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Annotated Bibliography

More about patient and family faculty programs may be found in the newest addition to the Institute’s series of guidance resources entitled, Creating Patient and Family Faculty Programs.

  1. Association of American Medical Colleges. (1999). Proceedings of the patient- and family-centered care working group. Washington, DC: Author. (To request free copies of this publication, please contact: Association of American Medical Colleges, Office of Communications, 2450 N Street, NW, Washington, DC 20037. AAMC can also be reached by phone at 202-828-0542.)

    This publication contains descriptions of a number of health care programs that are practicing patient- and family-centered care.

  2. Baker-McCue, T., & Hains, A. (1999). Designing diverse practica: Family practica. Flat Rock, N.C.: Faculty Institute. (Available from Camille Catlett at the Frank Porter Graham Child Development Center: phone, 919-966-6635 or e-mail, camille@unc.edu).

    Outline, handouts and content from an educational program for developing family-centered, collaborative early childhood personnel preparation programs. Material from Parents Reaching Out, associated with the University of New Mexico, and the Waisman Center, associated with the University of Wisconsin–Madison, and including course material and curricular content, handouts, samples of recruitment and evaluation tools for family faculty programs and a bibliography.

  3. Blasco, P. A., Kohen, H., & Shapland, C. (1999). Parents-as-teachers: Design and establishment of a training program for pediatric residents. Medical Education, 33: 695-701.

    A report of a program that includes visits to the homes of children with disabilities for pediatric residents at the University of Minnesota. It describes the rationale for the program, its content, its value and its relationship to other aspects of the curriculum.

  4. Blaylock, B. (2000). Patients and families as teachers: Inspiring an empathic connection. Families, Systems & Health, 18(20): 161-175.

    This paper describes several curricular innovations that involve patients and family members as faculty. It discusses the rationale for and goals of these efforts, some considerations useful to planning and a vision for the future.

  5. Bridging the Gaps: Community Health Internship Program. 2000 Health Action Report. Collingswood, NJ: United Printing, Inc.

    This report describes several service learning programs in communities served by a number of health professional training schools in Pennsylvania.

  6. Capone, A. M., & DiVenere, N. (1996). The evolution of a personnel preparation program: Preparation of family-centered practitioners. Journal of Early Intervention, 20(1): 222-231.

    This article describes the Master’s Program in Early Childhood Special Education at the University of Vermont. It provides a detailed description of the course, which includes an extensive family practicum involving collaborative projects that trainees undertake with families. Factors critical to the development and refinement of the course are discussed. The case for involving families in the educational process is effectively made.

  7. Capone, A., Hull, K. M., & DiVenere, N. (1997). Parent-professional partnerships in preservice and inservice education. In P. J. Winton, J. McCollum, & C. Catlett (Eds.) Handbook of personnel preparation for early intervention. Baltimore, MD: Paul H. Brookes Publishing Company.

    This chapter describes a number of roles for parents in professional education. It includes a thoughtful discussion of the rationale, methods for family recruitment and support, and offers strategies for implementation. Two programs in Vermont, the Medical Education Project for medical students and the Early Childhood Special Education Master’s Program, are highlighted.

  8. Catlett, C., & Winton, P. J. (Eds.). (1999) Resource guide: Selected early childhood/early intervention training materials, 8th ed. Chapel Hill, NC: University of North Carolina, Frank Parker Graham Child Development Center

    This annual compendium of resources is useful not only for training in early childhood intervention but also for patient/professional collaboration in education in general. Very effectively organized, it offers complete information on ordering the resources cited. This guide may be ordered or downloaded over the Internet at: http://www.fpg.unc.edu/~scpp/pages/products.cfm.

  9. Conatser, C., & Babcock, H. M. (1993). Children with cancer and medical students teach each other. Cancer Practice, 1(2): 110-115.

