A research strategy for the evaluation of service coordination in family-centered childhood disability services is proposed. The strategy is consistent with Donabedian's classic framework for applied research in health care. Emphasis is given to process and outcome indicators that offer the parent or caregiver perspective on the quality of the service. The intent is to offer a parsimonious paradigm that will facilitate the operationalization of basic components of family-centered service coordination. Further, it is hoped that the proposed paradigm will serve to advance discussion of important themes in programs of professional training of service coordinators in childhood disability services.
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References
1.
AbidinR. R. (1995). Parenting stress index: Professional manual (3rd ed.). Lutz, FL: Psychological Assessment Resources.
2.
AchenbachT. M., & EdelbrockC. S. (1991). Manual for the child behavior checklist and revised child behavior profile. Burlington: University of Vermont.
3.
AllenR. I., & PetrC. G. (1996). Towards developing standards and measurements for family-centered practice in family support programs. In SingerG., PowersL., & OlsonA. (Eds.), Family support policy and America's caregiving families: Innovations in public private partnerships (pp. 57–86). Baltimore, MD: Brookes.
4.
AllenR. I., PetrC. G., & BrownB. F. C. (1995). Family-centered behavior scale and user's manual. Lawrence: University of Kansas, Beach Center on Families and Disability.
5.
BaileyD. B.Jr. & BlascoP. M. (1990). Parents’ perspectives on a written survey of family needs.Journal of Early Intervention, 14, 196–203.
6.
BaileyD. B., McWilliamR. A., DarkesL. A., HebbelerK., SimeonssonR. J., SpikerD., & WagnerM. (1998). Family outcomes in early intervention: A framework for program evaluation and efficacy research.Exceptional Children, 64, 313–328.
7.
BaileyD. B.Jr. & SimeonssonR. J. (1988). Assessing needs of families with handicapped infants.Journal of Special Education, 22, 117–127.
8.
BeckmanP. J., NewcombS., FrankN., & BrownL. (1996). Evolution of working relationships with families. In BeckmanP. J. (Ed.), Strategies for working with families of young children with disabilities (pp. 17–30). Baltimore, MD: Brookes.
9.
CairesK. B., & WeilM. (1985). Developmentally disabled persons and their families. In WeilM., KarlsJ. M., & Associates (Eds.), Case management in human service practice (pp. 233–274). San Francisco: Jossey-Bass.
10.
CohenS., UnderwoodL. G., & GottliebB. H. (Eds.). (2000). Social support measurement and intervention: A guide for health and social scientists.Oxford, UK: Oxford University Press.
11.
CoxK. (2005). Examining the role of social network intervention as an integral component of community-based, family-focused practice.Journal of Child & Family Studies, 14, 443–454.
12.
DaleN. (1996). Working with families of children with special needs: Partnership and practice. London: Routledge.
13.
DempseyI. (1995). The Enabling Practices Scale: The development of an assessment instrument for disability services.Australia & New Zealand Journal of Developmental Disabilities, 20, 67–73.
14.
DinnebeilL. A., HaleL. M., & RuleS. (1996). A qualitative analysis of parents’ and service coordinators’ descriptions of variables that influence collaborative relationships.Topics in Early Childhood Special Education, 19, 322–347.
15.
DonabedianA. (1966). Evaluating the quality of medical care.Milbank Memorial Fund Quarterly, 44, 166–206.
16.
DonabedianA. (1980). The definition of quality and approaches to its assessment. Ann Arbor, MI: Health Administration Press.
17.
DonabedianA. (1982). The criteria and standards of quality. Ann Arbor, MI: Health Administration Press.
18.
DonabedianA. (2003). An introduction to quality assurance in health care. Oxford, UK: Oxford University Press.
19.
DunstC. J. (1997). Conceptual and empirical foundations of familycentered practice. In IllbackR., CobbC., & JosephH.Jr. (Eds.), Integrated services for children and families: Opportunities for psychological practice (pp. 75–91). Washington, DC: American Psychological Association.
20.
DunstC. J., BoydK., TrivetteC. M., & HambyD.W. (2002). Familyoriented models and professional helpgiving practices.Family Relations, 51, 221–229.
21.
DunstC. J., TrivetteC. M., & DealA. G. (Eds.). (1988). Enabling & empowering families: Principles & guidelines for practice. Cambridge, MA: Brookline Books.
22.
