8. Family-Centered Care
- Knowledge Areas
- Educational Experiences
- Resources/Assessment Tools
Family-centered care ensures the health and well-being of children and their families though a respectful family-professional partnership that includes shared decisionmaking. It honors the strengths, cultures, traditions, and expertise that everyone brings to this relationship.
Historically, in the field of MCH, the concept of family-centered care was developed within the community of parents, advocates and health professionals concerned for children with special health care needs (CSHCN).
Through participation in this program, a participant will know:
- The definition of family-centered care and the origin of the family-centered care perspective.
- At least one example of the principles of family-centered care in MCH policies, programs, or clinical practice (e.g., a medical home model of primary care).
Basic. Through participation in this program, a participant will:
- Solicit and use family input in a meaningful way in the design or delivery of clinical services, program planning and evaluation.
- Operationalize the “family-centered care” philosophical constructs (e.g., families and professionals share decisionmaking; professionals use a strengths-based approach when working with families) and use these constructs to critique and strengthen practices, programs, or policies that affect MCH population groups.
Advanced. With more experience and building on the basic skills, MCH leaders will:
- Ensure that family perspectives play a pivotal role in MCH research, clinical practice, programs, or policy (e.g., in community needs assessments, processes to establish priorities for new initiatives or research agendas, or the development of clinical guidelines).
- Assist primary care providers, organizations, and/or health plans to develop, implement, and/or evaluate models of family-centered care.
- Incorporate family-centered and medical home models of health care delivery into health professions and continuing education curricula and assess the effect of this training on professional skills, health programs, or policies.
Resources/Assessment Tools – 8. Family-Centered Care
- Institute for Family Centered Care web site Institute for Family Centered Care—This site provides practical tools for involving families as consultants and advisors in program and policy planning.
- LEND Family Discipline Competencies, 2006: http://www.aucd.org/template/news.cfm?news_id=114&id=6&parent=6
- Family Involvement in Training Programs, Presentation by Polly Arango at the PPC Annual Meeting, 2006: Download as PDF | Download as Word Document
- Promising Practices in Family Mentorship: http://www.aucd.org/template/news.cfm?news_id=115&id=119&parent=119
Inclusion Criteria –
To be considered for initial inclusion in this web site, the materials had to meet several criteria:
- the material needed to focus on one or more of the skills listed for a particular competency
- the material needed to describe either a measurement instrument or theory that could support the creation of such an instrument
- the material had to be publicly available, that is, where the item is not a commercial entity available for purchase
- the material needed either psychometric information about its properties as a measure or, particularly in the case of material found only on the Web, a high degree of face validity
Copyright and Use Issues –
The materials initially described were identified for consideration by MCH interdisciplinary training programs. Many of these materials are copyrighted and thus, may not be copied, distributed, transmitted, or published without the express written permission of the copyright owner. It is the responsibility of each user to ascertain whether materials may be freely used or whether such permission is needed.
Assessment By Faculty
In 1987 the Association for the Care of Children’s Health published a book titled Family-centered care for Children with Special Health Care Needs. In it, they described eight elements of family-centered care:
- “recognition that the family is the constant in the child’s life while the service systems and personnel within those systems fluctuate
- facilitation of parent/professional collaboration at all levels of health care
- sharing of unbiased and complete information with parents about their child’s care on an ongoing basis in an appropriate and supportive manner
- implementation of appropriate policies and programs that are comprehensive and provide emotional and financial support to meet the needs of families
- recognition of family strengths and individuality and respect for different methods of coping
- understanding and incorporating the developmental needs of infants, children, and adolescents and their families into health care delivery systems
- encouragement and facilitation of parent-to-parent support
- assurance that the design of health care delivery systems is flexible, accessible, and responsive to family needs”
These elements map closely to the skills identified for the MCH leadership competency of family-centered care. They could be used to construct a measurement instrument for use by faculty in evaluating a learner’s performance in two ways. One way to use such a measure would be to evaluate the learner in light of his or her interactions with a particular family over a particular period of time. A second way to utilize a measure of this type would be for faculty to provide global ratings for a learner as a summary of her or his performance with families over the course of a term.
Shelton, T. L., Jeppson, E. S., Johnson, B. H. Family-Centered Care for Children With Special Health Needs. Washington DC, Association for the Care of Children’s Health, 1987
Assessment by Parents
Parents’ Perceptions of Physicians’ Communicative Behavior
The Parents’ Perceptions of Physicians’ Communicative Behavior tool is a 14-item questionnaire that can be completed by children’s family members. This tool, which could be adapted to refer to members of the health care team other than physicians, covers three aspects of communication that are needed for healthy provider/consumer relationships: informativeness, interpersonal sensitivity, and partnership-building.
Street R. L. (1991). Physiciansâ€™ communication and parentsâ€™ evaluations of pediatric consultations. Medical Care. 29(11):1146-52.
Parents’ Perceptions of Family-Centered Care Behaviors
Bethell and her colleagues (2004) analyzed quality of care data collected by the National Center for Health Statistics by means of a telephone survey of parents. Four composite measures of care were analyzed, including one consisting of four items assessing parents’ perceptions of the degree to which the child health care their family received was family-centered.
Parents were asked how often the pediatric clinician:
- “takes time to understand the specific needs of (the) child
- respects the parent as an expert about his or her child
- asks the parent how he or she is feeling as a parent
- understands the parent and the child’s family and how they prefer to raise the child”
Bethell, C., Peck Reuland, C. H., Halfon, N., & Schor, E. L. (2004). Measuring the quality of preventive and developmental services for young children: National estimates and patterns of cliniciansâ€™ performance. Pediatrics. 113: 1973-83.
Measure of Processes of Care
King and her colleagues (2004) described the development of a revised and shortened version of their Measure of Processes of Care (MPOC), designed as an instrument for use in assessing parents’ perceptions of pediatric healthcare providers’ behaviors. The measure has been found to assess five areas: a) enabling and partnership, providing general information, providing specific information, coordinated and comprehensive care, and respectful and supportive care.
Information at: King, S., King, G., & Rosenbaum, P. (2004). Evaluating health service delivery to children with chronic conditions and their families: Development of a refined Measure of Processes of Care (MPOC-20). Childrenâ€™s Health Care. 33(1): 35-57.
Measure of Processes of Care for Service Providers
Woodside and her colleagues (2001) described the creation and validation of the Measures of Processes of Care for Service Providers (MPOC-SP), a 27-item instrument for pediatric care providers’ self-assessment of family-centered care behaviors. This measure was built on the MPOC, as described above, which captures parents’ perceptions of care. Factor analysis showed that these items loaded on four factors: “1) showing interpersonal sensitivity, 2) providing general information, 3) communicating specific information about the child, and 4) treating people respectfully.”
Woodside, J. M., Rosenbaum, P. L., King, S. M., & King, G. A. (2001). Family-centered service: Developing and validating a self-assessment tool for pediatric service providers. Childrenâ€™s Health Care. 30(3): 237-52.