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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 20 (27 total).

Magrab P. n.d.. Networking and Community-Based Services for Children with Special Needs: [Final report]. Washington, DC: Georgetown University Medical Center, 45 pp.

Annotation: This project sought to achieve comprehensive, coordinated, community-based services for children with special health needs and their families through improved collaboration among parents and public and private agencies at all levels within the service delivery system. Activities included maintaining a network of States, facilitating coalitions within States, brokering technical assistance, organizing conferences, and developing materials on topics such as the financing of services, service provision to culturally diverse groups, rural services, and collaboration between mental health professionals and other 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 PB93-147130.

Keywords: Child Care, Chronically Ill, Collaboration of Care, Community-Based Health Care, Families, Family-Based Health Care, Financing, Grandparents, Medicaid, Networks, Parent Support Groups, Parents, Rural Population

Gates A. n.d.. The Chronic Illness Program (CIP) [Final report]. New Orleans, LA: Children's Hospital, 21 pp.

Annotation: The goal of this project was to develop a regionalized system of care for chronically ill children and their families. To achieve this goal, the project identified the needs of children with chronic illnesses and their families, developed a network of existing resources for this population, and established new resources. Activities included developing a network of parents, community providers, and health professionals; conducting education/training sessions for school and Title V personnel, parents, and health professionals; producing educational packets and training materials; and developing a computerized information and referral system for state MCH and school system staff. [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 PB93-147080.

Keywords: Chronically Ill, Coordination of Health Care, Families, Networking, Play Therapy, Referrals

Cataldo M. n.d.. Project ABLE - Altering Bowel Learning Effectively [Final report]. Baltimore, MD: Kennedy Institute for Handicapped Children, 9 pp.

Annotation: This project addressed the problem of fecal incontinence in children with myelomeningocele by developing an affordable instructional package for health care providers and a parent instruction program in order to help these children develop bowel control. Improvement was documented in half the children using this systematic home-based method. The training program included a videotape and written provider and parent manuals. [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 PB93-152999.

Keywords: Bowel Control, Chronically Ill, Home-Based Health Care, Meningomyelocele, Parent Education Clinics, Spina Bifida Association, Spina Bifida Incontinence, Toilet Training

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

Valentine S. n.d.. Developing Community-Based Family Centered Care/Case Management and Family Support Services for Mississippi's Children with Special Health Care Needs [Final report]. Jackson, MS: Mississippi State Department of Health, 25 pp.

Annotation: This project sought to develop a statewide system of community-based, comprehensive care/case management and family support services. Program strategies included developing a training curriculum for the skilled delivery of home-based family support services by medical professionals, paraprofessionals, and parents; piloting a respite providers' network; providing statewide training on the provision of family support services; and developing and disseminating a statewide directory of trained family support service 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 PB93-158277.

Keywords: 99-457, Case Management, Chronically Ill, Community-Based Health Care, Coordination of Health Care, Family-Based Health Care, Financing Health Care, Fragmentation of Services, L, P, Parents, Rural Population

Pratt S. n.d.. Montana Project for Children with Special Health Care Needs [Final report]. Helena, MT: Montana Department of Health and Environmental Sciences, 16 pp.

Annotation: The overall goal of this project was to develop a replicable system of family-centered, community-based case management for children with special health care needs in a frontier State. Targeted communities were under 20,000 in population and served areas at least 50 miles from a level II facility. The project objectives were to: (1) Upgrade case management and assessment skills of local public health nurses; (2) develop family-centered, community-based case management programs that address the needs of the family and the child with special needs; and (3) develop community-based teams that empower families to actively participate in identifying and meeting educational, social, psychological, health, and financial needs for themselves and the child with special 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 PB93-158640.

Keywords: Case Management, Chronically Ill, Community-Based Health Care, Education of Health Professionals, Families, Family-Centered Health Care, Public Health Nurses, Rural Populations

Davis J. n.d.. Improving Coordination of Services for Chronically Impaired Children and Their Families [Final report]. Santa Fe, NM: New Mexico Health and Environment Department, 18 pp.

Annotation: This project sought to increase coordination of service provision to chronically ill and disabled children, with a special focus on Native American children. Activities included organizing an annual conference, tracking legislation, establishing a committee which analyzed relevant portions of the state budget, and conducting a survey on the number of children receiving case management 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 PB91-241935.

Keywords: American Indians, Chronically Ill, Coordination of Health Care, Families, Fragmentation of Services, PL 94-142

Malach R. n.d.. Case Management for Parents of Indian Children with Special Health Care Needs [Final report]. Bernalillo, NM: Southwest Communication Resources, 20 pp.

Annotation: This project provided a model program for American Indian families and the professionals who served them. The program goals were to identify cultural, systemic, institutional, and policy barriers that inhibit Native American family participation in the "Western" health care/case management system; improve case management by facilitating effective communication between Native American families and the non-Native American health care professionals who serve them; and increase Native American family participation in health care policy development and planning forums in order to promote changes that improve services for Native American children and families. Activities included developing a videotape illustrating effective cross-cultural communication strategies for non-Indian health care providers and training an Indian parent advocate to help families seen at IHS special pediatric clinics. [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 PB93-158251.

