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Building Partnerships With Families

Family centered care, is the cornerstone of the medical home approach. The family is the constant in the lives of children with special health care needs. Family and professional collaboration will result in more efficient and comprehensive care. Family centered care honors the diversity of families and recognizes the strengths and needs of individual families. A medical home ensures that families receive accessible and coordinated care that is integrated with non-health care related services.

Below are strategies that have been used successfully by primary care practices.

Work with children and families as in developing care plans.
Use surveys as such the Medical Home Family Index and the Family Needs Assessment to gather individualized information about strengths and needs of families at office visits.
Incorporate a family feedback questionnaire as part of a routine office visit to give office staff ongoing information about what is working well and suggestions for changes in the practice.
Include parents of CSHN on an office Resource and Referral Team that can share information about local resources with families and provide parent to parent support.
Use focus groups of parents in order to obtain information on ways to enhance the experience of children with special needs and their families in the office.
Establish a Parent Advisory Group, the will meet regularly with office staff to provide an ongoing family perspective on procedures, space and policies in the office.
Include parents on a continuous quality improvement team in the office that can assist in identifying priorities for making practice changes and supports measurement to make sure they make a difference.
Ask office staff to complete a self-assessment on providing culturally effective care

Continuous Quality Improvement (CQI)

We recommend the CQI model developed by Carl Cooley, Jeannie McAllister and their co-workers at the Center for Medical Home Improvement (www.medicalhomeimprovement.org). The Continuous Quality Improvement (CQI) process will facilitate the development of professional/family teams, will identify priorities for changes in the primary care practice and evaluate medical home improvements. The components of continuous quality improvement include:

The formation of an office team which includes a physician, an office nurse or business manager, and two parents of children with special health care needs
A formal assessment of the practice by physicians and families, for example, completion of the Medical Home Index and Medical Home Family Index.
The development of an AIM statement, the overall goal of change .
And a systematic process of developing action plans to achieve the AIM. The steps of the process are a plan, do, study (measurement), act (adjust action plan as needed).

Dr. Cooley and co-workers recommend regular team meetings (at least twice monthly) with defined agendas, meeting rules and written summaries to help the team learn to work together efficiently and accomplish the goals of CQI. As teams discuss their plans for the practices they learn about how the practice operates and how families perceive the practice. Overall the process builds trust and partnership with families and office staff. Offices gain confidence in making change in a step-by-step fashion.

Following the formal practice assessment and regular meetings, this AIM statement was developed by one of the Oregon Medical Home Project Teams: "Our Aim is to improve care coordination practices so that our families see that our office is the cornerstone of their child’s care." The action plan of this team of physicians, nurses and parents included the development of a resource guide and brochure and conducting a parent focus group.

Getting started:

Build the CQI team: a physician, an office nurse or manager and 2 families members
Identify a facilitator for the team. This individual will initially facilitate the process of team building. (In Oregon, staff from the Oregon Medical Home Project and the six practices that work with us are available to help you get started.)
Assess the practice using the Medical Home Index and Family Index
Share the results of the assessment with each other
Develop an overall AIM (goal) for the practice of what you hope to change.
Brainstorm ways that the practice can achieve this change and decide on a action plan.
Continue the plan, do, study, act process by measuring the results of your action plan (did it work as you anticipated?).
Share your successes with the whole practice
Continue to meet regularly to update your AIM statement and action plan. Your work will result in sustained change in the practice.

For more information about this process, check out the Center for Medical Home Improvement or talk with the staff of the Oregon Medical Home Project.

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Screening and surveillance

Identifying children with special healthcare needs

Care coordination

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Building partnerships with families

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