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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 6 (6 total).

Gates A. n.d.. Interagency Home Care Model for Ventilator Assisted Individuals in Louisiana: [Final report]. New Orleans, LA: Children's Hospital, 17 pp.

Annotation: This project developed a model for care and services, a services resource network and coordinated education and training resources. The project worked with over 40 families, published a book, Homeward Bound: Resources for Living at Home with a Chronically Ill Child, and produced training videotapes for health care providers. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB93-152957.

Keywords: Chronic illnesses and disabilities, Dependence, Home-Based Health Care, Technology, Ventilator Dependence

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, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] 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

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, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] 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', Ventilator Dependence, s Syndrome

Aday LA, Aitken MJ, Wegener DH. 1988. Pediatric home care: Results of a national evaluation of programs for ventilator assisted children. Chicago, IL: Pluribus Press, 444 pp. (Continuing CHAS research series; no. 36)

Annotation: This book reports on a comprehensive evaluation of three SPRANS demonstration projects that developed state-wide systems of care for ventilator-assisted children. It presents findings based on both quantitative and qualitative data gathered about the feasibility and success of developing home alternatives for these children. It examines the kinds of programs developed, and the impact the programs had on on systems of care, on the children, on the families, and on costs of their care, and presents lessons and implications from the study.

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available in libraries. Document Number: HRSA Info. Ctr. MCHC006.

Keywords: Children with special health care needs, Mechanical ventilators, Program evaluation, SPRANS, Technology dependence

Gittler J, Colton M. 1987. Alternatives to hospitalization for technology dependent children: Program models. Iowa City, IA: University of Iowa, 338 pp.

Annotation: This report describes five case management programs that create alternatives to hospitalization and institutionalization for technology dependent children in Illinois, Iowa, Louisiana, Maryland, and Pennsylvania. For each program, the report discusses mission and goals, organization, program eligibility criteria, population served, program services, other activities, financing of services, program budget and personnel resources and costs. Appendices include forms and checklists used by the agencies and patient information handouts. [Funded by the Maternal and Child Health Bureau]

Contact: National Health Law and Policy Resource Center, University of Iowa, 412 Boyd Law Building, Melrose and Byington Streets, Iowa City, IA 52242-1113, Telephone: (319) 335-9067 Contact Phone: (319) 335-9067 Fax: (319) 335-9098 E-mail: [email protected] Web Site: http://blogs.law.uiowa.edu/nhlp Available in libraries.

Keywords: Case management, Child health, Children with special health care needs, Home care, Mechanical ventilators, Medically fragile children, Technology dependence

Bureau of Health Care Delivery and Assistance, Division of Maternal and Child Health. 1982. Report of the Surgeon General's Workshop on Children with Handicaps and Their Families: Case example—The ventilator-dependent child. Washington, DC: Bureau of Health Care Delivery and Assistance, Division of Maternal and Child Health, 69 pp.

Annotation: The Surgeon General's Workshop on Children with Handicaps and Their Families was convened in 1982 in order to develop recommendations for strategies to recognize the special burden and challenges borne by the parents and siblings of children with disabilities and to stimulate the provision of resources to safely support these children in their communities. The workshop concentrated on the specific problems of the ventilator-dependent child, and the findings for this prototype were extrapolated for their implications for all handicapped children. This report contains summaries of the presentations made at the workshop, and the recommendations developed by the workshop participants. This report contains summaries of the presentations made at the workshop, and the recommendations developed by the workshop participants.

Contact: National Library of Medicine, U.S. Department of Health and Human Services, 8600 Rockville Pike, Bethesda, MD 20894, Telephone: (301) 594-5983 Secondary Telephone: (888) 346-3656 Fax: (301) 402-1384 E-mail: [email protected] Web Site: http://www.nlm.nih.gov Available from the website.

Keywords: Children with special health care needs, Community based services, Family centered care, Mechanical ventilators, Medically fragile children, Technology dependence

   

The MCH Digital Library is one of six special collections at Geogetown University, the nation's oldest Jesuit institution of higher education. It is supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under award number U02MC31613, MCH Advanced Education Policy with an award of $700,000/year. The library is also supported through foundation and univerity funding. 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.