DunstC. J., TrivetteC. M., & DealA. G. (Eds.). (1994). Supporting and strengthening families. Cambridge, MA: Brookline Books.
23.
DunstC. J., TrivetteC. M., & HambyD.W. (1994). Measuring social support in families with young children with disabilities. In DunstC. J., TrivetteC. M., & DealA. G. (Eds.), Supporting and strengthening families (pp. 152–160). Cambridge, MA: Brookline Books.
24.
DunstC. J., TrivetteC. M., & HambyD.W. (1996). Measuring the helpgiving practices of human services program practitioners.Human Relations, 49, 815–835.
25.
DuwaS. M., WellsC., & LalindeP. (1993). Creating family-centered programs and policies. In BryantD. M. & GrahamM. A. (Eds.), Implementing early intervention: From research to effective practice (pp. 92–123). New York: Guilford Press.
26.
Early Childhood Outcomes Center. (2004). Considerations related to developing a system for measuring outcomes for young children with disabilities and their families. Retrieved August 19, 2005, from http://www.fpg.unc.edu/∼eco.
27.
EppsS., & JacksonB. J. (2000). Empowered families, successful children: Early intervention programs that work. Washington, DC: American Psychological Association.
28.
FriesenB. J., & BriggsH. E. (1995). The organization and structure of service coordination mechanisms. In FriesenB. J. & PoertnerJ. (Eds.), From case management to service coordination for children with emotional, behavioral, or mental disorders: Building on family strengths (pp. 63–94). Baltimore, MD: Paul H. Brookes.
29.
FriesenB. J., & PoertnerJ. (Eds.). (1995). From case management to service coordination for children with emotional, behavioral, or mental disorders: Building on family strengths. Baltimore, MD: Paul H. Brookes.
30.
GrecoV., & SloperP (2004). Care coordination and key worker schemes for disabled children: Results of a UK-wide survey.Child: Care, Health & Development, 30, 13–20.
31.
GuralnickM. J. (2000). Early childhood intervention: Evolution of a system.Focus on Autism & Other Developmental Disabilities, 15, 68–80.
32.
HepworthD. H., RooneyR. H., & LarsenJ. A. (1997). Direct social work practice: Theory and skills (5th ed.). Pacific Grove, CA: Brooks/Cole.
33.
IllbackR., & NeillT. K. (1995). Service coordination in mental health systems for children, youth and families: Progress, problems, prospects.Journal of Mental Health Administration, 22, 17–28.
34.
JohnsonB. H. (1990). The changing role of families in health care.Children's Health Care, 19, 234–241.
35.
KingG., RosenbaumP., & KingS. (1997). Evaluating family-centered service using a measure of parents’ perceptions.Child: Care, Health and Development, 23, 47–62.
36.
KingS., KingG., & RosenbaumP. (2004). Evaluating health service delivery to children with chronic conditions and their families: Development of a refined measure of processes of care (MPOC-20).Children's Health Care, 33, 35–57.
37.
KingS., RosenbaumP., & KingG. (1995). The measure of processes of care (MPOC): A means to assess family-centered behaviors of health care providers. Hamilton, Ontario, Canada: McMaster University and Chedoke-McMaster Hospitals, Neurodevelopmental Clinical Research Unit.
38.
KingS., RosenbaumP., & KingG. (1996). Parents’ perceptions of caregiving: Development and validation of a measure of processes.Developmental Medicine and Child Neurology, 38, 757–772.
39.
KorenP. E., DeChilloN., & FriesenB. J. (1992). Measuring empowerment in families whose children have emotional difficulties: A brief questionnaire.Rehabilitation Psychology, 37, 305–321.
40.
KoroloffN. M., & FriesenB. J. (1997). Challenges in conducting familycentered mental health services research.Journal of Emotional and Behavioral Disorders, 5, 130–137.
41.
KraussM.W. (2000). Family assessment within early intervention programs. In ShonkoffJ. P. & MeiselsS. J. (Eds.), Handbook of early childhood intervention (2nd ed., pp. 290–308). Cambridge, UK: Cambridge University Press.
42.
LabordeP. R., & SeligmanM. (1991). Counseling parents with children with disabilities. In SeligmanM. (Ed.), The family with a handicapped child (2nd ed., pp. 337–369). Boston: Allyn & Bacon.
43.
