The concept of family quality of life has emerged as an important outcome of service provision for children with disabilities and their families. In this article, we report families' perceptions of their advocacy efforts and the impact of these efforts on their family quality of life. A total of 104 family respondents participated in focus groups and individual interviews. Through qualitative analysis we identified two themes related to parents' perceptions about their advocacy actions: Advocacy as an obligation and advocacy as a means to improve services. Three themes also emerged regarding parents' perceptions of the impact of their advocacy actions: Advocacy enhances coping, advocacy involves struggle, and advocacy causes stress. We discuss issues related to these themes as well as two factors (the quality of their partnerships and of their child's education) that may mediate the impacts of parental advocacy. We also discuss the implications for practice and provide tips for educators to improve their practices to better support families in their advocacy efforts.
AllenR. I.PetrC. G. (1996). Toward developing standards and measurements for family-centered practice in family support programs. In SingerG. H. S.PowersL. E.OlsonA. L. (Eds.), Redefining family support: Innovations in public-private partnerships (pp. 57–86). Baltimore: Paul H. Brookes Publishing.
2.
AnfaraV. A.BrownK. M.Jr.MangioneT. L. (2002). Qualitative analysis on stage: Making the research process more public. Educational Researcher, 37(1), 28–38.
3.
BaileyD. B.McWilliamP. J. (1993). The search for quality indicators. In McWilliamP. J.BaileyD. B. (Eds.), Working together with children and families (pp. 3–20). Baltimore: Paul H. Brookes.
4.
BaileyD. B.McWilliamR. A.DarkesL. A.HebbelerK.SimeonssonR. J.SpikerD. (1998). Family outcomes in early intervention: A framework for program evaluation and efficacy research. Exceptional Children, 64(3), 313–328.
5.
Blue-BanningM.SummersJ. A.FranklandH. C.NelsonL. L.BeegleG. P. (2004). Dimensions of family and professional partnerships: Constructive guidelines for collaboration. Exceptional Children, 70(2), 167–184.
6.
BrothersonM. J.GoldsteinB. L. (1992). Quality design of focus groups in early childhood special education research. Journal of Early Intervention, 16(4), 334–342.
7.
CreswellJ. W., (2002). Educational research: Planning, conducting, and evaluating quantitative and qualitative research. Upper Saddle River, NJ: Merrill.
8.
Cunconan-LahrR.BrothersonM. J. (1996). Advocacy in disability policy: Parents and consumers as advocates. Mental Retardation, 34, 352–358.
9.
DunstC. G.BruderM. B. (2002). Valued outcomes of service coordination, early intervention, and natural environment. Exceptional Children, 68(3), 361–375.
10.
FiedlerC. R., (2000). Making a difference: Advocacy competencies for special education professionals. Boston: Allyn and Bacon.
11.
FriesenB. J.HuffB. (1990). Parents and professionals of advocacy partners. Preventing School Failure, 34(3), 31–35.
12.
HarryB.AllenN.McLaughlinM. (1995). Communication versus compliance: African-American parents' involvement in special education. Exceptional Children, 61(4), 364–377.
13.
KalyanpurM.HarryB. (1999). Culture in special education: Building reciprocal family-professional relationships. Baltimore: Paul H. Brookes.
14.
KalyanpurK.HarryB.SkrticT. (2000). Equity and advocacy expectations of culturally diverse families' participation in special education. International Journal of Disability, Development and Education, 47(2), 119–136.
15.
KruegerR. A.CaseyM. A. (2000). Focus groups: A practical guide for applied research (3rd ed.) Thousand Oaks, CA: Sage Publications, Inc.
16.
LincolnY. S., (1995). Emerging criteria for quality in qualitative and interpretive research. Qualitative Inquiry, 1(3), 275–289.
17.
LincolnY. S.GubaE. G. (1985). Naturalistic inquiry. Newbury Park, CA: Sage Publications, Inc.
18.
McWilliamR. A.LangL.VandiviereP.AngellR.CollinsL.UnderdownG. (1995). Satisfaction and struggles: Family perceptions of early intervention services. Journal of Early Intervention, 19(1), 43–60.
