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Children with Chronic Conditions: Impact on Families

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Chronic medical conditions in children can cause challenges for families, communities, schools, and the health care system. Chronic condition is a broad term, and usually refers to a health problem that lasts over three months, affects a child’s normal activities, and may require frequent hospitalizations, medical visits, or home health care. Chronic conditions may affect a child’s physical, emotional, or intellectual well-being and include asthma, epilepsy, and sickle cell disease, as well as such conditions as obesity, autism, and developmental disabilities.

Parents, siblings, and caregivers often find it stressful to live with and care for a child with a chronic condition. The financial drain related to cost of care and therapies may be extensive. Family dynamics can be disrupted when the child requires more time than the other children and special equipment, medications, and other adaptations. Parents may find their relationships with each other are strained, and siblings may feel they are being neglected or left out. On the other hand, families may also find that the child brings special contributions to the family that enrich their lives and strengthen family bonds.

This teaching strategy is designed to help students understand the impact caring for a child with a chronic condition has on family members and family life. Students can refer to one of the pediatric simulation cases, or to families encountered in an inpatient or community clinical experience. If students are unfamiliar with the simulation cases, and have not had appropriate clinical experiences with children with chronic conditions, an alternative option would be to refer to a family they have read about in a book or seen in a movie. (Examples of books include Wonder by R.J. Palacio, The Baking Life of Amelie Day by Vanessa Curtis, and House Rules by Jodi Picoult; suggested films include The Fault in Our Stars, Lorenzo’s Oil, and My Sister’s Keeper.)

Students will be required to engage in the literature on children with chronic conditions and investigate online resources available to families with specific problems and needs. Students can use these resources to complete this teaching strategy (faculty may choose one or both activities, depending on learners’ needs):

  1. Demonstrate an understanding of the impact of a chronic illness or chronic condition on the child and family by creating an original story told from the perspective of the child, sibling, parent, or other family member. This story could be in the form of a monologue, play, poem, or video – or other format the student prefers.
  2. Discuss the ways the nurse could intervene and assist this family, considering the family’s social and economic background and the role of an interprofessional team.

Children with Chronic Conditions: Impact on Families

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