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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 15 (15 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

Resnik S. 1994. The social history of hemophilia in the United States (1948-1988): The emergence and empowerment of a community. [New York, NY]: Columbia University School of Public Health, Division of Health Policy and Management, 345 pp.

Annotation: This doctoral dissertation chronicles and analyzes the transformation of hemophilia--an inherited, incurable blood disease--into a manageable chronic condition over the course of 40 years. It uses an ethnographic approach in juxtaposition with documentary analysis and includes a definition of hemophilia and a history of the disease and its treatment. The dissertation is divided into the following chapters: (1) introduction; (2) the dismal era; (3) emerging from the dismal era (1948-1965); (4) the 60s: the beginning of a golden interval; (5) the hemophilia community becomes politicized--the late 60s and early 70s; (6) politics and the blood business; (7) the meaning of the maternal and child health years; (8) the AIDS era begins: the years of confusion and denial (1980-1982); (9) the AIDS era: conflicts between lay and medical leadership emerge (1983-1985); (10) the AIDS era (1985-1988): the hemophilia community rises to the challenge; and (11) conclusions. End notes, references, and a bibliography are provided. The appendices include a glossary; informant discussions, forms, codes, shapers and witnesses; research methods; a list of hemophilia treatment centers and chapters; federal program regions; treatment center outcome data; HIV hemophilia data; the Tri-Agency Model; and the evolution of the U.S. hemophilia culture.

Keywords: AIDS, Hemophilia, Hemotologic disorders, History, Research, Social factors, United States

Gomperts E. 1993. Collaborative Study of the Effects of HIV on Development of Hemophilic Children [Final report]. Los Angeles, CA: Children's Hospital of Los Angeles, 88 pp.

Annotation: This project examined a very important group of children infected with HIV. The patients studied included children with hemophilia who received repeated infusions of clotting factor concentrate derived from pooled human plasma prior to routine screening of the blood supply. This prospective longitudinal study examined changes in neurological and neuropsychological functioning, physical growth and development, and immunological status in hemophilic children exposed to HIV and in matched control groups of HIV-negative children with hemophilia and siblings of children with hemophilia. [Funded by the Maternal and Child Health Bureau]

Keywords: Children with Special Health care Needs, Chronic Illnesses and Disabilities, HIV, Hemophilia, MCH Research, Neurological Disorders, Research

National Hemophilia Foundation, Department of AIDS Education and Preventive Services. 1992. Reaching out to culturally diverse hemophilia populations: Chapter outreach demonstration project. New York, NY: National Hemophilia Foundation, 252 pp.

Annotation: To bridge the gap in access to health services between Caucasians and other ethnic populations, the National Hemophilia Foundation (NHF) and the Maternal and Child Health Bureau funded a project to identify culturally diverse hemophiliac populations and facilitate their access to comprehensive care. This project is called the Chapter Outreach Demonstration Project. This manual codifies the experiences of NHF chapters and other hemophilia associations in developing plans to work with hemophilia treatment centers and community-based organizations to link the target population with needed services. Chapters cover program planning, program set-up, training, outreach interventions, evaluation and funding. Special appendices cover case studies, a bibliography, and a listing of resources. [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 in libraries. Document Number: HRSA Info. Ctr. MCHF102.

Keywords: AIDS, Cultural diversity, Hemophilia

Perrin J. 1992. Stress, Bleeding, and Functional Status in Hemophilia [Final report]. Boston, MA: Massachusetts General Hospital, 45 pp.

Annotation: This study had four aims to: (1) Describe the patterns of bleeding in a sample of children and adolescents with hemophilia; (2) examine the relationship of stress as perceived by children or parents and the frequency of bleeding; (3) determine the rate of psychological problems among boys with hemophilia and examine the characteristics that affect that risk; (4) determine the impact of bleeding on the functioning of children and adolescents with hemophilia. Approximately 100 school age children with hemophilia were studied for a period of 6 months. The study found high rates of bleeding associated with trauma. It also found that the impact of stress in increasing the likelihood of bleeding is clinically relatively small, suggesting that the impact of improved stress management will also be small. The study showed a high rate of psychological problems among children with hemophilia. It also demonstrated a strong link between maternal self-esteem and the psychological functioning of the child. In addition, types of parenting were associated with different levels of social competence. These findings suggest psychological and social functioning of children with hemophilia may be improved through work with parents rather than directly with children. [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 PB93-180008.

