The Power of Partnership:

Meeting Today’s MCH Challenges through Partnerships

MCH Training Program

 

Family-Centered Curricula Workgroup

October 5–6, 2004

 

 

MCHB Representative: Nanette Pepper, BSN, M.Ed.

Facilitators: Albert C. Hergenroeder, MD; JoAnne Youngblut, Ph D.; Louise Iwaishi, MD

 

Other Participants:

 

David Deere

Roland Ellis

Elaine Germano

James Hagood

Gina Harris

Dalice Hertzberg

Louann Rinner

Ruth Roberts

Mary Schroth

Jennette Silao

Judith Silver

Douglas Taren

Anne Marie Tharpe

Michael C. Thomasgard

Anne Turner-Henson

Julie Zuniga

Edwin Drummond (Recorder)

Judith Holt

Julie Johnson

Marilia Neves

Mary Jeanne Phipps

 

Introduction and Charge

 

The National MCH Training Plan (obj. 2.3, activity 1) calls for “a set of specific activities for MCHB to undertake, designed to ensure that all MCH trainees receive comprehensive training in family-centered services.” The goal is to have family-centered care incorporated in all HRSA training programs goal by 2008.

 

Family-centered curricula (FCC) are critical to mission of HRSA and must be viewed as a part of the strategic process and incorporated into all of the training programs presently funded. The principle of family-centered care should permeate all aspects of education for staff—not just a module.

 

The design of policy needs to include families as equal partners. Family-centered initiatives should further focus upon the needs of the individual as well as the family with the understanding these needs must be customized and revised based upon the various life stages. Transitions occur at many times during the lifespan not just at diagnosis.

 

The workgroup was encouraged by Albert Hergenroeder to brainstorm some ideas to meet this challenge. He invited all the participants to share freely their experiences and suggestions on how to effectively incorporate family-centered curricula into the various training programs funded by MCHB.

 

Working with Families

 

The participants offered various suggestions on how to solicit the support and participation of the family, including providing financial compensation for family members. This factor emphasizes the importance and commitment of the family’s contribution to the design and development of the program. Working with a paid parent has proven very helpful. In addition, some programs have people that serve a dual role as both family and faculty. This ensures a continual communication and input process for the development of the curriculum. For example, one participant mentioned that their review board includes paid parents’ input in both evaluation and design phase of care.

 

To ensure that trainees receive hands-on experience, programs should require trainees to make home visits to learn how to work with families. Direct observation is very important for evaluation of care. For example, one nursing program was discussed that used home visits to not only gather clinical information, but also to learn about the aspirations of the parent and child.

 

To develop a full perspective of how the entire family is affected, it is necessary to view the family in its surrounding community. Family and community education are very important to ensure effective service delivery.   

 

The group challenged the definition of family and discussed how the term family should be broadly defined. MCH programs should consider parents as care givers and others beyond the immediate family, such as extended family and friends. There are also nontraditional families.

 

A case study was presented by one of the facilitators to highlight the importance of family-centered curricula. A young child had a complicated care regimen involving multiple treatments each week. The staff was upset with the care of the child because of numerous missed appointments and treatments. Further investigation revealed that there were numerous barriers to the child receiving proper medical treatments. These barriers included other siblings with special needs, an unemployed father, and a mother who assumed the primary financial responsibility for the family income.

 

LEND, LEARN, and LEAH Programs

 

The facilitators led a discussion focused on the LEND, LEARN, and LEAH programs. The discussion also touched on the certification program, Project DOC, and the Nurse Midwifery program.

 

Under the LEND program, actual families are introduced as learning tools for other families; however, HIPAA privacy requirements are honored. FCC is not just a module; it is incorporated as an overarching principle. The participants recommended that an evaluation tool should be developed to gauge whether a trainee has incorporated family-centered care.

 

Pre- and post-tests are completed for competency assurance. Web-based competencies are also available for learning opportunities. Research modules are validated by family faculty feedback (FFF) given from the family’s perspective.

 

Regarding the LEARN program, the participants discussed how to incorporate a family advisory board into programs to ensure that a family-centered focus is maintained in curricula. One participant shared the how a family advisory board may be managed. The board meets annually and case reports are provided for each member prior to the meeting for review. Multiple perspectives are given on each report.  Minutes are recorded of the actual meeting. Attendance and participation are voluntary. The direction of the program is a major point of discussion, and feedback from families regarding their needs is critical. In some cases, selected family cases are chosen for more in-depth study.

 

For certification programs, review boards may include paid parents’ input in both evaluation and design phase. Continuity and observation are both very important.

 

In the Nurse Midwifery program, all clinical encounters include an assessment of whether a family-centered approach is being used in counseling and planning. Families are requested to attend a partner’s monthly meeting in order to discuss the delivery of health care.

 

For Project DOC, physicians visit families at their homes. No clinical care is provided during these visits. The University of Massachusetts did a project on family-centered care. It is important to realize that transitions occur at many different times, not just as the time of diagnosis of the child.

 

The participants came up with myriad suggestions about how to incorporate a family-centered curriculum into an overall training program. They noted the diversity of the various training programs in terms of funding levels and whether the programs are academic or clinical in nature.

 

 

 

Developing an effective evaluation system for evidence-based success stories is critical for demonstrating the effectiveness of a family-centered curriculum. The participants brainstormed about the tools available to help programs develop appropriate evaluation systems for family-centered curricula.

 

 

In an effort to define or standardize the components of a family-centered curriculum, the group discussed various topics or subjects that should be included. Among the components identified were continuous quality assurance; content; family theory; assessment; identification of who is to be involved; designation of roles and rules; identification of subsystems; boundaries; and the external environment.                                                         

 

100% Family-Centered Care?

 

There was some discussion about whether the 100% FCC goal is reasonable for all HRSA programs. Three years seems like a rather ambitious goal; however, it may be necessary to look at the level of the programs because, for example, certificate programs have fewer resources than PPC or LEND. Several ideas were offered about barriers to the 100% FCC goal and what would be minimal standards for HRSA programs.

 

 

 

Conclusions

 

 

 

 

The workgroup also suggested several ways to work with families in training programs by using or taking advantage of  existing models, bringing in families as members of curriculum team, and making a real commitment to family-centered care by starting small and building from there.