Increasing numbers of children with complex medical conditions are living at home. An upcoming article in the May 2015 edition of Pediatrics provides insight into how pediatric practices can offer “self-management” supports to increase families’ skills and confidence in coping with chronic conditions on a daily basis.
In a 2012 survey, families of children with special health care needs identified care coordination as their top priority. A new fact sheet provides a concise summary of the key elements necessary for a quality system of care coordination.
In an ideal world, children with complex conditions would be served by a single, integrated health and developmental service system. In the absence of such a system, Edward L. Schor, MD, proposes creation of state-authorized Assessment Centers to assess children’s needs, create a care plan, make referrals and provide follow-up reviews.
Life Course Theory, which promotes a life-span approach to an individual’s health, is taking hold in adult medicine, but adoption has been slow in pediatric practices. This paper proposes a framework to help pediatric practices become life course settings for children with special health care needs.
Pediatric care coordination is more talked about than done, given the challenge of providing “a patient- and family-centered, assessment-driven, team-based activity designed to meet the needs of children and youth while enhancing the caregiving capabilities of families.” Very ambitious. It’s not surprising then that families, who bear the brunt of absent or failed efforts to coordinate care, find it necessary to step in as the principal care coordinator. Here are some ideas of how to support them.
In an essay that includes her fantasy of an ideal Boot Camp to train parents to be advocates, Juno Duenas, long-time executive director of Support for Families, suggests that parents become the partner they would like to have: informed and educated, with healthy inner resources and a really good sense of humor.
For young people with special health care needs, transitioning to the adult care system can be complicated. Thirty-nine states have websites to help youth and families with planning and support. California is not one of them. This brief outlines key components that a state-specific site for California might offer.
In 2009, the Lucile Packard Foundation for Children's Health commissioned a study of the experiences of families in obtaining care for their children with special health care needs. While the multitude of challenges families face is well documented, this study was unique in that it sought to identify patterns of experiences through observations and interviews of a small subset of families. The researchers developed six models of experience. In 2013, stakeholders were systematically interviewed for their responses and reflections on the six models. The findings from this second study strongly support the notion that the models have the potential to contribute to achieving a better understanding of families' experiences, potentially leading to system improvement.
Public health nurse Janine Woods has an insider’s view of the unique challenges faced by foster children with special health care needs—and the social welfare and medical professionals trying to help them.