This is a partnership beyond providing care. Family and personal expertise is a body of knowledge that constitutes a discipline. Family and self-advocate faculty, staff, and consultants provide interdisciplinary teams with an invaluable perspective: that of the recipient of care and services. The family and self-advocate as leader and teacher is invaluable to training programs, hospitals, and other public health programs.
From a health and wellness perspective, the key to effective family-professional partnerships entails:
- Shared decision making, always involving individuals and the family in planning and implementing activities.
- Addressing family priorities.
- Connecting the family to needed services.
- Tailoring recommendations to social, educational, and cultural issues affecting the family.
- Recognizing the impact of a child with special health care needs on families at a systems level.
- Acknowledging the potential of the family as a source of strength and support in child, adolescent, youth, and young adult care.
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 CYSHCN, with the goal that all care is received in family-centered, comprehensive, coordinated systems. Further, individuals who have personal experiences with the system of care, such as those with developmental and physical disabilities; behavioral and mental health issues; and/or chronic illness provide insight and a perspective critical to the successful development of effective policies and practices.
Knowledge Areas
MCH leaders will demonstrate a working knowledge of:
- The definition of family-professional partnerships and the origin of the family-centered care perspective at the individual, organizational, and systems level.
- The principles of family-centered care in MCH policies, programs, or clinical practice (e.g., home health model of primary care).
Skills
Foundational. At a foundational level, MCH leaders will:
- Solicit and implement family input in the design and delivery of clinical or public health services, program planning, materials development, program activities, and evaluation. Also, understand the importance of providing compensation as appropriate for such services (e.g., honoraria, paid staff, consultants).
- Recognize the importance of providing training, mentoring, and opportunities to families, youth, and community members to lead advisory committees or task forces. Further, recognize the importance of seeking training and guidance from these groups.
- Demonstrate family-centered philosophical constructs (e.g., families and professionals share decision making; 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.
- Assess and tailor recommendations to social, educational, and cultural issues affecting the family.
- Celebrate individual/family diversity and provide an open and accepting environment.
- Recognize that organizational and system-level policies and practices may impact CYSCHN and families.
Advanced. Building on the foundational skills, MCH leaders will:
- Establish effective relationships with family-led organizations to build and deepen family involvement across all MCH programs.
- Use feedback from family, youth, and community-members obtained through focus groups, surveys, community advisory boards, and other mechanisms as part of the project’s continuous quality improvement efforts and to monitor and assess the program overall for effectiveness of family-professional partnerships.
- Ensure that family and community perspectives are included in MCH research, clinical practice, programs, and policy (e.g., in community needs assessments, processes to establish priorities for new initiatives or research agendas, or the development of clinical guidelines).
- Assist health care professionals, organizations, and health plans to develop, implement, and evaluate models of family-professional partnerships.
- Incorporate family-professional and health home models of care delivery into health professions and continuing education curricula, and assess the effect of this training on professional skills, programs, and policies.