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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 (38 total).

Sherman B. n.d.. Home-Based Support Services for Chronically Ill Children and Their Families [Final report]. Albany, NY: New York State Department of Health, 35 pp.

Annotation: This project sought to demonstrate that a system of reimbursable, cost-effective, home-based support services can be implemented for families with chronically ill children. The project objectives were to facilitate the provision of home-based care for chronically ill children through the following activities: (1) Developing a regional network of medically skilled respite providers; (2) establishing self-help mutual support groups for chronically ill children and their parents and siblings; (3) training professionals, paraprofessionals, and volunteers; and (4) disseminating project findings and recommendations. [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 PB93-158699.

Keywords: Arthritis, Asthma, Bronchopulmonary Dysplasia, Chronic illnesses and disabilities, Congenital Heart Disease, Cystic Fibrosis, Families, Feeding Disorders, Hemophilia, Home-Based Health Care, Kidney Disease, Leukemia, Low income groups, Muscular Dystrophy, Nurses, Respiratory Technologies, Respite Care, Sick Kids (Need) Involved People (SKIP), Sickle Cell Disease, Support Groups, Tay-Sachs Disease, Ventilator Dependence

New Jersey Department of Health and Senior Services, Special Child, Adult, and Early Intervention Services. n.d.. Sickle cell disease: Information for school personnel (3rd ed.). Trenton, NJ: New Jersey Department of Health and Senior Services, Special Child Health and Early Intervention Services, 29 pp.

Annotation: This guide is meant to serve as a resource for school nurses and other school personnel to alert them to the signs and symptoms of complications of the sickle cell diseases and to educate them about what to do if they encounter a child with such signs and symptoms. The guide is divided into the following sections: (1) introduction, (2) what is sickle cell disease?, (3) warning signs, (4) what is sickle cell trait? (5) complications related to sickle cell disease, (6) medical management, (7) psychosocial issues, (8) the teacher, and (9) the social workers. The guide also includes the following appendices: (1) glossary, (2) bibliography, (3) New Jersey sickle cell/hemoglobinopathies treatment centers, and (4) New Jersey genetic centers for testing and family counseling.

Keywords: Child health, Genetic counseling, Genetic disorders, Genetic services, New Jersey, Patient care management, Psychosocial factors, School health services, Sickle cell disease, Sickle cell trait, Social workers, Teachers

New Jersey Department of Health and Senior Services, Special Child Health and Early Intervention Services. n.d.. Sickle cell disease: A family guide (3rd ed.). Trenton, NJ: New Jersey Department of Health and Senior Services, Special Child Health and Early Intervention Services, 28 pp.

Annotation: This guide, intended primarily for parents of children with sickle cell disease, includes information on how to manage this disease. The guide is divided into the following sections: (1) acknowledgements, (2) dedication, (3) how to use this guide, (4) introduction, (5) emergency telephone numbers, (6) warning signs, (7) common questions, (8) medical care, (9) new approaches to treatment, (10) daily living, (11) medical words, (12) sickle cell disease on the Internet, (13) sickle cell treatment centers, (14) directory of sickle cell treatment centers in New Jersey, and (15) directory of genetic counseling centers in New Jersey.

Keywords: Child health, Genetic counseling, Internet, Medical terminology, New Jersey, Patient care management, Patient education materials, Sickle cell disease, Therapeutics

Children's Mercy Hospitals and Clinics, Hematology/Oncology Department. n.d.. Educator’s guide to sickle cell and school. Kansas City, MO: Children's Mercy Hospitals and Clinics, Hematology/Oncology Department, 24 pp.

Annotation: This brochure provides facts about sickle cell, including types of sickle cell disease and trait, common characteristics, less common complications, tips for the educator regarding meeting the needs of students with sickle cell and managing painful episodes. Tips are given for teachers, principals, guidance counselors, school nurses, physical education instructors and coaches,

Contact: Children's Mercy Hospitals and Clinics, 2401 Gillham Road, Kansas City, MO 64108, Telephone: (816) 234-3000 Secondary Telephone: (816) 234-3816 Web Site: http://www.childrensmercy.org Available from the website.

Keywords: Adolescents, Children, Resources for professionals, School health, Sickle cell disease

National Heart, Lung, and Blood Institute Health Information Center. 2012. Sickle cell disease research and care. Bethesda, MD: National Heart, Lung, and Blood Institute Health Information Center,

Annotation: This website provides an overview of sickle cell disease and describes the research conducted by the Heart, Lung, and Blood Institute (NHLBI) to improvement treatment and reduce the risks of serious complications. The site describes how ongoing research has led to better health outcome but emphasizes that patients and health care providers still need to be educated about current advances in diagnosis and treatment. Clinical trials, breakthrough therapies, and areas for future research are also discussed. Links to NHLBI research findings and sickle cell annual meetings are included.

