Making waves: systems change on behalf of youth with HIV/AIDS

Botwinick, Geri; Bell, Douglas; Johnson, Robert L; Sell, Randall L; Friedman, Lawrence B; Dodds, Sally; Shaw, Kimberly; Martinez, Jaime; Siciliano, Carl; Walker, Lynn E; Sotheran, Jo L

doi:10.1016/S1054-139X(03)00156-3

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Volume 33, Issue 2, Supplement , Pages 46-54, August 2003

Making waves: systems change on behalf of youth with HIV/AIDS

Geri Botwinick, M.P.A.
- Mailman Segal Institute for Childhood Studies, Nova Southeastern University, Ft. Lauderdale, Florida, USA (K.S.)
Douglas Bell, Ph.D.
- Division of Adolescent Medicine, Stroger Hospital of Cook County, Chicago, Illinois, USA (D.B., J.M.)
Robert L Johnson, M.D.
- Department of Pediatrics, Division of Adolescent and Young Adult Medicine, UMDNJ—New Jersey Medical School, Newark, New Jersey, USA (R.L.J., G.B.)
- Address correspondence to: Robert L. Johnson, M.D., F.A.A.P., Professor and Interim Chair of Pediatrics, Department of Pediatrics, UMDNJ–New Jersey Medical School, 185 South Orange Avenue, Newark, NJ 07101, USA.
Randall L Sell, Sc.D.
- Mailman School of Public Health, Columbia University, New York, New York, USA (R.L.S., J.L.S.)
Lawrence B Friedman, M.D.
- Department of Pediatrics, Division of Adolescent Medicine, University of Miami School of Medicine, Miami, Florida, USA (L.B.F.)
Sally Dodds, Ph.D., L.C.S.W.
- Department of Psychiatry and Behavioral Sciences, Women’s Mental Health Programs, University of Miami, Miami, Florida, USA (S.D.)
Kimberly Shaw, Ph.D.
- Mailman Segal Institute for Childhood Studies, Nova Southeastern University, Ft. Lauderdale, Florida, USA (K.S.)
Jaime Martinez, M.D.
- Division of Adolescent Medicine, Stroger Hospital of Cook County, Chicago, Illinois, USA (D.B., J.M.)
Carl Siciliano
- SafeSpace, New York, New York, USA (C.S., L.E.W.)
Lynn E Walker, M.S.
- SafeSpace, New York, New York, USA (C.S., L.E.W.)
Jo L Sotheran, Ph.D.
- Mailman School of Public Health, Columbia University, New York, New York, USA (R.L.S., J.L.S.)

Accepted 29 April 2003.

Abstract

Purpose

To document the effects of five Special Projects of National Significance (SPNS), funded by the Health Resources and Services Administration (HRSA), on HIV care, related service systems, policy, planning, and funding for youth with HIV/AIDS.

Methods

Literature on services and systems integration and technology transfer is used as a conceptual framework for the examination of HIV-informed, youth-specific changes at the local, state, and national levels. The Principal Investigators for each project and/or the Project Evaluators were interviewed several times to capture “snapshots” of evolving results from the Projects’ varied activities in New York City; Newark, New Jersey; Chicago; and Miami. Some changes were consciously targeted, and others occurred serendipitously. This work covers the funding period from 1996 through 2000.

Results and conclusions

There were many “ripple” effects that emanated from these Projects’ presence and activities. Important lessons were learned about why systems change is necessary to effectively serve youth with HIV, how to make constructive changes happen, and how to sustain changes once they are achieved. Successful strategies included, but were not limited to, consensus-building among stakeholders, participatory planning and decision-making, collaborative referral and linkage agreements, staff sharing, co-locating services, providing technical assistance, consultation, cross-training, and engaging consumers as partners in communicating new technologies and in advocating for change.

Keywords: Adolescent HIV care, HIV/AIDS, Systems change, Systems advocacy