19.
MilesM. B.HubermanA. M. (1994). Qualitative data analysis: An expanded sourcebook (vol. 2). Thousand Oaks, CA: Sage.
20.
MlawerM. A., (1993). Who should fight? Parents and the advocacy expectations. Journal of Disability Policy Studies, 4(1), 105–115.
21.
NachshenJ. S.JamiesonJ. (2000). Advocacy, stress, and quality of life in parents of children with developmental disabilities. Developmental Disabilities Bulletin, 28, 39–55.
22.
National Research Council. (2002). Minority students in special and gifted education. Washington, DC: National Academy Press.
23.
PattonM. Q., (2002). Qualitative evaluation and research methods (3rd ed.). Newbury Park, CA: Sage Publications.
24.
PostonD. J.TurnbullA. P.The role of spirituality and religion in family quality of life. Education and Training in Mental Retardation and Developmental Disabilities (in press).
25.
PostonD.TurnbullA. P.ParkJ.MannanH.MarquisJ.WangM. (2003). A qualitative study on family quality of life. Mental Retardation, 41(5), 313–328.
26.
President's Commission on Excellence in Special Education. (2002). A new era: Revitalizing special education for children and their families. Washington, DC: ED Pubs, Education Publications Center, U.S. Department of Education.
27.
Public Agenda. (2002). When it's your own child: A report on special education from the families who use it. New York: Public Agenda.
28.
RubinH. J.RubinI. S. (1995). Qualitative interviewing: The art of hearing data. Thousand Oaks, CA: Sage Publications, Inc.
29.
SantelliB.SingerG. H. S.DiVenereN.GinsbergC.PowersL. E. (1998). Participatory action research: Reflections on critical incidents in a PAR project. Journal of the Association of Persons with Severe Handicaps, 23(3), 211–222.
30.
TurnbullA. P.FriesenB. J.RamirezC. (1998). Participatory action research as a model for conducting family research. Journal for the Association of Persons with Severe Handicaps, 23(3), 178–188.
31.
TurnbullA. P.TurbivilleV.TurnbullH. R. (2000). Evolution of family-professional partnership models: Collective empowerment as the model for the early 21st century. In ShonkoffJ. P.MeiselsS. L. (Eds.), The handbook of early childhood intervention (2nd ed.). New York: Cambridge University Press.
32.
TurnbullA. P.TurnbullH. R. (2002). From the old to the new paradigm of disability and families: Research to enhance family quality of life outcomes. In PaulJ. L.LavelyC. D.Cranston-GingrasTaylorE. L. (Ed.), Rethinking professional issues in special education. Westport, CT: Ablex Publishing.
33.
TurnbullA. P.TurnbullH. R. (in press). “Leaving no family behind”: National goals, current knowledge, and future research. In LakinC. (Ed.), Keeping the promises: National goals, state-of-knowledge, and a national agenda for research on intellectual and developmental disabilities. Washington, DC: American Association on Mental Retardation.
34.
TurnbullA.TurnbullH.R.AgostaJ.ErwinE.FujiuraG.SingerG.SoodakL. (2003). Family life: Leave no family behind. In LakinC. (Ed.), Keeping the promises: Findings and recommendations of invitational conference on national goals, state of knowledge and research agenda for persons with intellectual and developmental disabilities. Washington, DC: The Arc and AAMR.
35.
TurnbullH. R.TurnbullA. P. (1996). The synchrony of stakeholders: Lessons from the disability rights movement. In KaganS. L.CohenN. E. (Eds.), Reinventing early care and education: A vision for a quality system. San Francisco: Jossey Bass.
36.
TurnbullH. R.TurnbullA. P. (2000). Free appropriate public education: Law and the education of children with disabilities (6th ed.). Denver, CO: Love.
37.
TurnbullH. R.TurnbullA. P.WheatM. (1982). Assumptions concerning parent involvement: A legislative history. Exceptional Education Quarterly, 3(2), 1–8.
38.
ZirpoliT. J.WieckC.HancoxD.SkarnulisE. R. (1994). Partners in policymaking: The first five years. Mental Retardation, 32(6), 422–425.
