Family Involvement in Health Care Research: The "Building on Family Strengths" Case Study

Families, Systems and Health

Volumn 25, Issue 3, 2007, Pages 307-322

  Uding, Nancy ^a   Sety, Megan ^b   Kieckhefer, Gail M ^c  

^a Landstuhl Regional Medical Center   (United States)

^b Environmental Health Services Division   (United States)

^c UNIVERSITY OF WASHINGTON   (United States)

Author keywords

children with special care needs; families; family centered care; participatory research

Indexed keywords

ARTICLE; CASE STUDY; CHILD CARE; CHILD PARENT RELATION; FAMILY ATTITUDE; FAMILY CENTERED CARE; FAMILY COUNSELING; FAMILY HEALTH; FAMILY LIFE; HEALTH CARE; HEALTH PROGRAM; HUMAN;

EID: 36148996870     PISSN: 10917527     EISSN: None     Source Type: Journal    
DOI: 10.1037/1091-7527.25.3.307     Document Type: Article

References (36)

1. American Academy of Pediatrics Committee on Hospital Care. Family-centered care and the pediatrician's role. Pediatrics 112 3 (2003) 691-697
2. American Hospital Association. Strategies for leadership; Advancing the practice of patient- and family-centered care; A resource guide for hospital senior leaders, medical staff and governing boards (2005), American Hospital Association, Washington, DC
3. Barlow J.H., and Ellard D.R. Psycho-educational interventions for children with chronic disease, parents and siblings: An overview of the research evidence base. Child: Care, Heatlh & Development 30 6 (2004) 637-645
4. Blaylock G., Ahmann E., and Johnson B.H. Creating patient and family faculty programs (2002), Institute for Family-Centered Care, Bethesda, MD
5. Bruyere S.M. Participatory action research- Overview and implications for family members of persons with disabilities. Journal of Vocational Rehabilitation 3 2 (1993) 62-68
6. Center for Mental Health Services. What is the Comprehensive Community Mental Health Services Program for Children and Their Families? (2004). http://www.mentalhealth.samhsa.gov/publications/allpubs/CA-0013/default. asp Retrieved August 4, 2006, from http://www.mentalhealth.samhsa.gov/publications/allpubs/CA-0013/default. asp
7. Chernoff R.G., Ireys H.T., DeVet K.A., and Kim Y.J. A randomized, controlled trial of a community-based support program for families of children with chronic illnesses: Pediatric outcomes. Archives of Pediatric & Adolescent Medicine 156 6 (2002) 533-539
8. Child and Adolescent Health Measurement Initiative. (2005). 2000-2001 National Survey of Children with Special Health Care Needs, Data Resource Center on Child and Adolescent Health website. Retrieved September 6, 2006, from http://cshcndata.org/Content/Default.aspx
9. Conway J., Johnson B., Edgman-Levitan S., Schlucter J., Ford D., Sodomka P., et al. Partnering with patients, and families to design a patient- and family-centered health care system: A roadmap for the future (2006), Institute for Family-Centered Care, Bethesda, MD
10. Doherty W.J., and Mendenhall T.J. Citizen Health Care: A model for engaging patients, families, and communities as coproducers of health. Families, Systems, & Health 24 3 (2006) 251-263
11. Hall S. An exploration of parental perception of the nature and level of support needed to care for their child with special needs. Journal of Advanced Nursing 24 3 (1996) 512-521
12. Institute of Medicine. Crossing the quality chasm: A new health system for the 21st century (2001), National Academy Press, Washington, DC
13. Ireys H.T., and Perry J.J. Development and evaluation of a satisfaction scale for parents of children with special health care needs. Pediatrics 104 5 (1999) 1182-1191
14. Israel B.A., Schulz A.J., Parker E.A., and Becker A.B. Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health 19 (1998) 173-202
15. James L., and Johnson B. The needs of parents of pediatric oncology patients during the palliative care phase. Journal of Pediatric Oncology Nursing 14 2 (1997) 83-95
