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Strengthen 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 19 (19 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

Keller A. n.d.. Services for Adults with Cystic Fibrosis [Final report]. Harrisburg, PA: Pennsylvania Department of Health, 37 pp.

Annotation: This project addressed the issue of transitioning of late adolescents and young adults with cystic fibrosis from pediatric care to the adult health care system. The project was developed in order to study the issue of transitioning in terms of the health care delivery system. The goal of the project was to develop an appropriate adult health care delivery model and to study this process and the process of transitioning patients from a pediatric hospital to an adult hospital in separate locations. The objectives of the project were to examine four issues: (1) The effect of the transition on patients and families; (2) determining what services are needed in the adult care setting to provide appropriate care; (3) determining whether interinstitutional issues can be overcome to successfully develop such a program; and (4) studying the financial impact on patients and institutions of this transition. [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 PB93-198372.

Keywords: Adolescents, Chronically Ill, Cystic Fibrosis, Data Collection, Stress, Youth in Transition

van Dyck P. n.d.. Methods of Funding Nutrition Services for Children with Developmental Disabilities [Final report]. Salt Lake City, UT: Utah Department of Health, 16 pp.

Annotation: The purpose of this project was to develop and apply a model for providing comprehensive nutrition services for children in Utah who have certain developmental disabilities or disease conditions. The objectives of the project were to (1) provide comprehensive nutrition care and expand resources; (2) demonstrate the costs and benefits of providing nutrition services to those children with selected developmental disabilities using an economic model; and (3) obtain third-party reimbursement for nutrition services provided to children with selected special health needs. [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 PB93-199172.

Keywords: Cystic Fibrosis, Developmentally Delayed/Disabled, Financing Health Care, Inborn Errors of Metabolism, Neonatal Intensive Care Unit(NICU), Nutrition, Reimbursement

American Academy of Pediatrics. 2002. A compendium of resources on newborn screening policy and systems development. Elk Grove Village, IL: American Academy of Pediatrics, 61 pp.

Annotation: This compendium includes selected resources and abstracts on the following topics: (1) general newborn screening; (2) biotinidase deficiency, (2) congenital adrenal hyperplasia, (3) congenital hypothyroidism, (4) cystic fibrosis, (5) drug exposure, (6) galactosemia, (7) hearing screening, (8) hemoglobinapathies, (9) HIV, (10) medium chain co-A dehydrogenase deficiency, (11) phenylketonuria. Additional resources are provided on newborn screening policy; ethical, legal, and social issues; costs and financing of screening newborns; laboratory analysis; research and new technologies; and treatment and management. [Funded in part by the Maternal and Child Health Bureau]

Contact: National Resource Center for Patient/Family-Centered Medical Home, American Academy of Pediatrics, 345 Park Boulevard, Itasca, IL 60143, Telephone: (847) 434-7605 Secondary Telephone: (800) 433-9016, ext. 7605 Web Site: https://medicalhomeinfo.aap.org/Pages/default.aspx

Keywords: Biotinidase deficiency, Congenital adrenal hyperplasia, Congenital hypothyroidism, Cystic fibrosis, Drug affected infants, EPSDT, Ethics, Financing, Galactosemia, HIV, Hearing screening, Hemoglobinopathies, Laboratories, Legal issues, Management, Neonatal screening, Phenylketonuria, Research, Technology

Herman DR, Baer MT. 1999. Demonstrating cost-effectiveness of nutrition services for children with special health care needs: A national network. Arlington, VA: National Center for Education in Maternal and Child Health; Los Angeles, CA: University of Southern California, Center for Child Development and Developmental Disabilities, 67 pp.

Annotation: This report summarizes a literature review and a field survey related to the cost-effectiveness of nutrition services for children with special health care needs (CSHCN). The literature review concentrates on cystic fibrosis, cerebral palsy, and failure to thrive. It includes an overview of each illness and the outcome indicators cited in the literature. The survey analysis results are presented by agency setting (i.e., clinical, public health, or university setting) and by federal region. A report on the expert panel convened to identify nutrition indicators for CSHCN, a description of workshop participant projects, and a list of workshop participants are included. The report was prepared for the Maternal and Child Health Interorganizational Nutrition Group (MCHING). [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org Available from the website. Document Number: HRSA Info. Ctr. MCHM020.