Contact: National Heart, Lung, and Blood Institute Health Information Center, P.O. Box 30105, Bethesda, MD 20824-0105, Telephone: (301) 592-8573 Secondary Telephone: (240) 629-3255 Fax: (301) 592-8563 E-mail: NHLBIinfo@nhlbi.nih.gov Web Site: http://www.nhlbi.nih.gov/health/infoctr/index.htm Available from the website.

Keywords: Blood and lymphatic diseases, Federal agencies, Federal programs, Research, Sickle cell disease

National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders. [2011]. What you should know about sickle cell disease. Atlanta, GA: National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders, 2 pp.

Annotation: This fact sheet provides answers to frequently asked questions about sickle cell disease. It explains what this blood disorder is and what causes it; describes who is affected by it; and explains the types of health problems that it causes. It also explains how the disease is treated and discusses whether or not there is a cure.

Contact: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329-4027, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: cdcinfo@cdc.gov Web Site: http://www.cdc.gov/ncbddd Available from the website.

Keywords: Blood and lymphatic diseases, Consumer education materials, Sickle cell disease

National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders. [2011]. What you should know about sickle cell disease and pregnancy. Atlanta, GA: National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders, 2 pp.

Annotation: This fact sheet provides answers to questions about sickle cell disease (SCD) and pregnancy. It explains what causes sickle cell disease and sickle cell trait (SCT) and discusses whether individuals with either of these should see a genetic counselor and what they should do if they plan on having a baby. It describes genetic tests that can be conducted during pregnancy to determine whether or not the baby will have SCD or SCT and describes how pregnant women with SCD or SCT should be monitored to help ensure a healthy pregnancy.

Contact: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329-4027, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: cdcinfo@cdc.gov Web Site: http://www.cdc.gov/ncbddd Available from the website.

Keywords: Blood and lymphatic diseases, Pregnancy, Pregnancy outcome, Sickle cell disease

National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders. [2011]. What you should know about sickle cell trait. Atlanta, GA: National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders, 2 pp.

Annotation: This fact sheet provides answers to frequently asked questions about sickle cell trait. It explains the differences between sickle cell trait and sickle cell disease; explains how someone acquires the trait and who is affected by it; explains the health complications that may result from having the trait; and describes the blood test that can determine whether or not someone has the trait. The fact sheet also provides statistics on the chances that a baby will acquire sickle cell trait, based on whether or not one or both parents have either the trait or the disease.

Contact: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329-4027, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: cdcinfo@cdc.gov Web Site: http://www.cdc.gov/ncbddd Available from the website.

Keywords: Blood and lymphatic diseases, Consumer education materials, Screening tests, Sickle cell disease, Sickle cell trait

National Heart, Lung, and Blood Institute Health Information Center. 2010. Sickle cell disease awareness and education strategy development workshop report. Bethesda, MD: National Heart, Lung, and Blood Institute Health Information Center, 45 pp.

Annotation: This report provides an overview of the workshop hosted by the National Heart, Lung, and Blood Institute in September 2009 to develop a strategy for launching a public awareness and education campaign to raise awareness and bring nationwide attention to sickle cell disease. The report includes background information on sickle cell disease, a brief history of sickle cell disease research, a description of workshop goals and objectives, an overview of workshop proceedings (including summaries of presentations), and a summary of recommendations for the campaign. The appendices consist of the workshop agenda and a list of participants.

Contact: National Heart, Lung, and Blood Institute Health Information Center, P.O. Box 30105, Bethesda, MD 20824-0105, Telephone: (301) 592-8573 Secondary Telephone: (240) 629-3255 Fax: (301) 592-8563 E-mail: NHLBIinfo@nhlbi.nih.gov Web Site: http://www.nhlbi.nih.gov/health/infoctr/index.htm Available from the website. Document Number: NIH Pub. No. 56-205N.

Keywords: Federal initiatives, Public awareness campaigns, Sickle cell disease

National Heart, Lung, and Blood Institute Health Information Center. 2010. A century of progress: Milestones in sickle cell disease research and care. Bethesda, MD: National Heart, Lung, and Blood Institute Health Information Center, 2 pp.

