition problems of school children with special needs. It helps school personnel plan nutrition services for students who have special health needs or are chronically ill. The information included facilitates the management of special diets and the expansion of nutrition education in the school curriculum. It includes information on these topics: common nutrition problems and interventions during the school day; dietary considerations of specific conditions and related factors; and nutrition goals and objectives for the individualized education program. Dietary considerations and sources of information and/or nutrition education materials for the following conditions are discussed: cerebral palsy, cystic fibrosis, diabetes mellitus, Down syndrome, juvenile rheumatoid arthritis, phenylketonuria, seizure disorders, spina bifida, constipation, feeding abnormalities, and tube feeding. Nine case studies are presented. The appendix includes information on lunch menu ideas for special diets, nutritious snacks, textural modifications, arthritis diet and drugs, complications of tube feeding, and PKU diet free foods. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org Available for loan. Document Number: HRSA Info. Ctr. MCHI113.

Keywords: Cerebral palsy, Children with special health care needs, Constipation, Cystic fibrosis, Diabetes mellitus, Down syndrome, Enteral nutrition, Epilepsy, Feeding disorders, Individualized education programs, Juvenile rheumatoid arthritis, Nutrition, Phenylketonuria, School food services, Spina bifida

Shonkoff JP, Hauser-Cram P. 1993. Early intervention: Child development and family adaptation. Arlington, VA: National Center for Education in Maternal and Child Health, 10 pp. (Research roundtable summary; no. 5)

Annotation: This report summarizes a Maternal and Child Health Bureau project on the efficacy of early intervention services to families and family adaptations presented at a seminar December 2, 1993. The study focused on three target groups: children with Down syndrome, children with motor impairments, and children with developmental delays. The report concludes with reaction to the project and a list of references. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.ncemch.org Photocopy available at no charge; also available from the website.

Keywords: Child development, Child development disorders, Children with special health care needs, Down syndrome, Early intervention, Family centered care, Family support services, MCH research, Motor development, Social services

Berkus CW, Dodd M. 1992. Charlsie's chuckle. Bethesda, MD: Woodbine House, 32 pp.

Annotation: This book for children relates the story of a child with Down syndrome and his interactions with his family and other members of the community. A brief essay at the end of the book by the President of the National Down Syndrome Congress provides facts about the syndrome and indicates that children with the syndrome deserve to be treated with dignity and should be afforded the same rights as other children.

Contact: Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817, Telephone: (800) 843-7323 E-mail: info@woodbinehouse.com Web Site: http://www.woodbinehouse.com Available in libraries. Document Number: ISBN 0-933149-50-6.

Keywords: Children with special health care needs, Down syndrome, Family relations, Materials for children, Mental retardation

Lauwers J, Woessner C. 1989. Counseling the nursing mother: A reference handbook for health care providers and lay counselors. (2nd ed.). Garden City Park, NY: Avery Publishing Group, 528 pp.

Annotation: This updated guide, originally published in 1983, is designed to assist health care providers, particularly lactation consultants, and lay counselors, with the management and content of breastfeeding education and promotion programs. Included are chapters on learning to help mothers; understanding breast structure and function relating nutrition to health; human breast milk properties; guiding the couple through pregnancy; counseling the mother through the learning period; assisting with family adjustments; encouraging breastfeeding as the baby grows; counseling the mother through special situations; breastfeeding problems; and guiding the mother in the use of special aids and techniques.

Keywords: AIDS, Breastfeeding, Breastfeeding promotion, Diabetes mellitus, Down Syndrome, Failure to thrive, Nutrition, Pregnancy, Relactation

Ekvall SM, Stevens FS, eds. 1989. Nutritional needs of the handicapped/chronically ill child: Nutrition assessment Manual III. Cincinnati, OH: University Affiliated Cincinnati Center for Developmental Disorders, 169 pp.