Keywords: Cerebral palsy, Children with special health care needs, Cost effectiveness, Cystic fibrosis, Failure to thrive, Federal regions, Literature reviews, Nutrition services, Nutrition surveys, Reports

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, 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

Munn EK, Widener MA, Fortunato GM, Chernoff R. 1999. Kids program manual for child life specialists. Baltimore, MD: Johns Hopkins University, Department of Maternal and Child Health, 55 pp., 1 brochure.

Annotation: This manual describes procedures for implementing the child component of a 15-month program 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. The child component is referred to as Kids Involved in Discovery and Sharing (KIDS). The child component was developed to enhance children's self-esteem, increase participating childrens' perception of social support, and to problem solve with the children for ways of managing family and social issues that they identified as challenging. The manual is divided into three sections that cover the following: (1) the programs goals and objectives; (2) general procedures for carrying out a visit and for maintaining contact with the children and their mothers between visits; and (3) descriptions of activities, procedures for their implementation, and examples of specific interactions. References are provided. Appendices include a Child Life Specialist (CLS) job description, copies of documentation forms, guidelines for interactions with children that enhance self-esteem, and guidelines for establishing the relationships between the CLS and the parents. A sample K.I.D.S. brochure is attached. [Funded by the Maternal and Child Health Bureau]

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

Keywords: Asthma, Child life workers, Children with special health care needs, Cystic fibrosis, Diabetes mellitus, Families, Family support services, Intervention, MCH research, Mental health, Sickle cell disease

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, 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

Gabor V, Jacquart K, Salit R, Hill I. 1996. Practice guidelines and standards of care for children with special health care needs: Report and compendium. Washington, DC: Health Systems Research, 17 pp.

Annotation: This report gives information on a technical assistance project for the North Carolina Department of Environment, Health, and Natural Resources Division of Maternal and Child Health. The project examined practice guidelines to promote health care quality for children with special health needs as their care was expected to migrate to a Medicaid managed care system. The report includes a summary of guidelines for children with the following conditions: asthma, attention deficit hyperactivity disorder, cerebral palsy, congenital deafness, cystic fibrosis, diabetes, sickle cell disease, and spina bifida. The report also identifies the sources of these guidelines. [Funded by the Maternal and Child Health Bureau]

Contact: Altarum Institute, 3520 Green Court, Suite 300, Ann Arbor, MI 48105, Telephone: (734) 302-4600 Secondary Telephone: (800) 879-6505 Fax: (734) 302-4991 Web Site: http://www.altarum.org/contact Available from the website.

Keywords: Asthma, Attention deficit disorder, Cerebral palsy, Children with special health care needs, Cystic fibrosis, Deafness, Diabetes mellitus, Guidelines, Hyperactivity, North Carolina, Quality assurance, Sickle cell disease, Spina bifida, Standards, State health care reform, Technical assistance

Brown RT, Coupey SM, eds. 1994. Chronic and disabling disorders. Philadelphia, PA: Hanley and Belfus, 169 pp. (Adolescent medicine: State of the art reviews; v. 5, no. 2)

Annotation: This edition addresses both general issues of importance in health care for adolescents with special health needs and specific chronic conditions. The first set of articles focuses on the epidemiology of chronic illness in adolescence and developmental, educational, and health care delivery issues. The second set discusses specific chronic conditions that are prevalent in the adolescent population (i.e., deafness, cancer, traumatic brain injury, and sickle cell disease) or that have had recent advances in management (i.e., cystic fibrosis, organ transplants, and spinal cord injuries).

Contact: Hanley and Belfus, 210 South 13th Street, Philadelphia, PA 19107, Telephone: (215) 546-4995 Contact Phone: (800) 962-1892 Available in libraries.

Keywords: Access to health care, Adolescent development, Adolescents with special health care needs, Cancer, Chronic illnesses and disabilities, Cystic fibrosis, Education, Epidemiology, Head injuries, Hearing disorders, Organ transplantation, Sickle cell disease, Spinal cord injuries, Transitions

U.S. Congress, Office of Technology Assessment. 1992. Cystic fibrosis and DNA tests: Implications of carrier screening. Washington, DC: U.S. Congress, Office of Technology Assessment, 301 pp.