    This paper describes the Cancer Outreach and Relief Effort (CORE) program, which pairs medical students with children who have cancer or other chronic illnesses in a service learning volunteer relationship. The program has been implemented at several medical schools across the country. This paper discusses the program’s history and the way it has been applied at the University of Texas Southwestern Medical Center at Dallas and Children’s Medical Center of Dallas.

  10. Darling, R., & Peter, M. (Eds.). (1993). Families, physicians & children with special health needs: Collaborative medical education models. Westport, CT: Greenwood Publishing.

    This book provides detailed profiles of several collaborative educational projects involving the families of children with chronic conditions. It includes several descriptions about programs for medical students at the University of Connecticut and Dartmouth, and a chapter on the Medical Education Project which is administered by Parent to Parent of Vermont at the University of Vermont. Another chapter, by Carl Cooley, concerns pediatric residency programs, including those at Dartmouth and the University of Maryland. There are descriptions of continuing medical education efforts in Hawaii and Florida and an inspiring chapter by Florene Stewart Poyadue about collaboration: why it works and how to achieve it. Also included is a chapter by Stanley Klein on communicating with the parents of children with special health needs.

  11. DiVenere, N., & Witkin, K. (1998). The Medical Education Project: Incorporating the principles of family-centered care in physician education. Winooski, VT: Parent to Parent of Vermont.

    A detailed description of a curricular module for medical students, this guide includes teaching family-centered principles, exercises to raise self-awareness and a home visit to the home of a child with a disability. This program has served as a prototype for several other projects around the country. A video is also available. (Available from Parent to Parent, 600 Blair Park Road, Suite #240, Williston, VT 05495. The toll free number is 1-800-800-4005 and the website address is: www.partoparvt.org).

  12. Duckworth, K., Kahn, M. W., & Githeil, T. G. (1994). Roles, quandaries, and remedies: Teaching professional boundaries to medical students. Harvard Review of Psychiatry, 1(5): 266-270.

    This article explores the conflicts and tensions that produce boundary issues in clinical training and practice and ways to help trainees develop healthy responses and appropriate boundaries. Specific tensions discussed include empathy versus overidentification, objectivity versus avoidance, collaboration versus coercion, and self-confidence versus "specialness."

  13. Hanson, J. L., Randall, V. F., & Colston, S. S. (1999). Parent advisors: Enhancing services for young children with special needs. Infants & Young Children, 12(1): 17-25.

    Details about the collaborative effort by faculty and families to develop educational initiatives at the Uniformed Services University of the Health Sciences are described in this paper. Steps in the process of envisioning the goals of the program are enumerated.

  14. Hecht, L., DiVenere, N., & Whitehead, A. (1996, March). Systems change: Roles for parents in educating professionals. Paper presented at the International Parent-to-Parent Conference, Albuquerque, NM.

    Information relating to planning and implementing successful family faculty programs based on extensive experience in Vermont and Wisconsin.

  15. Heller, R., & McKlindon, D. (1996). Families as "faculty": Parents educating caregivers about family-centered care. Pediatric Nursing 22(5): 428-431.

    This article describes the development of, rationale for, and initial components of The Family Faculty Program at The Children’s Hospital of Philadelphia, a teaching hospital affiliated with the University of Pennsylvania Schools of Medicine and Nursing.

  16. Hostler, S. L. (Ed.). (1994). Family-centered care: An approach to implementation. Charlottesville, VA: The University of Virginia, Children’s Medical Center, Kluge Children’s Rehabilitation Center.

    This comprehensive resource focuses primarily on pediatric care, but the information may be generalized to other types of care. There are chapters on the nature of teaching hospitals, on education for physicians, nurses, and social workers, on ideas for curriculum development, on collaboration with patients and families, and on families as educators.

  17. Institute for Patient- and Family-Centered Care. (1999). Advances in family-centered care: Medical education—Blueprint for change. Bethesda, MD: Author.

    This is a resource for the champions of medical education reform. It discusses the types of changes that need to occur in medical education in order to prepare future doctors and other health care professionals

  18. Jellinek, M. S., Todres, I. D., Catlin, E. A., Cassem, E. H., & Salzman, A. (1993). Pediatric intensive care training: Confronting the dark side. Critical Care Medicine, 21(5): 775-779.

