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April 2017Vol. 18, No. 2Tips for Caring for a Child With Special Health-Care Needs

For parents of children with special health-care needs, forming partnerships with the child's doctors and other health-care providers is essential to making sure all of the child's needs are met. The tip sheet, TIPS: Caring for a Child With Special Health Care Needs: Partnering With Your Child's Provider, which was produced by the National Center for Family/Professional Partnerships, is divided into four sections, each of which can help parents and caregivers better communicate with health-care providers and understand their child's diagnosis:

  • Preparing for a doctor's office visit—Lists suggestions on how to prepare for an office visit, such as searching for providers that meet the child's needs, being prepared to ask for special consideration, letting the provider know about the child's specific needs, and getting other family members to participate in key appointments
  • Talking with the child's provider—Lists ways to facilitate and improve communication between parents and providers, such as communicating openly, preparing to ask questions, helping the child build a relationship with his or her providers, asking questions without feeling intimidated, asking for reading material about the child's diagnosis, and more
  • Learning more after the visit—Lists ways to keep abreast of the child's health-care diagnosis and needs, such as reaching out to other parents; keeping copies of the child's records to refer to during future visits; seeking a second opinion, if needed; changing providers, if needed; and being persistent in finding the answers to the child's health-care concerns
  • Helping the provider help other families—Lists ways to help providers help other families and improve their practices, such as providing feedback; sharing information with the provider about meetings, parent groups, or community resources that may be of value to other patients; and getting involved in family advisory groups, where available

The tip sheet also lists the qualities of a family-professional relationship, including mutual respect, communication, commitment, equality, skills, and trust.

The tip sheet, TIPS: Caring for a Child With Special Health Care Needs: Partnering With Your Child's Provider, is available at (474 KB).