MahoneyG., & O'SullivanP. (1992). The family environments of children with disabilities: Diverse but not so different.Topics in Early Childhood Education, 12, 386–403.
44.
MahoneyG., O'SullivanP., & DennebaumJ. (1990). A national study of mothers’ perceptions of family focused intervention.Journal of Early Intervention, 14, 133–146.
45.
MahoneyG., O'sullivanP., & RobinsonC. (1992). Perceptions of pediatricians’ helpfulness: A national study of mothers of young handicapped children.Developmental Medicine & Child Neurology, 34, 1064–1071.
46.
McWilliamR. A., FergusonA., HarbinG. L., PorterP., MunnD., & VandiviereP. (1998). The family-centeredness of individualized family service plans.Topics in Early Childhood Special Education, 18, 69–82.
47.
MitchellW., & SloperP (2002). Information that informs rather than alienates families with disabled children: Developing a model of good practice.Health and Social Care in the Community, 10, 74–81.
48.
MooreS. (1992). Case management and the integration of services: How service delivery systems shape case management.Social Work, 37, 418–423.
49.
Pit-ten CateI. M., KennedyC., & StevensonJ. (2002). Disability and quality of life in spina bifida and hydrocephalus.Developmental Medicine & Child Neurology, 44, 317–322.
50.
ProcidanoM. E., & HellerK. (1983). Measures of perceived social support from friends and from family: Three validation studies.American Journal of Community Psychology, 11, 1–24.
51.
Research and Training Center in Service Coordination. (2002). Briefing book. Retrieved September 15, 2005 from http://www.uconnucedd.org.
52.
RobertsR. N., RuleS., & InnocentiM. S. (1998). Strengthening the family-professional partnership in services for young children. Baltimore, MD: Brookes.
53.
RosenbaumP., KingS., LawM., KingG., & EvansJ. (1998). Familycentered service: A conceptual framework and research review.Physical and Occupational Therapy in Pediatrics, 18, 1–20.
54.
RothmanJ. (1991). A model of case management: Toward empirically based practice.Social Work, 36, 520–528.
55.
ScholzU., DoñaB. G., SudS., & SchwarzerR. (2002). Is general selfefficacy a universal construct?European Journal of Psychological Assessment, 18, 242–251.
56.
SeligmanM., & DarlingR. B. (1997). Ordinary families, special children: A systems approach to childhood disability (2nd ed.). New York: Guilford Press.
57.
ShieldsG., SchondelC., BarnhartL., FitzpatrickV., SidellN., AdamsP., . (1995). Social work in pediatric oncology: A family needs assessment.Social Work in Health Care, 21, 39–54.
58.
SinghN. N., & CurtisW. J. (1995). Psychometric analysis of the Family Empowerment Scale.Journal of Emotional and Behavioral Disorders, 3, 85–92.
StepanekJ. S., NewcombS., & KettlerK. (1996). Coordinating services and identifying family priorities, resources, and concerns. In BeckmanP. J. (Ed.), Strategies for working with families of young children with disabilities (pp. 69–89). Baltimore, MD: Brookes.
61.
StroulB. A. (1995). Case management in a system of care. In FriesenB. J. & PoertnerJ. (Eds.), From case management to service coordination for children with emotional, behavioral, or mental disorders: Building on family strengths (pp. 3–25). Baltimore, MD: Paul H. Brookes.
62.
TruteB. (1990). Child and parent predictors of family adjustment in households containing young developmentally disabled children.Family Relations, 39, 292–297.
63.
TruteB., & Hiebert-MurphyD. (2005). Predicting family adjustment and parenting stress in childhood disability services using brief assessment tools.Journal of Intellectual & Developmental Disability, 30, 217–225.
64.
TruteB., & Hiebert-Murphy, D. (in press). The implications of “working alliance” for the measurement and evaluation of family-centered practice in childhood disability services. Infants & Young Children.
65.
TurnbullA. P., & TurnbullH. R. (1985). Parents speak out: Then and now.Columbus, OH: Charles E. Merrill.
66.
UpshurC. C. (1988). Measuring parent outcomes in family program evaluation. In WeissH. & JacobsF. (Eds.), Evaluating family programs (pp. 131–152). New York: Aldine.
67.
WestlingD. L. (1996). What do parents of children with moderate and severe mental disabilities want?Education & Training in Mental Retardation & Developmental Disabilities, 31, 86–114.
