You'll find hundreds of files on cleft lip, cleft palate here on

This one is about: Recognizing the Signs of Family-Centered Care

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by Joanne Green

In days of old most medicine was practiced at home. Mom generally made the diagnoses and doled out her own prescriptions for treatment, which may have been anything from a mustard plaster, to hot chicken soup, to a spoonful of castor oil. This was family medicine! But when a condition arose that required the attention of a "real doctor", it was a different matter altogether. In the offices of the man with the Medical Degree, all intuition was deferred to the professional and family took a backseat in the decision-making department.

Not only that, but a patient was often viewed by the medical community as existing in something of a vacuum. The needs of that patient's injured tissue were all that mattered. A cleft child was defined by his cleft first, and as a child second. Little attention was paid to the child's comfort or his budding self-image, nor to the needs of his family.

Well, we've come a long way, baby - to a concept now known as "Family-Centered Care".

The family-centered model of care differs from the previous medical model in two very important ways. First, it differs because in Family Centered Care, the family, including the parents, the patient, and any significant other person, are part of the collaborative effort in terms of treatment. In the medical model of care, doctors made decisions and parents were simply told what those decisions were. End of story.

The second difference between the family-centered model and the medical model is that the needs of the whole family are considered as factors in treatment decisions and intervention. Now, for instance, social workers are available to help a family find financial aid to help with hospital costs. That may not have been a concern for which the professionals of the medical model would have taken responsibility.

Clearly the family-centered approach has proven to be the better approach for all concerned. Most craniofacial teams now employ some degree of family-centeredness. In the real world out there, things are not altogether black and white. A treatment program can usually be described as something in between the family-centered model and the medical model. (A family-centered medical model, for instance, or a medically-inclined family-centered approach). How family-centered is your treatment team? The following are seven earmarks of a family centered program. See how many describe the treatment team in your area.

1) A family-centered team respects and supports the role of family in the care of children as essential. The team recognizes the importance of the family in all aspects of care. The family represents a child's greatest support structure, and therefore his greatest source of strength. That relationship must be recognized as a vital factor in the child's care.

2) There is a collaboration between the parents/patient and the professional at all levels. There should never be a decision made that the parent does not have input to before it is finalized. A misinterpretation of this concept often takes the form of meeting with the family to inform them of decisions already made and to get a signature on the dotted line that claims informed consent. True collaboration means the family is consulted prior to the final decision. This also infers that the parents be made aware of available options, and that they fully understand the procedure under consideration. Many parents are afraid to ask questions, but they need not be. Most doctors would rather take the time to explain again and again rather than allow the parent to experience the frustration of not understanding. Parents as members of the collaborative team does not imply that the parent has the same degree of medical understanding as the medical staff. Rather, it implies that the unique perspective of the parent is valuable in treatment considerations.

3) There is a sharing of information between parents/patients and professionals. There must be an atmosphere available in which parents can feel comfortable asking questions and sharing information, and the doctor or team must communicate a willingness to take time with the family to insure that all pertinent information has passed from one to the other. A rushed atmosphere in a busy office is not at all conducive to this sort of exchange.

4) Comprehensive services are provided for the needs of the various members of the family. Beyond simply the needs associated with reconstruction of tissue, there are needs that may be presented by any member of the patient's family. Because families generally function as a unit, anything that affects one member of the family will affect the whole family - including the patient. There may be life-style problems in the home, for instance, that drastically affect the level of care that can be provided for the child. A family-centered program will recognize that need and address it, probably through a referral to an appropriate intervention program.

5) Family strengths and individuality are incorporated in care. Every family is different. Therefore, there can not be only one way to approach family-centered care. Some have very supportive extended families who will be available to help, while others may be single parents with other small children to consider. Some parents make "good little nurses", while others blanch at the sight of blood. In some families the father is the one with whom most contact is made, in others it is the mother. Some families rely heavily on a grandparent. If every family were treated exactly alike and expected to conform to rigid rules laid out by the medical profession, many children would be inadequately served.

6) The racial, cultural and religious diversity, and the socio-economical level of each family must be respected. Every family should have equal opportunity to the same quality of service, regardless of race, religion, culture, or income. This is a particular concern when the family speaks a language other than that spoken by the doctor. In order to insure family-centered care, a reliable translator must be present. (This should not be simply another child in the home.) In many cases there are also cultural differences that will dictate the way in which a family or a patient is to be approached. For instance, in some Asian cultures a child is taught not to look into the face of a respected adult. The down-cast eyes of a respectful child may be misinterpreted as shyness or poor self image. The family-centered program would endeavor to learn about the cultural diversity in their area so that they may serve persons from all cultural backgrounds without offense.

7) Parent-to-parent support is encouraged. There is no stronger source of outside support than that which can be offered by someone who has traveled your path before you. A family-centered program will encourage the formation of parent/parent support groups. These groups often function best if they are autonomous. That is, they should be encouraged by the treatment team, but in most cases they should not be facilitated by the team. They should be facilitated by their own internal government. That is, persons directly affected by cleft, either as a parent or as a patient, should facilitate the group. There are some who strongly believe that a parent support group should not include professionals at all. In fact, there are many cases in which the presence of a medical professional has been helpful, but only when that professional does not have a stifling affect on the group. A parent should be able to sit in a group and feel comfortable saying, "I don't agree with my doctor." It is hoped that that same parent would feel comfortable sharing the same sentiment with that doctor, but if not, then it should be said aloud in group.

Most treatment teams today are family-centered, to some degree or another. It is exciting to see the respect that the doctors give to parents in the treatment of children. But the most important ingredient in the family-centered approach is you. A family-centered program is only as strong as the family being served. Your input is YOUR responsibility. And it is your child's reward.

-------------Joanne Green is the mother of three children born with cleft lip and palate. She is also the Editor of WIDE 
SMILES Magazine.

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