Coping With Chronic Illness: A Guide for Kids, Teens and ...



Coping With Chronic Illness:  A Guide for Kids, Teens and Their Parents

VALUABLE LINKS and INFO

Chronic illness and disease is a growing health concern for children and parents across the United States and around the world. Children and teenagers face various issues when living with a chronic illness that goes beyond management of disease symptoms. Having a chronic illness can be isolating for children and teens, as other classmates, friends and neighbors do not always understand the need for treatments. Changes in appearance, special services such as classroom adjustment in school, or the need for medications or medical appliances can all be aspects of managing a chronic disease. Many children and teens also face teasing and unwanted attention from their peers and, coupled with the stress of physical symptoms, this can be an extremely difficult time.

Parents of chronically ill children also are in the position of managing their own feelings about their child’s illness. They may see their child being teased or left out of group situations. They, too, must face the uncertainty that sometimes comes with disease, as well as supporting their child through medical treatments and doctor appointments. Parents face the added burden of coping financially through the sometimes extensive testing that takes place or they must deal with insurance companies in order to ensure their child’s medical needs are covered. Because of the recent rises in chronic illness of kids and teens, there are many support groups available for both young people and their parents. Families who deal with the pressures of chronic illness are now able to have access to resources, educational information, financial support, and networking opportunities for communicating with others who may be in a similar situation. While chronic illness is a complex health issue that involves both physical and emotional matters, families can find the help and support they need during this critical time.

Kids with Chronic Illness

• Children with Chronic Conditions: An explanation of some common chronic illnesses, their effects on children, and strategies for coping.

• Our Kids: An organization devoted to providing information and connecting those with disabilities or chronic illness. Email support, advocacy groups, and inspirational literature available.

• For Girls: Information about coping with illness and disability on a site that is just for girls.

• Brave Kids: Connecting kids with chronic illnesses through medical information, support groups, and camps for interaction.

• Bandaides and Blackboards: A site for kids with chronic illness offering several pieces of relevant information, such as what to expect in the hospital and how to cope with teasing.

• Kids Health: Health information on various topics of chronic illnesses that is geared for kids.

• Brain Pop: Videos for kids explaining several types of illnesses, some are short term, but many are chronic.

• BAM!: Body and Mind, a division of the Centers for Disease Control and Prevention, is a site explaining several types of illness to kids. This example is juvenile diabetes.

• Kids Quest: A site just for kids explaining certain disabilities and chronic conditions.

• JA Alliance: Resources about daily living, help at school and disease management for kids with Juvenile Arthritis.

Teens with Chronic Illness

• Dealing with a Health Condition: An article about what it means to live with a chronic illness and an explanation of coping mechanisms.

• The C. Everett Koop Institute: Personal stories of teens dealing with various types of chronic illness as a resource specifically for other teens.

• StarBright World: A social networking site for teens with chronic illness to connect with each other through online games, chats, and bulletin boards.

• Center for Young Women’s Health: A guide for teens about the impacts of chronic illness when planning for college.

• LD Online: A site devoted to providing information and connections for those managing learning disabilities and ADHD.

• Teens with Chrohn’s Disease: A website with information, recipes, and tips, plus an online community forum for teens suffering from Chrohn’s Disease.

• Ability Online: An Internet community for young people with disabilities and chronic illnesses to connect with others in similar situations.

• Experience Journal: Promoting the healthy coping of children and teens affected by chronic illness through stories, pictures, and personal essays.

• 2bme: A site devoted to teens dealing with cancer, including practical advice about social circles, skin and hair care, and nutrition.

• Teen Health: An outline for teens about living with a disability or chronic illness through various aspects such as school, family relationships, and more.

Parents of Chronically Ill Kids and Teens

• Center for Effective Parenting: An article about how parents can help their child cope with a chronic illness.

• Cincinnati Children’s: Tips for coping with chronic illness as well as resources for support and advocacy for parents.

• Rest Ministries: Offering support for parents dealing with a child with a chronic illness with free articles, podcasts, and daily devotions.

• Adolescent Mental Health: An article explaining some of the psychological complications of chronic illness in teens.

• Parents Helping Parents: An online resource providing support and information of parents with children who have chronic illness or disease.

• The Fathers Network: Stories, photos, and resources specifically for fathers of children with chronic illness.

• Understanding Children and Chronic Illness: Helping parents to cope and assist their child with the emotional aspects of chronic illness.

• Chronic Illness: Statistics and information for parents of the chronically ill child.

• Healthy Children: Help for parents of children with chronic illness and methods for coping.

• Understanding Teen Years: A guide for parents about empathizing and understanding the behavior of their teen with chronic kidney disease.

• Chronic Illness and Teenagers: What parents can do to relate with their child who is suffering from a chronic illness.

• Morgan Stanley Children’s Hospital: The potential psychological complications of children and teens coping with chronic illness, including body image issues, relationships with others, and developing independence.

• Idaho Department of Health and Welfare: An article examining the effects of chronic illness in a child on a family.

• Partners in Health: A brief overview of chronic health conditions in children and how it affects the family. Help and referrals for New Hampshire residents are also available.

• Chronic Illness: An article explaining some information about children and families coping with chronic illness.

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