Division of Child Development and Rehabilitation Children's Hospital of Philadelphia Philadelphia, PA
Optimizing Care for Young Children with Special Health Care Needs was written to support medical providers for children with special health care needs (CSHCN) with effective resources to achieve high-quality care for their patients. It uses a multiperspective approach in educating providers, including commentaries from leading child health experts as well as parents of CSHCN. The book uses a noncategorical approach to address issues related to caring for CSHCN and identifies not only well-established practice guidelines but also emerging trends and areas where further research and policy development are needed.
The book has been divided into 4 sections. Section I provides background information, including the evolution of the definition of CSHCN, tools for identification of CSHCN, and demographic estimates of the population. It provides an overview of policies and programs, including education policies, family assistance services, cash benefit programs, and health insurance programs, currently in place to support CSHCN and their families. Each overview contains a brief description of the policy or program, information on eligibility requirements, and services provided. Finally, the section closes with a chapter on financial matters, including the financial impact of caring for CSHCN on families, providers, and society.
Section II discusses the family's experience in caring for a CSHCN. It discusses the psychological, social, and cultural perspectives that can affect parents when trying to incorporate a CSHCN into the family. Stresses associated with caring for a CSHCN are also described, with attention to gender and cultural differences specifically addressed. The section's final chapter also provides perspective on the specific roles family members can take in caring for their child with a disability, including advocating for their child, finding and maintaining information on their child's specific health needs, and connecting with and supporting other families.
Section III discusses the concept of the medical home, introduces the chronic care model, highlighting the team approach, and provides information on coordination of care, family involvement, and financial and mental health considerations. Future implications for policy change to improve care for CSHCN are also discussed. Case management focuses on 3 critical components: clinical care, resource management, and patient and family education for self-management. The section concludes with perspectives on communicating information about a child's disability to their family and family coping strategies.
Section IV, titled Present Strategies Future Directions, highlights research on the acquired knowledge of parents and caregivers of CSHCN. It discusses parental coping strategies, through initial classification, care coordination, and stigma management. It also addresses providers' roles in supporting parents, by appreciating and acknowledging the child's special needs, referring for specialized care when necessary, increasing self-education about the child's particular conditions, communicating with and empowering parents, and becoming advocates for policies to support their patients. The section concludes with a chapter addressing future research and policies related to CSHCN. Specific emphasis is paid to research and policies related to improving access to care, including both access to health insurance and appropriate service providers, as well as improving quality of care, through use of evidence-based practice, quality measurement and improvement efforts, and health information technology.
Optimizing Care for Young Children with Special Health Care Needs provides a good basic summary of current policies and research related to caring for CSHCN, but it cannot give in-depth coverage of the many complex issues caregivers and providers face. Written from both the parental and provider perspective, it could be a useful resource for primary care providers, trainees, or educated parents seeking general information on issues related to caring for their special needs child. However, readers will likely find themselves seeking additional resources for more specific information. Future editions should include a resource list with pertinent websites and reading materials for more in-depth coverage of specific topics.
Disclosure: The author declares no conflict of interest.
Amanda E. Bennett, MD
Division of Child Development and Rehabilitation
Children's Hospital of Philadelphia