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eCLIPPs Home Go to eCLIPPs Cases MedU Home Culture in Health Care Culture in Health Care Home Culturally Effective Care Resource Community Culture Health Beliefs Resource Health Status Resource Medical Culture Resource Provider Perspective Resource Language and Communication Resource Doctor-Patient Interactions Resource Community Review of Systems Resource Shared Decision Making Tool Using an Interpreter Tool Self-Reflection Tool Family Centered Partnership Family Centered Partnership Home Role of the Family Resource Person-First Language Resource Medical Interview Tool Helping Families Cope Tool Patient Education Resource Motivational Interviewing Tool Advocacy Tool Navigating the Health Care System Navigating the Health Care System Home Medical Team Resource Role of the Primary Care Provider Resource Medical Statement Resource Educational Services Resource Community Resources Resource Continuity and Transitions Tool Durable Medical Equipment Resource Financing Health Care Resource Instructors' Area CLIPP Home Support		The Primary Care Physician’s Role in Care of Children and Youth with Special Health Care Needs Pediatricians play an important role in the lives of all of the children and youth for whom they provide care, but have an especially important place in the lives of children and youth with special health care needs. Their duty to these children extends well beyond the confines of the pediatric office, and pediatricians must be able to provide both proper medical care to these children and to support their personal lives and the families that care for them. In the clinic or office setting, the pediatrician serves as the team leader and coordinator of health care. All children and youth will need some or all of the services, but those with special health care needs will be especially dependent on the pediatric team. Services may include: Well-child visits and physical exams for sports, camp, school, etc. Care for acute illnesses Management to identify risks for acute problems and to make plans to prevent their development. Referrals to and coordination of visits with other physicians and health care providers New prescriptions and referrals for services needed by all patients, including durable medical equipment, physical therapy, occupational therapy, speech therapy, and other needed health care services Referral to community resources and psychosocial support In order to coordinate health care for a child or youth with special health care needs, the pediatrician will write prescriptions for needed medications, provide letters of medical necessity, and make referrals for services needed. The pediatrician must work with the family to establish a plan to cope with emergency situations so that the family knows who to call and what to tell them. The family will need to understand how to reach the pediatrician as needed, be it by phone after hours or through the availability of walk-in appointments. Pediatricians also often create a bridge to community resources for the patient and their family and can link the family with a care coordinator or case manager through the hospital or out in the community to provide them with extra support. Pediatricians can also collaborate with social workers at the hospital or in the community to ensure that the family understands the resources available to them. Finally, a pediatrician must also coordinate with the school system or early intervention services. The pediatrician will need to write a medical statement for the child and fill out different medical forms associated with each of these plans, and may be asked to attend meetings to help write one or more of these individualized plans. More information on the pediatrician’s role in coordinating with the school system and early intervention services can be found on the Educational Services Resource Page. The pediatrician is also responsible to help the family gain access to community resources and psychosocial support. It may be necessary for the pediatrician to provide the initial contact to agencies providing certain resources or to act as a liaison between the family and agency. Psychosocial support for the child and family may include referral to a psychologist or psychiatrist or help with identifying a support group. Although ongoing support and coordination may be provided by a social worker or care coordinator, the pediatrician often plays a central role in helping the family to locate the proper services and connect with them. More information on community resources can be found on the Community Resources Page. Many resources are available to pediatricians to help them fill this important, varied role in the lives of children with special health care needs. The American Academy of Pediatrics provides information (http://www.aap.org/healthtopics/specialneeds.cfm) and scholarly articles (http://pediatrics.aappublications.org/cgi/content/full/115/2/507) concerning the pediatrician’s role in caring for children and youth with special health care needs. For the child’s developmental needs, the pediatrician can help the family to ensure that the child is in an environment where they can develop ongoing, secure relationships and feel a sense of belonging. The pediatrician must also work with the family to provide long-term, local supports and services for the child and the family, which may include: Respite care for family members, to help ease overwhelming responsibilities Nursing care to teach and support families as they learn to provide the specialized care their child needs after surgeries or in other special circumstances By supporting the family and helping to ease the stressful responsibilities that may come with caring for a child with chronic health care needs, the physician will be able to help the family feel comfortable supporting their child in their home. The American Academy of Pediatrics article, “Helping Families Raise Children with Special Health Care Needs at Home” may provide more detailed information on how to support families caring for children with chronic health care needs. It is important for the physician and family to remember that caring for a child with chronic health care needs involves more than simply caring for the child’s health. No matter what the child’s medical needs are, they also share the same needs as every other child, including social, emotional, and psychological needs. It is important for the child to feel like a child and to engage in age-appropriate social play and educational activities. Children need to feel supported and cared for, and must feel comfortable talking about their concerns and fears, not only for their health and future, but for anything that may arise. Relationships with peers can help children to learn social skills while also providing a source of entertainment and a support group outside of the family. It may also help for the child to have role models, possibly with their own chronic health conditions. Role models and peers give children confidence and encouragement, and will help them to enjoy life and reach for their goals rather than narrowing their attention in on the health conditions they also live with. While attending to health care needs, it is important for the pediatrician to remember the needs of children and families outside of the health care system.
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The Primary Care Physician’s Role in Care of Children and Youth with Special Health Care Needs