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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 20 (62 total).

Family Voices, IMPACT. n.d.. The Affordable Care Act (ACA): Prevention and health promotion for everybody!. Albuquerque, NM: Family Voices, IMPACT, 2 pp.

Annotation: This document encourages families to partner with health professionals on getting preventive health services and to take a lead role in promoting health at home and where they live, work, and play. Topics include how information sharing between families and health professionals can promote child health, the Affordable Care Act's preventive health services for children, the Bright Futures initiative, and tips for a healthy lifestyle. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, IMPACT, 3701 San Mateo Boulevard, N.E., Suite 103, Albuquerque, NM 87110, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.fv-impact.org Available from the website.

Keywords: Bright Futures, Child health, Children, Families, Family centered care, Health care reform, Health promotion, Parent professional relations, Patient Protection and Affordable Care Act, Preventive health services, Public private partnerships, Special health care needs

CrossBear S, LeGore S. n.d.. Family involvement in child-serving systems and the need for cross-system collaboration. Rockville, MD: U.S. Substance Abuse and Mental Health Services Administration, Center for Substance Abuse Treatment, 10 pp.

Annotation: This brief reviews what has been accomplished to date in the development of the family voice in all child-serving systems including substance abuse, mental health, child welfare, juvenile justice, trauma support, education, and primary care. The review indicates what needs to occur to create true cross-systems collaboration supporting family involvement, so that youth and their families can fully access the service and supports they need to obtain and maintain optimum health.

Contact: U.S. Substance Abuse and Mental Health Services Administration, One Choke Cherry Road, Rockville, MD 20857, Telephone: (877) SAMHSA-7 Secondary Telephone: (877) 726-4727 E-mail: Web Site: https://www.samhsa.gov Available from the website.

Keywords: Child health, Child welfare, Collaboration, Families, Family centered care, Health care systems, Interagency cooperation, Parent professional relations, Service coordination, Service delivery systems

Pediatrics Supporting Parents Learning Community. 2020. Core practices, strategies, and resources for supporting social emotional development in pediatric care. Boston, MA: National Institute for Children's Health Quality, 26 pp.

Annotation: This packet provides the best strategies for participating practices so pediatric providers across the country can benefit from their learning from a quality improvement framework with 18 pediatric primary care practices to test and refine strategies to improve their effectiveness in fostering patients’ social and emotional development from birth to age 3. These core practices and strategies serve as a roadmap for the participating pediatric providers and includes additional resources developed as part of this initiative or identified as useful. The document summaries strategies for each core element and lists additional resources. Sample forms are included.

Contact: National Institute for Children's Health Quality, 30 Winter Street, Sixth Floor, Boston, MA 02108, Telephone: (617) 391-2700 Secondary Telephone: (866) 787-0832 Fax: (617) 391-2701 E-mail: [email protected] Web Site: http://www.nichq.org Available from the website.

Keywords: Emotional development, Model programs, Parent professional relations, Pediatric care, Pediatrics, Quality improvement, Social development, Young children

Wright K, Massey Z. 2019. The transformative process of collaborating with parents and family members: Engagement, involvement, and partnership. Succasunna, NJ: New Jersey Parents' Caucus, 2 items.

Annotation: This resource consists of a report and a slide presentation. They cover the foundations of collaborating and creating successful partnership; key elements of successful professional-family partnerships and actionable methods to shape one's work and strategies, including preparation, communication, barriers, and benefits; and family-specific universal, selective, and intensive strategies.

Contact: New Jersey Parents' Caucus, 10 East, Suige 220-414, Succasunna, NJ 07876, Web Site: https://newjerseyparentscaucus.org/ Available from the website.

Keywords: Collaboration, Families, Parent professional relations

Association of Maternal and Child Health Programs. 2017. Pathways to family leadership within AMCHP. Washington, DC: Association of Maternal and Child Health Programs, 5 pp.