Annotation: This brochure provides an overview of sickle cell disease, explaining what it is and how research has led to advances in its treatment during the past century. The brochure also describes how the National Heart, Lung, and Blood Institute -- part of the National Institutes of Health -- has not only funded sickle cell research but has conducted large clinical trials and sponsored workshops and meetings to guide the research agenda. The back of the brochure is a time line displaying events related to sickle cell disease beginning in 1910 when it was first described by Chicago Physician James B. Herrick.

Contact: National Heart, Lung, and Blood Institute Health Information Center, P.O. Box 30105, Bethesda, MD 20824-0105, Telephone: (301) 592-8573 Secondary Telephone: (240) 629-3255 Fax: (301) 592-8563 E-mail: NHLBIinfo@nhlbi.nih.gov Web Site: http://www.nhlbi.nih.gov/health/infoctr/index.htm Available from the website.

Keywords: Blood and lymphatic disease, Genetics, History, Medical research, Sickle cell disease

Braithwaite RL, Taylor SE, eds. 2009. Health issues in the black community [3rd ed]. San Francisco, CA: Jossey-Bass Publishers, 620 pp.

Annotation: This books discusses factors affecting the health status of African Americans. Current health problems as well as relevant strategies and policy implications are examined. The book is presented in five sections. Part One provides an overview of the general health issues affecting African Americans. Part Two focuses on several diseases or health conditions that contribute to a high number of deaths in the black community. Part Three addresses health issues specific to the infant, youth, and late adult populations. Part Four presents several strategies in the area of general health promotion. Part Five provides suggestions for implementing planned changes.

Contact: Jossey-Bass Publishers, John Wiley & Sons, Inc. Corporate Headquarters, 111 River Street, Hoboken, NJ 07030, Telephone: (201) 748-6000 Fax: (201) 748-6088 E-mail: info@wiley.com Web Site: http://www.JosseyBass.com Available in libraries. Document Number: ISBN 1-55542-477-6.

Keywords: AIDS, Blacks, HIV, Health education, Minority health, Sickle cell disease, Statistics, Substance abuse, Violence, Women's health

Carey Consulting with Connecticut Comprehensive Sickle Cell Disease Consortium. 2007. Designing a comprehensive system across the life span: Connecticut's state plan to address sickle cell disease and trait. Hartford, CT: Connecticut Department of Public Health, 49 pp.

Annotation: This report discusses background information on sickle cell disease/trait along with sickle cell statistics from Connecticut. It reviews best practices for treatment and details a plan for Connecticut to address sickle cell disease/trait. [Funded by the Maternal and Child Health Bureau]

Contact: Connecticut Department of Public Health, 410 Capitol Avenue, Hartford, CT 06134-0308, Telephone: (860) 509-8000 E-mail: webmaster.dph@po.state.ct.us Web Site: http://www.ct.gov/dph Available from the website.

Keywords: Connecticut, Health care systems, Planning, Sickle cell disease, Sickle cell trait, State programs, Systems development

Sadanandan S. [2006]. [Brooklyn Hospital Comprehensive Sickle Cell Disease and Newborn Screening Program: Final report]. Brooklyn, NY: Brooklyn Hospital Center, 48 pp.

Annotation: This report describes a project in Brooklyn, NY from 2002-2006 to broaden education, community-based screening and genetic counseling, and to increase the reach of at-risk community members who lack understanding of the impact of sickle cell disease upon their communities. Contents include an overview of the program needs and goals and objectives, progress to date, efforts in the communities, and the consortium and other collaborations. Appendices include questionnaires, sample forms and reports, processes, workshop questions and tests, and events held. [Funded by the Maternal and Child Health Bureau]

Contact: Brooklyn Hospital Center, Genetics Unit, 121 DeKalb Avenue, Brooklyn, NY 11201, Telephone: (718) 403-8032 Web Site: http://www.tbh.org/healthcare-services/reproductive-genetics

Keywords: Blacks, Community based services, Genetic screening, Hemoglobinopathies, Neonatal screening, New York, , Outreach, Sickle cell disease, Sickle cell trait

Owens W. 2006. Education is the key to successful newborn screening follow-up, adolescent transitioning to adult care and understanding health care literacy: [Final report]. [Montgomery, AL]: Sickle Cell Foundation of Greater Montgomery, 184 pp., plus appendices.

