- Starbright Foundation for Seriously Ill Children - http://www.starbright.org/
Empowerment Programs and chatrooms, videos, comic books and cd-roms. Topics: school re-entry, coping with hospital life, radiation therapy; reintegration after burn injury.
- Chronic Illness: New and Old Ideas to Care for Children - http://cdrc.ohsu.edu/oscshn1/medicalhome/docs/med_home_final_grand_rounds.pdf
Slide show by National Center of Medical Home Initiatives for Children with Special Needs explains two new options: Chronic Care Model and Medical Home Project.
- What is a Chronic Illness? - http://endoflifecare.tripod.com/kidsyoungadults/id23.html
Explains to children what their ill friend or relative experiences and what they can do themselves.
- Care Coordination Guidelines for Children - http://www.medicalhomeinfo.org/resources/Downloads/CCGuidelines7-01.doc
Florida Department of Health Children’s Medical Services Network describes family centered care, integration of care coordination. Includes assessment steps, tips and ideas and forms.
- Children and Grief - http://www.aacap.org/publications/factsfam/grief.htm
Discusses how children handle grief and loss and which signs indicate they have difficulty coping (AACAP Facts For Families).
- Coping in Parents of Chronically Ill Children - http://www.ajj.com/services/pblshng/pnj/onlinece/12547557.pdf
Assessment and Intervention Strategies article in Pediatric Nursing describes parent stressors, coping assessment tools, nursing assessment tools and a framework for intervention.
- Shared Vision - http://pediatrics.aappublications.org/cgi/content/full/105/1/S2/277
Complete article (also as PDF) on longterm needs, financial and medical planning.
- Dealing With a Health Condition - http://kidshealth.org/teen/your_mind/problems/deal_chronic_illness.html
Explains teenagers how to cope, to take control, deal with others.
- The Child With a Long-Term Illness - http://www.aacap.org/publications/factsfam/illness.htm
AACAP Facts For Families describes the risk for developing associated emotional problems as the child must must cope with a disease that is here to stay and may even get worse.
- Living with Childhood Illness and Disability - http://www.cshcn.org/resources/living.cfm
Resources page by the Center for Children with Special Needs includes handouts on safety, Disability Act, school preparation, the Internet.
- Bandaides and Blackboards - http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/
Supports kids, teenagers and adults on dealing with growing up having a medical problem. Kids are advised on dealing with teasing, what to expect in a hospital and how to play pranks. Teens are offered expert advice, poems and encouraged to share stories, for instance. Adults may find ideas to tell the class, to deal with siblings, to learn to cope with illness. Also demonstrates how to correctly respond to any child with a medical condition.
- Youth in Transition - http://www3.bc.sympatico.ca/steeksma/Medical/transition.htm
Article on transitions in youth with chronic health disorders advises their caregivers in assisting to gradual independence and self-management.
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