Families as Partners
MI F2F HIC works to strengthen the role of families as partners in the delivery of health-related services to children and youth with special health care needs (CYSHCN). Family-centered care is critical in improving the quality of care. It is important for providers to understand the needs of all families, including those in underserved racial, ethnic and geographic communities. Families should be seen as partners in the process.
Partnering should involve strong communication, trust and shared decision-making. Families and youth should be included in all aspects of their child’s medical care. Partnering can also include working with professionals to improve services, programs and policies. Often professionals may ask parents and family members to help efforts to be more family-centered by serving on advisory boards or committees.
The resources below will help you partner with providers and other health professionals. Whether you are interested in impacting just your own services or services within your community, region or state, sharing your voice and perspective is important.
Resources to help families and youth partner with health care providers and other professionals:
Tip Sheets from Family Voices
The following tip sheet from Family Voices will help you partner with your child’s doctors and other providers. These partnerships will help your child receive the best healthcare. This tip sheet will help you prepare for an office visit, talk with your child’s provider and learn more after the visit.
Partnering with your child’s health care insurance also helps improve health outcomes. The following provides tips to help family member meet with their child’s health plan to discuss plan policies for CYSHCN and how partnering with families can make a difference.
Tips to help families build effective partnerships with their child’s healthcare providers.
National Institute for Children’s Health Quality (NICHQ) Guides
Communication Matters: A guide for sharing information about a child’s care. The guide includes information on rules and laws that govern privacy and confidentiality of patient information. It has resources including sample forms and policies for properly sharing information. Includes guidance on building and maintaining trusting relationships that support respectful communication and optimal care coordination.
Family-centered medical homes encourage a partnership between medical staff and the patients’ families. One way to improve family-centered care is to invite families to assist with evaluating, planning and improving the practice. Family Health Partners can play an integral role in improving care. This guide helps engage the family perspectives in improving a pediatric practice. Includes handouts for families who want to be part of this process.
The following is another guide created by NICHQ. It is intended to help both family members and healthcare professionals work together as equal partners to improve care for CYSHCN. Collaborating as equals may be new for family members and providers. This guide includes information and guidance on how to get the most out of this powerful partnership.
Center for Medical Home Improvement (CMHI)
Primary health care improvement is now very focused on the patient centered medical home. CMHI knows that this is truly about the patient and family centered medical home. There are many family stories and reports that family centered care makes a difference. CMHI has demonstrated that family participation and engagement improves a medical home and when a primary care medical home is patient and family-centered, outcomes improve for families.
A guide for parent and practice “partners” working to build medical homes for children with special heath care needs.
This Learning Guide is designed to assist families and others in their education about the basics of “medical home”. It also suggests specific activities one can use to strengthen their medical home or advocate for stronger primary care services.
Institute for Healthcare Improvement
The Institute for Patient- and Family-Centered Care has released Partnering with Patients and Families to Design a Patient- and Family-Centered Health Care System: Recommendations and Promising Practices.
This publication, with funding support from the California HealthCare Foundation, is based on the deliberations and key recommendations that emerged from a unique meeting convened by the Institute for Patient- and Family-Centered Care in collaboration with the Institute for Healthcare Improvement and funded by the Robert Wood Johnson Foundation. Includes examples of best practices drawn from organizations that are making exemplary progress in partnering with patients and families to enhance quality and safety and to improve the experience of care.
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Institute of Medicine
In Patients and Health Care Teams Forging Effective Partnerships, the authors provide insight into how, by including patients and families as active participants in the health care team, the movement toward team-based care can be enhanced. The discussion paper, published by the Institute of Medicine (IOM), builds upon previous work regarding the core principles of team-based care in order to help achieve three aims of better health, better care, and lower costs.
National Academy of State Health Policy
Ensuring and coordinating services that support young children’s healthy development requires strong and effective partnerships between families and health care providers. This brief puts forth a three-part framework for engaging parents in supporting healthy child development: parents engaging with: 1) their child, 2) the services and programs they receive, and 3) the larger systems and policies that govern those services. It describes each level of engagement, explains why each is critical to improving care coordination and services for young children, and gives examples of how states can incorporate parent partnerships into their work. The framework represents a dynamic structure in which the three types of partnership support and inform each other.
Serving on Groups that make Decisions: A Guide for Families
Serving on Groups is intended to be a useful tool for anyone who is currently serving, or wants to serve, on a decision-making group. This can include parents, students, educators, administrators, and community members. It was researched, developed, and written collaboratively by a broad stakeholder group of statewide agencies, school representatives and family members across Wisconsin. The result is a guide that focuses on a specific skill set using research-based strategies while being broadly applicable to a diverse audience for a more effective and robust decision-making group. The resource was published by the WI Family Assistance Center for Education, Training, and Support (WI FACETS).
The Center for Children with Special Needs: Becoming a Family Advisor
As a parent you have much to offer, teach, and share. You bring unique experiences, perspectives, and expertise. Everyone benefits when families and providers work together to improve healthcare, education, and community life for children with special health and/or developmental needs. Provides general information and guidance on what’s involved in becoming an effective family advisor, no matter what setting you choose.
Creating and Sustaining Effective Hospital Family Advisory Councils
Published by the Lucile Packard Foundation for Children’s Health, this report presents a checklist, tips, and strategies for establishing effective family advisory councils in children’s hospitals. An accompanying fact sheet includes strategies that are applicable to both pediatric primary care practices and children’s hospitals.
MeasureUp: Tools and Resources to Measure Program Impact
Created by the Build Healthy Places Network, MeasureUp provides communities, pediatric practices, family advocacy organizations, and state agencies with tools and resources to measure their programs’ impact on child and family health. This resource can be particularly useful to organizations implementing and enhancing pediatric medical home neighborhoods.