Annotation: This report describes a three-year project to reach parents of newborns identified at birth as being carriers of sickle cell trait or having sickle cell disease, to provide follow-up counseling and improved access to appropriate educational information and needed care, and to provide continuing education to healthcare providers. The Great Montgomery, Alabama, program also offered services to eliminate significant impediments to adolescents with sickle cell disease and their parents during transition to adult healthcare. Report contents include a description of the project's purpose; issues and background information; an overview of methodologies; goals and objectives; and provides a summary of findings, conclusions, and recommendations. The appendix contains a variety of charts, statistical data, sample letters, surveys and testing documents; and other publications produced during the project. [Funded by the Maternal and Child Health Bureau]

Contact: Sickle Cell Foundation of Greater Montgomery, 3180 U.S. Highway 80 West, P.O. Box 9278, Montgomery, AL 36108, Telephone: (334) 286-9122 Fax: (334) 286-4804

Keywords: Adolescents, Alabama, Children, Final reports, Health literacy, Hemoglobinopathies, Parents, Program descriptions, Sickle cell disease

Coursey YL. 2006. Sickle Cell Foundation of Palm Beach County: Final report. West Palm Beach, FL: Sickle Cell Foundation of Palm Beach County, 8 pp., plus appendices.

Annotation: This report describes a project to strengthen and improve the follow-up, education, counseling, and coordination of care for families of infants who test positive for sickle cell disease or sickle cell trait. Report contents include descriptions of the population serviced in the five county region of Southeast Florida and barriers to service delivery, goals and objectives of the project, an outline of process measures, and a list of highlights of the project years 2003-2005. Appendices include books, booklets, and other handout informational materials for parents of children who tested positive for sickle cell disease/trait. Also included are a DVD and a VHS tape with a new born screening documentary video in English and Creole.

Contact: Sickle Cell Foundation of Palm Beach County, 1600 North Australian Avenue, West Palm Beach, FL 33407-5621, Telephone: (561) 833-3113 Fax: (561) 659-4505 Web Site: http://www.sicklecellpalmbeach.org

Keywords: Genetics education, Final reports, Florida, Genetic counseling, Genetic screening, Hemoglobinopathies, Local programs, Non English language materials, Sickle cell disease

National Heart, Lung, and Blood Institute, Division of Blood Diseases and Resources. 2004r. The management of sickle cell disease. (4th ed.). Bethesda, MD: National Heart, Lung, and Blood Institute, ca. 200 pp.

Annotation: This updated and expanded fourth edition of a clinical guide for health professionals was developed by leading pediatricians, nurses, hematologists, and internists. The guide summarizes collective experiences with various therapeutic regimens. It includes a new section on diagnosis and counseling, with information on neonatal screening and genetic counseling, Web listings, and other useful resources. The guide reflects the most recent advances and modifications in the clinical management of sickle cell disease as well as findings from the Preoperative Transfusion Study, the Prophylactic Penicillin Trial II, and the Multicenter Hydroxyurea Study. Also included is epidemiological data from the Cooperative Study of Sickle Cell Disease.

Contact: National Heart, Lung, and Blood Institute Health Information Center, P.O. Box 30105, Bethesda, MD 20824-0105, Telephone: (301) 592-8573 Secondary Telephone: (240) 629-3255 Fax: (301) 592-8563 E-mail: NHLBIinfo@nhlbi.nih.gov Web Site: http://www.nhlbi.nih.gov/health/infoctr/index.htm Available from the website. Document Number: NIH Pub. No. 04-2117.

Keywords: Counseling, Diagnosis, Disease management, Genetic counseling, Guidelines, Neonatal screening, Sickle cell disease, Therapeutics

Georgia Division of Public Health, Georgia Newborn Screening Program. 2004. Georgia newborn screening manual for metabolic diseases and hemoglobinopathies. Atlanta, GA: Georgia Newborn Screening Program, Georgia Division of Public Health, 54 pp.

Annotation: This report describes the Georgia Newborn Screening Program, a program requiring that every live born infant have a blood test for nine metabolic disorders (phenylketonuria, congenital hypothyroidism, maple syrup urine disease, galactosemia, tyrosinemia, homocystinuria, congenital adrenal hyperplasia, biotinidase deficiency, medium-chain acyl-CoA dehydrogenase deficiency) and for sickle cell disorders. The report provides an overview of the program; discusses its screening, testing and reporting, and diagnostic activities; and describes its follow-up programs. Education resources are also included.

