This article reports on a study examining perceptions of staff of state health and human service programs on the family-centered nature of services for children with genetic conditions and their families. The article provides information on the qualitative and quantitative methodologies used to obtain stakeholder input from staff in partnering organizations. Twenty programs were invited to participate in a Web-based survey that yielded a response rate of 75% (N = 15). Findings indicate that few program staff understand genetic conditions or services. Data also indicate a need to enhance family input into the service design, evaluation, and policy development processes of existing services.
Get full access to this article
View all access options for this article.
References
1.
AbramskyL., HallS., LevitanJ., & MarteauT. M. (2001). What parents are told after prenatal diagnosis of a sex chromosome abnormality: Interview and questionnaire study.British Medical Journal, 322, 463–466.
2.
AllenR. I., & PetrC. G. (1998). Rethinking family-centered practice.American Journal of Orthopsychiatry, 68, 4–15.
3.
AhmannE., & JohnsonB. (2000, January). Family-centered care: Facing the new millennium [Interview]. Pediatric Nursing [Online] 26. Retrieved March 16, 2001, from http://newfirstsearch.oclc.org.
4.
American Medical Association's Council on Ethical and Judicial Affairs. (1998). Multiplex genetic testing.The Hastings Center Report, 28(4), 15–21.
5.
BaileyD. B., McWilliamR. A., DarkesL. A., HebblerK., SimeonssonR. J., SpikerD., & WagnerM. (1998, Spring). Family outcomes in early intervention: A framework for program evaluation and efficacy research. Exceptional Children, 64, 313–328.
6.
BarrettK., RiggarT., & FlowersC. (1997). The turnover dilemma, a disease with solutions.Journal of Rehabilitation, 63, 36–42.
7.
Council of Regional Networks for Genetic Services. (1997). Guidelines for Clinical Genetic Services for the Public's Health (1st ed.). Atlanta, GA: Author.
8.
DunstC. J., IllbackR. J., & CobbC. T. (1997). Conceptual and empirical foundations of family-centered practice: Opportunities for psychological practice. In IllbackR. J. & CobbC. T. (Eds.), (pp. 75–91). Washington DC: American Psychological Association.
9.
DunstC. J., JohansonC., TrivetteC. M., & HambyD. (1991, October/November). Family-oriented early intervention policies and practices: Family-centered or not? Exceptional Children, 58, 115–126.
10.
EpsteinJ., & KlinkenbergW (2002). Collecting data via the Internet: the development and deployment of a Web-based survey.Journal of Technology in Human Services, 19, 33–47.
11.
FlowersC. P., BrayM., & AlgozzineR. F. (1999). Accessibility of special education program home pages. Journal of Special Education Technology [Online] 14(2). Retrieved February 19, 2001, from http://relayweb.hwwilsonweb.com.
12.
FreedmanT. G. (1998). Genetic susceptibility testing.Health & Social Work, 23, 214–221.
13.
GilsonS., & DepoyE (2002). Theoretical approaches to disability content in social work education.Journal of Social Work Education, 38, 153–165.
14.
HillerE., LandenburgerG., & NatowiczM. R. (1997). Public participation in medical policy-making and the status of consumer autonomy: The example of newborn-screening programs in the United States.American Journal of Public Health, 87, 1280–1288.
15.
Institute for Family-Centered Care. (1999, Spring). Resources for maternity and newborn intensive care. Resources, pp. 1-5.
16.
JohnsonB. (2000). Family-centered care: Four decades of progress.The Journal of Collaborative Family Healthcare, 18, 137–147.
17.
JohnsonB. H. (1999). Family focus: When hospitals put the emphasis on patients and families, everyone benefits.Trustee, 52(3), 12–15.
18.
KaranjawalaZ., & CollinsF (1998). Genetics in the context of medical practice.The Journal of the American Medical Association, 280, 1533–1534.
19.
KingG. A., RosenbaumP. L., & KingS. M. (1997). Evaluating familycentered service using a measure of parents’ perceptions.Child: Care, Health, and Development, 23, 47–62.
20.
KhouryM. J. (1996). From genes to public health: The applications of genetic technology in disease prevention.American Journal of Public Health, 86, 1717–1722.
21.
KirbyR. (2000). Analytical resources for assessment of clinical genetics services in public health: Current status and future prospects.Assessment of Clinical Genetics Services, 61(9), 9–16.
Maternal & Child Health Bureau, U.S. Department of Health and Human Services. (2000, September). Integration of science and technology into public health. Health Services Administration, Invitational Meeting, Washington, D.C.
24.
MurphyD., LeeI., TurnbullA., & TurnbullV. (1995). The familycentered program rating scale: An instrument for program evaluation and change.Journal of Early Intervention, 19, 24–42.
25.
PardeckJ. (2001). A critical analysis of the social work literature on disabilities.Journal of Social Work in Disability & Rehabilitation, 1, 1–3.
26.
PattersonJ. M., GarwickA.W., BennettF. C., & BlumR. (1997, December). Social support in families of children with chronic conditions: Supportive and non-supportive behaviors. Journal of Developmental and Behavioral Pediatrics, 18, 383–391.
27.
PooleD. (1997). Building community capacity to promote social and public health: Challenges for universities.Health & Social Work, 22, 163–169.
28.
PowellJ. Y. (1996). A schema for family-centered practice.Families in Society, 77, 446–448.
29.
RankM. (1992). The blending of qualitative and quantitative methods in understanding childbearing among welfare recipients. In GilgunJ., DalyK., & HandelG. (Eds.), Qualitative methods in family research (pp. 281–300). Thousand Oaks, CA: Sage.
30.
RauchJ. (1999). Genetic services for foster children: An unmet need?Child Welfare, 69, 341–355.
31.
RubinA., & BabbieE (2001). Research methods for social work (4th ed.). Pacific Grove, CA: Brooks/Cole.
32.
SchoechD. (2002). Technology challenges facing social work. Electronic Journal of Social Work, 1. Available: http://www.ejsw.net/.
33.
SchroederL. O. (1991). Social work and genetic services: Legal roadblocks on the road less traveled.International Social Work, 34, 97–108.
34.
SelberK., & StreeterC (2000). A customer-oriented model for managing quality in human services.Administration in Social Work, 24, 1–14.
35.
TijerinaM., SelberK., & Rondero HernandezV. (2003). Perceptions of the Texas genetics services system and genetic information needs of health care providers: A Web-based survey. Texas Journal of Rural Health, 21 (4), 35-43.
36.
TrivetteC. M., DunstC. J., & HambyD.W. (1996). Factors associated with perceived control appraisals in a family-centered early intervention program.Journal of Early Intervention, 20, 165–170.
37.
UrkenA. B. (1999). Taking assessment online. ASEE Prism [Online] 92(2). Retrieved on February 7, 2001 from http://www.asee.org/prism.
38.
WalterU., & PetrC (2000). A template for family-centered interagency collaboration.Families in Society, 81, 494–503.
39.
WertzD., & GreggR (2000). Genetics services in a social, ethical and policy context: A collaboration between consumers and providers.Journal of Medical Ethics, 26, 261–265.
40.
YunG., & TrumboC (2000). Comparative responses to a survey executed by post, e-mail, & Web form.Journal of Computer- Mediated Communication, 6, 1–25.