Annotation: This document defines the term "family leader" and describes the roles for family leaders in the Association for Maternal and Child Health Programs' activities. Topics include title, eligibility criteria, selection process, timeline, and duties.

Contact: Association of Maternal and Child Health Programs, 1825 K Street, N.W., Suite 250, Washington, DC 20006-1202, Telephone: (202) 775-0436 Contact Phone: (202) 775-1472 Fax: (202) 478-5120 E-mail: [email protected] Contact E-mail: [email protected] Web Site: http://www.amchp.org Available from the website.

Keywords: Collaboration, Community participation, Consultants, Employment, Families, Leadership, Mentors, Parent participation, Parent professional relations, Public private partnerships, Recruitment, Special health care services, State MCH programs, Teaching, Technical assistance, Title V programs, Training, Volunteers, Work force

American Academy of Pediatrics, Campaign for Dental Health. 2017. Pediatricians love babies and they love baby teeth!. [Elk Grove Village, IL]: American Academy of Pediatrics, Campaign for Dental Health, 3 items.

Annotation: These resources provide information to help parents of infants ask their pediatrician about how they can partner to ensure that the infant’s mouth is healthy. The resources discuss how to care for an infant’s teeth before they erupt. The resources are available in English and Spanish.

Contact: American Academy of Pediatrics, Campaign for Dental Health, 345 Park Boulevard, Itasca, IL 60143, Telephone: (847) 434-4000 Fax: (847) 434-8000 E-mail: [email protected] Web Site: http://www.ilikemyteeth.org Available from the website.

Keywords: Family centered care, Health literacy, Infants, Multimedia, Oral health, Parent professional relations, Pediatric care, Preventive health services, Primary care, Spanish language materials

Association of Maternal and Child Health Programs and Lucile Packard Foundation for Children's Health. 2016. Roles of family staff or consultants within Title V MCH and CYSHCN programs. Washington, DC: Association of Maternal and Child Health Programs, 7 pp.

Annotation: This report discusses various roles, and activities within these roles, of families who are in paid positions as staff or consultants to state Title V maternal and child health (MCH) and children and youth special health care needs (CYSHCN) programs. Topics include roles for family engagement in the Title V Block Grant guidance; depth of engagement (family roles along a continuum); roles and activities by level of engagement (input, partnership, service provision, policy-level leadership); and family engagement in Title V needs assessment activities.

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: Collaboration, Community participation, Consultants, Employment, Families, Leadership, Mentors, Needs assessment, Parent participation, Parent professional relations, Policy development, Public private partnerships, Quality assurance, Special health care services, State MCH programs, Title V programs, Training, Work force

National Center for Family / Professional Partnerships. 2015. Partnering with your child's health plan. Albuquerque, NM: National Center for Family / Professional Partnerships, 6 pp. (Tips: Caring for a child with special health care needs)

Annotation: This fact sheet provides tips for families of children with special health care needs (CSHCN) about partnering with their child's health care plan to improve health outcomes. The fact sheet explains how health plans can learn more about CSHCN from families and how family members can become key players in care coordination. Included are checklists to help families assess their health plans' policies regarding children with special needs, ensure appropriate care, provide specialty care referrals, and identify and respond to mental or behavioral health needs. Case management, conflict resolution, parental involvement, and policy development are also addressed. The fact sheet concludes with questions for families and professionals who are interested in becoming a child advocate. The fact sheet is available in English and Spanish. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Family / Professional Partnerships, Family Voices, 3701 San Mateo Boulevard, N.W., Suite 103, Albuquerque, NM 87110, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: https://familyvoices.org/lfpp/f2fs/ Available from the website.

