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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 18 (18 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, 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 PB93-152957.

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

Perrin J. n.d.. Home Care for Chronically Ill Children: Policy Analysis [Final report]. Boston, MA: Massachusetts General Hospital, Wang Ambulatory Care Center, 171 pp.

Annotation: The goal of this project was to improve the knowledge base from which policymakers and program directors make decisions regarding implementation of community-based and home-based services for children with long-term health care needs. Strategies included a literature review, a review of current innovative home and community-based programs, and the dissemination of findings and recommendations by means of publications and a state-of-the-art conference. [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 PB94-106358.

Keywords: Children, Chronically Ill, Community-Based Health Services, Data Collection from, Home-Based Health Care, Primary Care Centers, Technology Dependence

Cooper L. n.d.. Demonstration Project to Develop a Pediatric Service Coordination Model [Final report]. Cleveland, OH: MetroHealth Medical Center, 34 pp.

Annotation: The goal of this project was to enable families to provide home-centered care for their special needs children, when home was the best option, by establishing a service delivery system. This system: (1) Promoted the availability and accessibility of comprehensive quality services that address physical, psychosocial, spiritual, and developmental needs; (2) encouraged continuity and coordination of care among all components of the child and family's interdisciplinary team; (3) promoted communication among caregivers; and (4) was reimbursable, accountable, and responsive to changing 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 PB93-161891.

Keywords: 99-457, Chronically Ill, Coordination of Health Care, Families, Family-Centered Health Care, Home-Based Health Care, Interdisciplinary Teams, Interdisciplinary Teams, L, P, Pediatric Care Providers, Technology Dependence

University of Illinois at Chicago, Division of Specialized Care for Children. 2010. Guidelines for nurses working in home care. Chicago, IL: University of Illinois at Chicago, Division of Specialized Care for Children, 7 pp.

Annotation: This document is excerpted from the "Home Care Program Policy Manual" of the University of Illinois at Chicago Division of Specialized Care for Children. It describes some of the differences and difficulties experienced by families and nurses working together in the home care of technology assisted children. It also provides information to help nurses establish and maintain a professional working relationship within a home environment. General guidelines are presented to help nurses prepare mentally for the experience of home care. More specific guidelines are also included that discuss establishing appropriate relationships with the child, the parents, and the siblings. [Funded by the Maternal and Child Health Bureau]

Contact: University of Illinois at Chicago, Division of Specialized Care for Children, 3135 Old Jacksonville Road, Springfield, IL 62704-6488, Telephone: (217) 558-2350 Secondary Telephone: (800) 322-3722 Fax: (217) 558-0773 E-mail: dssc@uic.edu Web Site: http://dscc.uic.edu Price unknown.

Keywords: Children with special health care needs, Home care services, Medically fragile children, Nurses, Parents, Technology dependence

Spiegelman BM, ed. . 1997. Competencies for special librarians of the 21st century. Washington, DC: Special Libraries Association, 36 pp.

Annotation: This volume provides information on major professional and personal competencies of special librarians and provides examples of the many roles special librarians can perform in this era of print and electronic information resources. It includes definitions of special competencies, a list of competencies for special librarians of the 21st century, and a report on using competencies as a performance appraisal and compensation tool. Two sections end with a list of references.

Contact: Special Libraries Association, 331 South Patrick Street, Alexandria, VA 22314-3501, Telephone: (703) 647-4900 Contact Phone: (202) 234-4700 ext.643 Fax: (703) 647-4901 E-mail: sla@sla.org Web Site: http://www.sla.org $17.00 for SLA members; $22.00 for non SLA members includes shipping and handling; prepayment required. Document Number: ISBN 0-87111-469-0.

Keywords: Information networks, Librarians, Library services, Professional education, Technology dependence

Fleming J. 1992. "High Tech" Home Care for Children with Chronic Health Conditions [Final report]. Lexington, KY: University of Kentucky, 9 pp.

Annotation: The objective of this study was to create a data base that will aid in further describing technology-dependent children being cared for in their homes. Specific aims are to: (1) Identify selected demographic characteristics of technology-dependent children and their families; (2) define home care of technology-dependent children in terms of consumption of resources; (3) test selected hypotheses regarding the effects of the illness of these children on their families; and (4) provide the means for these data to be used by others in the development of recommendations for nursing practice relating to the care of technology-dependent children and their families. Thirteen cities in the United States served as areas from which data was collected. Children were between three months and nineteen years of age and had been technology-dependent and being cared for at home for at least a month. Using structured interviews, data was obtained from parents receiving services from private and public home health agencies. Among the study's findings were the following: (1) The financial burden and social impact on the family and personal strains vary depending on the type of dependency; (2) depression does not vary significantly among the four types of dependency; (3) satisfaction varies significantly with caregivers; and (4) the quality of life of technology-dependent children is apparently affected by persons who work with them in their home. [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 PB93-181857.

Keywords: Chronically ill, Data bases, Data collection, Families, High technology home care, Technology dependence

Porter SM, Bierle T, Dietrich LL, Palfrey JS. 1991. Children assisted by medical technology in educational settings: Resources for training. Boston, MA: Children's Hospital, Project School Care, 60 pp.