Annotation: This manual contains papers presented at the interdisciplinary symposiums entitled "Nutritional Needs of the Child with a Handicap or Chronic Illness." Several symposiums were held between 1984 and 1988. Materials are organized by topics and presented in three manuals focusing on nutrition program planning, clinical nutrition, and nutrition assessment. The goal of the symposiums was to provide an opportunity for participants to become aware of techniques and resources that will enable them to improve the nutritional status of the child who is chronically ill or handicapped. Manual III addresses assessment of growth and development, guidelines for the use of nutrient supplements, nutrient and drug interactions, and feeding assessment of children who have renal failure and muscular dystrophy. The appendix includes study questions for use in group or self study, Title V agencies, or academic programs. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org Available for loan. Document Number: HRSA Info. Ctr. MCHC098.

Keywords: Assessment, Child development, Child health, Children with special health care needs, Chronic illnesses and disabilities, Down syndrome, Kidney diseases, Nutrition, Prader Willi syndrome

Shonkoff J. 1989. The Early Intervention Collaborative Study: Phase One [Final report]. Waltham, MA: University of Massachusetts Medical School, 278 pp.

Annotation: This 3-year study was designed to analyze how child, family, and program characteristics relate to child and family outcomes for three target groups served by publicly supported early intervention programs in Massachusetts and New Hampshire. The study sample included 180 children under 24 months of age with either Down syndrome, motor impairment/cerebral palsy, or developmental delay of an unknown etiology. Participants were recruited from 15 early intervention programs in Massachusetts and 3 programs in New Hampshire. Each child and his/her family were evaluated within 1 month of their entry into an early intervention program, and again after 12 months of service delivery. A series of child, family, and program variables were assessed and their relationships examined using both statistical and descriptive analyses. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, U.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: customerservice@ntis.gov Web Site: http://www.ntis.gov Document Number: NTIS PB92-136217.

Keywords: Cerebral Palsy, Developmentally Delayed/Disabled, Down Syndrome, Early Intervention, Families

Bellisario R. 1988. Detection of Hypothyroidism in Infants with Down Syndrome [Final report]. Albany, NY: Wadsworth Center for Laboratories and Research, 19 pp.

Annotation: This study aimed to: (1) Compare the thyroid function of Down syndrome newborns with matched controls; (2) confirm the incidence of hypothyroidism in Down syndrome infants in the first year of life when treatment is most beneficial; and (3) determine whether the onset of hypothyroidism coincided with elevation of thyroid antibodies in Down syndrome children. The study had a two-part design. The first was a matched control design and the second was longitudinal. 46 Down syndrome newborns diagnosed with hypothyroidism were followed. The study's findings indicate that Down syndrome newborns have an increased incidence of thyroid function compared with the newborn population, and that in the first three years of life, the onset of hypothyroidism in Down syndrome children precedes the detection of elevated antithyroid antibody titers. Future studies should compare the incidence and onset of hypothyroidism and elevation of thyroid antibodies in the same children from birth through adolescence. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, U.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: customerservice@ntis.gov Web Site: http://www.ntis.gov Document Number: NTIS PB89-221824.

Keywords: Chronically ill, Down Syndrome, High risk infants, Hypothyroidism, Longitudinal studies, Neonatal screening

American Occupational Therapy Association, Developmental Disabilities Special Interest Section. 1987. Problems with eating: Interventions for children and adults with developmental disabilities. Rockville, MD: American Occupational Therapy Association, 128 pp.

Annotation: This monograph is composed of 10 papers covering a wide variety of issues related to the eating behavior of children, adolescents, and adults with developmental disabilities. Topics addressed include: use of videofluoroscopy in evaluation and treatment of swallowing disorders; interventions for nonoral feeders; various aspects of programs for and the feeding of individuals with compromised oral-motor function; and occupational therapy and feeding in institutions for mentally retarded persons.

Contact: American Occupational Therapy Association, 4720 Montgomery Lane, P.O. Box 31220, Bethesda, MD 20824-1220, Telephone: (301) 652-2682 Secondary Telephone: (800) 377-8555 Contact Phone: (301) 948-9626 ext. 258 Fax: (301) 652-7711 Web Site: http://www.aota.org $18.00 plus $2.00 shipping and handling (members), $23.50 plus $3.00 shipping and handling (nonmembers); phone orders accepted if using Visa or Mastercard for payment.

Keywords: Developmental disabilities, Down syndrome, Eating disorders, Mental retardation, Nutrition services, Occupational therapists

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This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.