The Harvard Family Research Project separated from the Harvard Graduate School of Education to become the Global Family Research Project as of January 1, 2017. It is no longer affiliated with Harvard University.
Volume VIII, Number 1, Spring 2002
Issue Topic: Family Support
Beyond Basic Training
From Health Consumers to Health Consumer Researchers
A grassroots network of families of children with special health care needs shares the lessons they learned about conducting research to improve the health care for their children.
Families can take leading roles in sponsoring and conducting health consumer research, with the ultimate goal of improving the U.S. health care system. This is an important message of Family Voices, a grassroots network of 40,000 families and friends of children with special health care needs. In each state, two volunteer family coordinators serve as organizers, educators, and advocates for children with special health care needs.
Family Voices and the Heller School at Brandeis University surveyed 2,220 families to fill the knowledge gap about children with special needs. While data existed about narrow constituencies of children with special heath needs, e.g. children with cerebral palsy or those receiving early intervention services, there was none about the population as a whole. Gathering this information was the first step to providing effective and comprehensive health services to all families with special health needs.
Nora Wells, Director of Research Activities at Family Voices, offers these lessons for family and community groups that wish to become involved in research:
- Recognize that data provides the key to informed action for systemic change. In order to serve the complex and diverse needs of families of children with special health needs, Family Voices realized that it was vital to gather information systematically about how families are faring, what is working for them and what is not, and what can be improved.
- Collaborate with an established research institution in a partnership based on mutual respect and equality. Both the Heller School and Family Voices understood that the other was invaluable: the Heller School for its research expertise and Family Voices for its intimate knowledge of the issues relevant to families of children with special health needs. Family Voices’ small national staff and the state-level family coordinators participated in research design, survey instrument construction, sampling, analysis, and report writing. This partnership greatly influenced the credibility of the research to policymaking audiences while remaining relevant and useful to families.
- Support families by providing timely and useful information. As a result of the survey, Family Voices published two booklets to meet families’ expressed needs for information. One booklet makes the survey results available to families in simple and clear language, so that families can learn how others are coping with similar issues and what areas of health care delivery particularly need improvement. The second booklet helps families and health plans learn about programs and policies for children with special needs in managed care. This booklet is based on a series of interviews that Family Voices coordinators conducted with 17 managed care providers in 12 states in order to understand health plan programs and policies and how plans can better serve children with special needs.
Family Voices believes that every person has the ability, right, and responsibility to speak up about services he/she needs for his/her family and to provide feedback about the adequacy of those services. When families play an active role in developing and conducting research, they enhance their capacity to advocate effectively for an improved system of services.
Flora Traub, Research Analyst, HFRP
M. Elena Lopez, Senior Consultant, HFRP
Reference
Krauss, M. W., Gulley, S., Leiter, V., Minihan, P., Sciegaj, M., Wells, N., & Anderson, B. (2000). The Family Partners Project: Report on a National Survey of the Health Care Experiences of Families of Children with Special Health Care Needs. Boston, MA: Brandeis University and Family Voices.