16. Jeppson E.S., and Thomas J. Essential allies: Families as advisors (1995), Institute for Family-Centered Care, Bethesda, MD
17. Jinvanjee, P., Schutte, K., Robinson, A., & Koroloff, N. (2004). Family involvement in evaluation: Evaluator perspectives. Paper presented at the A System of Care for Children's Mental Health: Expanding the Resource Base, Tampa, FL.
18. Johnson B.H. Family-centered care: Four decades of progress. Families, Systems, & Health 18 (2000) 137-155
19. Kieckhefer G.M., and Ratcliffe M. What parents of children with asthma tell us. Journal of Pediatric Health Care 14 3 (2000) 122-126
20. Kieckhefer G.M., and Trahms C.M. Supporting development of children with chronic conditions: From compliance toward shared management. Pediatric Nursing 26 4 (2000) 354-363
21. Lewandowski L.A., and Tesler M.D. Family-centered care: Putting it into action: SPN/ANA guide to family-centered care (2003), American Nurses Association, Washington, DC
22. Maternal and Child Health Bureau. (2005). Definition of family-centered care, Principles of family-centered care, Role of cultural competence in family-centered care, definition of cultural/linguistic competence, principles of cultural competence. Retrieved June 7, 2006, from http://www.mchb.hrsa.gov/ training/gl_familycenteredcare.asp
23. Mayer M.L., Skinner A.C., and Slifkin R.T. Unmet need for routine and specialty care: Data from the National Survey of Children with Special Health Care Needs. Pediatrics 113 2 (2004) e109-e115
24. McTaggart R. Principals for participatory action research. Adult Education Quarterly 41 3 (1991) 168-187
25. Mendenhall T.J., and Doherty W.J. Action research methods in family therapy, in Sprenkle, DH, & Piercy, FP (Eds.). Research methods in family therapy (2005), Guilford Press, New York, NY
26. Ray L.D. Parenting and childhood chronicity: Making visible the invisible work. Journal of Pediatric Nursing 17 6 (2002) 424-438
27. Santelli B., Markey U., Johnson A., and Turnbull A.J. The evolution of an unlikely partnership between researchers and culturally diverse families: Lessons learned. The Association for Persons with Severe Handicaps Newsletter (TASH) (2001) 21-25
28. Santelli B., Singer G.H.S., DiVenere N., Ginsberg C., and Powers L.E. Participatory action research: Reflections on critical incidents in a PAR project. Journal of the Association for Persons with Severe Handicaps 23 3 (1998) 211-222
29. Snowden C., Elbourne D., and Garcia J. Zelen randomization: Attitudes of parents participating in a neonatal clinical trial. Controlled Clinical Trials 20 (1998) 149-171
30. Thomas J., and Jeppson E.S. Words of advice: A guidebook for families serving as advisors (1997), Institute for Family-Centered Care, Bethesda, MD
31. Turnbull A.P., Friesen B.J., and Ramirez C. Participatory action research as a model for conducting family research. Journal of the Association for Persons with Severe Handicaps 23 3 (1998) 178-188
32. Vander Stoep A., Williams M., Jones R., Green L., and Trupin E. Families as full research partners: What's in it for us?. Journal of Behavioral Health Services & Research 26 (1999) 329-344
33. Walker D.K., Epstein S.G., Taylor A.B., Crocker A.C., and Tuttle G.A. Perceived needs of families with children who have chronic health conditions. Child Health Care 18 4 (1989) 196-201
34. Wallerstein N., and Duran B. The conceptual, historical, and practice roots of community based participatory research and related participatory traditions. In: Minkler M., and Wallerstein N. (Eds). Community-based participatory research for health (2003), Jossey-Bass, San Francisco, CA
35. Wharton R.H., Levine K.R., Buka S., and Emanuel L. Advance care planning for children with special health care needs: A survey of parental attitudes. Pediatrics 97 5 (1996) 682-687
36. Wise P.H. The transformation of child health in the United States. Health Affairs (Chevy Chase) 23 5 (2004) 9-25