Special Notice: 30 Years of Milestones highlights key moments in pediatric, adolescent, and maternal AIDS (acquired immune deficiency syndrome) research. The website, produced by the National Institute of Child Health and Human Development (NICHD), highlights the history of HIV (human immunodeficiency virus) and AIDS and the role that NICHD researchers and others have played in improving the outlook for children, adolescents, women, and mothers who have or are at risk for AIDS. Visitors can view research highlights by selecting among the following time periods: 1981 to 1985, 1986 to 1990, 1991 to 1995, 1996 to 2000, and 2006 to 2011. The website is available at http://www.nichd.nih.gov/news/resources/spotlight/060311-milestones.cfm.
1. Families Share Experiences in Working with Professionals Who Serve Children with Mental Health Needs
Linking Medical Home and Children’s Mental Health: Listening to Massachusetts Families examines what families whose children have mental health needs experience in accessing and coordinating care for their children. The report was produced by the Parent-Professional Advocacy League (PPAL) in collaboration with the Central Mass Medical Home Network Initiative (CMMHNI), a project funded by the Health Resources and Services Administration, Maternal and Child Health Bureau, to improve care for children and adolescents with special health care needs within a group of primary care pediatric practices (medical homes). The report describes the challenge of accessing mental health care and coordinating it with a child's medical care, as well as the development and results of a survey conducted by PPAL and CMMHNI to better understand families' experiences. Topics include coordination, communication, and trust; accessing care; finding resources; and schools. The report is available at http://ppal.net/wp-content/uploads/2011/01/Medical-Home-Report.pdf
2. Adolescents Assess the Impact of Social Media on Their Own Well-Being
Social Media, Social Lives: How Teens View Their Digital Lives documents, on a national scale, what adolescents think about how social media use is affecting their social and emotional lives. The report was published by Common Sense Media's Program for the Study of Children and Media to provide parents, educators, health organizations, and policymakers with reliable, independent data on children's use of media and technology and the impact it has on physical, emotional, social, and intellectual development. The content of the report is based on a survey of 1,030 adolescents ages 13-17, conducted online by Knowledge Networks: A Gfk Company from February 22 through March 11, 2012. Topics include face-to-face communication, social and digital communication, text messaging, social networking, Twitter, mobile communication, social networking and social-emotional well-being, social media and relationships, online photos, hate speech online, addiction and the desire to unplug, and social networking and depression. The report is available at http://www.commonsensemedia.org/sites/default/files/research/socialmediasociallife-final-061812.pdf
3. Resources Highlight Opportunities to Support Educational Success of Pregnant and Parenting Students
A Pregnancy Test for Schools: The Impact of Education Laws on Pregnant and Parenting Students outlines the ways that federal, state, and local laws, policies, and programs can change the landscape for pregnant and parenting students and ranks how well state laws and policies address students' needs. The report, published by the National Women's Law Center, describes challenges faced by pregnant and parenting students, highlights requirements of federal laws, reviews relevant state laws and policies, and concludes with recommendations for policymakers and schools. The report also includes a toolkit for advocates and service providers who work with these students. The full report, an executive summary, and a fact sheet for schools are available from the website at http://www.nwlc.org/reports-overview/pregnancy-test-schools-impact-education-laws-pregnant-and-parenting-students
4. Authors Review Federal MCH Program Evaluations
"A positive finding of our review is that several useful evaluations of maternal and child health programs are being conducted. These evaluations give us some sense of where the programs are today, but inconclusive findings on similar outcomes suggest the need for further research and perhaps increased rigor," state the authors of an article published in the Maternal and Child Health Journal online on June 23, 2012. Understanding program outcomes and gaps in knowledge is essential to effect program improvement and progress on national strategies for addressing maternal and child health (MCH) issues. The article reviews recent evaluations of four federal programs that aim to improve the health of pregnant and postpartum women and children under age 5 with specific targets and mechanisms for improving health outcomes: Head Start; Healthy Start; Medicaid; and the Special Supplemental Nutrition Program for Women, Infants and Children (WIC).