    This article would be useful as a training resource for family faculty members in a pediatric setting and as a guide for program directors in designing that supportive methods for helping trainees. It describes the pressures intensive care fellows face and the emotional difficulties that can result. It promotes empathy for, and a better understanding of, the physician’s perspective.

  19. Jeppson, E. S., & Thomas, J. (1995). Essential allies: Families as advisors. Bethesda, MD: Institute for Patient- and Family-Centered Care.

    This practical manual addresses how to involve families as consultants and advisors in policy and program planning. It includes descriptions of how hospitals, state agencies, community programs and universities have fostered family-professional collaboration. A particular focus is placed on involving families who have been traditionally underrepresented in policy-making activities.

  20. Jeppson, E. S., & Thomas, J. (1997). Families as advisors: A training guide for collaboration. Bethesda, MD: Institute for Patient- and Family-Centered Care.

    This publication provides specific training exercises useful in training patients and families in multiple advisory roles, including educational ones.

  21. King, S. (1994). Telling your family story parents as presenters. (Videotape and guide). Madison, WI: Parent Projects, Wisconsin Personnel Development Project.

    This tape and guide provide practical information for individuals who wish to share their personal and family experiences. Developed for parents of children with special needs, the content is applicable to other patient and family presenters as well, particularly those new to such roles. (These may be ordered through: Parent Projects, Waisman Center, Room 231, University of Wisconsin–Madison, 1500 Highland Ave., Madison, WI 53705)

  22. Matteoli, R. F., Verhey, M. P., & Warda, M. R. (1994). Collaboration between families and university faculty: A partnership in education. Journal of Psychosocial Nursing, 32(10): 17-20.

    The authors provide a detailed description of a program developed in collaboration with the California Alliance for the Mentally Ill in northern California. Patients with serious emotional disorders and their family members serve as lecturers and host home visits for nursing students at San Francisco State University.

  23. McBride, S. L., Sharp, L., Hains, A., & Whitehead, A. (1995). Innovative practices: Parents as co-instructors in preservice training: A pathway to family-centered practice. Journal of Early Intervention, 19(4): 343-355.

    This paper offers detailed information about involving patients or family members as co-instructors in coursework. Topics such as program rationale, a range of potential arrangements for sharing teaching This paper offers detailed information about involving patients or family members as co-instructors in coursework. Topics such as program rationale, a range of potential arrangements for sharing teaching serious emotional disorders are described herein. The PEN-PAL project in eastern North Carolina is used as an example. Lessons learned and the family faculty perspective are detailed.

  24. McKlindon, D., & Barnsteiner, J. H. (1999). Therapeutic relationships: Evolution of The Children’s Hospital of Philadelphia model. American Journal of Maternal/Child Nursing, 24(5): 237-243.

    These authors describe therapeutic relationships and boundaries, a topic appropriate for inclusion in patient and family as well as trainee preparation for family faculty experiences. It is also suited for presentation to and discussion with health professionals. This article draws on the experience of evolving nursing practice at The Children’s Hospital of Philadelphia.

  25. Meyers, J., Kaufman, M., & Goldman, S. (1999). Promising practices: Training strategies for serving children with serious emotional disturbance and their families in a system of care. Systems of Care: Promising Practices in Children’s Mental Health, 1998 Series, Volume V. Washington, DC: Center for Effective Collaboration and Practice, American Institutes for Research.

    This manual provides a description of training considerations and examples in children’s mental health. The PEN-PAL project in North Carolina, which provided inservice and preservice training for mental health service providers in systems of care, is described as one of the programs.

  26. Osher, T., deFur, E., Nava, C., Spencer, S., & Toth-Dennis, D. (1999). New roles for families in systems of care. Systems of Care: Promising Practices in Children’s Mental Health, 1998 Series, Volume I . Washington, DC: Center for Effective Collaboration and Practice, American Institutes for Research.

