Health Topics: Family Centered   Tools: Family Centered   Glossary/Def of Terms

• Fact Sheets
• Policy Statements
• Periodicals/Articles
• Reports/Documents

Fact Sheets

• A New and Improved Definition of Family Centered Care
  The definition has been improved to guide and assist you to infuse professional practice, heighten family expectations, and withstand the test of time and the changing environments. These fact sheets also include principles of family centered care and the role of cultural competence. From The MCHB Division of Services for Children with Special Health Care Needs.
• A Medical Home: Consistent, Knowledgeable, and Comforting Health Care A Message from Family Voices to Families
• What is Family-Centered Care?
  Defines family, family-centered care, and how to make it work.
• Physicians: What Parents Want You to Know
  A fact sheet written from families to physicians about their child with special needs.
• Family-Centered Q&A
  A fact sheet from the Institute of Family-Centered Care

Policy Statements

• Patient- and Family-Centered Care and the Role of the Emergency Physician Providing Care to a Child in the Emergency Department. Pediatrics. Elk Grove Village, IL: American Academy of Pediatrics; Nov 2006.
  
• Family-Centered Care and the Pediatrician's Role. Pediatrics. Elk Grove Village, IL: American Academy of Pediatrics; 2003.
• Counseling Families Who Choose Complementary and Alternative Medicine for Their Child With Chronic Illness or Disability.Pediatrics. Elk Grove Village, IL: American Academy of Pediatrics; 2001.
• Role of the Pediatrician in Family-Centered Early Intervention Services . Pediatrics. Elk Grove Village, IL: American Academy of Pediatrics; 2001.
• The Pediatrician's Role in Family Support Programs. Pediatrics. Elk Grove Village, IL: American Academy of Pediatrics; 2001.

Periodicals/Articles

• Helping Families Raise Children with Special Health Care Needs at Home
  Published: PEDIATRICS, February 2005
  Authors: Chris Plauché Johnson, MD, Theodore A. Kastner, MD and the Committee on Children with Disabilities
  
• Ahmann E. Family-centered care: shifting orientation. Pediatric Nursing. March-April 1994; 20-2:113-133
• Arango P, Bishop KK, Taylor MS. Partnership At Work: Lessons Learned From Programs And Practices Of Families, Professionals And Communities. Partnerships for Change. 1997. (To order, call 802/656-8800).
• Baum, L. Internet Parent Support Groups for Primary Caregivers of a Child With Special Health Care Needs. Pediatric Nursing. 2004;30(5)
• Carnevale FA, Alexander E, Davis M, Rennick j, and Troini R. Daily Living With Distress and Enrichment: The Moral Experience of Families With Ventilator-Assisted Children at Home. Pediatrics 2006;117 e48-e60
• Eckle, N., & MacLean, S. Assessment of family-centered care policies and practices for pediatric patients in nine US emergency departments. Journal of Emergency Nursing, 2001, 27 (3), 238-245. (Abstract)
• Gill KM. Nurses’ attitudes toward parent participation: personal and professional characteristics. CHC. Winter 1987; 15-3:149-151
• Hanson JL, Johnson BH, Jeppson ES, Thomas J, & Hall JH. Hospitals Moving Forward with Family-Centered Care. Institute for Family-Centered Care. 1994 (To order, call 301/652-0281).
• Hostler SL. Family-centered care. Pediatrics Clinics of North America. 1991; 38-6:1545-1560
• Johnson BH, Webster PD, et al, eds. Collaborative Design Planning. Bethesda, MD: The Institute for Family-Centered Care; 1999
• Johnson BH, Webster PD, et al, eds. Developing Family-Centered Vision, Mission and Philosophy of Care Statements. Bethesda, MD: The Institute for Family-Centered Care; 1999
• Nelson CS, Higman SM, Sia C, McFarlane E, Fuddy L and Duggan AK. Medical Homes for At-Risk Children: Parental Reports of Clinician-Parent Relationships, Anticipatory Guidance, and Behavior Changes Pediatrics. 2005;115:48-56
• Skotko B. Mothers of Children With Down Syndrome Reflect on Their Postnatal Support. Pediatrics. 2005;115(1):64-77

Reports/Documents

• "Voices from Home 2006", Family Voices
  This 65-page report provides information on activities of the Family Voices network of family and youth leaders in the states. Also included are highlights from the FV project, Kids as Self Advocates (KASA), data summaries, and charts of FV state initiatives and partners.
  
• All Parents Need Family Pediatrics (Winter 2006)
  In 2003 the American Academy of Pediatrics (AAP) Task Force on the Family produced a report in which they called for pediatricians to "modify their practice behaviors to promote good family functioning and effective parenting." Included were recommendations for pediatricians to screen for family circumstances that put children at risk and policies and programs that promote family functioning and family-oriented care. Underlying these recommendations was the principle that "to address effectively the health and well-being of children, pediatricians must approach the family not just the child as the patient."
• Becoming a Resilient Family: Child Disability and the Family System (Spring 2005) This monograph from the National Center on Accessibility addresses not only how having a child with a disability can impact the family system, but also how families can use their circumstances to become more resilient and healthy. It also includes recommended reading for both adult and child family members.
• First National Data About Child Caregivers In The United States
  Report of Findings presents the results of two studies to determine the prevalence of caregiving among children ages 8-18 nationwide, learn what role children play in giving care (e.g., help with personal needs, meals, getting around), and learn how the caregiving role impacts the life of a child. Published by the National Alliance for Caregiving in collaboration with the United Hospital Fund and with support from the Administration on Aging.
• The Grandparent's and Other Relative Caregiver's Guide to Raising Children with Disabilities- This Children's Defens Fund guide for kinship caregivers and others answers questions about available federal programs, eligibility requirements and how to enroll children. To order a free copy call 202-662-3568 or e-mail childwelfare@childrensdefense.org
• Partnering with Parents to Promote the Healthy Development of Young Children Enrolled in Medicaid - Published by the Commonwealth Fund. Christina Bethell, et al., September 2002. (#570)
• Extending Public Health Insurance to Parents and Children Health Insurance: A Family Affair
  This report suggests that expanding Medicaid and State Children's Health Insurance Program (CHIP) coverage to parents as well as children may not only decrease the number of uninsured Americans but may be the best way to cover more uninsured children. May 2001
• Child Development and Medicaid: Attitudes of Mothers with Young Children Enrolled in Medicaid. - Published by the Commonwealth Fund. Susan Kannel and Michael J. Perry, March 2001. (#448)
• Family Cost-Sharing for CSHCN in Employer-Based Managed Care Plans 1999-2001 Mathematica Policy Research, Inc, February 2004
• Patterns of Insurance Coverage Within Families with Children
  Using the 1996 Medical Expenditure Panel Survey, this article examines patterns of health insurance within families with children, determining that 3.2 million families are uninsured and another 4.5 million families are only partially insured. January 2001

 Last Updated January 9, 2008