Annotation: This booklet provides school nurses a listing of resources and training materials to help them care for children with special health needs. It indicates changes in the care of children assisted by medical technology since 1980 including demographic and medical trends, changes in federal legislation which provide for the education of these children, and lists of resource materials and organizations. The booklet organizes the resource materials topically: manuals, universal precautions, nutrition and medication, elimination, respiratory, equipment, training community personnel, financing, and transportation. [Funded by the Maternal and Child Health Bureau]

Keywords: Child health, Children with special health care needs, Medically fragile children, Resources for professionals, School health services, Special education, Technology dependence

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

Palfrey J. 1991. State Census of Technology-Dependent Children [Final report]. Boston, MA: Children's Hospital, 28 pp.

Annotation: This study was a census of all children defined as depending on extraordinary nursing services on a daily basis. Because this study was longitudinal, investigators were able to trace the prevalence of these conditions over time and look at changes within device use or in specific diseases, as well as changes in the etiologies of medical dependency. These data should be useful for program planning purposes as well as for tracking preventable causes of long-term disability. [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 PB92-161132.

Keywords: Chronically Ill, Data Bases, Data Collection, Pediatric Care Providers, Technology 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, 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

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, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu 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

Kettrick R. 1988. Fostering home and community-based care for technology-dependent children: Report to Congress and the Secretary by the Task Force on Technology-dependent Children. [Washington, DC]: U.S. Health Care Financing Administration, Task Force on Technology-dependent Children; for sale by U.S. Government Printing Office, 2 v.

Annotation: Developed by the Task Force on Technology-Dependent Children, this reports on alternatives to institutional care for technology-dependent children. The task force conducted a comprehensive examination of barriers that prevent the provision of appropriate care in a home or community setting. It also examined changes necessary in the provision and financing of health care in private and public health care programs to foster home and community-based alternatives to the institutionalization of technology-dependent children. The Task Force developed definitions for technology-dependent children, appropriate care, and case management which are also contained in this report.

Contact: HathiTrust Digital Library, University of Michigan, Telephone: (734) 764-8016 E-mail: hathitrust-info@umich.edu Web Site: https://www.hathitrust.org/digital_library Available from Hathitrust via participating libraries. Document Number: HRSA Info. Ctr. MCHB347.

Keywords: Children with special health care needs, Community based services, Home care, Technology dependence

U.S. Congress, Office of Technology Assessment. 1987. Technology-dependent children: Hospital v. home care—A technical memorandum. Washington, DC: U.S. Congress, Office of Technology Assessment, 105 pp.

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: law-nhlp@uiowa.edu 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

University of Colorado Health Sciences Center, School of Nursing. 1986. Clean intermittent catheterization: User's manual. Denver, CO: University of Colorado Health Sciences Center, 20 pp.

Annotation: This manual is designed for school nurses, teachers, parents, health aides, and other health professionals. The first section describes the benefits of clean intermittent catheterization, the equipment used for the procedure, steps in the catheterization of a male and female child, and how to recognize the warning signs of a bladder infection. The second section is more specifically for the instruction of school nurses and other health professionals. It identifies major points in teaching clean intermittent self-catheterization to a child, specifies the health professional's role in monitoring the child, and indicates the ways in which the health professional may serve as an advocate for children with disabilities.

Contact: Washington State, Office of the Superintendent of Public Instruction, Old Capitol Building, P.O. Box 47200, Olympia, WA 98504-7200, Telephone: (360) 725-6000 Secondary Telephone: (360) 664-3631 Web Site: http://www.k12.wa.us/ Price unknown.

Keywords: Catheterization, Children with special health care needs, Medically fragile children, School health, Technology dependence

Fox HB, with Yoshpe R. 1986. Technology-dependent children's access to Medicaid home care financing. Washington, DC: Fox Health Policy Consultants, 47 pp.

Annotation: This report looks at the opportunities that technology-dependent children have for obtaining home care coverage under the Medicaid program. It is divided into four sections that provide information on: 1) the four basic Medicaid options available for financing technology-dependent children (regular waivers, model waivers, Katie Beckett waivers, and state plan amendments), 2) the current level of state activity in each of the options, 3) state policies and practices that limit the number of severely disabled children able to participate in the Medicaid home care program options, and 4) the Medicaid and Crippled Children's Services (CSS) financing opportunities that would be available in five states for three hypothetical technology-dependent children.

Contact: Maternal and Child Health Policy Research Center, 750 17th Street, N.W., Suite 1100, Washington, DC 20006-4607, Telephone: (202) 223-1500 Fax: (202) 496-9067 E-mail: mmcmanus@mchpolicy.org Web Site: http://www.mchpolicy.org Available from the website.

Keywords: Access to health care, Children with special health care needs, Financing, Home care services, Medicaid, Technology dependence, Waivers

American Association of University Affiliated Programs for Persons with Developmental Disabilities. 1985. Developmental handicaps: Prevention and treatment III. Silver Spring, MD: American Association of University Affiliated Programs, 111 pp.

Annotation: This report contains two sections. Section one describes developmental issues of concern in 1985: Serious viral infection in persons with developmental disabilities, issues of technological intervention for children with disabilities; community based services for chronically ill or disabled children and their families; and fragile-X syndrome. Section two contains examples of linkages between university affiliated programs and state and local programs and the training needs of state programs.

Keywords: Children with special health care needs, Chronic illnesses and disabilities, Communicable diseases, Fragile X syndrome, Medically fragile children, Program planning, Technology dependence

U.S. 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: U.S. 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: custserv@nlm.nih.gov 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

   

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.