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: Biotinidase deficiency, Blood tests, Congenital adrenal hyperplasia, Congenital hypothyroidism, Diagnosis, Galactosemia, Georgia, Homocystinuria, Maple syrup urine disease, Metabolic diseases, Neonatal screening, Newborn infants, Phenylketonuria, Resource materials, Sickle cell disease, State programs, Tyrosinemia

Bottom K, McLean B. 2003. Pediatric/Adolescent Blood Disorders Program: Final report. Asheville, NC: Mission St. Joseph's Health System, 23 pp.

Annotation: This report describes a project conducted from 1999 to 2003 in Western North Carolina to address the unmet medical and psychological needs of the families living in rural areas of the state and to provide services within the families' communities. The program sought to improve the health of children with sickle cell disease and other inherited blood disorders, increase knowledge and understanding of sickle cell disease and other inherited blood disorders in Western North Carolina, and ensure continuity of care for all program participants. Report contents include a description of the purpose of the project, goals and objectives, methodology, evaluation, results and outcomes, publications and products, dissemination and utilization of results, future plans and follow-up, and type and amount of support and resources needed to replicate. An annotation and a keywords list are included. The report includes one appendix: grant objectives status as of April 2003. [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

Keywords: Blood and lymphatic diseases, Communities, Families, Final reports, Health care delivery, Health services, Mental health, North Carolina, Rural populations, Sickle cell disease

Lane PA, Buchanan GR, Hutter JJ, Austin RF, Britton HA, Rogers ZR, Eckman JR, DeBaun MR, Wang WC, Mathew P, Iden S, Recht M, Cohen JD, Fruge E, Embry L, Hsu L, Mueller BU, Goldsby R, Quinn CT, Mann M, Lloyd-Puryear MA. 2002. Sickle cell disease in children and adolescents: Diagnosis, guidelines for comprehensive care, and care paths and protocols for management of acute and chronic complications. [Rev. ed.]. [no place]: Sickle Cell Disease Care Consortium, 37 pp.

Annotation: This manual provides information about the diagnosis of sickle cell disease, an overview of comprehensive care, and clinical paths and protocols for the management of some of the more common acute and chronic complications. The manual includes the following main sections: (1) principles of care for children and adolescents with sickle cell disease, (2) diagnostic testing for the common sickle cell syndromes, (3) newborn screening follow-up guidelines, (4) sickle cell disease -- comprehensive care, (5) acute illness in sickle cell disease: illness requiring urgent medical care, (6) transfusion therapy for acute complications, (7) clinical care paths, (8) general anesthesia and surgery, (9) chronic transfusion protocol, (10) hydroxyurea protocol, (11) hematopoietic stem cell transplantation, (12) transcranial doppler ultrasonography, and (13) references. Two appendices include a list of sickle cell disease care consortium members and a list of other contributors. [Funded in part by the Maternal and Child Health Bureau]

Contact: Sickle Cell Information Center, Grady Memorial Hospital, P. O. Box 109, 80 Jessie Hill Jr. Drive, S. E., Atlanta, GA 30303, Telephone: (404) 616-3572 Fax: (404) 616-5998 E-mail: aplatt@emory.edu Web Site: http://www.scinfo.org/ Available from the website.

Keywords: Acute diseases, Adolescents, Children, Chronic illnesses and disabilities, Comprehensive health care, Diagnosis, Disease management, Guidelines, Management, Neonatal screening, Protocols, Sickle cell disease, Sickle cell screening

Ireys HT, DeVet KA, Walsh BB, Chernoff R. 1999. Manual for the implementation of the Family-to-Family Network. Baltimore, MD: Johns Hopkins University, Department of Maternal and Child Health, 96 pp., 1 questionnaire (25 pp.), 1 questionnaire (51 pp.), 1 questionnaire (44 pp.), 2 brochures.

Annotation: This manual describes procedures for implementing a 15-month program, the Family-to-Family Network (FTFN), designed to enhance the quality of life for families with school-aged children with selected chronic physical health conditions. The program, a research project, was operational from March 1997 to June 1999. This manual provides the parent component of the program. The manual is divided into seven sections that cover the following: (1) an overview of the program and its purpose; (2) underlying conceptual rationale and core principles; (3) selection and training of FTFN staff; (4) operational procedures; (5) providing support for and monitoring field work; (6) evaluation of the implementation of the program; and (7) administrative issues. References are provided. Appendices include evaluation materials and project questionnaires. The child portion of the program is addressed in the Kids Program Manual. [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: Asthma, Children with special health care needs, Cystic fibrosis, Diabetes mellitus, Families, Family support services, Intervention, MCH research, Mental health, Sickle cell disease

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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.