Keywords: Advocacy, Children with special health care needs, Collaboration, Communication, Health care systems, Health insurance programs, Parent professional relations, Spanish language materials

National Center for Family / Professional Partnerships. 2014. Partnering with your child's provider. Albuquerque, NM: National Center for Family / Professional Partnerships, 6 pp. (Tips: Caring for a child with special health care needs)

Annotation: This fact sheet explains how families of children with special health care needs (CSHCN) can develop partnerships with their child's doctors and providers to improve health outcomes. It explains how to prepare for an office visit and how to communicate effectively with health providers. Included are resources to help families gather information and make decisions concerning treatment options for their child. The fact sheet also suggests ways to encourage families and providers to become involved in advocacy efforts. The fact sheet is available in English and Spanish. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Family / Professional Partnerships, Family Voices, 3701 San Mateo Boulevard, N.W., Suite 103, Albuquerque, NM 87110, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: https://familyvoices.org/lfpp/f2fs/ Available from the website.

Keywords: Children with special health care needs, Communication, Family centered care, Parent professional relations, Provider participation, Spanish language materials

Agoratus L. 2014. Affordable Care Act (ACA): Why oral health is important for children with special health care needs and how to access it. Albuquerque, NM: Family Voices, 2 pp. (ACA tip sheet)

Annotation: This tip sheet for parents of children with special health care needs provides information about the importance of good oral health care. Topics include finding oral health coverage, resources for families who do not have health insurance, and partnering with oral health professionals.

Contact: National Center for Family / Professional Partnerships, Family Voices, 3701 San Mateo Boulevard, N.W., Suite 103, Albuquerque, NM 87110, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: https://familyvoices.org/lfpp/f2fs/ Available from the website.

Keywords: Adolescents, Children, Dental care, Families, Family centered care, Health care reform, Health insurance, Oral health, Parent professional relations, Patient Protection and Affordable Care Act, Special health care needs

Park M, McHugh M. 2014. Immigrant parents and early childhood programs: Addressing barriers of literacy, culture, and systems knowledge. Washington, DC: Migration Policy Institute, 57 pp.

Annotation: This report identifies the unique needs of immigrant parents across the range of expectations for parent skill, engagement, and leadership sought by early childhood education and care programs, as well as strategies for addressing these needs. Contents include selected demographics of children of immigrants and their parents, factors jeopardizing meaningful engagement, the importance of parent engagement specific to children of immigrants, federal programming, family literacy and dual-generation strategies, and adult education. Research findings and recommendations are also presented.

Contact: Migration Policy Institute, 1400 16th Street, NW, Suite 300, Washington, DC 20036, Telephone: (202) 266-1940 Fax: (202) 266-1900 E-mail: http://www.migrationpolicy.org/contact/index.php Web Site: http://www.migrationpolicy.org Available from the website.

Keywords: Adult education, Child care, Early childhood education, Federal programs, Immigrants, Intergenerational programs, Language barriers, Limited English speakers, Literacy education, Low literacy, Parent professional relations, Parent support services, Parents, Research, Young children

Hughes D. 2014. A review of the literature pertaining to family-centered care for children with special health care needs. Palo Alto, CA: Lucile Packard Foundation for Children's Health, 32 pp.

Annotation: This document summarizes findings from a review of selected research related to family-centered care (FCC) for children with special health care needs (CSHCN). Contents include highlights from studies that examine the following components of FCC: family-provider partnerships, coordinated care, racial/ethnic and linguistic barriers, and culturally competent care. It also examines access, unmet need and satisfaction for CSHCN and outcomes of FCC and medical homes.

Contact: Lucile Packard Foundation for Children's Health, 400 Hamilton Avenue, Suite 340, Palo Alto, CA 94301, Telephone: (650) 497-8365 E-mail: [email protected] Web Site: http://www.lpfch.org Available from the website.

Keywords: Adolescents, Children, Culturally competent services, Ethnic factors, Families, Family centered care, Health care delivery, Language barriers, Literature reviews, Parent professional relations, Service coordination, Special health care needs

Nelson J, Yadrich D. 2013. Family caregivers of children with special health care needs: The need for caregiver support as truly family-centered care. Minneapolis, MN: University of Minnesota, Leadership Education in Neurodevelpomental and Related Disabilities Program, 4 pp.

