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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 5 (5 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, 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

Association of Maternal and Child Health Programs. 2009. Models of care for children and youth with special health care needs: Promising models for transforming California's system of care. Washington, DC: Association of Maternal and Child Health Programs, 55 pp.

Annotation: This report provides a range of models of care for children and youth with special health care needs that the Lucille Packard Foundation for Children's Health can review and discuss as a starting point for mapping out a strategy to support a transformation of the system of care. The report discusses models of care, the importance of integrated services, the medical home, care coordination, cultural competence, family-centered care and family involvement, transition, palliative and respite care, financing of care, and health information technology.

Contact: Association of Maternal and Child Health Programs, 1825 K Street, N.W., Suite 250, Washington, DC 20006-1202, Telephone: (202) 775-0436 Fax: (202) 478-5120 E-mail: [email protected] Web Site: http://www.amchp.org Available from the website.

Keywords: Financing, Adolescents with special health care needs, Children with special health care needs, Cultural competence, Families, Health care systems, Medical home, Palliative treatment, Respite care, Service coordination, Service integration, Transition to independent living

Barnes L. 2004. Tennessee Respite Coalition: [Final report]. Nashville, TN: Tennessee Department of Mental Health and Developmental Disabilities, 27 pp., plus appendices.

Annotation: This final report describes the Tennessee Respite Coalition during the period July 1, 2000, to January 31, 2004. The purpose of the project was to improve the availability and accessibility of respite care in Tennessee. The report covers the following topics: (1) purpose of project and relationship to SSA Title V maternal and child health programs, (2) goals and objectives, (3) methodology, (4) evaluation, (5) results and outcomes, (6) publications and products, (7) dissemination and utilization of results, (8) future plans and follow-up, and (9) type and amount of support and resources needed to replicate. The report includes two appendices: (1) respite needs questionnaires for professionals and caregivers and (2) several issues of the coalition's newsletter. A CD-ROM and a compact disc are also included. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available from the website.

Keywords: Caregivers, Final reports, Respite care, Tennessee

Children's Hospital, Boston, Project School Care. 1992. Working toward a balance in our lives: A booklet for families of children with disabilities and special health care needs. Boston, MA: Children's Hospital, Project School Care, 90 pp.

Annotation: This booklet is designed to help parents of children with special health needs deal with their children's experiences in the hospital, at home, and at school. It was developed by a group of parents and staff of Project School Care, a program at Children's Hospital, Boston. Project School Care was established to foster educational opportunities for children with special health needs, particularly those assisted by medical technology. The booklet discusses the hospital experience, common questions after hospitalization, home care, home nursing, respite care, financing health care, equipment, education, vocational training and planning for adulthood, recreation and travel, and record keeping. Appendices include a list of resource organizations, suggested readings, and a glossary. The booklet was supported by grants from the U.S. Maternal and Child Health Bureau and the Charles A. Lindbergh Fund. [Funded by the Maternal and Child Health Bureau]

Keywords: Adolescents with special health care needs, Children with special health care needs, Education, Home care, Nursing, Parenting, Respite care, School health services, Vocational rehabilitation

Salisbury C, Intagliata J. 1986. Respite care: Support for persons with developmental disabilities and their families. Baltimore, MD: Paul H. Brookes Publishing Company, 336 pp.

Annotation: This book is for families who require respite care for a member with a disability. It provides many answers to the most important questions about respite care and is divided into three major sections: rationale and need for respite services; issues and models for delivering respite services; and evaluating respite services.

Contact: Brookes Publishing, P.O. Box 10624, Baltimore, MD 21285-0624, Telephone: (800) 638-3775 Secondary Telephone: (410) 337-9580 Fax: (410) 337-8539 E-mail: [email protected] Web Site: http://www.brookespublishing.com Available in libraries.

Keywords: Developmental disabilities, Respite care

   

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.