Keywords: American Indians, Case Management, Chronically Ill, Community-Based Health Care, Coordination of Health Care, Developmentally Delayed/Disabled, Family-Based Health Care, Indian Health Service (IHS), Low income groups, Parents, Rural Population

Levinson J. n.d.. Regional Comprehensive Care Program for Juvenile Connective Tissue Diseases [Final report]. Cinicinnati, OH: Children's Hospital Medical Center, Special Treatment Center for Juvenile Arthritis, 48 pp.

Annotation: This project provided comprehensive services (including early diagnosis, continuity of treatment, and case management by an interdisciplinary team) to juveniles with connective tissues diseases. Activities included providing services in forty-eight counties in Indiana, Kentucky, Ohio, and West Virginia; collecting clinical, treatment, and demographic data on all patients; and developing regional networks of health professionals. [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 PB93-161883.

Keywords: Adolescents, Appalachians, Chronically Ill, Connective Tissue Diseases, Data Collection, Juvenile Rheumatoid Arthritis, Patient Education, Rehabilitation, Rheumatic Diseases, Systemic Lupus Erythematosus

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

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

Diaz de Ortiz M. n.d.. Caguas Crippled Children Service Network [Final report]. Caguas, PR: Caguas Regional Hospital, 33 pp.

Annotation: The goal of this project was to develop an optimum habilitation and/or rehabilitation process for children (ages birth to 21 years) with special health needs, within Puerto Rico's Caguas Health Region. The principal outcomes of this project were the development of an electronic central register for patients with special health needs in the Caguas Health Region, and the interagency work agreement and interagency referral form, which have enabled project staff and Pediatric Center personnel to share information and coordinate services with other government service providers from central and local levels. [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 PB93-198901.

Keywords: Children with special health care needs, Chronically Ill, Collaboration of Care, Community-Based Health Care, Confidentiality, Families, Family-Based Health Care, Habilitation, Home Visiting, Referrals, Rehabilitation

Thomas R. n.d.. Child and Family Support Project [Final report]. Seattle, WA: Children's Hospital and Medical Center, 144 pp.

Annotation: The Child and Family Support Project was designed to facilitate and support access to and coordination of health care services for children with chronic conditions and their families in order to strengthen family capacity to care for their child in the community setting. The project included activities to identify and develop models for services through: improvement of communication and coordination between community-based services; development of a data base of resources for the populations; enhancement of transition from institutional to community or least restrictive environment; and support for the families of children with chronic conditions. [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 PB94-106291.

Keywords: Chronically Ill, Coordination of Health Care, Data Bases, Family Support, Family-Based Health Care, Networking

Stein R. 1993. Planning proposal for a national survey of children with special health needs [Final report]. Bronx, NY: Albert Einstein College of Medicine, 52 pp.

Annotation: The purpose of this project was to establish and implement a planning mechanism for a new population-based survey of children in the United States who have special health needs. It involved designing, planning, and piloting a national cross-sectional survey to provide the data base and framework for the development and monitoring of a system of regionalized and community-based service. It was to allow for the addition of longitudinal and/or sequential cross-sectional surveys in the future. [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 PB96-181540.

Keywords: Chronically Ill, Data Analysis, Data Collection

Michals K. 1993. An Educational Behavioral Program for PKU [Final report]. Chicago, IL: University of Illinois at Chicago, 47 pp.

Annotation: Long-term dietary treatment of patients with phenylketonuria (PKU) is essential for optimal development and maintenance of intellectual ability. Children should be educated and adequately prepared to assume self-management of their treatment as they undergo physiological and psychosocial maturation. This study examined the effects of an experimental program that uses both an educational and a behavioral approach to accomplish dietary self-management by child and adolescent phenylketonuria patients. [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 PB95-209516.

Keywords: Adolescents, Adolescents, Children with Special Health care Needs, Chronic Illnesses and Disabilities, Chronically Ill, MCH Research, Metabolic Disorders, Nutrition, Patient Education, Phenylketonuria, School Age Children, School-Age Children

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

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

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

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

Holaday B. 1990. A Survey of Chronically Ill Children's Use of Time Out of School [Final report]. San Francisco, CA: University of California, San Francisco, 132 pp.

Annotation: The primary aim of this study was to describe and analyze the everyday out-of-school life experiences of chronically ill school-age children, and to examine the effects of different ecological contexts on the child's out-of-school life. To accomplish this aim, we focused on the ways in which chronically ill children use their out-of-school time. The use of time is a proxy—an indicator of what matters to children and to their parents. Based on the analysis of data from a pilot study, two general hypotheses were developed: (1) The patterns of chronically ill children's time use depend on the extent to and the manner in which parents and others engage in joint activities with them; and (2) the capacity of the parents to engage in such joint behavior depends on the extent to which there exist external support systems that provide opportunity, assistance, resources, and channels of communication. A cross-sectional survey design was used to collect data at one point in time from a sample of 365 chronically ill school-age children and their parents. We examined time use in five areas: Children's activities on their own (alone or with friends); children's activities with their parents; children's in-home and out-of-home chores, jobs, and responsibilities; children's participation in organized activities; and television viewing. These were activities that would be meaningful to children from a wide range of backgrounds, and represent different aspects of daily life for a school-age child. Children were selected with a variety of chronic illnesses. [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 PB92-136233.

Keywords: After School Activities, Chronically Ill, Parents, School-Age Children

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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.