    A number of educational roles for family members of children with serious emotional disorders are described herein. The PEN-PAL project in eastern North Carolina is used as an example. Lessons learned and the family faculty perspective are detailed.

  27. Reiser, S. J. (1993). The era of the patient: using the experience of illness in shaping the missions of health care. JAMA, 269(8): 1012-1017.

    This article puts forth rationale for consumer involvement in all aspects of health care, including education. It offers concrete suggestions for innovation.

  28. Richards, R. W. (1996). Building partnerships: Educating health professionals for the communities they serve. San Francisco, CA: Jossey-Bass Publishers.

    This book describes community-academic partnerships sponsored by the Kellogg Foundation that are designed to promote collaborative educational settings in the community for health professional trainees from multiple disciplines. It includes an insightful chapter on potential barriers to curricular changes stemming from the hierarchical and political structure of medical schools.

  29. Seifer, S. D. (1998). Service-learning: Community-campus partnerships for health professions education. Academic Medicine, 73(3): 273-277.

    This paper describes collaborative approaches to learning that simultaneously provide services to the community and involve community members as partners in program development and teaching. The rationale and key elements for such programs are offered, along with examples and a list of resources.

  30. Smith, T. & conant rees, h. l. (2000). Making family-centered care a reality. Seminars for Nurse Managers, 8(3): 136-142.

    This report describes one hospital’s journey into family-centered care. It is a good resource for individuals interested in championing family-centered care within a specific institution.

  31. Staub, B., and a panel of parents. (1990). Parent/professional partnerships in caring for the child with multiple disabilities. Minneapolis: University of Minnesota Department of Pediatrics.

    This is a videotape of a pediatric grand rounds presentation by a panel of parents of children with disabilities. It lasts slightly over an hour and features very well done presentations. It would be useful in training health care professionals or in preparing consumer faculty to make presentations. This and/or the companion tape below may be ordered for $25 each by calling Marshall Hoff at 1-612-626-2797.

  32. Staub, B., and a panel of parents. (1992). Chronic pediatric disabilities: A parent’s perspective. Minneapolis: University of Minnesota Department of Pediatrics.

    A sister videotape to the one above, this is another pediatric grand rounds presentation with Dr. Staub and other parents on a panel. It lasts slightly over an hour.

  33. Thomas, J., & Jeppson, E. S. (1995). Words of advice: A guidebook for families serving as advisors. Bethesda, MD: Institute for Patient- and Family-Centered Care.

    This guide offers specific suggestions for patients and family members involved in a variety of advisory and educational roles. It includes information on the benefits, challenges, and evaluation of appropriate roles. Individuals who have served in these roles offer tips from their experience.

  34. Tuton, L. W., Siegel, C. H., & Campbell, T. B. (2000). Bridging the Gaps; Community health internship program: A case study in professional development of medical students. In D. Wear & J. Bickel (Eds.), Educating for professionalism: Creating a culture of humanism in medical education (pp. 174-183). Iowa City, IA: University of Iowa Press.

    This chapter offers insight into the challenges facing medical educators in preparing students for community interventions. It offers a good beginning in understanding the complexities of coordinating community workers, medical schools, and medical personnel in collaborative efforts.

  35. Waddell, R. F., & Davidson, R. A. (2000). The role of the community in educating medical students: Initial impressions from a new program. Education for Health, 13(1): 75-82.

    This description of a community service-learning program for first-year medical students at the University of Florida School of Medicine addresses home visits and the encouragement of mutually beneficial relationships between students and families.

  36. Wells, K. B., Benson, M. C., Hoff, P., & Stuber, M. (1987). A home-visit program for first-year medical students as perceived by participating families. Family Medicine, 19(5): 364-367.

    Home visiting programs impact the families who choose to participate. This article examines results of a self-report questionnaire completed by 30 participating families.

  37. Westburg, J., & Jason, H. (1993). Collaborative clinical education: The foundation of effective health care. New York: Springer Publishing Company.