Annotation: This report examines the scientific, clinical, legal, economic, and social considerations of widespread carrier screening for cystic fibrosis. Specific topics covered include medical aspects, the state of the art in genetics, quality assurance, education and counseling, financing, discrimination issues, costs and cost-effectiveness, and CF carrier screening in the United Kingdom. Appendices discuss the epidemiology of mutations for cystic fibrosis and cases studies of other carrier screening programs.

Contact: U.S. Government Publishing Office, 732 North Capitol Street, N.W., Washington, DC 20401, Telephone: (202) 512-1800 Secondary Telephone: (866) 512-1800 Fax: (202) 512-2104 E-mail: contactcenter@gpo.gov Web Site: http://www.gpo.gov Available from the website. Document Number: OTA-BA-532.

Keywords: Bioethics, Carrier state, Cystic fibrosis, DNA, Genetic screening, Screening

Nielson D. 1991. Quality home care for chronically ill children in a sparsely populated area [Final report]. Salt Lake City, UT: Utah Department of Health and the University of Utah, 13 pp.

Annotation: This project determined the number of technology-dependent children in home care in the project area and identified problems encountered by their caregivers and support service providers in order to develop a model program for children who require technologically sophisticated care. Other activities included development and implementation of protocols, standards of care, and teaching materials; dissemination of information; and development of a clinical outreach program. [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 PB93-196830.

Keywords: Chronic illnesses and disabilities Rural Population, Cystic Fibrosis, Financing Health Care, Home-Based Health Care, Outreach, Reimbursement, Technology Dependence

Davis S. 1991. Intravenous Antibiotic Therapy in Cystic Fibrosis: Home versus Hospital [Final report]. New Orleans, LA: Tulane University School of Medicine, 121 pp.

Annotation: The purpose of this study was to compare two treatment locations—hospital and hospital/home—for use of intravenous antibiotics on patients who have cystic fibrosis and who experience acute pulmonary exacerbations. The study compared the safety, efficacy, cost, and psychosocial effects of the two places of treatment. [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 PB92-136225.

Keywords: Antibiotics, Chronically Ill, Cystic Fibrosis, Families, Inhalation Therapy, Intravenous Therapy, Nutritional Therapy, Physical Therapy, Psychological Testing

Pierce P. 1988 (ca.). Prescribed Pediatric Extended Care: Medical day care, a cost effective alternative for families of medically dependent children--Final report. Gainesville, FL: Family Health and Habilitative Services, Inc., 143 pp.

Annotation: This project addressed the complex service needs of children who require sophisticated technological interventions and an environment which fosters developmental progress. Activities included: providing medical services to children; establishing a licensure category for Prescribed Pediatric Extended Care (PPEC) centers; disseminating information on the project through monographs, workshops, conferences, and publications; providing ongoing staff training and family support and educational services; establishing third-party reimbursement policies which will make the center financially self-supporting; and conducting a cost-effectiveness evaluation comparing the PPEC centers to other forms of care. [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 PB92-103423.

Keywords: Apnea, Chronically Ill, Cystic Fibrosis, Developmentally Delayed/Disabled, Gastrostomy, Injuries, Reimbursement, Technology-Dependence, Uninsured persons, Vater's Syndrome, Ventilator Dependence

Glasser M. 1988. Network of Services for Families with Chronically Ill Children [Final report]. San Francisco, CA: University of California, San Francisco, 3 pp.

Annotation: This network sought to improve the care of children and adolescents with hemophilia and cystic fibrosis. To this end, the network developed a computerized medical information system which allowed health professionals to quickly enter and retrieve patient information. It also provided a series of workshops for parents on psychosocial issues. [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 PB93-147122.

Keywords: Chronically Ill, Cystic fibrosis, Data Bases, Education of Parents, Families, Hemophilia, Networking, Parent Networks, Stress

Hammond K. 1988. Neonatal Screening and Early Diagnosis of Cystic Fibrosis [Final report]. Denver, CO: University of Colorado School of Medicine, 80 pp.

