Family Centered Care Strengthening Partnerships Between Families and Providers The Fifth Annual Infant Toddler Connection of Virginia Early Intervention Conference March 19, 2007 Roanoke, VA

What is Family Centered Care? Patient- and family-centered care is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care patients, families, and providers. Patient- and family-centered care applies to patients of all ages, and it may be practiced in any health care setting.

8 Elements of Family Centered Care Shelton, Terri L. Family-Centered Care for Children with Special Health Care Needs, Association for the Care of Children’s Health, Washington DC, Recognition that the family is the constant in the child's life, while the service systems and personnel within those systems fluctuate; 2.Facilitation of parent/professional collaboration at all levels of health care; 3.Sharing of unbiased and complete information with parents about their child's care on an ongoing basis in an appropriate and supportive manner; 4.Implementation of appropriate policies and programs that are comprehensive and provide emotional and financial support to meet the needs of families; 5.Recognition of family strengths and individuality and respect for different methods of coping; 6.Understanding and incorporating the developmental needs of infants, children, and adolescents and their families into health care delivery systems; 7.Encouragement and facilitation of parent-to-parent support; 8.Assurance that the design of health care delivery systems is flexible, accessible, and responsive to family needs.

Why is Family Centered Care Important? Providers don’t know all the right answers. Parents don’t know all the right questions.

What Families Face The time period when parents learn of their child’s condition; mourning period Fear, anxiety of the unknown, wanting the providers to “fix it all better,” depression Stress among different members of the family First-time parent, young parent, new to the country Challenges for the infant/toddler; Post traumatic stress disorder Cynicism toward provider community – not knowing all the answers Stress on the marriage Struggles with insurance companies

What Providers May Experience Parents in different phases of acceptance of their child’s condition Home environment (for ITC providers) Want to help, but may not have all the answers or may not know how May offer concrete assistance, but feel the parents aren’t receiving

What Families Can Do Allow yourself to experience the mourning period When ready, take an active role, get in the driver’s seat Research, know as much about your child’s condition as possible Interview, always get a second, or even third opinion Always provide permission to allow all of your child’s providers to talk with one another Stay as organized as possible Keep notes, write down questions Encourage communication among all providers Network with other parents Nurture your marriage and yourself

What Can Providers Do? Understand the challenges of the family Be empathetic Go on your hunches Offer services of social work, support groups Know your limitations Ask questions Offer to help (accompany the family on team-related visits, write a summary of your observations for the family to take to provider appointments

My Personal Experience

Christmas 2004

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