Keywords: Chronically ill, Coping skills, Hemophilia, Parents, School-age children, Self-esteem, Stress

Randall-David E. 1990. Women helping women: Networks for support and caring. Rockville, MD: National Hemophilia Program, U.S. Maternal and Child Health Bureau, in conjunction with Wake Forest University, Bowman Gray School of Medicine, Comprehensive Hemophilia Program, 105 pp.

Annotation: This manual is written for women in the hemophilia community particularly as they relate to HIV disease. It covers women's cultural heritage and place in the self-help movement, taking care of yourself, taking care of others, and becoming a leader in AIDS advocacy and education. Appendices list organization and publication resources and describe the decision-making process. [Funded by the Maternal and Child Health Bureau]

Keywords: Hemophilia, AIDS, Advocacy, HIV, Networking, Support groups, Women

U.S. Maternal and Child Health Bureau. 1989-. Report of the Congress on the consolidated federal programs under the maternal and child health services block grant: Fiscal year 19__. Rockville, MD: U.S. Maternal and Child Health Bureau, annual?

Annotation: This report contains a discussion of the various activities and accomplishments of the projects funded under the authority of the Consolidated Federal Programs under the Maternal and Child Health Services Block Grant of the requirements of Section 506 (a ) (3) of the Social Security Act. The projects are described under five separate headings: training, research, genetics, hemophilia, and Maternal and Child Health Improvement Projects. Included in the report is a brief introduction to the MCH Services Block Grants to States.

Contact: U.S. Maternal and Child Health Bureau, Health Resources and Services Administration, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (301) 443-2170 Contact Phone: (301) 443-5720 Web Site: https://mchb.hrsa.gov Available from the website.

Keywords: Block grants, Child health, Federal MCH programs, Federal programs, Genetics, Hemophilia, Maternal health, Research, SPRANS, State programs, Training

Randall-David E. 1989. Strategies for working with culturally diverse communities and clients. Bethesda, MD: Association for the Care of Children's Health, 96 pp.

Annotation: This manual, prepared in conjunction with the Comprehensive Hemophilia Program at Bowman Gray School of Medicine, was originally designed to guide participants in the Community Outreach Demonstration Project (CODP). This MCHB-funded project has as its major goal the identification of ethnic minority patients with hemophilia and the provision of relevant education and comprehensive treatment. The principles in the manual, however, can be used by all community groups engaged in a broad range of educational, medical, and social service outreach efforts. [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. MCHC043.

Keywords: Hemophilia, Minority groups

Gossert D. 1989. Family Assessment Project: [Final report]. Denver, CO: Colorado Department of Health , 19 pp.

Annotation: This project developed and refined a family assessment questionnaire and data base, collected data on previously unsurveyed populations of chronically ill children, established the prevalence rate of psychosocial distress among families with chronically ill children, and assessed their readiness for intervention. The goal was to separate out those families at high risk who were not connected to any agency from those at high risk who were using community services. Those high-risk, unconnected families were to have first priority for social work intervention. Through this screening process, scarce staff time was to be directed to those families most in need of services. Services were to be targeted for the coordination of all the agencies involved with a family. Intervention was based on communication from the family. [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 PB93-149672.

Keywords: Coordination of Health Care, Data Bases, Families, Handicapped, Hemophilia, Parent Education, Screening Tools, Social Work

Cohen H. 1989. Financing Health Care for Chronically Ill and Disabled Children [Final report]. Bronx, NY: Albert Einstein College of Medicine, 174 pp.

Annotation: This project analyzed the utilization, expenditures, and financing of health care for children and young adults with three different chronic conditions: autism, hemophilia, and severe mental retardation. The purpose of the study was to collect reliable and accurate national data on low incidence conditions useful for making public policy. Among the many policy concerns that the data addressed, two stood out: access to health care services and an equitable system of financing of those services. [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 PB94-106283.

