Community Resource Audit-Parents Whose Children Has Cancer

By Lauren Becker

LIS 601-202

Dr. Burns

Background on Childhood Cancer• About “12,400 children and adolescents

younger than 20 years of age are

diagnosed” in the U.S. every year

• Most children are affected by“brain, blood-

forming tissues (leukemia), lymph system

(lymphoma), sympathetic nervous system

(neuroblastoma), and kidneys (Wilms

tumor)”

Stress on Parents• Treatment- have to mention possible side effects

• Parents worry about harming their child

• Post-Treatment: Little Support

Information Behavior• Author Helen Fisher analyzed 8 studies and found

parents thought information was lacking.

• Some parents ignored information; most were found

to want as much information was possible.

Doctor Relationship• Parents would rather doctors admit not knowing

something.

• Health care professionals have to “put aside the

arrogance that prevents true partnership, and

recognize that it is the parents who are constantly

living with their child's condition who are the experts

on the intricacies of the child's illness” (Fisher, 2002,

p. 606).

Sources of Information• Parents want answers from doctors- but sometimes

have to force it. They want more time with hospital

staff

• Other sources: library, internet, other parents,

support groups

Pro/Con of Support Groups• Study of support groups for parents whose kids had

traumatic brain injuries

• Information can cause distress

• Stress management can help ease distress

The Internet• Donald O. Case writes: “libraries rank fifth as „first-

choice‟ source of cancer information, with the first

four sources being the Internet, followed distantly by

books, health-care providers, then magazines”

• Not always accurate information

• Need reliable sources offering assistance

Ethical Issue• Parents have the right to deny treatments

• Health care professionals have to focus on child

• Child is ultimately the one who the information

benefits

Needs Assessment: Evaluation Method

• Questionnaires followed by personal interviews

• Questionnaires given to both parents if applicable

• Example: You have enough time with your child‟s

doctor to answer questions

• Circle: Completely Agree, Somewhat Agree, Do

Not Agree, and Not Applicable

• Use this to form questions for personal interviews

Data Analysis• Statement questions will be added up by numbers-

see what parents most felt

• Unique statements will be coded by key

words/phrases

Impact of Results• See if it parallels previous studies concerning

parent/doctor relationships

• Will hopefully lead to better, more specialized

studies

• Gives libraries and other information professionals a

way to help parents

Finding Information• Sources- hospitals, libraries, etc. – need to have

easy-to-find information.

• Information needs to be updated, credible