Resources for Parents
NICHQ values the involvement of patients and parents in all the work that we do, recognizing that their experiences and input is critical to improving children's healthcare.
Toolkit for Families of Children with Special Healthcare Needs - General Tools and Tips
This kit provides general tips and tools for families as they navigate the health care system. These tips come from some of the suggestions made to service providers during quality improvement learning at the Improving Systems of Care Learning Collaborative, conducted by the National Initiative for Children’s Healthcare Quality. These also may be useful to family members as they journey through life with a child with special health care needs.
Click here to go to the toolkit.
Powerful Partnerships: A Handbook for Families and Providers Working Together to Improve Care
This guide is intended to help both family members and healthcare professionals who are working together to improve care for children with special healthcare needs. Joining together in multi-disciplinary teams, family members and providers are increasingly working as equal partners to improve care. 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 potentially powerful partnership.
Click here for e-book format
Click here for PDF format
Read related stories about parent involvement on improvement teams:
Cristin Lind's Story
Bringing the Parent Perspective to Quality Improvement
Family Information Toolkit for Obesity Prevention and Control
NICHQ worked together with the teams from NICHQ’s Learning Collaborative "Healthy Care for Healthy Kids: a Collaborative to Prevent, Identify and Manage Childhood Overweight," sponsored by Blue Cross Blue Shield MA, to develop a toolkit to assist families and clinicians in providing quality care for children who are already overweight or are at risk for overweight.
Join NICHQ's Childhood Obesity Action Network for FREE to gain access to innovative resources, discussions, conferences, trainings and updates in Childhood Obesity News.
Family Leadership Resources Available in All States for Children and Youth With Special Healthcare Needs
NICHQ partners with Family Voices, a national organization aiming to achieve family-centered care for all children and youth with special healthcare needs and/or disabilities (CYSHCN).
Through Family Voices, resources are available for families to connect with family leadership in their state, including Family to Family Health Information Centers (F2F HICs). F2F HICs are nonprofit family-run organizations that assist families of CYSHCN and the professionals who serve them. As of June 2009, all states will have F2F HICs.
F2F HICs are uniquely able to help other families because they are staffed by family members who have first-hand experience negotiating the maze of health care services and programs for CYSHCN.
To download a brochure with your state's F2F HIC contact information visit the Family Voices Catalog.
Resources to Develop and Expand ADHD Management: Tools for Parents
Following the 2001 Learning Collaborative on ADHD, NICHQ, in conjunction with North Carolina's Center for Child Health Improvement and the American Academy of Pediatrics, developed "Caring for Children with ADHD: A Resource Toolkit for Clinicians." This toolkit bears the results of NICHQ applying sound principles of chronic care management to ADHD cases—namely, involving families in a total care program, tracking the results of our studies, using evidence as the basis for establishing guidelines and coordinating care among various caregivers.
Access "Caring for Children with ADHD: A Resource Toolkit for Clinicians" and receive Parent Information and Support.