Keywords: Asians, Autism, Blacks, Case Management, Children, Chronic illnesses and disabilities, Data Collection, Financing Health Care, Hemophilia, Hispanics, Insurance, Medicaid, Mental Retardation, Minorities, Public Policy, Reimbursement

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

Hutchins VL, Duffy EA. 1981. Psychological and social components of comprehensive care for persons with hemophilia and their families. Rockville, MD: U.S. Department of Health and Human Services, Office for Maternal and Child Health, 6 pp.

Annotation: This paper presents an attempt to meet a request by hemophilia diagnostic and treatment centers for guidance to assist them in meeting the requirement for mental health services as part of comprehensive care for patients and their families. The guidance consists of listing the psychological and social components in a comprehensive hemophilia care center at the primary, secondary and tertiary care levels. Professional staff roles and related services are also discussed in terms of what is desirable for effective care.

Contact: Maternal and Child Health Library at Georgetown University, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org Photocopy available at no charge. Document Number: HRSA Info. Ctr. MCHB107; DHHS (HSA) 81-5247A.

Keywords: Hematologic diseases, Hemophilia

National Institute for Advanced Studies. 1978. Evaluation of the BCHS-funded Hemophilia Diagnosis and Treatment Centers to determin objectives and goals set by the BCHS. Washington, DC: National Institute for Advanced Studies, 4 items.

Annotation: This package of materials discusses a 1978 Bureau of Community Health Services (BCHS)-funded study of nine hemophilia diagnosis and treatment centers. This package includes an executive summary, Federal Register issue for October 21, 1977 (Part III), a budget statement, and the final report.

Keywords: Final reports, Hemophilia programs, Program evaluation

University of Iowa, Department of Pedodontics and University Hospital School. 1974. Symposium: Dental management of the handicapped child. [Iowa City, IA]: University of Iowa, 94 pp.

Annotation: This booklet contains the program and summaries of symposium presentations held on May 22-23, 1973, at the University of Iowa. Topics include genetics and the prevention of mental retardation; neuromuscular diseases involving craniofacial structures; hospital dentistry; anesthesia and analgesia; new directions in the training of professionals for delivery of services to the handicapped; challenges in preventing dental disease; a comprehensive clinical dental program for hemophiliacs; organization of an interdisciplinary unit for the study of craniofacial anomalies; and the future care of the handicapped person. The symposium was supported by Training Project 484, Maternal and Child Health Service, health Services and mental Health Administration, awarded to the University of Iowa, Department of Pedodontics, in cooperation with the University Hospital School. [Funded by the Maternal and Child Health Bureau]

Contact: National Maternal and Child Oral Health Resource Center, Telephone: (202) 784-9771 E-mail: OHRCinfo@georgetown.edu Web Site: https://www.mchoralhealth.org Available from the website.

Keywords: Analgesic drugs, Anesthesia, Children, Children with developmental disabilities, Children with special health care needs, Craniofacial abnormalities, Dental care, Dental education, Dentists, Families, Hemophilia, Mental retardation, Oral health, Pregnant women

National Blood Resource Program. 1972. Pilot study of hemophilia treatment in the U. S.. Bethesda, MD: National Blood Resource Program, 346 pp.

Annotation: This report describes the third of three studies conducted by Booz, Allen, and Hamilton, Inc. to provide comprehensive information and baseline data concerning the nation's blood resource. It examines the national prevalence and characteristics of hemophilia patients under treatment in the U. S. and their potential effects upon the nation's blood resource; general characteristics of physicians treating hemophilia; modes of treatment and use of blood products; characteristics of a patient sample, and organization of care in selected hemophilia treatment centers. The first two volumes described (1) the supply and use and (2) regulation of the nation's blood resource.

Contact: National Institutes of Health, 9000 Rockville Pike, Bethesda, MD 20892, Telephone: (301) 496-4000 Secondary Telephone: (301) 402-9612 Fax: (301) 496-0017 E-mail: NIHInfo@OD.NIH.GOV Web Site: http://www.nih.gov

Keywords: Hemophilia, Hemophilia programs

   

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.