The Family Well-being Research Network (FAMNET) a collaborative project of CHDS faculty Eve Wittenberg, affiliated faculty Lisa Prosser at the University of Michigan, and Janel Hanmer at the University of Pittsburgh, announces the launch of two on-line Instrument repositories: the Family Well-being Repository and the Pediatric Quality of Life Repository. Each repository is a curated set of measurement instruments focused on a specific construct, intended to facilitate and stimulate research in these arenas. The Family Well-being Repository contains 23 outcome measures that assess well-being at the family-unit level across different dimensions. Each is described and catalogued by construct measured, disease/condition context, number of items, availability of short forms and subscales, languages, and other relevant attributes. The Pediatric Quality of Life Repository includes instruments that measure pediatric quality of life in generic as well as condition-specific contexts (e.g., pain, asthma). It currently includes 45 generic (i.e., holistic) measures, each of which is described by condition/disease context, child age range, languages, and evidence of psychometric testing (e.g., validity and reliability). Instruments can be “compared” by attributes to aid in identification of those most appropriate for a specific context.
In addition to the repositories, FAMNET has supported investigator-initiated research through Pilot Project grants and the Research Scholar Corps. Fifteen investigators’ projects have been funded since 2021, ranging from Identifying Youth Caregivers to Understanding Family Well-being in families with an individual with intellectual disability. FAMNET provided funding and mentorship for trainees and junior faculty; funding cycles have now concluded.
Funding for FAMNET is provided by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Center for Complementary and Integrative Health, and the National Institutes of Health Office of Disease Prevention.
Learn more: Access the repositories
Learn more: Read about funded projects
Related news: Learn about the Launch of FAMNET
Related news: About NIH’s network of Emotional Well-Being Networks