    A thorough treatment of all aspects of collaborative teaching in medical education is offered in this book. It defines collaborative education and describes how to prepare participants for collaborative approaches. Reference is made to effective principles of adult learning, role modeling, and eliciting feedback from patients. This book is an excellent resource for curricular development of all types.

  38. Westburg, J., & Jason, H. (1991). Making presentations: A CIS guidebook for health professions teachers. Boulder, CO: Center for Instructional Support.

    One of a series of succinct guidebooks for teaching in the health professions, this volume focuses on specific skills and strategies for effective presentations. It would be appropriate to use in training patient and family faculty for teaching roles.

  39. Whitehead, A. (Ed.). (1994). Parent projects: The parent perspective, a parent consultant directory, 2nd ed. Madison, WI: Wisconsin Personnel Development Project, the Waisman Center, University of Wisconsin– Madison.

    This state directory lists parents of children with disabilities who are available for sharing their experiences with students. It has been distributed to centers that train personnel in multiple fields that provide services to children.

  40. Whitehead, A., Jesien, G., & Ulanski, B. K. (1998). Weaving parents into the fabric of early intervention interdisciplinary training: How to integrate and support family involvement in training. Infants and Young Children, 10(3): 44-53.

    This article describes the Family-Centered Interdisciplinary Preservice Training Program in Early Intervention at the University of Wisconsin at Madison. Parent roles, the structure of the course, its goals and benefits are described. Tips on involving parents in similar programs are presented.

  41. Whitehead, A., & Hains, A. H. (1997 June). Supporting family involvement in preservice preparation: An overview of options. Flat Rock, N.C., Faculty Institute: (Available from Camille Catlett at the Frank Porter Graham Child Development Center, phone, 919-966-6635 or e-mail, camille@unc.edu).

    This document includes the outline, bibliography, and handouts from a seminar on preparing personnel for early childhood intervention; information and handouts on parents as faculty in multiple aspects of higher education; sample evaluation forms; detailed information about the Parent Consultant Directory developed by the Wisconsin Personnel Development Project; and other examples from the Waisman Center and other institutions in Wisconsin.

  42. Whitehead, A., Ulanski, B., Swedeen, B., Sprague, R., Yellen-Shiring, G., Fruchtman, A., Pomje, C., & Rosin, P. (1998). By design: Family-centered interdisciplinary preservice training in early intervention. Madison, WI: Waisman Center, University of Wisconsin–Madison.

    A comprehensive guide describing the key elements of the Family-Centered Interdisciplinary Training Project in Early Intervention at the Waisman Center. It includes content, procedures, training materials, and other tools appropriate for implementing a similar program. Covered are seminars, team activities, a home-based family-mentor experience, a community program practicum, trainee supervision and evaluation tools. Much of the material would be helpful and relevant to educators/practitioners in any discipline.

  43. Williams-Murphy, T., DeChillo, N., Koren, P. E., & Hunter, R. H. (1994). Family/professional collaboration: The perspective of those who have tried. Portland, OR: Portland State University, Research and Training Center on Family Support and Children’s Mental Health.

    This is a follow-up report on the long-term effects of a training program that used family members as co-trainers. The program was designed to promote collaboration between professionals and families in the area of children’s mental health.

  44. Winton, P. J., & DiVenere, N. (1995). Family-professional partnerships in early intervention: Guidelines and strategies. Topics in Early Childhoood Special Education, 15(3), 296-313.

    This article describes several roles family members can play in training and advisory activities. It offers detailed advice on recruiting, preparing and supporting them in their roles.


The Benefits of Family Faculty Programs for Health Care Professionals, Patients and Family Members »

Roles for Patient and Family Faculty »

Medical Education: Patient and Family Faculty Programs »

Recruiting Patient and Family Faculty »

Tips for Developing and Maintaining Successful Patient and Family Faculty Programs »

Annotated Bibliography »

Selected Websites and Additional Resources »

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