Family-Centered Care

"Remember that the child and family live minute by minute in the world of special health care needs. The family's involvement and agreement is crucial to the coordination of services that will help ensure that the child receives quality health care and is able to excel in life to the best of their ability."
- Quote from Gina Pola-Money, parent and family advocate
Care coordinators play an integral role in working with families to improve care on all levels. Key elements of family-centered care include:
  • Working with the family and care team to develop and update plans of care for the child
  • Facilitating family/professional collaboration in all levels of decision making for patient care, programs, and policies that affect them
  • Structuring the care system to fit the child and family's needs instead of trying to fit the family into the system
  • Sharing unbiased and complete information. Use medical translators when appropriate.
  • Being open to each family’s different perspectives, needs, experiences, and ability to successfully navigate care systems for their child. Recognize that the family is the expert on their child.
  • Encouraging and facilitating family-to-family support and networking
  • Supporting the family in navigating and coordinating among the Medical Home, specialists, educational system, community resources

Tips and Ideas for Family Involvement

Ask the family how care coordination might help them. Offer a brief explanation or suggestions, if necessary.
Ask the family how past experiences have been with care coordination - what they liked or helped and what didn't.
Ask the family to tell you what they know (or wish they knew) about the child's condition so that you know where and how to begin giving information. You may be surprised to learn what families do or do not know.
Ask the family where or how they've learned about their child's condition.
Ask the family how they cope or handle stressful situations. Ask them what causes them the most stress. Learn what their coping mechanisms are so that you can assist them in identifying and redirecting negative response behaviors.
Ask the family if they would be interested in meeting or just talking with another family who has a child with a similar condition.
Ask if they have ever tried to become involved with a support group for families. If not, ask what stopped them from participating. Some families prefer one-on-one discussion vs. group participation. Always obtain family consent prior to giving out family's name and telephone number as a resource/support contact.
Ask the families what they like about the current health care delivery system. Then ask what things they would like to see changed. Listen and offer support and information about how the system works. Sometimes understanding why things are structured the way they are diffuses resentment towards the system. Or, there may be changes that you can clarify or accommodate, making the family more receptive to your partnership.
Ask about their child's developmental process. Parents like to hear that their child is doing well developmentally. If their child is not developmentally appropriate for age, ask what information they have regarding their child's development, and encourage discussion with the primary care provider, if appropriate. Find out what information and resources they may be getting from other service providers and programs that can assist them in understanding their child's developmental needs.
Keep the primary care provider informed of important health, developmental or psychosocial issues. By doing so you will create a working partnership between the family, yourself and the primary care provider (PCP/Medical Home). Remember that "short and to the point" is preferable.
Give the family a copy of a recent family-focused publication, such as the Exceptional Parent which can be purchased at Barnes & Noble or ordered on the internet.

For more information on families and family involvement, visit the Institute for Patient- and Family-Centered Care web site. The Family-Centered Care Assessment for Families (FCCA-F) is a 24 question quality measurement questionnaire developed by Family Voices to measure a respondent family’s perception of the family-centeredness of care from a provider Family-Centered Care Assessment for Families (FCCA-F) (Word Document 242 KB).

Authors

Contributing Author: Mindy Tueller, MS - 1/2015
Reviewing Authors: Alfred Romeo, RN, Ph.D. - 4/2008
Barbara Ward, RN BS - 11/2006
Content Last Updated: 11/2017