Annotation: This fact sheet presents information on the importance of family caregiver support to the health and well-being of children and adolescents with special health care needs and their families throughout the life course. Topics include caregiving and the life course, parent perspectives, and recommendations for health professionals. [Funded by the Maternal and Child Health Bureau]

Contact: University of Minnesota, Leadership Education in Neurodevelpomental and Related Disabilities Program, University of Minnesota, 103 Pattee Hall, 150 Pillsbury Drive, S.E., Minneapolis, MN 55455, Telephone: (612) 624-6830 E-mail: [email protected] Web Site: http://lend.umn.edu Available from the website.

Keywords: Caregivers, Children with special health care needs, Family centered care, Family support services, Parent professional relations

Child and Adolescent Health Measurement Initiative. 2012–. Well-Visit Planner™. Portland, OR: Child and Adolescent Health Measurement Initiative, 1 v.

Annotation: This website provides tools designed to customize, tailor, and improve the quality of well-child care for infants and young children (ages 4 months to 6 years). The tool engages parents as proactive partners in planning and conducting well-child visits using a three-step process (answer a questionnaire, pick your priorities, and get your visit guide). It also has the capacity to integrate clinically-relevant information directly into the electronic health record. Contents include child and family health screeners, anticipatory guidance and family education, and parent and provider visit guides. A one-page overview and a 5-minute video tutorial are also available. The content is available in English and Spanish. [Funded by the Maternal and Child Health Bureau]

Contact: Child and Adolescent Health Measurement Initiative, The Johns Hopkins Bloomberg School of Public Health, Department of Population, Family, and Reproductive Health, 615 North Wolfe Street, Baltimore, MD 21205, E-mail: [email protected] Web Site: http://www.cahmi.org Available from the website.

Keywords: Family centered care, Infants, Medical records, Parent professional relations, Planning, Quality assurance, Spanish language materials, Well child care, Young children

Lucile Packard Foundation for Children's Health. 2012. Report: Six models for understanding how families experience the system of care for children with special health care needs—An ethnographic approach. [Palo Alto, CA]: Lucile Packard Foundation for Children's Health, 17 pp.

Annotation: This report describes six conceptual models about patterns of how families with a child with special health care needs experience the system of care. The models, which are based on ethnographic studies of eight families, are intended to help deepen understanding of these families' experiences and to provide context for the experiences of other families dealing with similar issues. The models include (1) stages of patient and family experience, (2) resource needs and availability, (3) perspectives on resources, (4) system friction, (5) family-system interaction, and (6) hope.

Contact: Lucile Packard Foundation for Children's Health, 400 Hamilton Avenue, Suite 340, Palo Alto, CA 94301, Telephone: (650) 497-8365 E-mail: [email protected] Web Site: http://www.lpfch.org Available from the website.

Keywords: Parent professional relations, Access to health care, Children with special health care needs, Chronic illnesses and disabilities, Costs, Diagnosis, Families, Health care systems, Research, Treatment

Bethell C. 2012. Patient centered quality improvement of well-child care: Final report. Portland, OR: Oregon Health and Science University, Child and Adolescent Health Measurement Initiative, 22 pp., plus appendices.

Annotation: This final report describes a research study to evaluate the feasibility, acceptability, and impact of three different patient-centered strategies for improving the quality and equity of preventive and developmental services provided to young children during well-child visits. Topics include updated anticipatory guidance for well-child visits, communications between parents and health care providers, and parents' perceptions of overall quality of healthcare visits for their children. Report contents include an introduction to research problem, a review of the literature, the study design and methods, detailed findings, discussion and interpretation of the findings, a list of products developed during the project, as well as references. Appendices provide examples and overviews of selected project elements. [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: Anticipatory guidance, Final reports, MCH research, Parent participation, Parent professional relations, Patient satisfaction, Quality assurance, Well child care

Anderson B. 2011. Promoting family-centered care for children with special health care needs. Washington, DC: Grantmakers in Health, 2 pp. (Views from the field)