Annotation: The purpose of this study was to screen all newborn infants in Colorado for cystic fibrosis (CF), using a dried blood spot assay for immunoreactive trypsinogen (IRT). Specific objectives included: (1) Improvement of the predictive value of a positive test by incorporating a new assay for immunoreactive lipase (IRL); (2) improvement of the reliability and ease of confirmatory testing by incorporating a new qualitative sweat test; and (3) identification of cases of CF for clinical and laboratory investigation of the disease during the first five years of life. The study design was primarily descriptive. The study was carried out from October 1984 through September 1987. Screening followed a two-tiered procedure. The study found that 90 percent positive tests on the initial specimen are false positives. An attempt to improve the predictive value of an initially elevated IRT by re-assaying the dried blood specimen for IRL was not successful. The researcher concluded that approximately 40 percent of the false positives in repeat blood specimens could be eliminated by addition of an IRL assay, but this advantage must be weighed against the additional cost. [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 PB89-218622.

Keywords: Blood tests, Cystic Fibrosis, Infants, Neonatal screening, Newborn infants

Anders T. 1987. Family Adaptation to Childhood Chronic Illness [Final report]. Sacramento, CA: Emma Pendleton Bradley Hospital, 39 pp.

Annotation: The main objectives of this study were to: (1) Delineate the adaptive compromises that families make to the severe chronic illness or disability of a child; (2) identify factors associated with good adaptation; (3) construct and pretest instruments that might be useful in studying adaptation; and (4) explore conceptions concerning family adaptation among health professionals who care for chronically ill or disabled children. A total of 50 parents from three illness groups were evaluated: Parents of children with cystic fibrosis; of children with autism; and of children with cancer. The study found that during the developmental phase, neither parents nor professionals approached the situation or their task with unanimity. Parental answers to questions about adaptation indicate that this process required a fundamental value change and reorientation about what—both in the day-to-day and in the long run—matters. Although the study was originally intended to help develop a screening instrument useful to service personnel in the identification of families at risk, the researchers conclude that in light of both the lack of consensus among professionals and the investigator's inability to differentiate families at risk with the scales used, it is questionable whether families can or should be screened for risk. [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 PB87-199048.

Keywords: Autism, Cancer, Children with special health care needs, Chronically ill, Coping behavior, Cystic fibrosis, Families, Family functioning, Risk assessment

Polgar G, Barbero GJ, McCabe EM. 1973. Proceedings of the Conference on Cystic Fibrosis and other Pulmonary Diseases in Children. No place: No publisher, 55 pp.

Annotation: This report discusses identifying the key needs and making recommendations for more effective treatment of pediatric pulmonary disease. It is the result of a conference bringing together the Maternal and Child Health staff, Crippled Children's Program directors and personnel from the Cystic Fibrosis Centers of the National Cystic Fibrosis Research Foundation and pediatric pulmonary centers held in Washington, D.C. April 3-5, 1973. Conference workshops focused on clinical services, program development, training and education, and research and evaluation. The volume ends with a conference attendance list.

Keywords: Child morbidity, Conference proceedings, Cystic fibrosis, Lung diseases, Pediatric pulmonary care, Research

Regional Meeting of Consultant Nurses in Crippled Children's Services (1963: Chicago, IL). 1963. Report of Regional Meeting of Consultant Nurses in Crippled Children's Services. Chicago, IL: No publisher, 68 pp.

Annotation: These proceedings discuss trends in crippled children's services, implementation of the recommendations of the President's Panel on Mental Retardation, program evaluation, the possibility of studying functions of nurses employed in crippled children's services, a report of evaluations of the Illinois County Health Department, continuity of nursing care, nursing referrals to local nurses serving children with disabilities, nursing service to children with cystic fibrosis, local nursing services to the young paraplegic, contributions of a nursing advisory committee to crippled children's services, and improving state consultant services to meet new trends in crippled children's services.

Keywords: Children with developmental disabilities, Children with special health care needs, Conferences, Cystic fibrosis, Illinois, Nurses, Paraplegia, Program evaluation, Referrals

   

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.