The authors searched PubMed, PsycInfo, CINAHL, and Academic Search Complete to identify evaluation studies (research studies having a defined intervention in the context of a program and a defined outcome). Study findings were critically evaluated to determine the scope of evaluations of MCH programs and to identify findings related to program impact and opportunities for further program assessment to inform policy development. Studies were included in the review if they were published in peer-reviewed journals between January 2006 and June 2011 and assessed program impact on health status or health care outcomes. The 5-year period provided a focus on current findings that could be used for program improvement. Findings from 20 evaluation studies were reviewed.
The authors found that
"Our results highlight the difficulty of connecting specific program activities to specific outcomes in these evaluation studies," state the authors. They add, "health services researchers can draw on the increased number of publicly available databases as well as local program data systems, including health department records to bring clarity to the relationship between specific program activities and health outcomes."
Taylor YJ, Nies MA. 2012. Measuring the impact and outcomes of maternal and child health federal programs. Maternal and Child Health Journal [published online on June 23, 2012]. Abstract available at http://dx.doi.org/10.1007/s10995-012-1067-y
Readers: More information is available from the following MCH Library resources:
- Cost-Effectiveness and Cost-Benefit Analysis in MCH: Resource Brief at
- Effective Program Practices: Bibliography of Materials from MCHLine at
- Effective Community Programs: Annotated List of Organizations on Key Topics in Maternal and Child Health at
5. Article Discusses Development of a Brochure for Inviting Parents to Participate in a Newborn Screening Study
"Using IDM [informed decision making] as a foundational framework, we developed a study recruitment brochure," write the authors of an article published in the Journal of Genetic Counseling online on June 27, 2012. Fragile X syndrome (FXS) is the most common inherited form of intellectual disability. In the absence of population screening, FXS typically is not diagnosed until age 36 months or later. The authors of this article are conducting a pilot study, with the "treatment" being information parents receive about newborn screening. The authors were interested in learning about whether and why parents agree to have their child screened and the "safety" of screening, as evidenced by any "adverse events" (e.g., postpartum depression, anxiety, disrupted parent-child relationships). Using the principles of IDM, the authors designed a brochure to help women decide whether to have their child screened for FXS. As the first step in a two-stage evaluation process, this article describes the process by which the brochure was developed; summarizes findings from an independent evaluation relative to decision-aid standards; and reports the results of a simulation study with pregnant women or recent mothers. A subsequent paper will examine the effect of the brochure when implemented in a hospital-recruitment environment.
Brochure development was guided by four IDM principles: It needed to (1) promote understanding of the study, risks, and uncertainties; (2) foster consideration of preferences; (3) support participation in decision-making at a level that is desirable and personally comfortable; and (4) lead to a decision consistent with personal values. The development process resulted in a full-color brochure with photographs depicting infants and parents from a variety of ethnicities. Study participants included 118 pregnant women and recent mothers. Each woman participated in one of nine 1-hour group sessions facilitated by a member of the research team. Women were told that the goal was to understand their opinions and reactions to a brochure about a research study.
The authors found that
The authors conclude that "IDM provides a set of relevant guiding principles, because this context mimics prior applications of IDM to health care decisions where there is no right or wrong answer." They continue, "but making the information understandable and finding realistic opportunities for parents to weigh alternatives and make an informed decision will be an enormous public health challenge."
Bailey BD, Lewis MA, Harris SL, et al. 2012. Design and evaluation of a decision aid for inviting parents to participate in a Fragile X newborn screening pilot study. Journal of Genetic Counseling [published online on June 27, 2012]. Abstract available at http://dx.doi.org/10.1007/s10897-012-9511-0
Readers: More information is available from the following MCH Library resources:
- Genetics: Resource Brief at
- Newborn Screening: A Bibliography of Materials from MCHLine
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