Annotation: This document examines the role of family organizations in providing information and support for children with special health care needs (CSHCN), their families, and their professional partners. Specifically, the document addresses efforts to secure financing for Family-to-Family Health Information Centers (F2F HIC) to provide support, information, resources, and training to families of CSHCN and the professionals who serve them; state F2F HIC activities; and what philanthropy can offer. [Funded by the Maternal and Child Health Bureau]

Contact: Grantmakers In Health, 1100 Connecticut Avenue, N.W., Suite 1200, Washington, DC 20036-4101, Telephone: (202) 452-8331 Fax: (202) 452-8340 Web Site: http://www.gih.org Available from the website.

Keywords: Children with special health care needs, Families, Family centered care, Family resource centers, Financing, Parent professional relations, Resources for professionals

Gruttadaro D, Markey D. 2011. The family experience with primary care physicians and staff. Arlington, VA: National Alliance on Mental Illness, 14 pp.

Annotation: This report focuses on the experiences of parents and caregivers of children and adolescents living with mental illness related to discussing mental health concerns about their child with primary care physicians and staff. Topics include demographics, background information, primary care setting, initiating communication, effective communication and dialogue, and actions steps.

Contact: National Alliance on Mental Illness, 3803 N. Fairfax Drive, Suite 100, Arlington, VA 22203, Telephone: (703) 524-7600 Secondary Telephone: (800) 950-6264 Fax: (703) 524-9094 E-mail: [email protected] Web Site: http://www.nami.org Available from the website.

Keywords: Adolescent mental health, Child mental health, Communication, Mental disorders, Parent professional relations, Parents, Primary care

Healthy Mothers, Healthy Babies. 2011. Reducing effects of postpartum depression: Provider education and maternal empowerment. [Alexandria, VA]: Healthy Mothers, Healthy Babies, 1 video (ca. 50 min.).

Annotation: This archived webinar, broadcast July 13, 2011, discusses issues surrounding postpartum and perinatal depression (PPD) and the impact on the health and well-being of mothers and their infant's neurobiological development. Topics include how underreported or underdiagnosed PPD is; varying levels of severity including healthy rebound, "baby blues", diagnosed perinatal depression, postpartum bi-polar disorder, and the rare postpartum psychosis. Topics also include maternal stresses due to lacks of sleep/exhaustion, depression stigma, previous psychological or medical histories, post-traumatic stress from unexpected C-section or adverse pregnancy or birth outcomes, partner or violence abuse, and financial stresses. Social risk factors for depression such as multiple births or feeling of isolation are also discussed. Resources are discussed including model state programs, online resources, proposed legislation, and the importance of establishing local postpartum depression networks and support services.

Contact: National Healthy Mothers, Healthy Babies Coalition, 4401 Ford Avenue, Suite 300***OPERATIONS MOVED TO ZERO TO THREE*** 5/5/2015, Alexandria, VA 22302, Telephone: (703) 837-4792 Fax: (703) 664-0485 E-mail: [email protected] Web Site: http://www.hmhb.org Available from the website.

Keywords: Bonding, Early childhood development, Hotlines, Infant health, Maternal mental health, Mother child relations, Parent support services, Parenting, Perinatal care, Postnatal care, Postpartum depression, Resources for professionals

Family Voices. [2010]. Title V 5-year needs assessment. Albuquerque, NM: Family Voices, 2 pp.

Annotation: This fact sheet describes the requirement for each state to perform a needs assessment for preventive and primary care services for pregnant women, mothers, infants, children, and services for children with special health care needs. Topics also include what families can contribute to the assessment, background, content and process, analysis and findings, how states use the findings, and how families can learn about and use findings. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Block grants, Children, Children with special health care needs, Families, Federal MCH programs, Health care services delivery, Infants, Needs assessment, Parent professional relations, Pregnant women, Social Security Act, Title V, State MCH programs, State surveys

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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.